So as I mentioned it was a really long day! I came home, and my house was in chaos, but I think my hubby got the idea that I was done with working today. I professed i wasn't cooking dinner, but I later retracted that statement, and made something quick. About an hour ago I finally sat down, and poured a glass of wine. I am on a diet, but I gave in tonight.
So one thing I haven't mentioned is that I have seen an increase in the nature of Jude's seizures. Yesterday I counted 15 seizures, which is nothing we cannot handle, but they are mimicking the old seizures. He is squeezing his body together, clapping his hands tight, rolling his head back, and either making a unusual laugh, or making some type of audible noise. After he completes this motion he is spending about ten minutes opening and closing his mouth, this indicates strong seizures in Jude. Jude's repetitive opening and closing of his mouth led me to initially think he was having seizures, and his original diagnosis at three months. I am unsure as to why he is reverting back to his old seizures, but making some progress physically? Is this an issue with the medication? So confusing.
SO while out this weekend we noticed that Jude's issues are so much more apparent in public now. We don't have a problem with this, it's just more noticeable. We feel so much more comfortable in our own environment with him because here he is just Jude. No one is staring at him, no one is pointing, no one is asking us what happened. I know I shouldn't feel this way, but again it's a true feeling, and I stated I would be truthful on this blog. I just like holding him at home, and relishing in his own beautiful traits.
I also stated that I sent Jude's fair hearing packet off to the state today, but when I got home there was another packet waiting on us. It seems it was Jude's pediatrician that signed off on the fact he doesn't need more help, yet his therapists, nurse, and neuro seem to think otherwise. I was rather shocked because we have had great results with this doctor. Sometimes I think he is to passive regarding medical situations (ie, when Jude had CDIF, and pneumonia and he sent us home). In some circumstances I think this is great because I believe antibiotics are over prescribed, but this time I don't agree. It also surprises me that someone in the medical industry would make this assumption, when they have to know how difficult things are. I just remind myself that there are many other children with more pressing needs.