Both of the boys have been doing amazing. Time seems to go by faster than ever now. Zayden is 5 months old and Zackary is finishing up his last few weeks of the year at the Britain Center.
I can't remember when the last post was, but Zackary is doing as amazing as ever. He recently had an appointment with his neurologist and Keto team in St. Louis. When they asked me how the seizures were, I told him we weren't really seeing any. He gave me a concerned look, and I told him that it had been months since we last saw one of his confirmed seizures. The look got worse. I explained that we still see some "weird" stuff that may or may not be seizures, but that developmentally he has been doing awesome. He left the room, came back in a couple minutes later, and asked if we could hook him up to an EEG right after we left his office. I said of course, and listened as he told me how hard is was to believe he could be doing that much better. His last EEG was so absolutely terrible, that he could almost have been classified as being in status if it weren't for short 10-20 second breaks from the seizures. We weaned off his meds because of the side effects and his diet, plus it didn't really seem like they were doing much anyway; we did this expecting him to get worse and to have to add new meds in. Zack did the opposite, he got better. And not just better, but absolutely amazing. After the EEG results came back, the neuro called me and told me he was utterly shocked and that the improvement on his EEG was beyond amazing. The words normal and Zackary do not often go together, so tp hear the words "practically normal" when talking about Zack's brain is nothing short of a miracle in my opinion. Needless to say, I am over the moon and can not say enough wonderful things about the Ketogenic Diet!!! All of the label reading, online calculating, phone calls with dieticians and pharmacies, weighing, time spent prepping, everything is all so worth every moment to see how far it has allowed my amazing little miracle to come.
Between this and a few other appointments lately, we are going to be slowly changing Zack from formula to a blenderized diet, and adding in some new supplements of fish oils and probiotics and see how he tolerates things. We also learned that Zack is not completely hypotonic (low muscle tone) like we previously thought, but rather a mixture of severe hyptonia and mild/moderate spasticity (higher tone/muscle tightness), depending on the muscles, so we are also looking into the idea of possibly trying some botox injections to help some of this. The thought is very strange to me, but I have heard of some good results coming from this, so we will look into it!
Lately Zack is working on putting weight on his arms in a seated position and we have even got him up on all fours a few times! He is tolerating his stander well when I can fit it in the day, and he loves to stand next to Zayden when he is in his highchair (they are the exact same height then :) ). He rolled all the way over and pushed up onto his arms a few days in a row recently, but seemed to quickly realize it wasn't all it was cracked up to be and hasn't done it since. But he does love to roll over to you when you lay next to him, and he now reaches his arms out and touches your face and smiles, which absolutely melts my heart.
Zayden is doing well also, but is definitely more demanding than Zackary right now. He loves to change position, activity, scenery, etc very frequently, and has no problem yelling at you until you do it. He loves his walker and his exersaucer, and is trying to figure out his new jumper. He is quite the piglet and is constantly hungry, so he has already had quite a variety of fruits and veggies with no problems at all. So far he hasn't showed any preferences and seems to enjoy any food you put in front of him! As long as he is full, he is a very happy baby, which helps a lot with how much time we spend at appointments and therapy for Zackary.
Both of the boys are doing fabulous, and they are starting to interact more and more with each other. Even if it a lot of hair pulling, pinching, scratching, and eye poking right now, there are also some smiles and laughs, and my favorite is when they intently just watch each other. They really are the sweetest things most of the time!!
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