Miracles Wanted

A Birthday and a Flash Flood of Emotions

2011-09-29T14:57:00.001-07:00

People often tell me I'm a very strong person. Internally I tend to not agree with them as I feel like I'm falling apart much of the time. I am disorganized, forgetful, impatient and a bit of a mess. But over time I have come to realize that I can be pretty strong. It takes a lot of mental effort for me to get out of bed every day knowing that I'll be greeted with a) a crying little boy who is in so much pain for which there is no help, b) an energetic pre-schooler who just wants as much of my time and attention as I can give him, c) a cat who thinks the whole world revolves around her need to drink water from the faucet, d)a busy workday full of twists and turns, e) a house full of clutter and dishes and footprints and shedding hair, f) all kinds of other things I'm too tired to think of. But I do it. I get out of bed every morning and throw myself into the task of getting Oliver as happy as I can as quickly as I can so that I can get ready for work and help Tobin with whatever he needs. I get the boys to school, usually spend another 20 minutes trying to calm Oliver down and then I'm heading into work.

I'm physically and emotionally exhausted by 9:30am every morning. But I do it, again and again and again. Often with a smile on my face, usually with a laugh and a high five for the adorable toddlers on my way out of the daycare. Those cute little faces remind me so much of the life Oliver won't get to have. They are walking and talking and learning their numbers. Some of them are potty training. One of them pointed at me today and asked me "where is Tobin?". Complete sentences! Amazing. Things a normal two year old should be doing, things MY two year old should be doing. I am good at allowing these thoughts to quickly enter my brain and then I push them aside just as quickly because wallowing in the misery that is my reality is just not acceptable for a functioning life.

So, yes, I'm strong. I can leap over typically developing toddlers in a single bound and I can speak frankly when other parents look at Oliver's ankle braces with a question in their eyes. I can come home from work every day and greet my boys with a hug and a smile and set right into getting dinner made, doing dishes, preparing Oliver's keto meals for the next day at school and hearing about Tobin's fun apple experiment that he did with his preschool class. But, sometimes, I break down and cry. This can happen at any moment, in the car on the way home from dropping off the boys or late at night while I try to fall asleep.

Last night, as I got into bed I looked at the clock and realized that if Oliver were going to have a seizure, it would probably happen sometime in the next hour. So I lie awake, listening to every little noise coming from the family room, tensing my body when I would hear him roll or move. I just couldn't let myself sleep thinking I'd be soon awakened to a seizure. As I was lying there, my thoughts were drifting and I remembered the day we learned he had CDG, and how I was sitting in the hospital room holding him. He was 5 months old and so sweet and innocent and I learned that his life would never be how I pictured it. I listened to the doctor for over an hour, trying to understand CDG, not shedding a single tear. When she walked out of the room, I put Oliver in his bed and I broke down and cried. That helplessness, that feeling of utter heart break, it comes back to me sometimes when I'm lying in bed at night trying to fall asleep. I can't stop it. It comes in waves and I have to cry and cry until I'm all cried out. And then I go and sit and I look at his gorgeous face and just try to put myself back together.

I don't know what prompted my sadness last night, I've been doing ok for a good while now. I think it's that his 2nd birthday is approaching so quickly. I haven't even bought him a present. I'm just thinking to myself that I'd rather forget about his birthday. Is that terrible? Other parents who have children with complicated medical disorders celebrate every day, every week, every month with their children. Some kids with CDG aren't expected to live past age 3 (which is really a crock, most doctors don't know much about CDG and just say that). So shouldn't I be celebrating his 2nd birthday with balloons and confetti and a 9 piece brass band? I just get stuck on the fact that Tobin was potty training on his 2nd birthday, and doing puzzles, and eating cake, and all the other things that normal 2 year olds do. Meanwhile Oliver still can't do so many things. He's never once tasted birthday cake because he started the keto diet before his first birthday. He can't open presents. Any toys we bought him he wouldn't be able to play with. He doesn't need clothes because he has so many wonderful things from his big brother. What do you buy for the boy who can't do anything?

Maybe it's good to have super sad days to get everything out so that the other days we can be strong and positive and full of hope and inspiration. And maybe, someday, Oliver will get to eat birthday cake. It will be chocolate, of course, and I bet he will smile big when he tastes it.

Tough times and some good news

2011-08-29T08:13:00.000-07:00

Oliver had a rough week last week. For the past month or so his seizures have been increasing to every 2-3 days. We had asked our keto team what the next best step would be…I wanted to decrease his diet ratio to 3:1 because I think maybe he does better at a lower ratio. He's been on the diet for almost a year now (WOW!) and they say their bodies get better at making ketones the longer they are on the ratio...also...small babies/little kids do better on a lower ratio most of the time. The keto experts wanted us to try increasing the fat content and going to the 4:1 ratio since we were already so close and since it would be best to force the extra fat content on him from the 3.5:1 ratio rather than going up from 3:1 ratio. So we started on Sunday August 21^st and it didn’t go very well. He didn’t eat much and when he did he just threw up the food. From Sunday to Wednesday he successfully held down one meal (220 calories!). He would not drink. He was lethargic and dehydrated. I had to pick him up early from daycare because he would not eat/drink and was crying all day. I brought him home, gave him some apple juice (not allowed on the diet) and some pedialyte and he instantly perked right up. The nurse said she didn't think he was too far into ketosis, or experiencing acidosis but I treated him as though he were. Whether it was that or just dehydration, the juice did the trick. After a few days I decided to put him back on the 3.5:1 ratio. We talked to the keto team and they agreed to keep him at 3.5:1 for now and repeat his blood work (which we did on Friday) and then talk to our neuro regarding next steps. We’re waiting on blood results now but I just think a lower ratio would give him some GI relief and maybe allow him to eat better and put back on some of the weight he’s lost.

On Friday we took him in for a GI scope to see what’s going on and if we could shed any light on his discomfort. They did biopsies so we will have the results on Wed /Thurs of this week. So far our GI doc has said his esophagus and bowels look fine but there was some inflammation in his stomach , which could be the source of the discomfort. For now we are increasing his zantac dose and hoping that being back on the 3.5:1 ratio will help him be more comfortable. My hope is that they let us try the 3:1 ratio. Even if it doesn’t help the recent seizure increase , my hope is that it will help him to be more comfortable, have fewer GI issues, and maybe gain some of the 2-3 lbs back that he’s lost. Also, while he was under the anesthesia, they removed his big toenail on his right foot since it’s been ingrown for a long time now and constant soaking/ointment/bandages have not fixed it. So at least he has some relief there!

Yesterday was the best day he's had in awhile and oh boy were we excited. He's an adorable baby even when he's crying and angry, but when he's happy there is nothing better in the world. The old saying "smile and the world smiles with you" certainly applies to our little Ollie. He brings us so much joy in his happy moments, his smile and laugh are contagious. He was eating pretty well and drank a bunch and I really think that made the difference. It's terrifying to think this diet may not be the miracle we were looking for, but in my gut I feel that we at least need to try lowering his ratio to get him more comfortable and eating and drinking better. Even with his increase in seizures I'd rather him be comfortable and seizing than miserable and seizing. Despite the increase in seizure activity he's making slow and steady progress.

Oliver is a rolling machine! He laughs! He smiles! He listens intently when I sing him silly songs! That alone is worth the struggle with the diet.

We started vision therapy a few weeks ago and we're working on creative ways to get his eyes engaged and focusing more. We also received some great news from EI, Oliver's equipment has been approved and in just a few weeks we will have a stander and a high/low seat for him to use at home (for feeding, therapy, sitting, etc). We are thrilled, and even though it took much longer to go through this process it also means we don't have to pay anything additional over our monthly EI contribution! I can't wait to get Oliver standing up and checking out the world.

Goodybe Reglan

2011-07-28T14:38:00.000-07:00

Well we trialed Reglan for almost a full month and decided to take Oliver off the med. After a great first week he ended up eating less, being fussy more and having long bouts of inconsolable crying. He's still not eating great OFF the Reglan but he is MUCH more happy, comfortable and able to enjoy life. He has had 7 clusters of seizures so far in July, and we're not pleased with that number but we're hoping it's because of the Reglan and that things should settle down soon. If not, it could be the decreased calories because he hardly eats, the higher ketones we've been seeing, or something else entirely. Back to the guessing game!

A night in the life of Epilepsy

2011-07-16T07:58:00.000-07:00

2:50 am: I hear a scream coming from the family room, where Oliver sleeps on the couch. Did I imagine it or is he having a seizure? I wake Jason and ask him if he heard anything. He didn't. A few seconds later I hear it again. We both jump out of bed and run to the family room where Oliver lays with his right arm stiff , convulsing.

2:51 am: I scoop Oliver into my arms and whisper "I"m sorry". I repeat this over and over again for the next five minutes. What am I sorry for? That he's having a seizure. That he was awakened from a peaceful sleep by a seizure. That I can't fine tune the diet well enough to stop the seizures. That doctors don't know which meds, if any, would help our son. Most of all, I'm sorry that I have a gene in my body that's been passed down through generations and generations resulting in Oliver having CDG. Isn't that silly? I had no idea, I had no control over this. But if Jason and I had somehow known we were carriers and that our children might be affected, well, Oliver might not be here to suffer like this.

2:56 am: I look at Jason and tell him "I'm really scared, he's been non stop shaking for over 7 minutes now. Get the Clonazepam".

2:58 am: Jason returns with Oliver's "rescue med" which is really just a benzo that his body is fairly used to and will likely help calm his brain but take 20 minutes to do so, it's our best bet at the moment though, to give him some relief.

3:00 am: Oliver is still having spasms , shaking in between. With each spasm he yelps like a wounded animal and lets out a little cry. Whoever says seizures don't hurt our kids has obviously not sat with Oliver in their arms while he seizes.

3:03 am: Oliver is still shaking but the spasms are smaller and getting further apart. I'm still in tears, sobbing and wondering how I'm supposed to do this for the next 10-20-30 years. I start apologizing to Oliver again. For things beyond my control, and things I think I should be able to control. I glance into my bedroom to make sure Tobin is still asleep and has not been disturbed by his brother's screams. Tobin is still sleeping on the air mattress on our floor most nights. He says he doesn't like to sleep upstairs in his room alone while we are downstairs because he gets scared, but I think it's really his way to be close to us since we spend so much of our time taking care of his brother.

3:10 am Oliver is still shaking and I contemplate calling an ambulance. With this new diagnosis of LGS I don't know what the protocol is. Wait it out or call for help? Then I think they probably wouldn't be able to stop the seizures any sooner. So I wait.

3:20 am: Oliver's spasms are few and far between and the general shaking seems to have subsided. He looks incredibly exhausted and sleepy. I hand him off to Jason to blow my nose and get a drink of water. My throat is raw from crying and my eyes are bloodshot. I look at myself in the mirror and think I've aged 3 years in the past 30 minutes.

3:25 am: Jason lays Oliver down to change his diaper. Oliver rolls to his left side which is his signal that he wants to go to sleep. Every 30 seconds another spasm rocks his body and he jerks awake, then settles back down.

3:30 am: Oliver's spasms seem to be gone and he is sleeping again. I notice the cat is almost out of cat food so I fill her bowl. I put away some clothes I had folded earlier in the evening. It's amazing how much our lives just "snap back to normal" once the seizure passes. Jason and I talk about the seizure Oliver just had and how it compared to the other ones we've had this month. We wonder if it's from the Reglan we started a few weeks back. Jason says "I hope it is, because the alternative is that his seizures are increasing/progressing because of the LGS".

3:35 am: We turn off the lights and crawl back into bed.

3:50 am: Tobin wakes up crying and asks to sleep in our bed with us. As he crawls in I grab him tightly and apologize to him as well. He asks "what for?". I tell him: "For everything".

LGS

2011-07-14T13:21:00.000-07:00

After recently talking with our neurologist's office, we learned that Oliver's seizures and EEG pattern have progressed from Infantile Spasms with hypsarrthmia pattern to a slow spike and wave pattern consistent with Lennox Gastaut Syndrome (LGS). LGS is a devastating childhood epilepsy that can continue into the teen and adult years. Seizures come in many forms, can be hard to control and the constant background chaos in the brain leads to severe learning and developmental disabilities.

When Oliver first developed infantile spasms we were told he might never have another seizure disorder beyond Infantile Spasms, or they may progress into other seizure types/seizure disorders. At that moment, we had to hold on to the hope that our battle with IS would someday end and we would never see another seizure again. When Oliver was diagnosed with CDG, we were told he would likely always have seizures and that it was much more likely that his IS would be hard to control. IS that is uncontrolled generally turns into another seizure type down the road.

We started the ketogenic diet when Oliver was 11 months old, hoping that by the time he reached the age where IS turns into other seizure types (18-36 months usually), we would have things well under control with the diet and thus avoid other seizures types. As we went on with the diet, seeing improvements but not seizure freedom I began to feel the clock ticking faster and faster...against us. When we went in for our most recent EEG I had a feeling we'd get some bad news at the outcome. Somehow the "mommy intuition" never fails me even though outwardly I am hopeful and optimistic. I suspected all along, however, that some day we'd hear the words "LGS" in relation to Oliver's EEG.

So now we move forward, knowing that our son has just been given a life sentence for seizures. No matter how much we can help him to have fewer seizure episodes, he'll always have them. This chaotic brain pattern which can be worse than hypsarrthmia, will stick with him for a long time making every thing in his life that much more of a struggle. He's still our little guy and we'll continue to do every thing in our power to help keep him comfortable. And now that he's been given a pretty grim prognosis it means that each little inchstone he achieves will be that much more of a victory.

To read more about LGS: Click Here

June

2011-07-01T14:07:00.000-07:00

Oliver did pretty well during the month of June. Back down to 3 big clusters for the month, which is much better than May so we're pretty excited. He did have some questionable seizures, small startles, staring spells and a possible complex partial seizure as well but we're still waiting to hear back about his latest EEG.

We started Reglan for his delayed gastric emptying last Saturday. So far we haven't seen a big difference in his eating or cranky episodes so we're not sure it will work. Luckily he hasn't suffered from any major side effects, so that's good.

He started July out with a bang and had a huge 45 minute seizure this morning that continued well after the administration of his rescue med. We'll see how the rest of the month goes, too early to tell if it's related to starting the Reglan or not.

Developmentally he's made some small strides, or "inchstones" as we like to call them. He has been doing a great job with our speech therapist, Emilie, trying to bring a rattle into his mouth when he's holding it in his hands. It's just the one rattle so far, so we have to go to Kohl's and see if we can find the exact one she brought over. It was so great to see him doing this though! He's also started to vocalize more and seems to be "taking turns" talking with us when he's in a vocal mood. He is just as smiley and cute as ever when he's happy and when he's cranky he gets very sad, but is still adorable.

We have both been very busy at work and Tobin is enjoying summer being here so that he can go to the pool and the beach and get Italian ice down the street!

The Waiting Game

2011-06-15T14:58:00.000-07:00

Today we met with our neuro to talk about Oliver's recent weaning of meds and next steps with the diet and seizure treatment. We shared with him that February, March and April were kick ass months for us because of reduced seizure activity and that May and June have not been so great, mainly because of the increase in clusters since fully weaning Vigabatrin. Oliver had a 25 minute very intense cluster yesterday that stopped about 5 minutes after his rescue med was given at school. Scary and it really knocked him out for the rest of the evening :(

However, because the seizures haven't increased too much, the neuro believes there isn't any reason to medicate right now. If we had gone from 3 clusters per month to 20 clusters per month, we might consider adding a medication or going back on his previous Vigab dose. But since we went from 3 to 6...he still considers Oliver to be doing "very well" and doesn't think it's worth adding a med for a little bit of benefit when it would come with very big side effects. I tend to agree with him but still feel like a quitter for saying it's ok for Oliver to have seizures, as long as he doesn't have too many. Though we can all agree he's shown great alertness and awareness since coming off the medications and I wouldn't trade those smiles for anything!

Oliver was actually awake in his appt and in a good mood for the first half (the 2nd half he spent crying in his stroller while Jason pushed him around the waiting room). The doctor got to see all his new moves (he rolled both ways! he held his head up while lying on his tummy! he smiled! he laughed! he had more spontaneous movement in his arms and legs!).

Unfortunately our most recent EEG report was not ready and in the system waiting for him (we expected it would be as it usually takes a week and the EEG was a week and a day ago) , so now we wait to find out how much worse it looks compared to before when he was having fewer seizures....hopefully we'll find out very soon as it may change our decision to not medicate him at the moment.

Will post back when we know more!

June

2011-06-10T14:36:00.000-07:00

We've had a lot going on in the past several weeks, hoping to figure out some answers for Oliver with his GI issues. After lots of phone calls and appts we finally got Oliver in for a gastric emptying study and determined he does have delayed gastric emptying. Basically the food sits in his stomach much longer than it should, and that is why he's never really hungry and also explains a lot of the reflux and GI pain he suffers. The full report is being sent to our GI doctor and then we'll find out next steps when we meet with him again.

Oliver also had an overnight 24 hour VEEG (Video EEG) this week. He did a great job but didn't have many of his staring spells while hooked up so I don't know that we'll actually know if those are seizures or not. He did have several of his small little random jerks and startles so it will be nice to see what types of seizures they are. He didn't have a big cluster while hooked up, which was expected because he never does...and because he was having a really good streak. Prior to today, his last big cluster was May 26th. Unfortunately, today the daycare called and said he was having a bad/long cluster and they were giving him Clonazepam to stop it. But this was his longest streak between big clusters since before he started the diet so that's good.

Oliver has been consistently rolling over just with his upper torso and always to his left side but it's a bit of progress. He also has been smiling a ton lately, which we're very grateful for. his bath chair arrived last night, woohoo! So we're excited to see if that helps him enjoy baths more. it will certainly make bath time easier on all of us.

next steps...

2011-05-16T13:14:00.000-07:00

Oliver's seizures are increasing. We are holding our breath waiting to see if they will settle back down or if we will have to make a change to his diet or med plan. We finished the Vigabatrin on 4/28 and since then he has had 5 clusters of spasms, numerous random spasms and jerks at night while sleeping, staring spells before going to bed and some convulsing/shaking for 30 seconds or so randomly throughout the day. Aside from the big clusters of spasms, we're not sure if any of the other things are seizures or not but we're assuming they are.

Oliver did so great during his med wean but that last dosage drop seems to have really thrown him for a loop. I don't know if it is his brain protesting the last bit of the drug that we took away or something else. We have our next neuro appt June 15th and will be doing an overnight EEG just before that on June 7th. We will then plan our next step in the fight against seizures.

I got to a comfortable place. I was ok with his 3 clusters per month, happy to be taking steps toward more therapy and feeling confident in everything we could do to make him as happy and comfortable as possible.

Today I feel angry, frustrated and defeated. I feel bitter that I spent the weekend photographing and listing all of the baby gear and toddler gear for sale. Items that Oliver should have used like his exersaucer, bumbo seat and baby carrier that couldn't be used because he lacks head control. Tobin's old push car with a handle that we used to take him out for walks with. Oliver was supposed to be riding around in that this summer. He was also supposed to get Tobin's tricycle now that Tobin has outgrown it. All of those items were sitting in storage, taunting me every time I passed by them. I know it's healthier for me to get them out of the house (and maybe make a few bucks towards Oliver's savings account) but I can't help but think of the life that we imagined we'd live. Instead, we received a parking placard for our rearview mirror, to allow us to park in the handicapped spots when Oliver is in the car with us. It's official, the State of Illinois has granted our son "disabled" status. While the placard will certainly make it easier for us to get him out of the car and into his stroller or wheelchair, it is a concrete reminder that Oliver really isn't developing at all on the physical side. He's over 19 months old now and still can't hold his head up, sit, or roll over. Increased seizures on top of that are just not what we need right now.

We have a few options at this point. We can give his brain more time off the drug to see if it will settle down in the coming weeks, we can go back up to the small nightly dose of Sabril we were on before we lost control or we can increase his diet ratio. There are drawbacks to all of these options and I'm not sure which choice will be the right choice.

Once again I find myself angry that no one has answers for us, not even the experts. Epilepsy is totally unlike any other disorder because the brain is such a mystery. There isn't one solution for every situation. there are dozens, maybe hundreds of options/med combos/diet tweaks etc. It is mentally draining spending your whole day going through every little thing your son has eaten, drank, the time he ate or drank, what time of day he had his supplements, etc etc etc. I am tired. I am over it. There is still a long road ahead of us and some days I just don't have the strength to keep going. It's a lot of pressure as a parent to try and be your child's doctor, nurse, therapist, cheerleader, chef, teacher...when all you want most is to just be his mom.

Keto Appt

2011-05-06T13:44:00.000-07:00

We had our 3 month keto appt yesterday. No changes to the diet for right now. Oliver had blood taken (he was not a fan of the process) and we'll know in about a week if he has any levels that are too high or low or of concern. He also received another vaccination and we've been told after his chicken pox vaccine in a month he'll be caught up on all the big stuff (pheww!). He slept through that shot, how nice!

Not much else going on, knock on wood but we're fairly stable with the same level of seizure activity, development, etc. Just trying to live life and enjoy some of the increased sunshine of late. It's wonderful!

May!

2011-05-02T14:24:00.000-07:00

We made it through the month of April with only 3 clusters of seizures to record...but we were very nervous we wouldn't be able to do so. Oliver's last cluster was the 19th of April and we thought his clusters were getting closer together again. On 4/25 we saw single spasms throughout the morning so I gave him his first bit of Clonazepam in over 3 months. Just a 1/4 of a pill to see if I could head off any impending cluster. It seemed to work because Oliver did not have any clusters that day or during the rest of April!

He has , however, started May out with a bang. I woke up last night at 1am and I could hear Oliver yelling during intervals up in his bedroom. I finally came out of my sleepy fog enough to realize he was having spasms and woke Jason up to see if he though it sounded like a seizure. I don't know how long he'd been seizing and I feel awful that I may have left him up there seizing for more than a few minutes. The spasms were mild and not as close together when we brought him downstairs so I can only assume he had already been seizing for a good 5-10 minutes. We were nervous it had been going on for awhile so we gave him half a Clonazepam to settle him down and he eventually did , and was able to go right back to sleep immediately. He slept in our bed all night, because we were both so nervous about not hearing him. Luckily, Tobin didn't make his usual trip down to our bed!

I keep hoping this current bit of seizure activity is related to the end of the Vigabatrin wean and that Oliver will settle down in time and continue to see great seizure control in the coming months.

He's had a very rough weekend, lots of fussiness and crying (hopefully wean related) so we are all a bit tired today. The diet continues to be going well and we're even getting a lot of his therapies in now that he's more awake during the day.

Keto Tips

2011-04-21T08:07:00.000-07:00

Someone on our keto diet group mailing list is assembling a list of tips for new parents starting the diet. She goes to Johns Hopkins and is acting as a parent advocate for other parents who are beginning their keto journey. I emailed her a list of my tips this morning to add to her handout for new parents but I thought I'd post them here as well for anyone about to embark on the wild roller coaster that is the keto diet:

My tips:

1. Supplies:
- masking tape and sharpies (for labeling pre-made meals quickly and easily).
- Gerber bowls: http://www.amazon.com/NUK-Gerber-Bunch---Bowls-Colors/dp/B000RFC3BM/ref=sr_1_1?ie=UTF8&qid=1298911571&sr=8-1
- good spoon shaped spatulas (I got mine at home goods)
- 2oz and 4 oz portion cups from costco or restaurant supply store

2. Foods:
- Don't make it a huge challenge for yourself the first weeks by trying tons of different recipes and experimenting. choose 2 simple dishes for each meal and alternate between them to first get your child into a good consistent level of ketosis and know that there are only a few ingredients that can be affecting the diet at first (keep it simple with whole foods, real fruits and veggies and only 4-5 ingredients per meal at most).
- Don't be afraid to give yourself a keto cooking break once in awhile and just use the ketocal formula or simple meals like eggnog. If you're rushing or going out to eat and you want to make it easier on yourself, these are great quick solutions.
- cook in bulk on the weekend. We make all our meals and elements of meals on the weekend so during the week we only spend about 10 minutes per day doing keto assembly (or weighing out fresh cream for the bottles,e tc).

3. General tips when starting the diet:
- Set a goal for yourself that is realistic. Don't expect "seizure freedom" from Day1 and don't be surprised if things get worse before they get better...treat the diet like a med in that sometimes you have to titrate up to the right "level" before you see good results.
- Don't make your goals related to just seizures...include things like increased awareness, development, attitude, etc and the ability to wean off of 1 or all of your seizure meds as a goal as well. This way you can still achieve something even if you don't get seizure freedom right away.

And my biggest tip of all: DON'T CARRY THE KETO WEIGHT ON YOUR SHOULDERS ALONE! Enlist a partner, husband, wife, mother, brother, sister, neighbor or cousin. Get 1-2 other people educated on the diet and have them ready to pitch in once in awhile with the cooking, meal prep, recipe invention etc. It's so helpful if you come down with the flu or have an off week or if you're just so sick and tired of weighing out cream and oil and butter to be able to take a break.

Weekend Update

2011-04-17T15:42:00.001-07:00

Here's some photos of the past weeks....

Pictures soon, I promise!

2011-04-14T13:57:00.000-07:00

We have the ankle braces and the vest! Insurance won't cover the hip helpers so the rehab clinic gave us the measurements so we can order them ourselves out of pocket. They are essentially stitched up shiny bike shorts and only cost about $15 so it's no big deal for us to buy a couple pairs on our own...

I will get some pictures of Oliver in his new kicks as soon as we buy him some big boy shoes this weekend and then I will post...

Today we had our stander fitting at RIC. We're getting this stander: Prime Engineering Super Stand in bright shiny candy apple red! The diva in me wanted the violet purple...the mom in me thought blue was more appropriate for a boy...and the mother to a special needs child with vision issues decided that bright red is best since it's the first color babies can see beyond black and white. It will probably be a long time before we receive it but I'm very excited!

Oliver was very fussy and cranky due to some GI discomfort when they placed him in the stander, so I spent most of his first time standing trying to soothe and comfort him...it was probably a good distraction because it brought me to tears to see him standing. I was so happy to see him standing and so sad at the same time that he even needs a stander. Very bittersweet moment. Luckily Oliver's crying and distress served as a great distraction and didn't allow me to wallow in my own misery. Smart boy!

We also test drove some chairs and will be placing an order through EI for a feeding/therapy/general hanging out chair very soon.

Oliver's ear infection is clearing up and he has been having a pretty good week aside from a seizure on Tuesday.

Spring is Here!

2011-04-12T09:30:00.000-07:00

We've finally been able to get the boys outside at the park and enjoy some warm spring weather. It's been such a relief to get fresh air and sunshine! Oliver has been doing really well in the stroller as opposed to last spring/summer when he cried nearly all the time. It is nice for us to be more confident in bringing him out with his brother.

Oliver has his first ear infection since getting his tubes in. The nice thing about the tubes is that the ear just starts discharging all the gunk so we knew right away that it was infected and started the drops. Also, since he has the tubes to drain everything out, there was a lot less pressure in his ear during the infection so he never really got fussy or spiked a fever. It's so nice to be able to diagnose something in our son quickly and easily and start a treatment right away!

Oliver is now the proud owner of some ankle braces and a Benik support vest for his trunk support. We are building up his tolerance to the ankle braces by having him wear them for an hour more each day until we get to the full 8 hours. This weekend we are going to go shopping and buy him his first pair of shoes to fit over the braces, then we can start some weight bearing exercises! Thursday he'll be fitted for a stander, very exciting.

Eyes

2011-04-04T14:35:00.001-07:00

I have been thinking about Oliver's eyes lately. I hate that he can't see. It might sound like one of the more minor issues considering everything Oliver has to deal with, but developmentally it really limits us.

When we first chose Vigabatrin for him as a medication we were told the risks would involve a decrease in retinal vision with long term/high dose use. I remember thinking "so what?". If it cures the spasms and gets rid of the IS, I can give up some vision. So what if he has to live in a city and ride public transportation instead of driving...so what if he needs a seeing eye dog? Those dogs are cute! I didn't quite grasp at the time that it wouldn't be his total vision but just his peripheral vision that was affected...I also didn't consider blindness to be that severe of a disability in general if he still had cognitive abilities and was physically able to walk, dress himself, etc.

Now as we're faced with accepting the fact that Oliver is going to be severely impaired both cognitively and physically, it seems rather unfair that he doesn't at least get the gift of vision. I think so many of his setbacks come from the fact that he can't see. Why should he roll over? what's tempting him on the other side, if he can't see a toy, a ball, mom, dad or brother? Why should he reach for a toy if he doesn't know it's there. How can he grab a cup and take a sip if he has no idea it's sitting in front of him? We asked for a vision evaluation from EI quite awhile ago. After months of hearing that they had no record of the paperwork we finally confirmed that our coordinator did submit the paperwork and that the vision therapists were going to contact us soon. It's been over a week since that promise. I , once again, have to pick up the phone and start bugging people. It's very frustrating. Hopefully we can get his vision eval sometime this month!

We received a referral from our developmental pediatrician to an organization called Lekotek. They have adaptable toys for impaired children and I'd love to know what they have that might help Oliver.

We did recently have another ERG to check retinal function. The results are similar to the ERG we had back in July 2010 and October 2010. They don't think his eyes are being affected negatively by the meds as of this point. That's good news and we hope that continues. In the doctor's note she mentioned nystagmus (which we knew about), IS (yup), CDG (yup) and exotropia (HUH?!?!?!). Apparently exotropia is a strabismus, or a turning of the eye. I have heard of CDG kids having this, but never Oliver. We'll have to ask her about it at our next appointment. In the meantime I've been researching the various diagnoses Oliver has been labeled with and found this great blog written by a young woman who has had nystagmus her whole life. It's interesting to hear about it from the perspective of someone who has grown up with it since birth. Click here to read more about it: The Shifty Eyes Blog

Seizure wise we were able to close out both February and March with 3 clusters each month. That's 6 clusters in the past 2 months. That's really low for Oliver, meaning we cut his seizures in half (at least) and the past 4 seizures haven't required any rescue meds. This is such great progress and is so encouraging to us to continue weaning his medications and plugging along with the keto diet.

So far for April our seizure cluster count is: ONE. we're only 4 days into the month so I'm hoping that he won't have many more but we are in the final stages of our Vigab wean and I know this could be the roughest part of it. This morning he was just off, and I could tell he'd be having a seizure at some point during the day. I was not surprised to hear my phone ringing 15 minutes after I left the daycare this morning with the report that Oliver was seizing. Today's seizure was a bit different. He had a ton of general whole body shaking throughout the 10 minute cluster of spasms. My poor boy. He goes through so much.

Tomorrow he has his 18 month checkup at the pediatrician. I assume our Dr will want to continue our efforts to catch Oliver up on the shots. I know he needs at least one more of the pentacel and the prevnar...I also know 18 months is generally the time our practice likes to give the MMR. So we'll likely do one shot per month for the next three months and then see what else we have left to give. I hope the shot does not derail our recent level of seizure control.

After the dr's appt we have a visit from a developmental therapist from EI. I'm not sure what developmental therapy entails but I'm excited to find out.

On Friday we go into RIC to pick up Oliver's AFOs, hip helpers and Benik vest. Then we'll be ready to do some shoe shopping to find REAL shoes that will fit over his ankle braces. I am so excited to get him standing a bit more now that he'll have the proper support. Fingers crossed there won't be any insurance hiccups that prevent us from getting the equipment!

I will try to get some updated pictures of Oliver with his new stuff and post them after the weekend.

EI Meeting

2011-03-30T14:52:00.000-07:00

Our EI meeting went fairly well as we are going to start Oliver on more therapies and see how he tolerates them. He'll have PT and OT once per week each and then Speech twice a week with one of the sessions focusing on feeding. We are also going to have him evaluated for vision (finally, should have a phone call by the end of this week) and by a developmental therapist. We'll be meeting with a social worker once per month to help navigate resources available in the city/state.

A year ago , when Oliver was diagnosed, I never would have imagined a meeting in which I blatantly discussed the disabilities of my child and what we can do to make it easier on all of us. Even as I was sitting in the meeting looking around at all of the therapists, I was thinking to myself "I can't believe this is my life". It took a lot for me to be positive and ask the right questions and write down the tasks I need to complete without breaking down into tears.

I am learning more about navigating the special needs world and I'm finding that a lot of it is unfair. Kids that need so much receive so little. It really amazes me. I hope that we're lucky enough on our journey to get what we need for Oliver with minimal fighting but I think many things will be a battle.

The good news is that Oliver's bath chair has been ordered. The bad news is they never did order more supportive seating for him for meals and therapy. So we're going to go through the physiatrist at RIC and see if she can help us at least get him fitted for all of the equipment he needs and then we can try and order it through EI even if it takes a long time to arrive.

He has been fairly stable health-wise and we are so grateful for that. He's been teething up a storm and now has 12 teeth! The seizure count is lower the past 2 months and we're hoping that trend continues. We have about a month left on Vigabatrin and then he'll be seizure med free. We're crossing our fingers we can get to that point and see how he does without meds. During the wean we were hoping to see more alertness and strength. I'm a bit disappointed that we haven't as it means that a lot of his delays are likely caused by the CDG and not so much the medication. We'll see how his next EEG looks, hopefully he'll have one in the next two months.

On the GI front things are about the same though he seems to be doing better having bowel movements every day or every other day without help from suppositories. This is since starting the carnitor supplement. We hope to try the motility meds in May and see if that gives him the relief from the awful reflux that keeps him unable to eat most foods.

Tobin is happy, healthy, thriving and looking forward to warmer weather so he can go to the park and the beach. We consistently have temps in the 30s and we're all ready for spring to finally arrive!

ENT, ERG, AFOs , OH MY!

2011-03-24T13:37:00.000-07:00

Oliver had his one month checkup at the ENT. He had an audiology screening to do the hearing test. They were unable to get the thing working properly in his right ear but his left ear passed the newborn hearing test again. They couldn't do the other tests because he's not 7-8 months developmentally :(

They recommended we do an ABR (sedated hearing test that measures what the brain processes through the ears) if he is to be sedated for any reason, perhaps when he's closer to 2 if we do a repeat MRI. His ear tubes are in and look fabulous. His ears look very clean and healthy.

He had his 4th ERG today to check his retinal function as required by SHARE while on Vigabatrin. NO changes since the last ERG and everything looks NORMAL! :)

We are just about 5 weeks from being completely off the Vigab medication so we're hoping that was our last ERG (maybe we'll do one more in about 6 months just to make sure everything still looks good).

GI Issues still there though he has some really good days with minimal crying (maybe 10-15 min fits instead of 3 hour long ones). We started Prevacid for the reflux in the am, while continuing Zantac at night just today so we'll give that about a month and then move on to the motility meds as recommended by the GI doc (we go back to GI on May 3rd).

Oliver should be getting a Benik vest, AFOs for his ankles/feet/legs and a hip helper on April 8th. On April 14th we go in to get fitted for a stander.

We have our annual EI meeting tomorrow afternoon and I will be asking again when our vision eval will happen (was requested a few months ago...apparently the place that does the evals is giving our EI coordinator the run around ), We also need to inquire about the bath chair and feeding chair we requested 4 months ago and ask for more services (would like speech and OT once per week and PT twice per week, along with feeding once per week). Wish us luck!

March Madness

2011-03-18T13:50:00.000-07:00

March is full of many appointments for us. This morning Oliver went to the Rehabilitation Institute of Chicago (RIC) where we see a great physiatrist. He was fitted for AFOs (ankle braces), a hip helper (basically bike shorts that keep his hips in line) and a Benik Vest (it's a neoprene vest to help give more trunk support). We were waiting for all of this through early intervention but it was taking way too long to get going. The physiatrist said they could do it all through their office and had us scheduled for fittings within two weeks! Now we hold our breath praying insurance will cover all of this cool gear. It is very vital for Oliver to have the support that his body cannot provide to avoid risky surgeries in the future. No baby should have to go through hip surgery!

Next week we'll be having our first hearing test since Oliver was born and then we will follow up that same afternoon with the ENT to check out the tubes in his ears and make sure they look good. Later on in the week he has his next (and hopefully last) ERG to check his retinal function as a part of the Vigabatrin prescription. It's required by the company that makes the drug because there is a known issue of kids having permanent vision loss when they take the drug in high doses for long periods of time. On Friday we'll finish up our week with a meeting with our EI team. The coordinator, physical therapists, occupational therapists and feeding / speech therapists will all attend to make plans going forward for Oliver's therapy. We're hoping to get everyone to agree that he needs speech/feeding and OT more than he currently gets.

March also has us continuing our Vigabatrin wean. Oliver is now on 250mg in the morning and 500mg at night. This is step 3 of our 6 step wean plan so we're about halfway done with our wean. Knocking on wood as I say this but so far we've seen about 1 seizure on average during each 2 week stage of the wean! Pretty good!

Oliver's development is still at a bit of a standstill though he does seem to have more moments where he seems very strong as we continue on the wean. He is able to get some good head lifts in while on his tummy though he cannot hold his head up for very long. His vision is still pretty bad and that bothers me a bit as I had hoped to see improvement as he got older. I have to keep reminding myself that he has a lot of chaos in his brain and that maybe some day it will get better.

His GI issues are still there but he has some good days. I think the Carnitor supplement has helped a bit and we have not had to use suppositories in quite awhile. We have a prescription for Prevacid we picked up but we haven't started using it yet because we are nervous it will bring the seizures on (it contains aspartame, a known seizure trigger). Once we get settled into this current phase of the vigabatrin wean we will try the prevacid in the mornings with the zantac at night and see if that improves Oliver's reflux issues. They aren't too bad but he squirms a ton while eating and we can only think it's reflux or perhaps the infant high chair that he has outgrown (still waiting on a feeding chair from EI, hopefully that will come along soon!)

Everyone else in the family is doing pretty well. Tobin moved up to his Pre-K classroom at school and is really thriving there. He loves his friends and his teachers. We all took a one night trip up to Wisconsin to a hotel and water park while Oliver stayed behind with Grandma Patti. Tobin loved the attention and the fast waterslides. Jason and I really had a great time being able to just focus on Tobin and playing without worrying about meds, meals or bouncing the cranky baby around the house.

We are looking forward to spring and walks outside and the chance to get Tobin to the park to burn off some of that four year old energy.

Sabril Wean Step 2

2011-03-04T10:11:00.000-08:00

Oliver had a great ear surgery. Did very well, no pain meds needed.

We met with a physiatrist and she is going to help us with some equipment and stuff for Oliver. Stander, Core/Trunk Support Vest and a hip helper to keep his hips from turning out all the time while he's laying down.

We dropped our evening Sabril dose last night and have now embarked on Step 2 of the Sabril wean....

A Momentary Lapse of Reason

2011-02-15T11:52:00.001-08:00

We're stumped. We've been battling Oliver's screaming/crying/miserable fits for too long now and we are just clueless on how to solve them. Despite all of our best efforts he still cries and screams for hours every day. We have a list of items that might be causing this distress and we're slowing trying to address them one by one in order to get him to a better place. In the meantime he is just an irritable, irrational and miserable little baby who looks absolutely adorable with his lower lip hanging out and a tear rolling out of his eye.

Teeth: Oliver only has 8 teeth and is a bit behind on teething for his age. Likely because he can't hold objects and put them in his mouth and doesn't spend much time chewing. I've started taking a rubber fingertip toothbrush and letting him gnaw on my finger after meals.

Gas: As always, Oliver suffers from intense/extreme gas pain. He was like this from birth to about 4-5 months of age but then did wonderfully until we started the diet. GI doc thinks it's motility issues and wants to put him on a motility med. We want to wait until Oliver is off the seizure drugs to see if he improves. He will also be starting a carnitine supplement as his carnitine levels are low. This helps the body process fats and we hope it will help his tummy feel better.

Reflux: Since starting the high fat diet, Oliver seems to have developed reflux. We don't see any outward signs of it other than his irritability and he's now started this squirming thing whenever we put him in his high chair and start feeding him. He is on Zantac but we're going to try Prevacid to see if it helps. In the meantime I'm setting up a 2nd opinion as our GI doc first told us Oliver had lots of room to increase the Zantac dose and is now saying he doesn't. Either way, he's miserable and we don't see why trying other reflux meds wouldn't be a good option since he's on a reflux med anyway...before introducing the motility med.

Drug Withdrawals: Oliver finished his last daily dose of Clonazepam about 2 weeks ago. It's a tough drug to wean and he's had increasing irritability since we dropped that last little dose. We hope he will be better in a few weeks but we also just started weaning Vigabatrin this past weekend and I'm sure the withdrawal from that is not easy either. If things go well, we will be off the Vigabatrin in 3 months. It's going to be a long 3 months if the wean is hard on him, but we hope once he's off all the seizure meds and just on the diet/supplements that we'll get to see Oliver's true personality. It's been such a long time since he started the meds I am both nervous and excited to see him off the meds.

Please think good thoughts for us as we really want to take him off the Vigabatrin but will not be able to do so if he has a ton of seizures crop up during the wean.

Oliver's ear tube surgery is scheduled for Monday, we have to call on Friday to confirm he has been cleared by neurology and hematology and get our surgery time. We are nervous and excited for this as well. No parent likes to see their child put to sleep and we hope there will be no complications during the surgery but it's supposed to be a simple/easy task and he's been under anesthesia before so we don't anticipate a problem there. Hopefully Oliver will be more comfortable , on antibiotics less often and maybe will be able to hear better.

We had an amazing feeding evaluation with a feeding therapist on Saturday. She and I spoke for about 45 minutes coming up with items on the keto diet that Oliver can try eating that will expand his ability to chew, swallow and strengthen his jaw and tongue. She said the motor planning part is there (yay!) but he's just weak (since he has extreme low tone, we knew that). At the end of the meeting Oliver woke up in a happy mood and hungry (rare for him on both counts) and we practiced chewing. He ate little bits of avocado, some cheese, and some cheerios. Then I quickly followed it up with a keto bottle to get his ratio right. The therapist was so pleased with how well he did and Oliver was pleased with himself too...at the next meal he refused the puree but when I put little bites of food in his mouth he happily chewed and swallowed. We just have to work on his endurance as he can only do a few small bites at a time and then often forgets to swallow it. The therapist has offered to take Oliver on rather than referring to someone else and we're very excited because she was great (and she will go to daycare to work with Oliver's teachers!).

We had a developmental evaluation, and ENT and a neuro appt last week so we're very sick of doctor visits for the moment!

A blog in photos: My Sundays on the Ketogenic Diet

2011-02-14T12:27:00.000-08:00

Macademia Nut Pancakes: 100 calories each!
Keto Eggnog: Eggs, cream, applesauce and coconut oil
Keto Countertop: the site of many keto recipe concoctions

Keto Cabinet: we store all of Oliver's meds, foods and stuff here

Holland, Amsterdam and all that jazz

2011-02-09T11:37:00.000-08:00

The Seizure Monster

2011-02-07T08:16:00.001-08:00

I know now why people call it the "seizure monster". After I became more familiar with IS and Epilepsy I joined some email groups and started reading blogs of other parents whose kids are similarly affected. They all referred to the "seizure monster". The idea of something taking over our children for periods of time and not allowing them to be themselves is terrifying. To look at Oliver's face while he is having seizures lately I know he is absolutely being attacked by a monster. His whole face distorts. These past few seizures this weekend are so much more intense that he's biting his own tongue each time, leaving bloody spots all over. His legs shake, his arms stiffen, he screeches and his eyes get wide. He looks like a monster. I know it's not him but the seizure that's causing the change but it is the scariest thing I've had to witness in my life. I think this means his seizures are changing and I'm not quite sure what that means for us....are the new seizure types going to be easier to control or more difficult?

We missed our neuro appt last Wednesday due to the blizzard (we were ready to shovel out and go but the hospital cancelled all appts for the day). So now we are waiting to hear a new date/time to go. The plan was to take videos in for the doctor to look at so he could see some of the new seizures we are witnessing. We are just hoping we can get in soon so we can form a new plan and get some guidance.

Oliver finished his clonazepam on Thursday night, and I'm hoping these seizures are withdrawal seizures and will settle down once the drug is out of his system...but of course we use the same drug as our rescue med for prolonged seizures and I've had to give him a full pill twice in the past 3 days. Also, if the seizures are changing then there may not be any reason to keep him on the Sabril since that's an IS drug.

I am getting closer to being at peace with having a child with such severe needs that he'll never feed himself, dress himself, hold his head up or crawl or communicate. As sad as that is, it's something I've been getting better at handling recently. But these seizures....I can't handle them. I just can't. They are so hard to watch. They are violent and painful and I cannot even begin to imagine how Oliver feels when they attack him. When Tobin gets scared at night and starts talking about monsters, I always reassure him that monster aren't real. They are only pretend and something people made up for movies and tv shows. But lately...I'm not so sure. There is a monster living inside of my baby and I want him to go away.

RSV, a blizzard and a pancake

2011-02-03T15:02:00.000-08:00

So we've had some eventful weeks lately. After spiking a fever last Tuesday, Oliver was seen at the pediatrician the following day and tested positive for the respiratory virus, RSV. After 2 breathing treatments at the doc's office, his oxygen levels were still low so they sent him to the ER. Tobin and I arrived to meet up with Oliver and Jason just as Oliver was getting an iv put in. Of course, our super deep veined baby was unable to have an iv placed, so all that trauma for nothing. After a couple hours of hanging out at the hospital they decided to admit Oliver because he's so incredibly medically fragile that nobody wanted to dismiss him without giving him lots of treatments to help him fight the virus.

After 5 days in the hospital filled with Respiratory therapy every 4 hours, Oliver was deemed healthy enough to return home...much to the dismay of Tobin who thoroughly enjoyed sleeping in the big bed with mom or dad , riding the bus to and from the hospital, taking the train to school and getting happy meals at the McDonald's in the hospital basement every night.

We are surely glad that Oliver fought and won his RSV battle last week because this week we had Chicago's 3rd largest snowstorm in history. In a mere 24 hours we received 20 inches of snow and experienced thunder/lightning, 70 mph winds and pieces of people's homes blowing down the street. We all weathered the storm (oh how I love puns) very well and had plenty of food and entertainment to keep us content.

While we were hanging around the house I decided to try a new food texture for Oliver. Being on the keto diet is a challenge because I like all in one, pureed meals for Oliver so that I am sure he gets every bite on the right ratio. But I want to expand his horizons and try new foods as well to teach him to chew. I decided pancakes might be a good idea.... but how do you make pancakes without carbs? grind up macademia nuts (high in fat and perfect for the keto diet), mix with a bit of egg, some oil , and a couple drops of unsweetened applesauce...and you have a keto pancake!

Oliver did great! He chewed and swallowed and didn't choke once. Because he is getting over being sick he has not been in the mood for food lately so he only ate a little bit of the pancake (but it was just a snack sized portion so it was ok to not finish it). I am excited to come up with some more new food ideas for the little guy.

Oliver had his neuro checkup yesterday but it was cancelled due to the blizzard. we are hoping to reschedule soon so that we can show the neuro some videos of Oliver's latest new suspected seizure type , talk about weaning the Sabril now that we're almost off Clonazepam (last crumb of a pill to be administered tomorrow night!), and figure out plans for going forward. We are wondering if we should have an EEG and then decide if we want to continue the diet or move on to a steroid based on results.

He has a developmental pediatrician appointment tomorrow morning. It's part of the early intervention program and we're hoping it will help us secure more services and equipment for him. It will be hard to hear the blunt truth about how delayed Oliver is. While we see it and live it every day, it's still hard to have discussions about it...even with each other.

Last night I was rubbing Oliver's back and he was just cuddled in bed next to me. These are my favorite moments..when he is calm and comfortable and soothed by my touch. I had a moment of being simultaneously so angry and upset for all he doesn't have while being grateful and feeling so blessed for how lucky we are. I hope this means I am moving past the stage of angry and bitter about all of this and will start to become more upbeat and optimistic about just loving Oliver for who he is and what he can do, rather than who he could be, should be and for all the things he'll never do. It's my ultimate goal in life to be more accepting and courageous and I am working very hard to see only the beauty in our lives.

Today Oliver is 16 months old. He has lived 16 wonderful months, and has been fairly healthy during most of them. His hospital time is limited compared to many kids with CDG, his seizures are far fewer compared to many kids with epilepsy. Despite some GI discomfort and trouble, he is overall healthy and content and a very easy baby. He sleeps wonderfully (perhaps because of his medications, but we count it as a blessing anyway), he enjoys being on his playmat, he lights up at the sound of his brother's voice and at the scratchy feel of his father's scruffy face, he laughs when you clap his hands for him, he will fiercely hold a spoon even if he's only drinking a bottle for dinner, he tries SO hard to roll over and wonders why his leg won't follow his upper body and then looks so proud of himself when you give his leg the final push it needs, he is the best cuddler of any other kid his age and he coos , sings, hums and babbles when he wakes up from naps.

At the time Oliver was diagnosed with CDG, a month after the infantile spasms diagnosis...I was the only one in the hospital room to hear it. I had to tell my husband that our baby had CDG and tell him all of the issues he would face because of it, that the seizures would be hard to control, that Oliver might not develop past the stage of a newborn and that he could have other complications and organ trouble down the road. He looked at Oliver and back at me and he said " But he's still ours". And that he is.

Going Tubing

2011-01-18T12:38:00.000-08:00

Oliver will be the lucky recipient of a lovely pair of tubes for his ears in the near future. After his 15 month checkup with our pediatrician we all agreed that 5 ear infections in 4 months is just too many...and they'll keep coming if we don't take some action. We have the name of an ENT and will be trying to get Oliver in to see him as soon as possible so we can schedule the surgery. I have heard it's a minor thing and takes about 15 minutes to get the tubes in once he's out so it should just be a one day stop at the hospital.

The 15 month checkup went pretty well, we will return on Friday this week to get a shot for Oliver. We are going to try and get him caught up on some of his vaccinations. The doctor recommended prevnar or pentacel. The pentacel has pertussis vax in it and I'm scared of that one as it's contraindicated for seizures. Since Oliver's seizures are still uncontrolled I don't feel comfortable administering the one shot that might cause a seizure reaction. Oliver is growing well and is now 25 lbs and 31.5 inches tall. head circumference is up a bit from last time but not too much, or too little so we're feeling comfortable with that.

He continues to suffer from his GI issues and is very uncomfortable most days. We are at a loss with what to do about it but are going to try probiotics and then speak with his GI doctor again if that doesn't help.

Tobin had his 4 year checkup and is doing very well. He's now 43.5 inches tall and 45 lbs! He had a great birthday party this past weekend:

Tobin's Birthday Cake!

Oliver has also been having what we suspect to be tonic seizures and absence seizures. We're not sure of either but they look a lot like seizures to us. We'll bring them up with the neuro at our next meeting in February. After a tough week long fever and ear infection filled with seizures and miserable-ness, Oliver appears to be feeling better and we've resumed our Clonazepam wean. On Monday morning we dropped his 1/4 pill in the am and now he is only taking 1/4 pill at night. In a couple weeks we'll discuss his progress with the neuro and see if we're ready to drop the last bit of the pill. Then hopefully we'd be on the path to drop the Sabril/Vigab. I am so ready to see what he can do without this med. He has been on it for so long I want to know what he is like off of it. I just hope he's different, and in a good way.

In between screaming fits, Oliver found some time to play the piano:

Oliver's Concert Debut

We were very happy to have family visiting this past weekend. We spent a night out with friends and coworkers, slept in a hotel and spent the morning sleeping and eating room service and watching stupid movies on tv. Heaven!

Happy New Year!

2011-01-02T07:59:00.000-08:00

It's been awhile since we've posted, but not much to report. We had a lovely Christmas with family and everyone was fairly healthy and home so that was great for us. Tobin and Oliver both enjoyed the time with mom and dad and grandparents. Oliver is still very cranky most days. We are sort of at our wit's end and not really able to figure out what is causing him to be so miserable. We think most of the time it's gas pain and pain from his body trying to process all the fat in his diet. There might also be some reflux going on and we're going to investigate with the GI doc again to see if we should try a different reflux med or increase the dose of the one he's on. We are just trying very hard to get through each day without breaking down in complete exhaustion and frustration. When he's happy he talks and coos and laughs and it makes us feel so hopeful again.

Oliver's seizures have been getting worse. I've honestly just about given up hope on the diet. Despite a few 10 day stretches without seizures while he is sick we are still seeing 7-8 clusters of spasms per month and now we suspect he is having at least 2 other seizures types as we see a ton of staring episodes and some episodes of generalized shaking behavior. While the clusters used to be shorter (under 5 minutes 90% of the time since starting the diet), the last few he has had are back up to the hour long really awful ones. Since starting the diet he's been miserable on the GI front as he screams/arches/passes gas about 4 hours per day now. His body just cannot process the fat without lots of pain.We're not sure if he would have the same amount of seizures off the diet and if they are back to lasting an hour while on the diet, I just don't know what the diet is actually doing for him.

We tried to move to the next phase in our Clonazepam wean this weekend, by dropping his morning1/4 of a pill. He had two awful hour long seizures on Thursday and Friday and we decided to go back to the 1/4 pill in the morning and hold there for awhile before actually making the next drop. We will check in with his neuro on Monday to see what he advises but after seeing those nasty seizures we are just nervous to make that change. the 1/4 pill in the morning might not be doing anything and the seizures could be from something else like teething or an ear infection but we just don't feel comfortable dropping right now.

Thank you to everyone for all of the amazing holiday cards, they were so great to receive. We also really appreciate the generosity of our friends, family and readers of the blog who have taken the time to send us money for equipment for Oliver. We received an ipad from family for Christmas and we are looking forward to buying some educational apps for Oliver to use in his development.

Friday Update

2010-12-17T14:18:00.001-08:00

Oliver is a bit under the weather, doesn't have much of an appetite and has been having some vomiting and diarrhea. We are trying to keep him hydrated as much as possible and hoping this passes soon. He had another seizure today, so that makes 5 for the month and while they are less intense I am a bit sad that he's had 5 in 17 days and worried December will close out with more seizures than November. I had resolved to believe that we would never get seizure free but I was hoping that each month would be about the same or better...it's hard when we feel like we're taking steps backwards.

Hopefully as the month continues on he will feel better and the seizures will come less frequently. It could also be because we're weaning his Clonazepam but I don't know how much that drug is actually doing for him. Going to keep weaning it anyway and see if he settles down eventually.

It's been nearly 10 months that we've been battling seizures, hypsarrthmia and developmental delays. Some days I wonder if this is just always going to be how it is. I can't believe he has had this chaotic pattern in his brain for 10 months, if not more. that's a lot of time to lose in terms of development...and that's only the epilepsy side. We have no idea how much of this is from the CDG and one of my biggest fears is that the CDG is causing so many of his delays and they'll remain even if we do get rid of the hypsarrthmia. The uncertainty is a bit paralyzing and when I stop to think about the very real possibility that his brain will never get a break it makes me so sad for his future.

I keep thinking so many kids push through this and come out on the other side and start making progress...and I keep waiting for it to happen in our house.

Tobin has his big Christmas show tonight. Oliver's class is doing a song as well, but since Oliver cannot hold or shake the jingle bells and is a bit under the weather he will not be participating. We are hoping he feels well enough to come with us to watch Tobin.

Very much looking forward to him feeling better and hoping this bug passes quickly (without involving everyone else in the house!)

Tis the Season of Weaning

2010-12-14T09:13:00.000-08:00

We're on to the next phase of our Clonazepam wean as of Friday night. Oliver is now only taking a half a pill per day (1/4 pill am, 1/4 pill pm). 3 weeks and we drop the morning dose completely. 6 weeks and we'll be completely weaned. Then on to the Sabril. We can't wait!

Oliver is handling the decrease fairly well, which reinforces the idea that his body was used to the drug and it was no longer as effective for him. He is done with his 4th round of antibiotics since starting the diet, hurray! Even though they claim there are no carbs/starches in the pill, we always see decreased ketones and increased seizures when he's on them. Since being off the abx we have seen good ketones so we are hoping to keep him healthy for awhile.

Today he had his 4th seizure of the month, which is a bit disappointing as we are hoping to see fewer seizures as the months go by. But we're still glad they are less intense than before and generally end before the 5 minute mark which is huge for him.

Winter has hit us hard and fast this year and it's a bit of a challenge getting 3 people bundled up and warm to head out onto the icy back walk way to our frigid garage. I am very much looking forward to spring even though it's so far away!!

long time no blog

2010-12-01T14:53:00.000-08:00

We've had a busy couple of weeks. The Clonazepam wean is going well. We will drop his evening dose to 1/4 pill on December 10th! Oliver had 2 seizures before the wean even started and 3 since the wean but overall they are shorter and less intense. We closed out the month of November with only 7 seizures (clusters of seizures). 6 of them lasted less than 5 minutes and the 7th was a whopper at 15-20 minutes. BUT, they used to last about an hour...so this is a huge improvement and possibly a sign that the diet is helping.

We increased Oliver's ratio to 3.5:1, so he receives even more fat in each meal. So far he is tolerating it well.

We believe the cause of his fussy/screaming fits is mainly GI related and gas. The GI doc said to try suppositories a few times per week to really keep him cleaned out and gas free. We are also going to be giving him prunes every other day to try and keep things "moving". We split his miralax dose into two parts and have already seen a bit of improvement. I don't think we can get rid of these fits altogether, at least not until he's off the diet and the fat content decreases but that's a long way off. We're going to try and keep him as comfortable as possible and cuddle him as much as we can when he's miserable.

Oliver has been very chatty and smiley lately and we're so thankful and grateful for that.

Changes are coming

2010-11-18T10:50:00.000-08:00

We start (well ..continue) our Clonazepam wean tomorrow. Very excited and nervous for that. In the meantime we haven't heard back from the keto team about changing Oliver's diet and he's doing fairly well right now that I don't really want to change it yet. Would rather wait at least one more week while we start dropping the Clonazepam. We also need to get Oliver back to having his daily vitamins and supplements. We stopped while he was sick because they made him gag and throw up. We need to re-introduce them but I also want to wait at least a week for that as well. I read online today that Oliver's calcium supplement (that we were told to use by the dietitian) has glycerin and maltodextrin and both can be bad for kids on Keto. Argh! So I'm really trying to figure out the absolute best supplements that he can take without triggering seizures. Without them he might have some health issues and we are trying to keep him as healthy as possible.

This is a great article in the NY Times about the keto diet, I suggest giving it a good read when you have a chance:

Epilepsy's Big Fat Miracle

I had a small breakdown this morning when I arrived at the daycare. Today and tomorrow are picture days for the kids. Tobin and the older children have theirs tomorrow. Today was babies, infants and young toddlers. We opted out of the photo package for Oliver because he is unable to sit on his own for the photos. We also can't guarantee he'd be awake for the photos and we all know he's not great at smiling or looking at the camera. So why spend $33 on crappy photos that remind us just how far behind he is. While I think it's the best decision I still felt my heart drop when I walked in this morning and saw a little girl , the same age as Oliver, sitting and smiling at the camera saying "cheeeeeeeeee!!!". Luckily I drove in to work today so I had a good 30 minutes to cry it out of my system before getting to the office. I know Oliver has lots of years to take school photos and it's very silly that a 13 month old needs school pictures anyway, but it's always something small and silly like this that makes me feel the worst.

Good News - Bad News

2010-11-16T08:18:00.001-08:00

The bad news: Oliver had a seizure last night.

The good news: It was the first one (we think) in about 10 days. That's Oliver's longest stretch between seizures since JUNE!

Unfortunately, as I witnessed, it looked a little different. He was sort of stiff and panicked looking holding his arms still and had about 10 spasms which I could only see in his face, not his body. I'm wondering if it was a new seizure type like a tonic seizure with some spasms in the middle. Either way though, we wouldn't change his course of treatment anyway, just keep trucking on with the diet and hope to see less of these as time goes on. He got fussy afterwards and it made me wonder if some of the times we hear him crying in his crib and run to get him....if he had a seizure prior to that and we didn't see/hear it. Since this one was more mild he was kind of wimpering but wasn't screaming like he used to with his spasms. So perhaps he has had more of these in the past few weeks and we just didn't know? Again, still won't change our course of action for now (wean the IS meds and keep on with the diet then re-evaluate med plans).

After his seizure he had a 30 minutes crying fit while Jason tried to get his meds into him. But then he did settle down and went back to cooing at us while we made his dinner. He's still not eating full meals some of the time , and now I'm wondering if it's the reduced calories that have been giving us the most seizure control we've had in months? Something to ask our keto team about.

We are very excited for Thanksgiving and the little break we'll have from work to hang out with the boys. We are hoping Oliver has continued health over the next few weeks so we can really work on his therapies. The alertness we've seen in the past 2 weeks while the seizure were reduced is so encouraging to us.

Our moods are directly tied to Oliver these days...when he's doing well we're all feeling optimistic. When he's not...we all get really down. Even Tobin is becoming more and more aware of just how much his brother has to go through. While he was having his seizures last night Tobin would not leave the room. I told him he could go play or watch a tv show but he said "maybe I'll just stay here in case you need anything for Oliver". it's so sweet and at the same time I want to shelter him from all the sadness involved with Oliver's diagnosis but I know that as he gets older he is understanding it all better. On our ride to school each morning he says "I hope Oliver doesn't have another seizure or a fever today". Such a great big brother, Oliver is so lucky to have him.

Drs Visits Flu Shots and Cranky Baby oh my

2010-11-13T06:44:00.000-08:00

We had a good visit with our neuro yesterday. He said we can start weaning the clonazepam again but to wait one week since Oliver is having his flu shot booster. Want to make sure any seizures activity can be attributed to the flu shot rather than the drug wean. He did offer us the option to wean the Sabril first but then after we all talked about it more we figured we'd get him off the clonazepam now, and then we can still use it as a rescue med and then later on, while weaning Sabril , if Oliver has some rough seizure-y patches we can do a 3 days small course of clonazepam to get him over the hump. We all feel comfortable with this plan. We'll give his flu shot a week to settle in and then next Friday drop him down to a quarter pill am/ half pill pm and do that for three weeks. clonazepam is highly addictive so this last bit of the wean needs to go verrry slowly. He doesn't think we will see a huge development boost when Oliver is off all the drugs but thinks it's important to take him off of both seizure meds and see what we can do with just the diet alone. Then, if we need another med we're only adding one med to the diet instead of one med on top of two others plus the diet. Hopefully the diet will be enough, but we're realistic in understanding that it might not.

We saw our pediatrician afterwards and Oliver's ears are looking better, we just need to continue the last 5 days of the amoxicillin and then he should be good to go. We mentioned our gastric emptying/delayed and infrequent peeing issues and how they seem to be slowly improving. He agrees with our plan to take him to GI doc and then just keep an eye on it. From talking to other CDG parents it seems like cyclical vomiting/GI issues are a side effect of CDG and it's probably made worse by the high fat diet and in times of illness.

His flu shot booster went fine , he drank a bottle during the shot and jumped a bit but didn't even cry.

He had 2 of his hour long cranky episodes yesterday which was disappointing because he was doing really great the past few days. He's having another one this morning. We're never sure what the problem is so we're trying mylicon and then after 45 minutes we try tylenol. I think it might just be gas or digestive issues but it's so hard to tell. Poor little buddy.

So we're going to hope for a calm week and then try our clonazepam decrease, hopefully things will go as planned!

Nervous Today

2010-11-12T07:26:00.000-08:00

Today we have two appointments for Oliver. The appointments themselves should be routine and easy but it's what's coming after that scares me. Everytime we meet with our neurologist we have a great talk, things are positive, we're feeling great.....and then later that afternoon or the following day Oliver will have awful seizures. Even if he's had a whole week without seizures, or a whole month without seizures...inevitably...every time we visit our neuro Oliver ends up having a really rough patch right after. Add this to the fact that Oliver has a flu shot booster scheduled at a the ped today and I'm a wreck. Last month he received his initial flu shot and woke up the next morning with a very intense seizure and then had some increased activity for about a week. I want him to be protected from the flu, and the shot itself doesn't worry me but I'm just on edge about this upcoming weekend. I don't even want to think, write or type it but Oliver has had a very good November, the best start to a month he's had since April, I think. So I am just feeling wary of the days to come and praying that we can handle the increase in seizure activity.

Oliver has been doing great the past few days. Whether it's the zantac helping keep food down better or the delayed emptying is improving now that he feels better and his ear infection is going away....I'm not sure. But he hasn't thrown up since Sunday and he is having WAY less cranky periods. When he does have them they are shorter. He is currently yelling and laughing and kicking his feet and this morning was really telling me a long story. This is the baby he could be all the time if we can get a break from the seizures.

CDG Conference

2010-11-11T09:21:00.000-08:00

I am re-posting a letter from the CDG Family Network. There is talk about a conference held next summer somewhere on the East Coast and if our schedules allow, we would love to try and go as a family to meet other families and hear from the world's experts. Hopefully the conference will NOT be the weekend of July 23rd since Kevin and Hanna have officially picked a date for their wedding, but if it's held in June or the beginning of July we'd love to go. They need money to make this happen. The CDG Family Network does not have a bank account to draw from for this type of event so all the families will have to work together to raise money. I'm considering talking to our local brewpub to see if we could host a fundraiser there. I'm not experienced with this kind of stuff but would really love to try and raise some funds for the conference so that it can actually happen. I've posted the address for donations below. If your employer is looking for charitable causes to donate to...perhaps they'd consider the CDG Family Network this year. Or, if you or anyone you know would like to donate just a few dollars, it would mean the world to us!

Dear Families,

Many people have expressed interest in a summer 2011 conference. In order to make that happen we must raise the funds for our conference -- that is up to all of us as parents, family members and friends. As many of you know, Joyce Daly did a test balloon through Facebook and most of you responded with interest to attend a conference.

We must have a considerable amount of the funds established to confirm our arrangements ---so the sooner we have them the sooner we can confirm dates and location. We are currently looking at the third week of June and 2nd or 3rd week of July. Location is Eastern USA - no specific city has or will be selected until funding is finalized. These are all driven by cost and confirmation of flights, hotels etc for our guest speakers.

I know many of you raise money through Facebook causes directly for CDG research - these funds would be separate and applied to the cost of the expenses of the conference. Each person/family will have to make decisions about the value of a conference to you and your family.

A suggestion has been made for different sponsorship levels - as well as individual efforts towards donations. If you have an interest in securing a corporate sponsor or in being a sponsor please email me directly.

Over the years we have held many conferences and the families who have attended enjoyed as well as benefited from them.

Currently Dr. Krasnewich, Dr. Freeze, Dr. Jaaken, Dr. Miller and Dr. Patterson from our Medical Advisory board have all confirmed their ability to attend. We have other speakers we will invite for additional topics and participation.

If you are willing to donate funds for the conference please send or indicate your donation as soon as possible so that we can plan accordingly to determine the true viability of a conference. We will send personal emails for those who donate and wish to be kept informed of fundraising efforts.

Conference fees for attendance will be established once donations have been finalized. Fees are usually set 90 - 120 days before the event - in this case that would be Feb/March 2011. Fees have ranged from $50.00 per person to $100.00 per person in the past with a maximum of $250.00 per family. Most families secure their own transportation and lodging once the location is announced - with all the discount providers today you can book your desired arrangements for less than what we can book as a group. The full conference is usually 2 days.

Skilled nursing and childcare are provided on site in a room adjacent to our sessions to allow for maximum participation of attendee's.

Donations can be mailed to:

CDG Family Network

P.O. Box 1285

Sioux Falls, SD 57101

Upon receiving your donation we will add your email address to our list of donors - please indicate if your

donation(s) should be anonymous.

Thank you for the support of your Family Network.

Cindy Wren Gray

President

CDG Family Network

Tuesday

2010-11-10T15:00:00.000-08:00

yesterday was a good day :)

Smiles

2010-11-09T08:25:00.001-08:00

Oliver's smiles came back for a brief period of time last night, and again this morning. They were SO good to see. He had another hour long crying fit last night but once it was over seemed to be happy and smiling, yelling in a good way. He woke up the same way this morning and it was a relief to know that amidst all of his troubles he can still find a few moments to try out a smile on his mom.

Case of the Mondays

2010-11-08T14:31:00.000-08:00

Life used to be so much more simple. It’s unbelievable the amount of issues we’ve had with poor Oliver over the past 2 weeks and I feel like we now have an even greater number of medical professionals to consult about it. Just when I thought we were simplifying our lives by graduating from the hematology clinic I’ve made an appointment at the gastro clinic and am contemplating contacting a pediatric urologist. Issues Oliver has had lately:

Oliver has been having some issues this past week with vomiting even though he's generally over his stomach bug from the week before and it seems he only vomits once or twice a day due to excessive coughing/gagging (he has a cold). But, when he vomits, it seems like most of the food he's eaten hours ago , has not digested at all. I'm worried he is having a new symptom related to CDG called delayed gastric emptying. I have read it can be worse after times of illnesses and CDG kids can have this plus cyclical vomiting that comes and goes throughout their lives. We've spent Saturday in the ER and they said he has a double ear infection and the vomiting is probably from the cold/cough and his electrolyte balance seemed fine and all looked ok. We did start Zantac on Thursday evening wondering if his vomiting (and associated cranky back arching issues ) were due to reflux. We'll see if things settle down soon, but we're hoping it is just a temporary thing and not a new CDG symptom.

We also have noticed a decrease in urination (and one day, Oliver if you are able to actually read this blog , I’m sorry for telling the whole world about your pee challenges). He will seem to get really upset at random times during the day with no explanation. Yesterday I realized that he had an awful sobbing screaming fit and then peed right after. It’s hard to tell when this is happening because he wears a diaper but I’m going to pay attention to it more. He’s also had some dark orange streaks in his diaper , which is what prompted us to go to the ER. We suspected a UTI or bladder infection or perhaps kidney stones. All were ruled out but I still think he’s having infrequent and painful urination in spite of normal test results. We will bring it up to his pediatrician on Friday. So he's pukey, unable to digest food (which is also kind of his medication since the diet is supposed to help seizures), won’t eat full meals, has cranky screaming periods with little or no explanation, and he hardly pees and cries when he does. We’re all falling apart over here trying to keep him happy and figure out how to get his body to process everything properly without adding too many more meds or supplements. here’s our current list of what he’s taking just to minimize some of his discomfort as well as treat the seizures and provide proper nutrition: Zantac for reflux 3x per day, Sabril for seizures 2x per day, Clonazepam for seizures 2x per day, Amoxicillin for ear infection 2x per day , Multi-vitamins 1-2x per day, Calcium supplement 0-1x per day, Miralax for constipation 1x per day

There are not enough hours/meals in a day to get all of this into the poor kid. Between the meds and supplements, getting his keto food into him and trying to keep him from crying we have no time left to just enjoy holding our baby , work on his therapy, or try to get him to see/communicate/hold his head up/etc.

Oh, and the ketones have been large the past week but after 2 doses of the antibiotic they are down to just a trace amount which means bad seizures will be coming at any moment. I called the pharmacist and the manufacturer of the medication and they both tell me absolutely no carbs or sugar are present in the medication and no one has any ideas why his ketones would be SO LOW on this medication. Luckily it’s only for 10 days but it’s going to be a rough 10 days.

Keep praying for Oliver’s health and for our sanity. We need it!

Quick Friday Update

2010-11-05T12:36:00.000-07:00

Oliver has been having increasing cranky episodes, getting worse and worse each day. We are thinking it's both gas and reflux because he'll be screaming in pain while passing gas but also arching his back and then is soothed by the bottle (classic reflux symptom). We're feeling like our colicky 2 month old is back and pretty exhausted by it all. He has been on a liquid only diet since recovering from his stomach bug and I think that's contributing to the reflux while the ketocal formula as his main source of food is contributing to the gas. We're easing him back into solids this weekend hoping that helps both the gas and the reflux. I've also picked up a bottle of mylanta, some gas drops, zantac and more miralax. $45 at CVS and I feel like I've got an army of gas/burp fighting materials! Here's hoping for a better weekend on that front.

Good news from the Epilepsy Clinic, Oliver's blood tests are all back and nothing looks off, he's tolerating the diet well. His blood ketones were 3.2 which means he's in ketosis, but they say they see best seizure control at the 4-7 range. This means we will be able to go up on the ratio and he'll be moving to 3:5 to 1 as soon as the dietitian changes his meals in the ketocalculator (the online tool we use to calculate his meals and snacks). This gives us the weekend to work on getting him back on solids and 'real food' before adjusting his diet with even more fat, so the timing is working out well.

I received a note confirming what I always knew in my heart....Oliver is one of a kind. A note from the assistant in the lab that's doing all of Oliver's CDG investigations:

"Oliver has what we call a "Mixed" type of CDG. This is when a patient has a combination of a type I and type II transferrin pattern. It is very rare and the genetic cause has not been identified. Because of the rarity, we have to use more comprehensive and complex genetic analysis.....simply put we have to do a version of whole genome analysis. (referred to as Exome sequencing)
It is only within the last year that this technology has become more available and more affordable to research labs. Currently our lab has 7 cases that are "Mixed" type, but interestingly Oliver is the only one with any type of neurological involvement. All the other cases only had liver problems.
Oliver's DNA has been submitted for Exome sequencing as of Monday. I cannot give you an exact time frame, but I will be certain to keep you posted. "

So basically, out of the 7 cases of mixed results, Oliver is the only one with his specific set of symptoms. This means there is no real prognosis for him as there aren't other patients to compare him to. This is good because it allows us to hope that he has more potential than he's shown us...and bad because we will never know how best to prepare ourselves for what to expect down the road. We will be sending his medical records/history out to the lab in California, along with DNA samples from Jason, Tobin and myself to further assist the team in typing Oliver's DNA. From what I've read this can takes months to years so we might not have an answer right away. As with everything we've been through in the past year....we need to have patience.

My Rants

2010-11-03T14:36:00.000-07:00

People always say “God doesn’t give you more than you can handle”. Well, sure…. I can handle it. Doesn’t mean I want to. I’m sorry but I just don’t find comfort in that saying. I don’t find comfort in many of the trite but well meaning things people often say to me. Yes, I’m a strong person. But at what cost? I’m exhausted. I’m depressed. I’m emotionally fragile. I feel like I’m living my life at a fraction of its full potential.

I worry about the past: what could I have done differently? Maybe it would have been enough to just have one healthy child. Maybe I hadn’t gotten pregnant the first month we tried. Maybe genetics would have worked out better in our favor if we got pregnant a month later or a month earlier.

I worry about the present: is Tobin going to grow up with our attention so focused on his brother all the time? How much longer can we go on going through the routine of our lives when it is mostly time consuming exhausting work? How are we going to afford all the time off we have to take from our jobs? What therapies are out there that Oliver would benefit from that we can’t afford and that insurance won’t pay for because they are “alternate” therapies? When will we stop feeling guilty for wanting just one day to not be parents and to get a break from it all?

I worry mostly about the future: What will Oliver be like 5 years from now? 30 years from now? Who will take care of him when we’re gone? We don’t have the money to set aside for his future care and I feel awful thinking that he will be a burden on Tobin and that Tobin will resent him or us. How many years of diaper changes am I going to have to do? Where should we live to ensure the best medical care and special needs services? Most of all I worry that Oliver will still be suffering from seizures and developmentally 3 months old for the rest of his life. I know he won’t know any different, and that if we can keep him comfortable and happy 90% of the time that it will still be a “good life” without excessive suffering. But the suffering comes on our parts. We suffer to watch a child that could have been so different if it weren’t for dozens of things we can’t change. We suffer because we might not be able to go on vacations and do the traveling we thought we’d be able to do with two able bodied kids. Everything will be that much more complicated to schedule and arrange.

Some days I just want to give up trying to fight these stupid seizures. It seems that no matter what we do, the seizures remain and are on their own timetable. I am just so tired trying to stay one step ahead of our treatment plan and always have a next option ready to go? What happens when we run out of options? I am curious how many seizures Oliver would have without all of this medication and this diet. Would it be the same or would he have more? I also wonder just what his development would be. I was expecting him to be better overnight once we started the diet and I’m disappointed that he’s not. I wasn’t expecting complete seizure control but I was hoping to experience the developmental surge that everyone talks about. It’s so exhausting pushing through each day looking forward to a brighter future but not seeing the path to get there. I could push through the exhausting routine of our days and do this for another few years if I knew there was an end in sight. If one day he’d be able to sit in a high chair at a restaurant or be mobile enough to crawl around the house and play with toys. If the seizures would go away or he’d start developing and we could look back on this and talk about how much progress he’s made. But when I face reality….that this is pretty much our future…. I just want to crawl under the covers and stay there. It’s certainly not the worst possible life for the child. When he’s not having his daily crying fits (which could be gas, reflux, teething or just baby crankiness) he is generally pretty happy and content. He’s small and portable and easy to tote around most of the time. But as he gets older, bigger and more difficult to handle….what will our life be like?

I try, everyday, to embrace the person he is rather than mourn the person he’s not. But it’s hard for me. I sometimes imagine that there is an alternate universe out there where my boys are running around together, fighting over toys and driving me crazy because they are both so active. I feel like all of this is happening simultaneously while I’m preparing meals, putting meds into syringes, and scheduling doctor’s appointments. I wake up every morning hoping I’ve transferred over into the world with two healthy boys and I feel a surge of sadness when I realize that I haven’t….and then I scoop up that adorable sleeping baby and cuddle him awake for his meds and I instantly feel more centered and peaceful. He is the grounding force in my life as well as the cause of all my worries. How strange that if this one person were gone from my world my life would be so much more calm yet at the same time I can’t imagine life without him? Some days, when Oliver is feeling good and the seizures aren’t coming we do enjoy a bit of peace. There are some advantages to a 12 month old who is more like a 2 month old: He stays where you put him. He eats whatever you feed him. He doesn't argue with you. He takes lots of long naps throughout the day, anywhere you go (stroller, car, living room couch). He doesn’t fight with his brother. We don’t have to baby proof the house.

I would gladly trade it all for a tantrum-ing toddler who tries to turn the oven knobs and throws bowl of pasta out of the high chair. If this experience is teaching me anything, it’s to be SO grateful for behaviors most parents complain about. On those really rough days with Tobin I just keep reminding myself how lucky I am that he has opinions and voices them, and is growing up to be smart enough to try and wheel and deal for 10 more minutes of tv or an extra ice cream sandwich. He is such a funny, smart and sweet little kid. He surprises us every day with all he’s learning to do and say and we try to celebrate those moments rather than feeling sad that Oliver will never have them. I hope that in time, this gets easier for us. And I hope that in time, Oliver proves us all wrong and shows us that underneath all of the medical issues….there is a happy little boy who will wake up every morning and greet me with a grin.

The Saxton Plague

2010-11-03T13:47:00.000-07:00

Well the curse of Halloween got us again. On Thursday afternoon I received a call that Oliver has spiked a fever and that I should come pick him up. When I arrived at daycare he was flushed, panting, and looked completely miserable. Got him home and got some Tylenol in him, comforted him while he cried and called to get him into see his doctor that evening. After a full check nothing was found and they figured he just had a virus and to give him fluids and rest. We were worried (as always) that it was something more sinister like kidney stones or some other type of infection due to his history with neutropenia. All that worry was for nothing as we quickly found out it WAS just a bug when I got a call on Friday afternoon to come pick up Tobin, who had vomited several times and was miserable with flushed cheeks and a fever. Our family and Halloween just do not mix. Luckily, Tobin fell ill after his big Halloween parade at school and ended up recovering within about 8 hours. Jason came down with the bug on Sunday night, and I got it Monday morning. But WE DID NOT SPEND HALLOWEEN IN THE HOSPITAL! So at least we broke that streak. And, for the first time….I took my children trick or treating. Amazing. Oliver, still feeling sick, slept pretty much the whole time but allowed us to put his Octopus costume on. Tobin had a blast ringing all the doorbells and looking for other Buzz Lightyears. Jason was feeling increasingly sick as we walked around so we called it quits after about an hour and he went straight to bed while Tobin and I took candy inventory.

Oliver is just starting to feel better and drinking bottles again. We haven’t got him back to his regular keto meals yet so we actually have had a nice break from weighing and measuring the past few days! Now that he is on the mend we’ll get back on track with our butter and oil filled existence. Got some blood results back today and should have the rest by tomorrow. So far he is still in the normal range for neutrophils. They are on the lower end of normal, but still normal so that’s good. His cholesterol is fine and triglycerides are high (which is normal being on the diet). White blood count was low, which might be concerning but he was just starting with his virus when the blood was taken so it might not be anything. We will wait to hear the rest of the results and then find out if he’ll go up in his ratio to 3:5 to 1. We meet with our neuro next week and will discuss medication weaning. Very anxious to have him off the clonazepam.

Both boys have been waking randomly throughout the nights and for the past three days in a row, one of them has woken up at 5:51am exactly. I’m feeling pretty tired as I’m just getting over this flu bug thing myself and have been waking up during the night and early in the morning. Late next week Jason has to be out of town for work for 3 days so I’ll be alone with both boys for those days. I am hoping that Oliver stays healthy and that everything goes smoothly.

We had PT yesterday and the therapist mentioned that she thought we should ask Oliver’s neuro about a movement disorder. She said it almost seems as if his movements are rhythmical and dance like, similar to what you’d see in a person with a movement disorder….rather than him being unable to control his movements. So, when he lifts his head and dips it back down , he’s doing it on purpose and it’s not that he can’t hold his head up, it’s that he won’t. It’s an interesting theory and I’m not sure what to think of it. Because, when you face the facts…either way he can’t or won’t hold his head up and that makes life very difficult for all of us. We will mention it to his doctor next week and see what he thinks. As with anything I’m sure the answer will be “only time will tell”. Perhaps I’d like a psychic reading for Christmas?

1 Month on Keto!

2010-10-27T13:19:00.000-07:00

Oliver has been on the Ketogenic diet for a full month now. We've seen about the same amount of seizures (more in fact) as last month, but a few of them have stopped on their own without medical intervention so hopefully that's a step in the right direction. He had a bad one yesterday but seems to be feeling great today. His blood was drawn today and if all the blood work looks ok that will mean he's tolerating the diet fairly well and we can increase the ratio to 3.5:1. They hope with this increase we will see more consistently high / large ketones and better seizure control. Crossing our fingers that they are right!

I had a bit of a breakdown at the doctor's office today. They handed me some packets of information to fill out prior to our meeting with the Keto team. In it was a questionnaire for development level of children 12 months of age. I hate these things. I can't answer yes to any of the questions. I couldn't even answer yes to the questions on the 6 month questionnaire. Not only are they asking me "can your child throw a ball" , "does your child look when you point at something", "does your child try to gain your attention to show you stuff" , "is your child walking independently or does he/she still need to hold onto your hand when walking?".....but as I'm answering these questions with tears running down my face...there are two little boys just about the same age as Oliver....walking around right in front of me. Stopping to bend down and pick stuff up (another question on the questionnaire), smiling at their parents (again, I have to answer no to this question), and grabbing toys (nope, can't do that either). It just seemed like exceptionally bad timing or a very cruel cosmic coincidence. It's not their fault they are normally developing and I shouldn't be so sensitive but it just seemed like a sick joke.

By the time they call me back to meet up with Jason and Oliver (who had gone back to do vitals while I did paperwork), I'm emotionally a bit of a wreck. I feel bad for the nurse who asked "how are you doing today?!" Normally i just smile and say "fine!". Today I told her the truth. Sorry lady, but you asked. "I'm awful".

Nice fall weekend!

2010-10-25T11:40:00.001-07:00

We had a great weekend. Got lots of keto cooking done, prepped some things for our own dinners this week and got to enjoy the beautiful and unseasonably warm fall weather. Saturday we had brunch with Uncle Bob and Uncle Brian at Ann Sather. Tobin was in sticky bun heaven and it was really nice to catch up with family who can always make us laugh. It rained quite a bit so we spent the rest of the morning watching a Diego movie and doing laundry. In the afternoon we went to a party at a friend’s house for Halloween. There were TONS of cute kids in costumes and Tobin had such a great time running around and playing. It was nice for the grown-ups to sit and talk and just have a relaxing afternoon away from medical discussions and obsessing about the diet and ways to make it better for Oliver. Oliver had a great physical therapy session and then he and Jason joined us at the party. He took a nice nap after therapy and then woke up to hang out with everyone and visit with his little buddy Nicolas, the younger sibling of Tobin’s friend from music class, Sofia.

Sunday we enjoyed going to TWO different parks and I spent about 4 hours on my feet in the kitchen cooking and prepping keto stuff for the week. It is a time consuming and labor intensive process. One of the women I know who also has a child on the diet said she likes to think of herself as “cooking to cure epilepsy, one meal at a time”. I try to think of it that way too and I hope it helps Oliver. I will do this as long as he needs me to.

Last night we had a really nice dinner. Oliver had eaten already and was just hanging out in his bouncy seat, then he dozed off with a belly full of cream, butter, sweet potato, and chicken. Jason, Tobin and I all sat down to eat and just talked about Halloween and costumes and the different ideas Tobin had for making his costumes even more fun. Kids have a way of making you forget your troubles when they get so excited over small things. It’s a good reminder of how magical and wonderful the world can be, where everyone can take the opportunity to pretend to be something else. I am really looking forward to taking the boys out this year. I haven’t taken Tobin trick or treating yet, and he’s nearly 4 years old!

We have our one month keto follow-up appointment at the hospital on Wednesday this week. We’re going to try and figure out why Oliver’s ketone levels are so inconsistent and try to figure out what tweaks and changes we can make to his diet to get it working better. I have a feeling we may end up on a 4:1 ratio, which means more butter, cream and oil in relation to the other carbs/protein he eats. It’ll take some adjusting but shouldn’t be too bad at all to print out a new set of recipes and go from there. I haven’t prepped any meals beyond Wednesday just in case they do change the ratio.

Oliver has been smiling a bit more lately. I hope that means the diet is doing some good things as we haven’t seen any other obvious changes. Seizure activity is about the same (but not markedly worse, so that’s good) and development is about the same as well. Hard to be patient when you read the stories about children who began holding their head up overnight after starting the diet. But we’ll take the additional smiles, because they are SO beautiful. Last night Oliver was pretty awake and alert after Tobin had gone to bed and I had a great time bouncing him up and down to make him smile. Then he promptly fell asleep as soon as I put him in his bed.

Celebrating small things

2010-10-22T08:39:00.000-07:00

last night Oliver went to sleep around 9pm....Jason put him in his pack n play outside our bedroom ...on his side...and he SLEPT ALL NIGHT. At 6:50am I heard him yelling and he sounded REALLY frustrated....it's because he had turned to his belly and was throwing his head back in an effort to roll over. His body wouldn't follow his head, but that's ok. He was trying. I scooped him up for 10 minutes of cuddling before the morning routine of medicine, supplements, miralax and keto breakfast. It was a nice way to wake up.

2010-10-22T08:38:00.001-07:00

October

2010-10-21T14:48:00.000-07:00

October is a tough month for me. I think because we have had quite a few things go wrong in Octobers in the past, I'm always waiting for the worst to happen. 2 years ago Tobin had some issues with a double ear infection and the coxsackie virus at the same time. Neither were diagnosed quickly and the coxsackie took over 10 days to be found. In that time Tobin stopped eating and drinking and was MISERABLE. It was a really rough couple of weeks that ended with us in the ER for IV fluids instead of enjoying Halloween like we had planned. At that time, Jason and I thought what we were going through was incredibly stressful and traumatic and little did we know we had dozens of ER and hospital trips ahead of us in our lives. Tobin did recover with the fluids and with some help from "magic mouthwash" we were able to continue to get fluids into him at home, and get him eating again.

Then, a year ago I was so excited for Tobin to have his first real Halloween since he was robbed of the experience the year before. We had the same costume (which he never wore!) and it still fit. Perfect. I went to Tobin's school, with newborn Oliver in his stroller , and helped pass out candy to all the kids and really enjoyed the (cold and rainy) Halloween parade. I was looking forward to taking Tobin trick or treating that weekend with a cute little baby in his pumpkin onesie to tag along with us. When I got home from the school I sat down with Oliver and he had some milk and decided to take a nap. He looked so peaceful and quiet, but felt very warm. I started looking around the house for a thermometer and realized I only had an ear thermometer and it was too small to fit into his ears. So then I dug around some more and found an old rectal thermometer I had bought when Tobin was born. The batteries were dead. I sat around for 10 minutes trying to figure out if I was over reacting or if I really needed to check his temp. It was pouring rain and Oliver was not the best traveler at the age of 3 weeks. I didn't want to take him out and wake him up because I knew he'd scream in the car. So I finally called a friend and asked her to pick me up a rectal thermometer and bring it over. About 30 minutes later, she did and we got the reading of 101.6 which is way too high for a newborn. I called the pediatrician who recommended we go straight to the ER. I didn't realize that when a newborn has a fever they do a spinal tap, and take blood and urine to look for infections.

As we arrived at the ER Oliver woke up and had one of his signature screaming fits, ending in a giant messy poop out the back of his cute little pumpkin onesie. They quickly undressed him and then PUT HIM UNDER A HEAT LAMP in the triage room. Apparently this is their protocol, but perhaps they didn't realize he had a high fever? As he got warmer and more red I mentioned something to the team and they took his temp again. Over 104 at this point. After they took him out from under the lamp and gave him some tylenol he began to cool down a bit. It took them 2 tries to get the catheter in and then they asked me to step out for the spinal tap. Oliver looked listless as I walked out of the room and I had a brief thought that I might never see him again. I immediately starting crying and called a friend to pick Tobin up from school so that Jason could leave work and come straight to the hospital to be with me and Oliver. They ended up admitting Oliver that night and the spinal tap results showed meningitis. It was the viral kind, not bacterial so it was "less serious" but we still had to stay in the hospital, in isolation, for 4 days. We never did figure out how Oliver got meningitis, but were only told that it could have been any virus that entered his body (even the common cold) and spread quickly because newborn immune systems are so risky. Oliver appeared to be doing fine and we were able to bring him home within 4 days. We will never know exactly what the meningitis did to his brain stem. There was no visible damage found at his MRI at 5 months but I still worry that something happened at that crucial stage of development that might be a contributor to his seizures or his lack of development. The question will always remain: Was it the meningitis, the CDG, or some combo that triggered the infantile spasms?

This all happened last year during Halloween weekend. Suffice to say we did not get to do our trick or treating as a family with a cute little baby in his pumpkin onesie and Tobin the turtle ringing doorbells. However, Jason did get to take Tobin out with his Papa Frank and they had a great time while Mom and I stayed in the hospital with a tiny little newborn in a hospital gown. Recently I packed up all of Oliver and Tobin's old baby clothes that they have outgrown and sent them off to various friends to use for their babies. The one thing I couldn't get rid of was the pumpkin onesie that Oliver was wearing that day we went into the hospital. I don't really know why but it seems to represent the day our lives changed forever even though Oliver wasn't diagnosed with IS until over 4 months after that day.

As Halloween weekend approaches again I find myself wondering what kind of holiday we're going to have this year. I keep holding on to that image of two parents and two children trick or treating around the city, enjoying a nice fall evening. Maybe this year will be our year.

Over. Whelmed.

2010-10-20T08:21:00.001-07:00

Feeling a bit overwhelmed at the moment. I have 5 full time jobs and I’m under performing in each of them. I’ve never broken it down before but I realized that I have to be a mom, wife, employee, nurse and personal chef all at the same time. When you are juggling so many things at the same time, it’s nearly impossible not to drop something.

I have let Oliver’s diet/seizures/medical issues consume me and spend about 23 hours per day thinking about how to fix the problem. It’s so difficult to read advice from other parents on the keto group mailing list, and try to figure out why our keto team never told us these things. Finding the perfect version of the diet for Oliver is proving to be way more difficult than I thought. There are SO many elements. The medications he’s on, the vitamins and supplements he takes, the artificial sweeteners in various products, the carbs in the preservatives in various foods….all contribute to reasons why the diet may not be decreasing his seizures. Then we have wildcards like the antibiotic he’s on now for his ear infection and Jason forgetting the cream part of his breakfast on Saturday morning. It’s a wonder that anyone ever gets seizure free on this diet.

Beyond the diet we still have to deal with Oliver’s lack of development and the fact that we don’t do therapy with him daily like we should. We spend so much time trying to get the food and fluids and medication into him, when he has 5 minutes of downtime we just stick him in his bouncy seat or on his playmat to have a little bit of time to JUST BE A BABY, rather than work him out. It’s very hard leaving him at daycare every day worrying about how his meals are going to go and if he’s going to get enough tummy time and water to drink throughout the day. But if I were home with him I’d be even more overwhelmed with figuring out the exact combination of foods and medications to get him seizure free. He may never even BE seizure free. Maybe we focus so much on the diet and the seizures because facing the facts that he’s 12 months and still developmentally like a newborn is just too hard to face. Last night I stumbled on some videos of Oliver when he was just a couple months old. The way he was moving his arms and his facial expressions are the exact same things he does now….9 months later. He hasn’t changed at all. Except maybe he lost a few of those things and slowly gained them back? Who knows, it’s just really frustrating. At the same time I keep trying to be grateful that my son currently eats on his own, breathes on his own and performs basic life functions without assistance of tubes and machines. Who ever knew that someday I’d just be so grateful that my kid can eat on his own while other parents are sad because their 13 month old only has 3 words! It’s funny what a bit of perspective this whole diagnosis has given me. Though I’d rather be blissfully ignorant of all the bad in the world and would gladly give up my new wisdom for a healthy child.

I read about women who have husbands who are blissfully ignorant about the extreme amount of time that goes into caring for a special needs child and I’m happy that I have a true partner who helps make meals, gives medications and goes to doctor’s appointments and therapy. It’s probably good that he doesn’t spend as much time reading and talking to other people online about the diet and the seizures because he gets to have the mental break of not having constant emails flooding in about seizures and meds and symptoms. I still feel like I would miss too much if I weren’t on the lists so I have to read about it all day long. But it makes me less of a fun person. All I can do is think and talk about Oliver and his issues and the best way to help him. It probably doesn’t make me very fun to hang out with. Maybe someday I will be able to be much more “zen” about this but I think that would require a very large personality overhaul.

Monday night we experienced within just 4 hours what could be considered a prime example of the extreme ups and downs we go through in our lives. I arrived home from work to find Oliver playing on the floor waving his arms around on his playmat. I said hello to him and then was greeted by a big hug from Tobin. Jason was just starting to cook dinner so I started working on Oliver’s meds and keto meal plus the weighing and measuring for all the stuff he needs the next day at school. Tobin was happily playing by himself in his playroom. I walked into the living room because it appeared Oliver had fallen asleep on the floor and when I got closer and started talking I noticed he was peeking out from behind his little arm with a smile on his face. I called everyone in to look at him because it was just so darn cute. He smiled at us some more and then laughed. It’s moments like this that make me think things are going to be ok. Everyone is happy, things are fairly calm and though we have a lot to do, it’s not overwhelming. Oliver did eventually fall asleep so Jason, Tobin and I had a nice dinner. Then, as we were starting the dishes, Oliver woke up. He woke up very sad and upset about something which he does time to time. Usually these fussy periods last for about an hour and we have no idea what’s causing them. He just cries and cries with nothing that can stop him. It’s at this moment that our life goes from fairly enjoyable to chaos. Because Oliver is due for medication Jason starts giving it to him even though he’s really upset. This results in Oliver throwing up within a few minutes of his meds and us stressing about whether to re-dose him or not. In the meantime, we’re reworking our whole idea for a keto dinner because it’s hard to get Oliver to sit and eat a pureed meal when he’s so upset. So I tossed out everything I had just made and got a bottle of the ketocal formula ready for when he finally settled down, then rapidly started trying to do the dishes so we had enough bottles for daycare the next day. Meanwhile Tobin had finished watching a few episodes of Caillou on my laptop and needed a bath but was giving me a hard time about getting in the tub. I was asking him to take a bath first, then settle in to watch his tv show before bed but he wanted to do things in the opposite order. So then I had both boys crying, a sinkful of dishes, a cat that needed water from the bathroom sink and keto meals that still needed prepping. It’s moments like that when I feel as if we can’t go on like this much longer and the medical issues and the diet and everything else just seem to be TOO MUCH. So that’s a typical day in the life of the Saxtons. Some days are more like the first half when everything goes along smoothly and we run like a well oiled machine, everyone contributing happily to the chores and peace in our home. Other days are complete and utter chaos with everyone snapping at each other and lots of tears all around. I can only hope that as time goes by, we start to experience more joyful days and less sorrowful ones.

Back to the grind

2010-10-18T10:09:00.001-07:00

I got a nice break over the weekend and took Tobin to NJ and NY for a family wedding. It was really odd to be traveling with just one child, no stroller, and lacking several bags full of diapers, bottles, meds, etc. It was also my first time on a plane in 2010 which is very weird for me, as I used to consider myself a frequent flyer! Tobin did great on the plane both times and was very patient and great at waiting for the fun (dancing and cake) to begin during the wedding. Apparently the ceremony is "boring" but he likes the part where they kiss at the end although he didn't quite understand why they needed to kiss. He then asked me when he is getting married and I said , "well, as soon as you find someone to marry I suggest you ask her (or him)". We'll see how that works out.

We were both very happy to see Jason and Oliver when we got home. Jason was making keto cheesecakes for Oliver for the week (and had already measured out tons of butter, oil, cereal, and miralax for the next few weeks, yay!). Oliver was asleep. He woke up shortly after we came home and had a seizure :( Not a great way to greet me but it's not his fault. he was very quiet but I just knew that he wasn't napping anymore so I went into his room and he was shaking and looked very scared. He had some very mild spasms around his face only and then burst out with full spasms /screaming a minute or so into it. Luckily his cluster only lasted a few minutes and ended on its own without any intervention needed from us. It's sad to say but if every seizure were this "easy" it would be a little easier for us to handle. The long drawn out hour long seizures are very hard to take and they take a big toll on Oliver and he's just exhausted the rest of the day. After yesterday's brief cluster he just snuggled up into me and lay very still. I was worried that something was wrong but after looking at him closer it seems he was just happy that I was back home. We had a nice long cuddle and then he started cooing and seemed ready to play for a bit while I made his dinner. We tried a new meal last night. Scrambled eggs with LOTS of butter and cream and a tiny bit of applesauce on the side. He did ok once we figured out that we need to puree the eggs to make them easier for him to eat.

Apparently, on Thursday as Oliver went in for his flu shot, he was found to have a minor ear infection. Most of the time the doctor wouldn't treat it but would watch it to see if it got worse. of course, since Oliver has neutropenia he insisted on antibiotics. We told him Oliver's neutropenia had pretty much "resolved" for now so he left it up to us whether we want to start the drugs. on Friday Oliver had a pretty nasty seizure that required an extra clonazepam dose so Jason decided to get the pills and try it. because of the diet, Oliver can't have regular sugary amox, so they put it in capsule form. Since he's been on the pills we can smell the antibiotic in his urine, which is weird and his keto stix (urine testing sticks) have been testing really low despite his diet being the same. So either the pills are changing his ketones because they aren't carb/sugar free or they are altering the color of the ketostix because it's coming out so concentrated in his urine. odd. We have a call into the keto team to figure it out. Hopefully once he is off the antibiotics and is feeling better we will see less seizures and get back on track with his diet...just in time for his 2nd flu shot (flu shot booster). So who knows if that shot on Thursday was the cause of the seizures. ARGH!

My goal is to get him off the clonazepam by Thanksgiving. I really want that drug gone (but we'll use it as our rescue med for now) on a daily basis. I don't want to make too many changes at once so we'll wait for him to come off the amox and for his 2nd flu shot to be done before we go taking away the clonazepam. I just don't know what it's actually doing and if it's helping or hurting at this point. I would also like to get rid of the vigab just to see what Oliver's "baseline" is in terms of seizure activity and development with only the diet in place. THen we'll decide if we need another medication or a diet adjustment.

So we're back at work, school, daycare and back to the grind but we all had a decent weekend. Jason enjoyed our free HBO all weekend long and Oliver got a lot of daddy time which he loves. Despite a few seizures he had 2 good therapy sessions on Saturday and did lots of cooing and talking to us last night.

Quick Update

2010-10-08T10:45:00.000-07:00

After a rough start, Oliver appears to be eating better and taking fluids better. He has had 2 seizures since the diet initiation but both were very mild and ended on their own within minutes. This is hopefully a good sign that the diet is helping to decrease the intensity of his seizures.

He is cooing a TON and starting to smile and laugh a little more on the good days. We are still adjusting to the rigorous weighing and measuring involved with the diet but we've had a lot of help from Grandma Eunice the past 2 weeks and it's made a world of difference.

Oliver had a hematology appt yesterday and is graduating from their clinic! his neutropenia appears to have resolved itself and he is no longer anemic. Finally some good news! we'll continue to monitor his blood over the coming months to make sure this is a permanent change.

here is a good link for more info about the diet: http://www.hopkinschildrens.org/high-fat-ketogenic-diet-to-control-seizures-is-safe-over-long-term.aspx

Birthday Blues

2010-10-04T13:45:00.000-07:00

Oliver's birthday was a little rough. He had an hour long cranky crying session after his morning nap. I'm not sure if he had a mild seizure that we didn't see/hear before the crying started. I am trying to figure out if these crying sessions are due to something like reflux or gas or teeth or if it's post -seizure stuff. Not really sure but I decided to just write down everytime it happens and if it's frequent enough, maybe we'll get an idea on his next EEG if he is having mild seizures that we don't see. I hope it's something fixable like reflux or teeth. He has had a bad cold and does not want to eat or drink this weekend so it's been rough. Yesterday he scared us a bit because he slept a lot and didn't get enough fluids. We did get him to take some pedialyte during the night and this morning but then found out we shouldn't give too much while on the diet so we're going to try and get water into him over the next few days. Hopefully he will start eating better soon.

He did love the pumpkin cheesecake I made him and he got some very lovely clothes. Hopefully his next birthday will be less sad and more fun!

We are going to try taking him to daycare a few days this week so they can start easing into the diet. Hopefully all will go well and they will make sure he gets his meals on time and eats and drinks enough. We have his 12 mth appt coming up on Thursday along with his 3 month check in with hematology. During the keto stay we found out his neutraphils were up over 2200 and he was not neutropenic. Hopefully that trend continues.

Tobin has been having a blast with his grandmas and his Papa and just got a nice new haircut to even out the big chunk he cut from his own head at school the other day. Basically just being a typical three year old and for that we are so grateful. Tonight we are going to try and get organized and plan some of Oliver's meals for the upcoming week and do a few things around the house that we didn't get done on Sunday.

Keto Kid

2010-10-01T14:25:00.000-07:00

Oliver is officially a keto kid. He started the Ketogenic Diet on Monday. Within 3 days he was fully in ketosis and handled the initiation of the diet like a dream. He ate everything we fed him, drank all his bottles and didn't have any complications. We left the hospital last night and he promptly spiked a fever and then vomited up butter and cream all over Jason during evening meds. We got most of his medication in and then let him go to sleep and he seems to be feeling much better today.

The diet is interesting and I am already sick of butter and cream and I don't even have to eat the stuff. But if it works it will be amazing. We're going slowly and just using some very basic meals to start but we've been able to get through it without using the keto formula yet which is great since it's so expensive. We just have to make sure to work the supplements and vitamins into him and make sure he gets enough protein to grow!

We hear that we'll know within a few months if the diet is going to work for his seizures so we're hopeful. He had one last Friday and then an awful one this past Monday before going into the hospital. VERY intense and spasms were coming every 5 minutes for HOURS after the original cluster added. Thursday morning he had a very mild seizure with only about 5 spasms and a few minutes of shaking and then it was over. Whether it would have been like that without the diet, I'm not sure. But if the diet helped to reduce the intensity that quickly I'm amazed. I think we'll know within a month if we need to make diet adjustments and then we can talk about weaning his Clonazepam completely first and then getting rid of the Vigabatrin.

Birthday Boy

2010-10-01T14:00:00.001-07:00

Oliver's first birthday is just two days away. A year ago I was impatiently waiting to meet the cute little person who had been living inside of me for over nine months, wondering what he or she would look like, hoping Tobin would adjust well to having a sibling, picturing myself strolling around the park with a baby in a sling watching Tobin climb up ladders and slide down slides. I kept telling myself that once the baby came we'd have some rough months adjusting and then as we approached the baby's first birthday things would just seem easier because kids become more mobile and more independent around their first birthday.

We didn't get to do too much frolicking in the park this past year. We spent a lot of time in the hospital wondering if we were going to lose our baby. We kept Oliver home and out of the intense heat most of the summer so as not to trigger seizures. We spent a lot of time feeling overwhelmed with Oliver's therapy, medication, and medical appointments. I spent most of my time at work wishing I could be at home and most of my time at home wishing I could be at work.

This past year has not gone at all like we planned. But my prediction that things would be easier at the one year mark was sort of right. Oliver is finally sleeping through the night (ish). He wakes up occasionally but just talks to himself and then goes back to sleep. So we're all getting more sleep and that's great. He isn't quite as independent as I'd hoped. My goal was for him to sit up with support and hold his head up. He can't really do either yet but I keep thinking that once we get this hypsarrthmia to go away he might have more of a chance. Or tone down some of his meds or something. Things are easier in that we're becoming better at handling the chaos of parenting a special needs child and another child that demands a lot of attention. The days seem like a lot of work and they fly by fast but it's manageable. So we've all come pretty far since Oliver was born and we are so happy to have our little cuddle bug in our lives. We hope that the 2nd year of his life comes with many improvements and general good health.

Paranoid Mommy

2010-09-22T08:39:00.000-07:00

Oliver was up on and off throughout the night. Luckily I have the greatest husband in the world because he got up every time to check pacifier status and change Oliver's diaper to see if he'd go back to sleep. I don't know why but after 10 months of not being able to sleep through the night I am now a zombie if I have to get up during the night, my body has just had enough. I heard Oliver at 6am and got up since Jason was already at work, after replacing his pacifier he went right back to sleep. I had to wake him at 7am for medicine and then he went right back to sleep. I had to force a few ounces of formula into him this morning and a few spoonfuls of fruit, but he just wanted to sleep. On mornings like this I try to tell myself that he's just tired from being up during the night...but in the back of my mind I keep thinking he's super sleepy/drowsy because a seizure is coming. So after dropping him at daycare this morning I came home and stayed. I love that I have the ability to work from home. I can't do it daily and I wouldn't want to do it daily, but on days that I feel very paranoid about potential non-stop seizures I feel better that I am only 10 minutes away from him. Of course I could be wrong and he could go through the day just fine and then have a seizure tomorrow while I am work and my guard is down.

One of the hardest parts of this whole experience is the constant feeling of being on edge and worried about what's around the corner. I can never just rest easy anymore. If he's asleep I'm worried about what's going to happen when he wakes up. If he's away from me I live in fear of my phone ringing and getting a call from the daycare director. I wonder if we'll ever just be able to be very zen about it all and not be so nervous all the time....

We are very close to starting the ketogenic diet and I've done as much prep work as I can before we go into the hospital. We have some family coming for the next couple of weeks to help with Tobin while we're taking turns staying with Oliver. Grandma Eunice will be here for the duration to help with the hospital stay and help while Jason is away for work for a week. Papa Bill and Grandma Patti are both making a weekend trip to celebrate Oliver's first birthday! Tobin is excited to see everyone and it will be nice for us to have family to visit with and help with our crazy lives.

I've been reading a book about the brain to learn more about why Oliver is struggling so much. it's very interesting but with each chapter I keep wishing I didn't have to read this book. With every rinsing of the syringes I keep wishing I didn't have to give my child daily medication. Each time I lift him up and feel how floppy his body I wish I had a baby that could hold on to me to bear some of the load. I don't think I'll ever stop wishing for things to be different but I keep hoping that I will get better at pushing those thoughts out of my head and reminding myself that we don't have it that bad. It's hard for a parent who imagines what their unborn baby will be like, how the relationship will be between two children and what our family will be able to enjoy as the kids get older. Some days it feels like we can do just as much as we did before, other days it feels like our lives will never be "normal" again. I remember when Tobin was this age, how nice it was to go out to eat and not have to bring special food for him or formula for bottles. Instead he could get milk and eat french fries and just hang out. When Oliver was very tiny I was looking forward to this stage and now that he's starting the diet it's going to be several years before we get to do that, if we even get to that point. But adjusting my thinking is easier when I tell myself "it's worth it if he's not having seizures". If this diet works, I will gladly spend the hours each week to calculate his meals, cook and prep foods and try to get him to eat so that he can be healthy. I know it comes with its own challenges. What if he refuses to eat? What if the diet affects his organs badly? what if he simply cannot tolerate it or it doesn't work? That's way more scary than having to bring his special foods out to dinner for the next two years.

As his first birthday approaches I find myself panicking less than I was a few months ago. I think I will be happy to just celebrate the fact that we all survived the first year even if Oliver is not meeting his milestones. I have to let go of his age, because he will never be on track for his age. We just have to hope that he does well compared to himself months ago. If he is holding his head up at 2 years old, it will be a reason to celebrate because he'll be holding his head up and he wasn't able to do it before.

Oliver is a trooper. He is a tough kid who has been through a lot and put up with so much. I am trying to remember that on all of the awful days and not allow paranoia to hold me hostage.

A lesson on CDG

2010-09-14T12:47:00.000-07:00

http://www.vimeo.com/10219010

This is a great video to watch if you have a spare 30 minutes (thanks Mom!). Hudson Freeze is researching the various CDG subtypes and Oliver's fibroblasts have been sent to his lab for study. He discusses the most common forms of CDG , which Oliver probably doesn't have, but the knowledge they have about those subtypes can be expanded over the years to include the newer subtypes (which is probably what Oliver will have once his results come back).

Getting closer to Keto

2010-09-13T11:27:00.000-07:00

I've spent the last week reading as much as I can about the ketogenic diet and ordering tons of products that are "keto approved" from the internet. I think I've managed to replace all of Oliver's diaper creams, lotions, sunscreen, teething gel etc. As he gets older we'll worry more about things like deodorant and toothpaste! I printed some labels with my label maker that say "keto safe" and I've slapped one onto every product that is approved for use while on the diet. This way, his teachers at school will never have to question if a product is ok to use, same goes for anyone watching Oliver in our house. This weekend I am going to box up all of the non safe products and take them out of his room/bathroom/linen closet and give them away to someone who has a baby with less strict needs.

I'm trying to mentally prepare myself for this diet as well. Trying to get a clear expectation for what I want the diet to do without getting my hopes up for a true miracle. Our main objective right now is two-fold.

1. to reduce the intensity of the spasms so they don't last as long. The clusters are currently lasting up to an hour or so and are so difficult for Oliver, lots of screams, tons of crying and then he sleeps forever afterward. It's just not pleasant for anyone involved.
2. to improve Oliver's potential for development. When all of this started I used to say " I don't care about his development I just want to stop the seizures". Well now I'm changing my tune. I will care less about the seizures if his development starts to pick up. It seems like now he isn't developing much at all and he's having seizures. I want improvement! I think he has a lot of potential but I just can't figure out if it's the seizures, the hyps, the meds, or the cdg affecting him the most. We can't control the CDG but we can hopefully gain control of all the other stuff someday!

We are trying to plug along with life in spite of all of the challenges that Oliver faces. So in that regard I think I am coping better now than I was months ago. Is that a sign that things will get better/easier in time? I certainly hope so. We took Oliver to the beach last night. It was a gorgeous day and Tobin wanted to dig in the sand. Why not bring the baby along? It was nice to do something as a family. We discovered that Montrose Beach has a wheelchair accessible pathway all the way down from the parking area/sidewalks to the lake. It made it much easier to get the stroller onto the beach. I also thought ahead for when Oliver is in a wheelchair, this will be an easy beach to bring him to, since we can drive/park and bring the chair down to the beach area and then carry him to a blanket or whatever. A few months back that thought would have brought me to tears but last night I just said " Hey, this is good to know for the future!". I am also trying to slowly work on some skills that Tobin was trying around this age. Things like sippy cups and straw cups. I kept thinking "Oliver can't see anyway so what good is putting a cup in front of him?". Well I decided to just try it, and if I can get his hands to the cup and he realizes it's there, maybe someday he will be strong enough to lift it and drink from it. For now he likes it when I help him hold it up and he chews on it a bit until some water comes out. We also put his highchair up a level or two from where it was reclined. This means he is sitting a bit more upright and we're noticing that he works really hard on trying to get his head to sit more still rather than slumping. If I hold the food on the spoon just above his lips he has to move his head up to get the food and hopefully that is strengthening his neck muscles.

I'm starting to realize that he probably won't hold his head up by his first birthday like I wanted him to. It was a goal I had set for him and myself. That makes me sad, but it's a lesson learned that I shouldn't set a timeline for his development. As long as we see progress that will be good enough for me.

Hoping good things are coming...

2010-08-27T14:42:00.000-07:00

Most parents anticipate the day their child learns to drive or graduates from college, big important milestones in life. I just want my child to be able to independently hold up his head and maybe sit on his own. that's it. that's all I ask. Those 2 milestones would be HUGE. It would allow him to use a regular high chair to eat at instead of having to have a special needs feeding chair. It would allow us to bathe him in the regular bathtub or a bigger baby bathtub instead of a special needs bath seat. I'm sure if he were doing those things I'd be wishing he could crawl, or walk. or talk. But for now, I just want him to hold his head up. It would be a huge milestone for us and we'd probably throw a party in his neck's honor.

We had a great week, no major seizure activity as far as we could see, lots of therapy sessions for the little guy and tons of increased movement and activity. Almost too much in fact since he's hardly sleeping at night now and we are up throughout the night trying anything to get him to settle down and go to sleep. He just wiggles and yells and throws his arms and legs around. He's not upset, most of the time he's laughing or just "talking" so we don't really know what to do for him. Maybe it's the medication increase and the dreaded "hyper-active" side effect we haven't seen much of yet.

True to form, Oliver had an awful seizure this afternoon following his neurology appt. It never fails that we meet with our doc, have a great discussion, put plans in place moving forward and everyone feels hopeful and optimistic...and then walking out....that sense of dread that we just jinxed everything...and then the seizure hits. Amazing how consistent that is.

But we have to be grateful for the amazing week we've just had, and remember there are others out there who have bigger and more complex issues to deal with and maybe we don't have it so bad after all. Seizures aside...Oliver is pretty darn healthy for a little guy with CDG and we can't complain much about that.

We've been given the ok and the advice of 3 separate neurologists to go forward with the Ketogenic Diet. So we'll do another 24hour VEEG next week to see what's going on with Oliver's little brain and then try to get schedule in for hospitalization to start the diet in the next few weeks. No med changes until we have the diet well under way. If things are going smoothly, we'll slowly wean the meds starting with the finishing of the clonazepam wean.

Hoping this diet works to both control the seizures as much as possible and to give Oliver a little break from meds to see what his development is like when he's just a baby and not a medicated baby.

Home Sweet Home

2010-08-20T11:52:00.000-07:00

well we are back from Mayo. It was a long trip but it was great to see so many family members while were in Minnesota. Tobin had a great time with his cousins and visiting Grandma Eunice and Papa Bill and staying at Aunt Lisa's house. Our hospital schedule wasn't too intensive and Jason and I even got to sneak away for a date night at the Twins/White Sox game.

Will try to update about our medical appts but there is lots of info. It's all a blur as there was so much discussed during the time but we basically walked away with the realization that Oliver is severely affected by both the IS and CDG so we're just going to start making arrangements going forward for living with a disabled child. Have our PT from EI coming tonight and we're going to talk about getting the process started for a bath chair and feeding chair for now and then look into adaptive strollers that will grow with him. We'll try to start putting away a few bucks a day toward getting a roomier vehicle to accommodate a bigger /more supportive carseat and adaptive stroller, etc. We are going to look into insurance and other organizations to try and help fund some of the equipment Oliver needs and then try and buy some of the equipment that we think would help him but that insurance won't pay for.

Oliver's skin biopsy went well and the stitches can come out next week. I wasn't able to watch it happen as things like that make me queasy but I was in the room and Oliver didn't feel any pain or have any problems with it. We'll have initial results in about 6 weeks and then if his cells don't match any of the known CDG patterns they will try to map his DNA a bit further and isolate the gene or genes that have the mutation. This won't really help Oliver as there aren't any treatments currently, but it is important for further prenatal testing for me or if Tobin has children some day. Drs will be able to test the baby and know for sure if he or she is affected by CDG. Tobin has a 50% chance of being a carrier, 25% chance of not being a carrier. We already know he is not affected. And maybe, if someone , someday discovers a treatment to help CDG patients with Oliver's specific subtype...we'll already know his type and we'll be able to start treatment right away. It's a tricky situation as there really isn't funding or a big push to research CDG and treatments so I won't get my hopes up that there will be treatments one day. For now we just need to treat the symptoms of the disorder.

The good/bad news is, the spasms/seizures seem to be the worst of his CDG symptoms, so we really only have to focus on those. It sucks that he has seizures that are so hard to control but we're feeling grateful we don't have any other major health issues to tackle right now. So we're just going to be very diligent in finding the right treatment to try and get them under control before they progress into another seizures type. That's really our only hope at the moment. We'll just be aggressive regarding the seizures and keep going with as many therapies as we can afford.

We are able to do Ketogenic diet even though he has CDG because he hasn't shown to have any issues with a variety of foods yet and they think his organs will hold up well with the diet, so that will be our next treatment if this larger dose of Vigab doesn't work. I haven't written it off yet, but we're almost a full 2 weeks into the increased dose and he's still having spasms although yesterday's cluster was so subtle and quick that no one would have noticed if I wasn't sitting and staring right at him. Maybe, just maybe, they're lessening in intensity...but we'll see. Our little guy always surprises us, just when we think he's seizure free, they come back with a vengeance. If Keto doesn't work we'll try ACTH and then move on to 2nd line meds from there. I'm a bit torn as to which to do next (Keto vs ACTH) because when Oliver did have one single shot of ACTH he had a seizure free month immediately following which leads me to believe it just might work. But both the epileptologist and the neuro at Mayo said they would try Keto first as it's got less side effects and higher chance of working than the ACTH. Always hard to make this decision when you feel like you're wasting precious time trying to get the seizures under control, but I am going to have to learn patience in order to live life with a severely delayed baby so this is just the first step.

Trying to understand more about CDG we've been googling and trying to find an explanation that is helpful for people (like us) who are not bio-chemists. My mom found this one and the answer is very basic but understandable:

http://publications.nigms.nih.gov/chemhealth/chemist_freeze.htm

Oliver handled the trip very well, with the exception of an awful non stop cluster of spasms on the car ride up to Minnesota. We had to give him a full clonazepam to get them to settle down but aside from that he has been napping great and generally happy. He is even trying harder to roll over. the past few days he's been on his back and really arching his back and turning his head and upper body. once he coordinates his chubby little leg and gives it one swift kick he is going to roll right over! So maybe in the next few months. Perhaps instead of holding his head up by his first birthday, he'll roll over instead. His therapist has recommended using some of these:

http://www.spioworks.com/

we'll see if the squeezy input from the clothing will help him have better awareness of his body.

Also on my wish list:

a Wingbo swing: http://www.wingbousa.com/
some type of adaptive swing for indoor or outdoor use: http://www.especialneeds.com/tfh-high-backed-swing-seats.html

First do no harm

2010-08-11T15:05:00.000-07:00

I've been watching this movie recommended by someone on the IS forums. I'm about halfway through and have cried half a dozen times. This particular 9 minute segment really resonated with me: http://www.youtube.com/watch?v=ulds5oWpKKw&NR=1
In this part, the mom loses her mind because the drs have her child on so many medications, some of them to offset the side effects of OTHER medications. Her child is still having seizures despite all of the meds. It's awful to watch but a fairly good depiction of what a parent goes through when your child has a disorder that is not always treatable and the right combo of drugs can be difficult or impossible to find.

you can watch it in it's entirety if you start with first do no harm 1/10.

Living with Oliver

2010-08-05T14:42:00.000-07:00

I am borrowing a little story from the blog of a parent I met through the CDG family network as it describes very well how I feel most days.

She also has a son named Oliver who is affected by CDG. Her little Ollie has come SO far in his 3 years of life and he is a BIG inspiration for me. I look through his photos and videos when I am trying to imagine how it could be possible that my little lumpy blob could someday sit or crawl or even walk with a walker. But I am trying very hard not to give up hope. I just have to keep reminding myself that Oliver CAN reach milestones even if he hasn't yet...and not to count him out yet....and hopefully getting control of the seizures will be our first step toward that.

As you can only imagine, it is very difficult to describe our experience. This writer puts it into a unique and valid perspective.

Welcome to Holland

By Emily Pearl Kingsley

Experiencing a Child’s Disability

I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this:

When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans: the Coliseum, the gondolas of Venice, Michelangelo’s David. You may learn some handy phrases in Italian. It’s all very exciting.

After a few months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland!?!” you say. “What do you mean Holland? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. You’ve landed in Holland, and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashing than Italy. But after you’ve been there for a while, and you catch your breath, you look around and you begin to notice that Holland has windmills. Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they have there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

still having seizures

2010-08-03T09:38:00.000-07:00

Oliver has had 3 seizures since his latest Clonazepam drop on Wednesday last week. They are coming every 48 hours and afterwards he screams and cries and is really upset. I think it might be because he is more alert/aware and either upset from the seizure or whatever is stressing him (gas, teeth, a cold, etc) is making him cry like a normal 9 month old baby would. Oh wait, he's 10 months old today, I just realized....I just want time to stand still because it makes me really sad that he will be one year old soon. Still not holding his head up, not rolling, not laughing at us. other babies are crawling, cruising, feeding themselves, drinking from sippy cups. We are still just stuck in newborn mode still. While everything changes around us, Oliver is still stuck in the same spot. He is getting more therapy now, we finally have our PT set up to start this month and he has had two OT sessions now. His private PT found a great little cage/bungee cord setup that allows his neck muscles to be isolated so we are hoping to see some progress there. We just keep pushing on ahead with his therapies despite that fact that his seizures are uncontrolled. Hopefully he can still develop (even if it is slower than molasses) and move forward despite having seizures. We are meeting with an epileptologist on Friday, then we're off to Mayo the following weekend, and then a week or so after that we have a follow-up with our neurologist. Between those 3 dr visits I am hoping we get some plan to move forward regarding his medications and someone has some idea for a way to help him. my worst fear is that even if we COULD stop the seizures, and decrease or eliminate the medication that he will still develop incredibly slowly or not at all, and then we won't have seizures, or hyps, or meds to blame it on. Just the CDG.... scary thoughts.

Seizure Friday

2010-07-30T07:44:00.000-07:00

Oliver had a seizure this morning about 40 minutes after I dropped him off at daycare. But it was the first one in a week, so that's pretty good I guess?

Dropped our clonazepam night dose to 1 pill per day on Wednesday this week (1/2 a pill at night plus 1/2 a pill in the mornings)...perhaps it's starting to take a toll on him...

not much else to report.

Therapy

2010-07-27T08:41:00.001-07:00

We started Oliver's Occupational Therapy last night. The therapist was really nice and Oliver seemed to like her. It's always hard to tell but she really had him smiling and trying to laugh a couple times. He was moving so much. She said it's a good sign that he's always on the move and trying to do stuff even if he can't yet. Hopefully once we get him off the Clonazepam we will see more progress. Tomorrow night we drop down to half a night pill. He'll only be on one pill a day for a week, then half a pill just at night for a week. Then...off. Hopefully.

We have a 2nd opinion consultation next Friday with the Epilepsy team at our hospital. I just think it's important to have someone else weigh in on his course of treatment to make sure we're on the right track. I am glad they could fit us in so quickly and hope the appointment is encouraging. After the appointment we will start our Lollapalooza weekend. Jason and I have 3 day passes and we'll be going down to Grant park each day to listen to some great bands. Oliver and Tobin will be hanging with Grandma Patti and Papa Frank. It will be nice to have a little break before our big Mayo trip. Hoping this week goes fast as the weekends are hectic and chaotic but I love spending time with my boys and can't get enough of Oliver's little kissable cheeks.

Hoping August is a big month for us....

dreading the phone calls

2010-07-22T13:14:00.000-07:00

Everytime my phone rings now I start breathing heavy and get really sick feeling, as soon as I see on the caller ID that the call is coming from daycare I know...it's another seizure. The hardest part is answering the phone and being greeted by Oliver's screams. It breaks my heart every time. Not only is he having a seizure, but I can't be there to hold him while he goes through it. I just hung up with our daycare director. She hates making the calls, and I can hear it in her voice whenever I answer the phone. Now I sit here and wonder, when is the next seizure coming and will I be there to hold him next time?

The seizures are different now. The spasms are only on the right side of the body. This leads me to believe that they are originating or affecting the left side of his brain. This could mean that there is something there causing the seizures and maybe a surgery would be a possibility? or maybe not...I've left a message with the nurses at our dr's office to ask about this. If only I could actually speak TO the neurologist. It's hard when the nurses call back, give you a brief one sentence answer and then if you ask more questions they have to send it in a note to the dr. Maybe he could call me back just once?

We started weaning the Clonazepam yesterday since it doesn't seem to be stopping the seizures anymore and (in my opinion) it's really hurting Oliver's development as he has been extra floppy on it. But the worst part of all is that he is still having seizures despite being on TWO anti-seizure medications. It doesn't seem that we'll ever gain control of these seizures. Maybe if we increased the dose of both of his medications. but then what? he sleeps all the time? I know some kids have seizures daily and still go on to develop at their own pace and have great little lives. But Oliver isn't even developing at all. I would settle for slow development. But at this point, he's 9 months old and can't hold his head up yet. Other babies are crawling and standing and babbling. He is just our little lump. I wonder how much his development would be slowed by no medication? Between the seizures and the CDG he is really in bad shape, yet physically super healthy. Organ function is great, he is growing taller and getting heavier, and he looks like a normal baby when laying down next to any other baby. But something isn't right. We can't get control of these seizures. I just don't know if anything is going to work, or if there is anyone out there who cares enough AND has the medical knowledge to make a reasonable suggestion. Because everything we've tried so far has failed. It's hard to be patient all the time, waiting for the dr to call back, waiting for the dr to formulate the next step in Oliver's treatment, waiting to go see a new doctor at the mayo clinic. Waiting waiting waiting. I'm tired of it.

ERG

2010-07-08T11:53:00.000-07:00

We had our ERG this morning. As scary as it looks, we were reassured it's actually painless for the boy, and believe it or not, he's sound asleep in this picture. So we met with the nurse, got some drops and waited 45 minutes while his eyes dilated. We went down to the coffee shop and Oliver had a bottle. We saw one of the hematologists we work with and then , on our way back up to the opthamology floor for our ERG we bumped into our pediatrician, who was doing his rounds at the hospital. Sad when a large hospital becomes such a small world that you see many familiar faces in one visit. We met with our opthamologist and then went in for the ERG. The procedure was very easy, Oliver was asleep the whole time. He complained just a bit when she put the numbing drops in his eyes (they sting a bit) but then went back to sleep and cooperated for the whole test. The results were good. So far...retinal function appears to be normal. They
noticed a bit of low numbers during the "lights on" portion but think that was because he was asleep and his eyes were sort of rolled upward at the time. His numbers during the "lights out" portion were perfectly normal so the dr thinks it was just a fluke and not an indicator of any issue. So that will serve as our baseline ERG and we will do another one in 6 months. The purpose of this test is to measure his retinal function and keep an eye on it (pun intended) while he is on Vigabatrin, since Vigab can have the tendency to reduce retinal function and cause tunnelvision when taken for a long time at a high dose.

After the ERG I had to get to the office for a meeting so Jason is spending the rest of the day with the tater tot. Oliver has his 9 month checkup at 2pm which should be fairly uneventful. So we should be done with appointments until our Mayo trip in August!

We are still waiting to hear from neurology about Oliver's most recent seizures to see what our med plans are and if we are going to continue with the plan to decrease clonazepam or if we are going to switch to a "plan b". Hopefully whatever we do gives the boy a little relief from the seizures!

He had his best night's sleep last night, in , well....ever! He was asleep by 9pm and we heard him once at 4:45am but didn't go get him. He was just kind of talking to himself and then put himself back to sleep. At 7am we woke him to give him his meds...I wonder how much longer he would have kept sleeping?!?!?! Hopefully that's a new pattern that will stick around for awhile :)

Grandma Eunice and Papa Bill fly in tonight at 8pm and we're very excited to spend some time with them, and to have the chance to spend some alone time with Tobin while Oliver hangs inside hiding from the heat. Both of his seizures this week happened after he had been out in the heat for a bit so I am hoping if we keep him in the a/c consistently ...maybe he won't have anymore? That would be good and bad. Bad because it would mean that we can't all go do outside stuff as a family until the heat settles down some, but good if it keeps him from having seizures.

Not much else new around here, a nice break from dr visits for Oliver, Tobin is having a great summer playing with friends and going to various pools and parks, and Jason and I are just slowly trying to manage everything that comes along with caring for a very special little baby while balancing everything else in our lives.

so confused

2010-07-07T14:02:00.001-07:00

So Oliver has seemed to be feeling better after his sore throat and low fever and he went a few days without seizures...from June 29 to July 4. He had a seizure about an hour after we got back from fireworks and we thought it was maybe because we were sitting outside for so long and it was warm or something. I was hoping it was just a fluke, but he had another seizure today at daycare, so about 2 - 3 days apart. It could be that he still has a stuffy nose, or is in a state of constant teething at 9 months old. Or maybe the medication is the problem. We haven't even started our wean because our neuro said to wait a week and we keep calling back reporting seizures and being told to wait one more week. At this point I don't know if a wean is a good idea...or maybe he is already kind of weaning since he has gained weight and been on the med for awhile and his body could be getting used to it. It really seems like his body gets used to a medication and finds a way around it to have seizures. which is scary, because eventually we'll run out of medication. Maybe it's time to try the keto diet?

I would love to know what his EEG said last time. The dr said it showed improvement but I assume he still has the hyps...and what happens when that is gone and he's still having seizures? This is all such a mystery and it just plain sucks!

In the meantime he's been doing well otherwise. He has more awake/alert moments and seems to be laughing/smiling big time when Jason bounces him up and down. Who knew he liked to bounce? I wonder if taking him off the clonazepam would allow him to reach a milestone? My goals is for him to hold his head up by his first birthday but it doesn't seem likely with the clonazepam. At the same time, I'm tempted to increase the dose to get the seizures to stop but then he'll be even more addicted!

We have speech therapy starting next monday, and OT starting at the end of the month so at least we're moving along with Early Intervention. Hopefully they can find a good PT solution for us soon.

one step forward, two steps back

2010-06-28T07:57:00.000-07:00

Thanks for the theme song Paula Abdul!

So we had an amazing neuro appt on Friday, everything went better than we could have hoped. The results of our 24 hour VEEG were in and it appears that Oliver's odd behaviors were not seizures, and not only that but there weren't any minor subtle seizures picked up either. Which is great, even though he usually only has definite clusters several days to a week apart so we didn't catch one but it's good that there isn't something else going on that we've been missing. Not only that, but our neuro told us that his EEG is actually starting to look improved. There are 'state changes' which means that the patterns differ during asleep and awake times. Previously it was just 100% consistent chaos whether asleep or awake. So , he still has abnormal patterns but the suspicion is that they are trending towards improvement. Not a clean EEG but it's better than any previous ones so we hope that will continue to just get better and better.

Since Oliver had only had 2 small subtle seizures about a week apart prior to our appt, and his EEG looked better, and his development was completely stalled (perhaps due to meds), the neuro suggested weaning 1st one medication, and then maybe the other to try and figure out which med was helping. It seems that one (or maybe both) was doing something but we weren't sure which. The clonazepam is so similar to valium that it just has him very chill all the time, and perhaps that was limiting his development. So the thought was to wean that one first. We were going to drop a half tab each week until completely off the medication, calling neurology in the meantime if any seizure activity increased. If so, we'd adjust the taper of the meds and wean more slowly. If we successfully got him off of the clonazepam, we'd next tackle the Vigabatrin and try to very slowly wean him down so that he was off around his 1st birthday. Amazing. We left feeling so hopeful and optimistic. Our neuro congratulated us on being proactive by having all of our appts booked and going to mayo, etc etc. Smiles all around.

Several hours later, I got a call from daycare and could hear Oliver screaming in the background. He was having a seizure. Unbelievable. All weaning plans are now halted for a week to see what's going on. He sounded stuffy on Friday so we're hoping he is just sick and his defenses against seizures are lowered. He had another seizure Sunday afternoon as well. They haven't been this close together in a long long time. We're keeping him on motrin in case it's teething or an ear infection and I've been suctioning his stuffy little nose. Trying to keep him hydrated and happy. I am going to call his pediatrician today and see if we can pop over this afternoon to just peek in his ears and see if he has an infection brewing. Now we just have to hope that he gets over being sick, the seizures decrease again and the wean process can begin.

But this leaves me with so many questions. If he is going to still have seizures every time he's sick, shouldn't we keep him on medications to fight them? Why would a neuro recommend a wean of both meds if the EEG isn't normal and if the kid is STILL having seizures. granted they are few and far between but he's still having them. maybe he is just trying to figure out which of the 2 meds is helping the most and then he'll stay or go back on that one? Maybe he saw how horribly behind Oliver is in his development and wants to see where he would be without so much medication? I didn't question any of this at the time because he hadn't had these last two seizures yet and I agreed it would be nice to see if he had any chance of developing off the clonazepam.We'll never fully know if he is so behind based on the CDG, or the infantile spasms, or the meds. Or a combo of the 3. It's just so incredibly frustrating that every time we meet with our neuro, we start to let ourselves hope for a better outcome and then have all of that dashed when the seizures return. prior to Friday I had a very negative outlook on all of this, and then I allowed myself to be cheered up just a bit. But I think that's harder. It's hard to be positive all the time and just keep getting kicked down but if we don't stay positive than Oliver will think we're letting him down. It's just really hard day in and day out to pretend that things will be ok all the time. Even my super positive husband finally admitted last night that we might have to start thinking about things like wheelchairs and vans in the not so distant future.

Sick babies in the heat are not much fun for anyone. So Oliver spent most of the weekend inside with Jason while I embarked on fun adventures with Tobin. I know if a regular 8 month old had a cold and slight fever we probably would have done the same, but it feels more difficult because we have SO many of these weekends where we divide and conquer. Awhile back, before Oliver was ever diagnosed, I was watching an Oprah episode about a family who has a schizophrenic 7 year old. They live in such fear of her hurting her little brother that they live in separate houses. The parents take turns staying with the girl and her little brother. So the parents are never together. One is always with one child while the other is with the other child. I thought to myself, that must be so difficult on a marriage, but what choice do they have? I never would have thought that would be us one day. of course, we're not in separate houses but as I was out and about with Tobin all weekend I kept thinking of Jason and Oliver at home and wishing they were out with us. Tobin didn't seem to mind since he's a mama's boy. He had a blast at his first movie (Toy Story 3) and we went to the pool and swam for hours. He loves "swimming". He can't really swim yet but he likes hanging out in the water. Yesterday he learned to hold his breath and go under and then pull himself back up on the wall. I think that's a big step toward getting to be more comfortable in the water. He slept great last night as a result of no nap and lots of swimming!

Jason and I seem to have both caught Oliver's cold, which means it's likely viral and not bacterial so that's a good thing. But we both have sore throats and I am super stuffy with lots of sinus pain. No wonder Oliver is so whiny. Hopefully this will pass soon and the seizures will decrease again and we can move forward with our med wean plan. fingers and toes crossed!

now we wait

2010-06-17T13:27:00.000-07:00

Spent the night at CMH for our overnight 24 hour VEEG. Relatively uneventful but I hit the button for any behaviors that seemed questionable. They will write up a report which we're review with our neuro next Friday. Until then, we wait and hope the seizures don't continue and keep praying that the behaviors we see are not actually seizures but just funky baby behaviors. We'll see.

I have a feeling we'll only get bad news as that seems to be all we hear lately. Reading up on CDG is depressing. So many children without the ability to walk or communicate with their family members. I know it's not the case for all, and I know it's too early to tell what will become of Oliver, but it's still really hard to think about all we're going to go through with him. It becomes so overwhelming that I try to just shut it out, but these thoughts always creep back into my head. How much pain and heartache can one family take?

A very silly nurse asked me this morning if Oliver was my first baby. I told her I had another son at home who is a great big brother. Then she asked when I was going to try for a girl. I very quickly replied, "we're not". She said, wow you answered so fast, how are you so sure. Um, lady, you saw Oliver's chart. He has a disorder that he likely inherited from us. Why on Earth would we bring another baby into the world and risk them facing the same struggles and pain that Oliver is? Why would we do that to ourselves? People are crazy. It's those comments that get to me. I can understand them coming from someone who doesn't understand that this is not something Oliver will outgrow. But it's unacceptable coming from a medical professional who should know better. It's things like this, and my stupid babycenter emails that tell me "your baby is 8 months and 3 weeks and is likely pulling to a stand". I don't know why I haven't unsubscribed to those. He doesn't pull to a stand, he can't even hold his own head up, and at this point is in worse shape than when he was 3 months old. What chance does he have to ever be "normal"? Absolutely none. So we push on, day by day, trying to be grateful for what we DO have. But it's really really hard.

busy weeks ahead

2010-06-14T07:52:00.001-07:00

We've got a lot going on the next couple of weeks after a relatively quiet spell. We had 18 seizure free days. It was a good run. About a week into our dosage drop with clonazepam Oliver had an afternoon seizure this past Saturday. It was short and the spasms stopped after a few minutes. Afterwards he went back to sleep and woke up 20 minutes later in a good mood. Then, last night he had a really rough time but it didn't match his typical seizure pattern so we're unclear if it was actually a seizure or some other pain response or a new type of seizure or what. We tried an extra pill of the clonazepam, waited a bit and then tried motrin. He eventually settled to sleep. The hardest part is that 8 month old babies sometimes cry, have nightmares, have teething or gas pain, etc. We were so used to a baby that never cried unless seizing that we assume any time he cries that he's having a seizure. The crying wasn't like his typical cry that he has when he has a spasm but it was coming in waves like a spasm. Lots of lower lip pouting. Poor little guy. I just hope he gets through the next 2 days at daycare without a seizure and that we get some good feedback at his 24 hour Video EEG this week.

We go into the hospital on Wednesday morning and should go home Thursday morning. He'll be hooked up to the EEG machine the whole time we're there so hopefully it will give us some insight as to what goes on in his brain at various points in the day. If he is going to have more seizures this week, it would be best if they happened while he is hooked up to the machine. But hopefully soon after that we can increase his dose or change his medication again to get another seizure break. In the week on the lowered clonazepam dose he has been waking up a lot more at night, usually to laugh but we don't know what he's laughing at. I can't just enjoy it, because I have a feeling it's seizure related....but wouldn't it be great if those were a few hours of clarity and he was just making up for lost time by talking and laughing and practicing those skills? He has been more alert and aware during the day time too, which is nice. Feeling a little muscle tone come back and he's been reacting to the sound of Tobin's voice, which Tobin really likes.

He's still eating great and generally happy so we can't complain too much, but these seizures are just really painful all around. I hate that they are so stubborn and keep finding their way around / through his medication.

He has physical therapy tomorrow, then our 24 hour hospital stay and then next week we have eye dr appts for both boys , PT for Oliver, and a follow up with our neurologist. we also have been contacted by the speech therapist assigned by EI. She will be coming once a month and we should have our first appt in the next two weeks. Still waiting for a PT and OT to be assigned. We're doing as much as we can with him during his awake hours at home.

Aside from the seizures we had a fairly decent weekend, Tobin got a cute new haircut and Jason go to see the Cubs/White Sox battle it out at Wrigley Field. I took Tobin to a local street fest with our neighbors yesterday and the boys got to bounce in a bouncy castle, have corn dogs, lemonade, and funnel cake and then Tobin took a nice long nap and also feel asleep fairly quickly at bedtime last night. Might need to get a bouncy house for the backyard....

Minnesota or Bust

2010-06-02T13:37:00.000-07:00

So we haven't seen any seizures since starting the clonazepam on the 24th. We were back in the ER on Sunday because Oliver had a fever of 102 and we had to follow our standard protocol of blood culture, cbc to check his absolute neutrophil count, and possible iv or shot of antibiotic. Jason spent the 7 hours there with Oliver while I put Tobin to bed and caught up on laundry. Sad that it's become a little routine. The good news is there isn't a bacterial infection and it's likely just a virus. He is now fever free and still has a bit of diarrhea but seems ok otherwise. I , unfortunately, caught the same bug and was super sick yesterday and still feel "off" today. Hopefully it passes quickly for all of us.

Interestingly enough, Oliver's ANC (Absolute neutrophil count) was 1192. anything above 1500 is normal. 1000-1500 is mildly neutropenic, 500-1000 is moderately neutropenic, and anything under 500 is severely neutropenic. Oliver has been in the severe category with counts under 300 for the past 2 months. Not sure if the increased count was due to the virus and his body fighting the infection or if his neutropenia is cyclical or if it's actually on its way back up. We have a hematology follow up tomorrow so they will likely do another CBC to see. if it's still up tomorrow and then up again in another week or so , I am going to ask the neuro to reconsider doing a short course of ACTH as long as his levels stay up while in the hospital. Would love it if the counts would go up long enough for us to take the opportunity to try a treatment that might clear his hypsarrthmia.

I got a voicemail today from the mayo clinic and they have us scheduled for Aug 16-18th! Finally, something to look forward to. I am very excited to have the chance to sit and talk with this dr who knows so much more about CDG and IS than anyone else we've met! Waiting on a call back from the neuro's office about the Clonazepam as they gave us a 30 days supply but never specified if he was to take the full course or if we need to gradually wean him down before stopping (or if they intend to stop)?

That's about all the news. We had a nice weekend before the ER visit. Spent Sat at a bbq at the neighbors and Tobin had a blast playing with his buddies. Sunday before the fever hit we went to the Morton Arboretum and Tobin got to catch tadpoles, play in the stream, and walk in a netted cage in the tree tops!

Scary Monday

2010-05-25T14:00:00.000-07:00

Had to rush the little guy to the ER yesterday because he had continued clusters of spasms and in between seemed to be having other types of seizures. It scared the living daylights out of me and I really didn't know if it would ever end on its own. Worst thing I've seen yet. Probably not a good sign.

So we are now on clonazepam along with the Vigabatrin and Oliver is also taking miralax to help with constipation. So the meds just keep piling up. The clonazepam is supposed to be a short term thing to see if it keeps the seizures away for a couple of weeks and then we'll wean off and see if they come back. If so, they are going to max his Vigabatrin to 150mg/kg (currently on 125mg/kg) and see if that helps. The neuro that came to see us in the ER said if it's going to work, it'll work by 150mg/kg, so it's scary to be so close to that upper limit and still be seeing seizures (worst seizures yet). Sounds like they don't think the hyps will go away with meds and we will just have to wait until he's 18-24 months and he will hopefully outgrow that pattern but then he'll be on to other seizure types. The good news is there are 21 medications to treat "seizures", so hopefully once he moves on from Infantile Spasms we can roll through the medication lineup and find one that works for him. In the meantime we will keep trying to max the vgb or stack another med on top of it to keep the seizures away and just keep hoping for a miracle with the hyps on his EEG. Since he is neutropenic (his absolute neutrophil count is under 300) he will never be able to do ACTH. They believe that he might outgrow the neutropenia but probably not anytime soon. The keto diet will probably not be an option as well because of the CDG, but if things get bad enough with the seizures to the point where vgb plus an add on aren't working , I might push for that.

Once the seizures stopped he was a trooper at the hospital, got his iv in with 2 sticks and got some antibiotics just in case he has some kind of bacterial thing brewing. His ability to fight bacterial infections is severely lowered because he's neutropenic and the neutrophils are the part of your white blood cells that fight bacterial infections.

Tomorrow he starts daycare. I am SO nervous because we don't have control of the seizures, so he's going to be having them at school. I am worried they won't recognize the seizures and tell me about them, or they will call me every time he cries thinking it's a seizure and I'll be running out of work all day long. Beyond the seizures I am so nervous about him getting bacterial infections and falling ill constantly. it'll mean lots of ER trips and IV antibiotics. But it's affordable, and I think the stimulation of other children will be amazing for him. Plus, his big brother goes there every day and it would be nice for them to be at the same school. We'll give it a few weeks and see if it works out.

Jason and I both had birthdays this weekend. Unfortunately he spent his birthday in the ER with me and Oliver and we didn't have time to make a birthday dinner and open presents. We are going to try again tonight!

6am seizure wake up call

2010-05-11T07:10:00.000-07:00

Waking up to the sounds of your baby screaming out in pain is an awful way to wake up. Even more so when you recognize his very distinct cry, that only means one thing....seizure. When you rush out of bed to grab him and hold him until it passes and wish with each spasm that you could somehow transfer all the seizures out of his body into yours, you realize that life just isn't fair. I had no idea how helpless I would feel as a mom to not be able to fix my child. A kiss on a skinned knee, some ice for a bloody nose, a joke to cheer up a grumpy mood, a piggy back ride when they're tired of walking. I can do those things. I can fix it. I can't fix this. Despite my phone calls to try and increase his medicine, add a medicine, something, anything. Despite my research into alternative therapies. Digging and searching for the magic potion to make this all better. Knowing that Oliver will face a lifetime of seizures and other health complications overwhelms me like an 800 lb weight on my head. He is only 7 months old, he never even got a shot at a normal life and with each seizure I am reminded just how much we have left to battle against. It is far easier to take it day by day when those days are seizure free. I have cried more tears in the past 2 months since his initial diagnosis of Infantile Spasms than I ever have in my 29 years of life prior to that day. Have we really been battling this for 2 months now? It seems like such a short and long amount of time all at once.

One bright point in my day is the following email I received from Aetna this morning, looks like we're heading to Minnesota:

At this time, Marc Patterson, and the Mayo Clinic, both
participate in your Aetna health plan. 
You are not required to obtain preauthorization.

Is it time for a 2nd opinion?

2010-05-10T13:25:00.000-07:00

Finally got a call from the nurse at the neuro's office. He doesn't have a plan. He doesn't want to do anything different right now, and it's really upsetting. Oliver has had 2 seizures in the past 4 days. I would consider that a bad sign, along with the fact that his EEG shows no improvement since March 30th. The neuro wanted to try ACTH again but we can't, because Oliver's severely neutropenic and because he currently has an ear infection. So until his levels get better (if they get better) and he doesn't have any other issues going on, we can't do the ACTH. He doesn't want to increase his Vigabatrin dose either. He had an ear infection 2 weeks ago and didn't have seizures like this during it. So I don't really think the seizures are being caused by the ear infection. Maybe they are caused by teething? who knows? I just want them to stop. I wish someone could offer us another option, because I am running out of patience. I am trying to take it day by day but it is just too hard. I feel like there could be something out there that can help Oliver but nobody is trying to find it. Isn't that the job of the medical professionals? To offer a plan? an option? How can keeping him on the current dose of medicine be the best option considering his EEG hasn't cleared and his seizures are coming back?

Oliver goes to school!

2010-05-10T11:39:00.000-07:00

We heard back from hematology on Friday. While Oliver is still severely neutropenic (His absolute neutrophil count is 274, should be up over 1500), the dr said she wouldn't prevent him from going to daycare. We just have to be careful and cautious and call if his fever goes over 101 at any point. Since he's likely to get sick a lot at daycare that will probably happen often, which will result in a trip to the ER and a blood test. if his counts are low they will likely start antibiotics since the issue with neutropenia is that he'll be unable to fight bacterial infections very well. He should fight viruses just fine though.

He had a seizure yesterday morning, right as he woke up. happy mother's day to me! It was hard to watch but we quickly moved past it and started prepping for our brunch. We got to see tons of friends and had a great time eating and talking. Tobin ran into a fence face first and had a bit of a cranky day from all the excitement but hopefully it was still fun for him. Waiting to hear back from the neuro about increasing Oliver's Vigabatrin dose. Hoping we can and that it will keep the seizures away again. I don't know what their plans will be for clearing his EEG but I sure hope they have one and that it works. Of all the things Oliver has to face in his lifetime, I'd love to move past the Infantile Spasms at some point if we can!

New Shades

2010-05-07T13:59:00.000-07:00

Oliver got some new sunglasses today. We noticed last time we went to the park and it was really sunny, he seemed to shut his eyes quite a bit, and his pupils got really really tiny. I think this will help so he can be out and about this summer. And he looks SO cool!

day by day

2010-05-07T12:28:00.000-07:00

We are truly taking things day by day after another seizure struck. It brought me back to reality. I had enjoyed a long month (one whole month) without having to watch Oliver have a horrible screaming cluster of seizures. But , as our family's luck would have it, on Cinco De Mayo he woke up at 11pm with an awful one. This was the first one in a month and so hard to see as we thought maybe, just maybe we were on the path to seizure freedom. Time will tell in the next few days if that was an isolated incident or if it's time to start trying different meds, increase his Vigabatrin dose or something else. Oliver was scheduled for an EEG yesterday since he had been doing so well with decreased seizure activity. Of course, the night we are trying to sleep deprive him for the EEG, one strikes. He has had an ear infection so maybe that had something to do with it? who knows. His seizures, when they first started, were every 24 hours approximately. So we've gotten past that point now without a 2nd one, but I am so nervous that more are coming and it will be time to take action.

He did really well at his EEG yesterday. We're not EEG specialists, but Jason was looking at the screen while the test was being done, and Oliver definitely still has a hypsarrthmia (I can never spell that right). His brain wave patterns were all over the place. No official report from the neuro so we don't know if there are other seizure types present as well or if the hyps has improved at all. We'll wait and see what they say and what they want us to do about the return of the seizures.

Oliver also had a hematology consult. They are going to try and get to the bottom of the low red and white blood counts for us. First we do blood tests (we should hear results sometimes in the next few days), and then if those don't tell us anything, we move on to a bone marrow biopsy :(

Last night we got home a little before 6pm and Oliver fell asleep, slept through his Vigabatrin (swallowed the meds while sleeping!) and kept on sleeping until 11pm! poor little tater tot. We all went out to eat down the street at our local bar and grill and had a really nice dinner. Oliver slept the whole time, Jason and tried some different beers and Tobin had a really fun time driving his firetrucks all over the table. I am now realizing that we have to take advantage of these times and moments. Oliver is small and portable and a good sleeper when napping. We should get out and about as much as we can. I can only imagine the logistics of traveling with a child in a wheelchair, or going out to eat with a kid who cannot sit up on his own.

This morning I went to Tobin's school for a mother's day event. He painted my fingernails (you can imagine how good they look), then I painted his nails. Then he did my hair, gave me a massage, and rubbed some lotion into my hands. I felt very pampered. We have a fun weekend coming up. Some friends will be coming by on Sunday to celebrate mother's day with us and have brunch. I am very excited for a cup of coffee and chatting with friends while the kids destroy the house, it all sounds very "normal" and that's just what I need!

We are still waiting on EI to get us started with therapy for Oliver and doing private PT in the meantime. It's expensive though so I don't know how much longer we'll be able to keep it up. I am going to try and find a therapy center that takes Aetna in network that is just as good as the one we currently go to, but it is bittersweet as we all really like the current therapist and she does a great job with Oliver. With daycare/nanny costs coming up soon we have to make cuts somewhere. In my fantasy life we win the lottery and both stay home with Oliver :)

A picture update!

2010-04-29T09:57:00.000-07:00

Bathtime Fun! You can see a little bruise from one of Oliver's many needle sticks on his arm. Poor little guy is quite the pin cushion these days.

Learning more about CDG has been informative and scary. I try not to spend too much time researching stuff on the internet as the extreme cases scare me, but make me feel more prepared to handle the challenges that Oliver might face. The mild cases give me hope that maybe our little guy will be one of the lucky few.

In the meantime, while we're waiting for appts, fighting the seizures, learning about the disorder, etc we are trying to also live our lives. Going to work/school. Playing at the park on the weekends. Going out to eat. Taking advantage of the fact that Oliver is still so little and not mobile yet. He's still at the age where he will sleep through a meal at a restaurant while we eat, and Tobin is so much more well behaved than when he was a toddler. It's nice to enjoy these times in between hospital visits and health scares. Hoping the pictures and memories will carry us through the tough times yet to come. Frustration is knowing that your tiny little guy will always face struggles and not being able to do anything to stop that fact. Arming ourselves with the tools to spot difficulties and get services for them is the best we can do for him now. Enjoying him in the meantime. Like bathtime, rocking him to sleep, laughing when he spits his applesauce all over my face during a feeding, giggling when Tobin pushes on Oliver's cheeks and says "smoooshy, smoooshy". They are pretty smooshy, perhaps he gets that from me.

Back from the Neuro...

2010-04-28T13:45:00.001-07:00

So we met with our neuro today. No real results to get or anything but nice to have a face to face with the man who makes all the decisions. We talked in more depth about the CDG and further steps related to that. The general consensus is that Oliver needs more testing. The decision is up to us whether we want to go through all of that testing at Children's or if we want to book an appt with the leading expert in CDG (who is also a neurologist). He is located at the Mayo Clinic in MN and we would undergo all of our testing there. We'd still followup with our team here in Chicago but we'd have a nice face to face consultation with the CDG expert and maybe yearly visits back with him. The time in MN is no big deal but it's up to Aetna to tell us yes or no on funding the testing. Our Neuro said that the testing has to be done regardless so why not do it there. The extra cost of an office visit with the CDG expert isn't big enough to deter Aetna. He figures they'll say no the first time we ask but he's going to write letters on our behalf to try and make it happen. So hopefully that will be our next step in terms of the CDG. From what they see on the blood tests, Oliver definitely falls into the spectrum of CDG but we cannot say specifically how it will play out for him. Once we do more testing we'll either discover that he has a subtype that matches subtypes already out there and from that we can guess more about the future based on what the other patients with that subtype have seen in their journey. we might also discover that Oliver has his very own specific subtype and he is the only one in the world diagnosed with it. With that comes a bit of mystery because we won't know how it will play out for him, but it also brings hope that maybe he will have a mild case. The way CDG works is such a mystery in that it affects organs but not always the same ones. Clearly it affects Oliver's brain as he has the seizures and the nystagmus. We don't know if it's affecting other organs or if it will affect other organs down the road (that's hard to imagine).

As far as the infantile spasms, he said (and this part brought me to tears): " Oliver is doing dramatically well" and is showing great progress with this dose of Vigabatrin. He mentioned the one single shot of ACTH might have even done some good (let's hope!). So we have another EEG scheduled for next Thursday, May 6th. He said not to be too discouraged if the EEG isn't clear as sometimes it takes a little while for the EEG to clear after the spasms disappear. So hopefully that will show some improvement. We also have our hematology appt that day to learn more about his blood counts being low as well as possible ways to raise both the red and white blood counts. The results from friday's blood draw are the same as they were in the hospital earlier this month, but it's probably related to the CDG as well.

Since the blood counts are still low, we're advised not to put Oliver in daycare until we meet with hematology and then we'll find out more after that appointment. Jason will be taking the week off next week to be Mr Mom and then Grandma Eunice has generously offered to come back out for 2 more weeks while we either get Oliver signed up for daycare (with the blessing of the hematologist) or search for a nanny.

Development wise, the neuro seemed a bit concerned but mentioned that Oliver has the odds stacked against him with the IS, abnormal brain pattern in the EEG, CDG, etc. So there isn't a real way to tell why he struggles, it's likely a combo. But, we see the small improvements Oliver makes in PT each week, and hopefully he'll surprise everyone and do more than they expect.

So the next steps are to meet with Hematology, repeat his EEG, and fight Aetna to the death to get them to approve the next round of testing either here at our home base or at the Mayo Clinic. Then we'll have the skin biopsy done and learn more about CDG and what subtype Oliver has. In the meantime we keep hoping, praying, making him workout on a daily basis and surrounding him with love and kisses!

After the appointment we went to Revolution Brewing and had some good beer and good food. A nice walk in the sunshine on the way home is always a good way to finish out a day at the doctor.

Sleep!

2010-04-26T12:12:00.000-07:00

Finally got a decent night's sleep last night. We put Oliver in his own crib, hoping he'd spend the first half of the night there. Of course, Mr Gassy decided he would rather be in bed with Grandma and Grandpa so they could roll him on his side and help get his little farts out. Luckily he slept in between gas attacks. He came downstairs to eat around 2:30 and was ready to go back to sleep about 3:30. We put him in the bed in between us (this is becoming a very frequent thing) and he put one hand on Jason and one hand on me and closed his little eyes. So sweet. I think I just had to put him on his side once and that was it for the rest of the night. I woke up to my alarm at 7:15, first time I've actually woken to an alarm in about 6 months!

Apparently Tobin decided to be the early bird today and was up at 5:15 and then up for the day at 6:10. Early bedtime for him tonight!

We had a great weekend. Papa Bill is in town and helping Jason with projects around the house. We took Tobin to his last music class of the season and a birthday party with his school friends. It is always nice to get out and visit with other parents and give Tobin the chance to play in new places. Sunday night Oliver was hanging out next to me on the couch and Jason came over to say something. As soon as he heard Jason's voice Oliver spit out his pacifier, got a big smile on his face, and laughed. It was the cutest thing in the world. Things don't come easy for my baby. He has to work much much harder than any other kid to do simple things, so when we see little bits of progress like him recognizing one of us and smiling, it means more than the world. I can only imagine how much I will fall to pieces when Oliver finally starts holding his head up, sitting up, crawling, or maybe even walking. I just keep hoping that all those things come for him despite the odds being stacked against him.

We have a busy week this week. Appts with both our neurologist and his 6 month checkup. Time for the dreaded talk about immunizations. Last I heard, the ped wants to give Oliver the hib, as it's not a live virus. He does agree that we should delay any vaccine that is live as well as completely eliminate the pertussis as it's known to cause seizures and they advise against it for any child with an emerging neurological condition. Still haven't heard back from EI about our next steps (should be getting a copy of the eval and getting on the schedule to start the PT/OT/ST). Still haven't heard back from geneticist's office either. But we do have appts to see hematology and gastro. Maybe the gastro can shed some light on the whole gassy issue...then again, it's likely related to CDG and there may not be anything we can do for it. If it weren't for gas, I think Oliver just might sleep through the night. At this point I'm considering a king sized bed and just keeping him in bed with us so we can doze in between his gas attacks. They took some blood on friday to compare his white counts to our last hospitalization. This will tell us if he's improved or not, and also add one more data point to compare to when he goes in to get his counts checked in early May. If things look better, he might even be able to go to daycare next week since we're losing our live in help on Wednesday. If not, we'll have to pursue a nanny or consider having Jason take FMLA if there is a chance his blood counts will go up at some point. Such a mysterious little guy.

Once I get some 'free time',. I'll post a video of Oliver eating bananas on youtube. He is doing so great on solids and seems to perk up when he gets put in the high chair. He knows the food is coming! We're trying carrots for the first time tonight. Exciting!

One day left of Augmentin!

2010-04-22T13:58:00.000-07:00

Only one day left of the dreaded Augmentin. We got ourselves down to a schedule so that Oliver keeps both meds down and he hasn't had any vomiting in a few days. Tomorrow is his last day on the antibiotic so we'll be back to just the Vigabatrin. Yay!

Something I want to write, but don't want to write at the same time, because the moment I speak it , it will happen....but we haven't observed any seizure activity for quite some time. I think the last major cluster was April 5th in the hospital the morning before his one and only shot of ACTH. We saw some jerks without crying the day before his ear infection was diagnosed..and I think that's about it. I know that with the CDG he is likely to always have some type of seizures so I am always expecting another one to come, but the brief break in activity is SO nice. Now that I've written this they will pop back up I'm sure.

Oliver is doing GREAT with his workouts with Grandma Eunice and goes to see his favorite PT tomorrow. The therapy sessions are so good for him and me as well because I always feel so hopeful leaving the center. He is making small strides each week and it's extremely encouraging. I just keep hoping that he will outperform everybody's expectations. You would never expect this from his first colicky / cranky 4 months but he is the sweetest little baby. Always happy, hardly ever complains (unless we're rapidly shooting Vigabatrin down his throat), and even gives us little smiles and coos at us to let us know he's ready to join in the conversation.

We started solids about a week ago and the little man is learning so well. I would say he is doing just as good as Tobin did at this age, which says a lot. Oral motor skills like eating are a good indicator of his abilities in my opinion.

Tobin had silly dress up day at school this week and I posted his super cool outfit on facebook. He is doing so great with all of this and basically raising himself at this point, ha! Hopefully the summer will bring lots of opportunities for all of us to get out and about together. I think it's good for Oliver as well. We spent the day at the children's museum last Sunday and Oliver really seemed to like the sounds and lights and colors.

We are in the process of finding out if Oliver can attend daycare. Tobin's daycare said they would take him, but we need to get an all clear from the doctors since his white blood count is so dangerously low. We don't want to expose him to anything that could make him really sick in case his body can't fight off the infection. Hopefully they will retest his blood soon and give us the all clear! We meet with hematology on May 6th and will know more. Still waiting on the appt with the geneticist to learn more about the CDG and find out how this ties in to our family. Are Jason and I both carriers or is this some genetic mutation that starts with Oliver? I have a large list of questions I am carrying around. I think I add one or two a day. Once I sit down with the neurologist next week I hope to get many of them answered.

Thanks for keeping us in your thoughts and prayers. We received a really nice prayer shawl from a member of Hanna's church. They added Oliver to their prayer chain. I put the shawl on Oliver when he was napping and then Tobin tucked his stuffed frog in with him. That night, Haley decided she needed some prayers and curled her kitty butt up on the shawl to take a nap. It's getting lots of use.

Ear Infection!

2010-04-14T09:02:00.000-07:00

Oliver was being a bit cranky on Monday and had a little fever so we took him to the dr Tuesday morning. He has an ear infection, but luckily despite being sick and having a fever we didn't see a seizure increase so that's good! He is on Augmentin which is really roughing up his stomach. For some reason the past 2 times we've tried to give him his Vigabatrin he's projectile vomited all over the place. Once his stomach is empty we've been able to get some Vigabatrin in there but we don't know if it's the full dose or if we overdosed him (hard to tell how much was absorbed before he vomited). Poor little guy. The good news is, he hasn't had a fever since monday night and he IS keeping the Augmentin down so hopefully we can figure out a way to get him all his meds without any vomiting and in 10 days the ear infection will be gone and he'll be back to just the Vigabatrin. I think a shot of ACTH would be easier to administer that is point!

Oliver had his EI evaluation yesterday, finally. Looks like they are recommending PT once a week, OT twice a month, and Speech once a month. Once his strength gets better on the PT side they'll ramp up the other therapies. Hopefully they will find a team of therapists really soon and we can get him started with the home therapy and see some improvement. They did stress trying to get him to start on solids to help with the muscles needed for speech, so maybe after this ear infection madness is over we'll slowly introduce some runny cereal and see how he takes to it. Next dr appt is 4/28 with neurology and then 6 month checkup on 4/30. Still not sure what we're going to do about vaccines but I would personally like to wait awhile to do any live ones and if we do any that aren't live, space them out a month or so so that we know if he has a reaction to a specific one. We'll see what neuro says.

in between ear infection crankiness and just being generally miserable about being sick and vomiting he did give me a couple quick smiles this morning. Always nice to see.

I ordered some really cute stuff for his new room and Jason put the crib back into a crib for him (it was a toddler bed for Tobin until Tobin got his twin bed a few weeks back). Oliver now has a mobile and musical crib toy and super cute lamp, hamper, nightlight. Check out the cocalo alphabet soup collection for really cute nursery bedding and stuff. We're going to order some giraffe decals for his room and then it'll be fully decorated. I pulled some good developmental toys out of the attic for Oliver to play with while he's working out at home. Hopefully we can find a few things that really catch his interest and motivate him to roll over or bop them with his hands!

Home Again

2010-04-08T12:20:00.000-07:00

We brought Oliver home last night. They decided not to continue with the ACTH and there weren't any further tests we need to do at this time. Once we have our followup with the neurologist in 3 weeks we'll discuss the following things:

1. genetic testing to see if Tobin is a carrier
2. further testing for Oliver involving a skin biopsy to understand which classification of CDG he has. Right now they think it's a CDG II and probably one of the newer forms, possibly a brand new form, which would mean he is the only person in the world diagnosed with the condition. We always knew our little tater tot was one of a kind!
3. A followup to the ACTH - will we re-test his white blood counts at any point and try the ACTH therapy again or will we just keep him on the vigabatrin and hope for the best?
4. Followup EEG? - The neuro fellow at the hospital doesn't want to do too many EEGs so as not to stress him out more than needed. Since he had such a stressful night Sunday night they think that might be what caused his clusters on Monday morning.

We also have appts with a gastro and a follow-up with Opthamology.

We'll know more soon about possibly going to the mayo clinic to meet with the world's expert on CDG.

Tobin was so happy to have his little brother home, and we are all happy to be under one roof again! This morning at 5:55am, I woke up to the sounds of Oliver cooing and laughing in his bed. He did this for about 20 minutes and it just amazes me how cute and happy my little guy is. The best part I can take away from all of this is that he doesn't know that he's different. As long as he is fed and cuddled he is the happiest little baby in the world. I am bringing the flip camera to bed tonight so if he wakes up cooing again I can get it recorded!

bad news and more bad news

2010-04-07T10:23:00.000-07:00

We entered the hospital to start ACTH therapy. Oliver went through some testing to make sure his body can handle the ACTH and he was given his first injection Monday night. THen we were told to hold off because his red and white blood counts were low. The red blood counts being low (anemia) are likely from the Vigabatrin and nobody seemed too worried, but the white blood counts being low means that he may not be able to use ACTH unless the counts increase. So he's still at the hospital and we'll know if they want to do the ACTH soon, in a few weeks once the white blood counts increase (if they increase), or never if he has low white blood counts because of his genetic condition. Yes, he has a genetic condition. They found out why he's having seizures and it's not good. It has nothing to do with the meningitis he had at 3 weeks. it's something he was born with and will always have.

Oliver has CDG: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=cdg

This means that he will have a variety of issues in life, mainly developmental delay or disability and he'll always have some type of seizure disorder plus other issues. We basically got the worst possible news because his genetic condition is so new and rare that there are no treatments for it. He will always be this way. The scientific explanation of his disorder is so complex that I can't understand it, but from what I do understand it's something in his genetic makeup and the cells in his whole body that cause him to be different from other people. So he may never walk or talk, or he could make great strides with years and years of therapy. We do know that he will never be “normal”. But if we can decrease the seizures, and help clear up his EEG for now, those will be 2 less strikes against him. Since his condition itself prevents normal development, and the seizures prevent normal development, and the abnormal brain patterns prevent normal development, the odds are stacked against him. We don’t have a lot of hope or expectations and we’ll just have to take it one day, one symptom at a time. Hopefully the drs will decide today about the ACTH and if we won’t continue with it, they’ll let us take our baby home so our family can all be together again.

Losing confidence

2010-04-01T12:02:00.000-07:00

When I'm home with Oliver looking at how darn cute he is, I feel hopeful and optimistic. Then I get to the office and start worrying about all the what ifs and pondering the fact that the seizures keep coming despite increasing his dose every few days. I know that sometimes it takes awhile at the right dose before the seizures stop, but when will we ever find the right dose? we're almost at the max dose for his weight and this weird single spasms keep popping through.

3/31 - 8am
4/1 - 3:30am, 7am, 1:30pm.

Single spasms/seizures without any cluster activity. Does this mean he is having a different type of seizure now? is this an indicator of another problem? Is the Vigab not working anymore? I hate how this is all a crap shoot. We have to keep tinkering around to find the magic combination to stop the seizures without ever knowing if the seizures will actually STOP! I just want them to stop. and never come back.

EEG tomorrow!

2010-03-29T10:33:00.000-07:00

We have Oliver's EEG tomorrow, the followup to the first one that diagnosed his IS. I am hoping and praying that we see some improvement over last time. Oliver had clusters of spasms this morning and then has been having random spasms throughout the morning the past few hours. Prior to that we had 3 seizure free days! He had his first therapy appt on Friday and did pretty well. We are hoping that PT through Pathways will help while we're waiting on our EI eval for PT/OT through the state. Wish they could call and schedule it already, they are so slow!

The weekend was fun, we took Tobin to an Easter Egg hunt and he got his haircut, very exciting. Yesterday we went to the children's museum so he could play for a few hours while Jason and Papa Frank built his big boy bed and switched bedrooms. Oliver now has his very own room, and Tobin is in his new room in his new twin bed. Very exciting.

Our neuro wants to increase Oliver's dose to the full 500mg packet of Vigabatrin starting tonight. Hoping that will keep the seizures away for more than 3 days this time!

Spring has Sprung

2010-03-25T14:55:00.000-07:00

well it's springtime and the weather is starting to get better, which means we will be able to take the little guy out for some walks and he can start to enjoy being outside with his big brother. After several spasms last weekend the drs upped his nightly dose to 8mL(400 mg) to see if they could once again decrease the spasms. He remained seizure free for 3 whole days and they came back this morning with a vengeance, so now we are increasing the morning dose of to 8mL (400 mg) as well. Now he is offically at 100mg per kg of baby. The drs say that 100-200 mg per kg is the best range to be in to see seizure control so we still have a lot of room to increase as far as dosing goes. Hopefully we find the right dose soon. EEG on tuesday should tell us more, fingers crossed we'll see some improvement.

We have our first PT appt at a center tomorrow and I am so excited to start on that road. I will have to call our EI case worker and see if she can light a fire under the state PT/OT so that we can get that process started as well.

Too good to be true

2010-03-19T09:05:00.000-07:00

We had four glorious seizure free days. Oliver was coming out of his sleepy fog and starting to be more alert and active. Still awful tone and not a ton of development coming back but we had a brief glimpse of a happier time. I felt optimistic and happy for the first time in 2 weeks. We met with the pediatrician yesterday who said to keep up hope and he would be on top of the case along with our neuro and to get Oliver started in therapy right away.

Then this morning I get the dreaded text that Oliver had a seizure this morning. Now I'm holding my breath again waiting to see if he has any more today. I know I shouldn't expect seizure freedom so soon or even at all, but I was so hopeful for the first time since this all started.

2 days seizure free and counting

2010-03-17T08:06:00.000-07:00

It's going to be a long road for us. Because the minute we stop holding our breaths and watching for a spasm at every turn, I know he'll have another one and it'll break our hearts all over again. Along with that, watching him sleeping peacefully is just as painful, because he has regressed back to newborn status. He's been on the medicine for 4 days now and has lost the few skills he had before being diagnosed with IS. He was delayed to begin with, not holding his head up well, not rolling over, etc but when placed on his tummy he would try to get his head up. When sitting on my lap he could look around for a few minutes before his muscles got tired and his head slumped. Now he has zero muscle tone. He's also decreased the amount he eats at each feeding, and seems to need to eat more frequently as a result. We were up every 1-3 hours last night, just like those first weeks home from the hospital back in October. At each feeding he barely nurses and then falls back asleep and I have to blow on his face and change his diaper to wake him to eat more. I'm scared to do this each time though because the spasms tend to come when he's just waking up. I am happy that the days have been seizure free so far, but nervous about the long term lasting effects of this illness and medication. I know even if he gets months or years behind, he'll have a long time to be able to catch up, but the damage done in the meantime sounds like it will hinder him long term. I know we caught it early and I should be grateful for that. The fact that he isn't having spasms again yet is also a good sign. I should be happy for the way things are right at this moment, but instead I am still focusing on the fact that he should be sitting in his exersaucer in the mornings, laughing at his big brother doing silly things. How do you let that go?

Poor Tobin is having a rough time too. He seems fine throughout the day and evening but every night he's up several times. Crying, calling for us, asking to sleep in our bed. Between the two kids I hardly slept last night. How do you explain to a 3 year old that his little brother isn't normal and might never be? How do you calm him down at midnight enough so that he'll lay back in bed and go to sleep? We had him in his crib until now because we were going to move Oliver into it soon and buy Tobin a twin bed. I think it's time to just do that now even if we're going to keep Oliver in our room. Maybe the "big boy" bed will help him be more comfortable. Just hesitant to spend the money when I know we'll have upcoming dr and therapy bills for Oliver. Tonight we're going to try and take the front of Tobin's crib and turn it into a toddler bed. We'll see if the ability to get up and go to the bathroom on his own will allow him to have more rest during the night. I was so looking forward to the spring, assuming Oliver would start sleeping through the night, in his own room so Jason and I could get more rest. Now it looks like we're right back where we started. Sleep deprivation and sadness do not make a good combination.

Feeling Lost

2010-03-16T09:09:00.000-07:00

Today I'm feeling lost. Waiting for another spasm to strike at any moment.....hating this Sabril because it makes him so drowsy and groggy, but holding my breath when he's sleeping because I don't want him to wake up and spasm. Loving the Sabril if it does , in fact, keep the seizures away. Worrying about his eye condition and possible vision loss. I know this is minor if he can catch up developmentally along the way, and , let's face it, guide dogs are CUTE. But looking at your baby and thinking "my baby is broken" is probably one of the most heartbreaking things a mother has to go through. I am so happy to go to bed each night because it's the only time I don't think about this issue, but when I wake up, I am right back at Oliver's bedside watching him for signs of another spasm. With all our technology today, we're still baffled at the human brain and how it works (or fails to work). Oliver had a clear MRI and his blood and urine tests came back fine. So there isn't a place to pinpoint , no lesion to remove, nothing is responsible for this as far as we know. How do you fix a problem if you can't find the source?