Paranoid Mommy

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

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

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.