Wednesday, January 2, 2013

Quick Update

This will just be a quick update. Evan is doing so well. I feel like I am waiting for the other shoe to drop but hopefully, we will have a long run of nothing to exciting happening.
Lately, Evan is just talking so much. It is mostly not understandable but he has been saying mommy, dad, gabe, oh yeah, I want that and a few other words more clearly. Now his speech is far from clear and it would probably take an outsider a while to understand him. He basically says words with vowels and misses the other sounds. This is caused by #1 his brain malformation and the speech area of his brain is very malformed. Other children with the same type of malformation-polymicrogyria usually have some sort of speech delay or are mostly non verbal. This new burst of speech is awesome and it is showing some cognitive maturity on  Evan's part which is so awesome as well. He has really made strides in the last 4 months. And we noticed even more once we started the ketogenic diet and got a better control on his seizures.
Seizures are doing awesome. Which means we aren't seeing them at all. He did have one after christmas and has had a few suspicious episodes. But really that is nothing compared to the crazieness we went through with him having 40-100 a day at some points. I have a love/hate relationship with this diet. I love that it is working and I hate that I have to weigh and measure all of his meals and mostly that I have to tell Evan no to foods or in some cases more food. Lately, he is wanting to eat so much and I feel like I should be encouraging that and not telling him no. But how can I not continue this diet if it is working. We see Evan's neurologist on January 10 and have an EEG on January 9th. I am honestly freaked out abou the EEG. I am worried we have lost our good control and Evan is having a lot of subclinical seizures which are the seizures we do not see but happen in his brain. This in not an unfounded fear because in March 2012 that is exactly what was happening. I will be holding my breath when we have the EEG until it turns on and I can see what is going on in that sweet brain of his.
We had a great November and December. I am happy that he is doing so well and I hope it continues well into 2013. Next post will have pics and some more fun info. I am trying to update this blog a few times a week.

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