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Thursday, May 5, 2011

The last couple of days

Well the misses took eli to his appointments. Wish i could of been there to hear all the new things they want to do. From the sounds of it they told the mrs alot of the things we already knew. Kinda fustrating really.

The nuerologist said that the nuerolgical could also be due to the mitochondrial diesease since there is mitiochondria that is with the nuerons. It is very interesting .He also explained to heather what the levocarnitine does. It is supposed to help with the mitochondiral produce more energy. Which is a good thing. He told her that he doesnt know if its working or not but it wont hurt him to be on it. 
    
They also saw the pulminologist and she wasn't very informative and wasn't sure what to do. She did however agree that he is chocking on is own secreations and that it is because of his hypotonia, weak swallow, oral aversion, and tracheal laryengal malaysia working against him to make it  harder for him to swallow.  She perscribed a medicine to possibly help inprove the situation. I really hope so i may not see him much but it bothers me to see my little man panic and choke and cough. It is also not easy on the rest of the family.
 
He also saw the feeding clinc and he didnt do well there. She experienced elis chocking episode and documented it. Which is defintly a plus. However he didnt take any bits. She said the way to help him with his oral avesions is intense feeding therapy but with all the chocking episode he cant do it. They also went to the seating clinic and that didnt go as well as we would of like someone came in and was trying to take complete control and change elis wheel chair. Which is totally not the one we wanted. Luckily our insurance is already taking care of the first wheelchair and the company in wichita has called heateher and said it is all a go and we should have it by the middle of May .Super yeah for that. Its one less battle we have to fight.

Eli also saw his Ear doctor and she thinks that there is fluid in his ears because he failed his hearing check up with the tympanogram. He is going to see his peditritian on Friday to check on his ears. They also fitted him with new ear molds. Cant wait for those to come in so he can be more comfortable and fit better.
Dermatology they think they know what it is they just want to see him when he has it. So they can say for sure.

I talked to the kids last night they seemed to be doing well. Emily is enjoying school. She has a special author coming to school today and Emily and Jace get to dress up in a friendly monster outfit or mix matched clothes. It should be fun for them.  Jace is jace he likes pink panther and his nintendo. Ben is not feeling so well he has had  a temp of 102. The good thing is he doesn't have anyother symptoms. So hopefully today it will break. Heather has been pushing fluids and making him some yummy pear applesauce. Ari well she is just ari. Mrs talkative and mrs princess.

 Heather she has been fighting allergies for the last few days.It is the worse that i have ever seen from her. I really hate seening her this miserable. Hopefully she can get some meds to help out. She will hopefully be coming back to KC tomorrow if all goes well.

It will be really nice to have everyone together for mothers day. I know there is a possibilty that we might not with all the strange things going thru the house. My self im ok so far physically feeling well. Alittle tired but doing well.
Moving wow is a pain. I have been calling for two days trying to arrange to get movers. Waiting for some call backs to get estimates. I went to the house yesturday and there was no more progress made. I will be going again tonight and if none is made i will be calling the landlord. He seems like a nice guy so im sure he wont be thrilled if things arent being done. Only about 3weeks until the kids are done with school. Hopefully we will have all of out stuff moved in by then. We will just have to see.

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