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.
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