Monday, January 17, 2011
Update on lil Kannon Ball!
On my last day of Christmas Break I decided I better write on here and give a Kannon update! He had his sleep study, a 48 hour EEG, a second swallow study, a trip to the eye doctor, and he has continued his physical therapy sessions. As for the sleep study, basically we took him to Children's and he had about 25 electrodes hooked to his head and they monitored his sleep habits. The results came back and he receives less than 90% oxygen 15% of the time he is sleeping, so now we have an oxygen machine with a pulse ox in his room. He wears this only while he is sleeping. And truth be told, so far, it is a PAIN. He hates it, and sometimes it will wake him in the middle of the night....BUT it serves a good purpose so hopefully he will get used to it! They also said he has airway obstruction so we are to go back and see his ENT for a follow up, and so he can check and see if it is his tonsils or adenoids, or if there is something else going on. His 48 hour sleep study was in the new children's hospital in Tulsa, and it was super nice! They had flat screens, and x-boxes, and beds. It was the Hilton of all the hospitals we've been in! Basically they had him hooked up to about 25 electrodes again to monitor his brain activity. The computer showed the brain waves and anytime he had a seizure, basically the waves would look all scribbly and disorganized. There was also a camera attached to the computer that filmed him the entire time. Anytime he had a seizure we were to push a button, to mark the spot on the computer, that way it would show the Dr. what we were seeing to be seizures. Anyway, the doctors there confirmed that he was having myoclonic seizures, so he is being treated with special medication just for that type now. As for his second swallow study (I might have mentioned this before on here but it alright!) it showed that he can't have thin liquid sitting up, because he aspirates, and he will still have to eat on his side. The speech pathologist told us that his swallow laying on his side is a completely different story as when he is upright. She said his swallow sitting up looks "confused". We did try thicker food sitting up and he do okay, so we have started him on a little bit of baby food now. He doesn't know what to think about it. I don't think he realizes that he is still being fed food, because he will cry sometimes wanting his bottle instead...ha ha it's actually pretty funny! However I did make him smile a couple times by just saying his name, and then I snapped a picture (the one above)! As for the eye doctor, he said everything still looks great! Which is super exciting because a lot of kids & adults with his brain abnormality are commonly seen for eye problems. YAY! The physical therapy is still 2x a week, and everyday with mom. He is getting better at trying to hold up his head. This is still our number one goal right now....for him to hold up his head by his 1st Birthday (it was before the yr. 2011, but we backed it up a little!) For those of you who haven't noticed, Kannon has become quite the little chunk! He weighs about 18.5 lbs. now! That is about 4X the size he was when he was born! Overall, Kannon is doing SO good! He is progressing at his own pace, which is all that matters :)