Hey everyone, Ive been trying to write Levis update for a week now! Unfortunately our last week has been horrible, Levis had a terrible cold and needs assistance with getting anything up, he so tired he tries to swallow it and ends up choking.. 😞 So as everyone knows we returned home from USA last Sunday morning.. Levi did AMAZING on all of our flights, he did have a huge vomit on one of our flights home but that was the only hiccup! Our first day at CHOP was Monday 7th of July, we had our first meeting with all of the specialist and drs seeing to Levi.. Everyone was so lovely and helpful with all the information given! That afternoon Levi went in for his first round of testing, his MRI and lumbar puncher.. He did so well with these tests. Unfortunately his MRI although better then they thought it would be, showed much more white matter on his brain.. This was a total let down 😞 however, the white matter increase didnt seem to make much of a difference in Levi himself (except having less control over his arms and legs).. This is good! Levis lumbar puncher result were also really good, they came in a good range for the disease.. These results were able to tell us that Levi was at the end of stage1/start of stage 2. Dr E was very happy that Levi can still take food and bottles orally, weve been told to constantly give his dummy, even when soothing isnt needed.. In doing this it will keep his sucking reflex going 😊 we have now thickened Levis bottles with rice cereal, this will help him swallow his milk without choking 😊 Levi received more tests throughout the week, including a hearing test, eye tests and nerve conduction test.. So far all we know from these tests is that Levi is certainly not deaf or blind and still has great communication with his brain.. We are awaiting our Skype meeting with Dr E to find out exact results from these tests. When Levis was put on medication 3 months ago by pmh, they put him on a medication called clonadine, this medication seems to have done more harm then good for Levi, Levi has now been taken off it and will start a new medication next week called baclofen.. This will help with Levis muscle spasms. With all the tests and observations done on Levi, we were able to be taught how to deal with Levi and that Levi is sitting at a 7-8 month old baby cognitively and that he was still learning! Once again great news! Thats just a quick brief run down on Levis tests.. Our next step is Levis stomach peg op, the stomach peg is called a Mickey peg.. So very much appropriate for Levi!
Posted on: Sat, 26 Jul 2014 07:13:28 +0000