Friday Update

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

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

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

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

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

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

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

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

yesterday was a good day :)

Smiles

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

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

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

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

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?