Wow have the weeks flown! We are looking at school in a little over a month and 2 trips to Denver in between!
We had our follow ups in late June for Mr. Christopher. Dr. Thomas (Pulmonology) and Dr. Goebel (ENT) were very happy with him. They both accused him of being a different kid. I agreed. Dr. Goebel couldn't believe that his sleeping at night was so dramatically affected. You now have to walk clear in to the room to see if he is sleeping or not.
Our swallow study with our favorite Speech lady went well, but not as well as I had hoped. Later Jason and I had discussed that we both thought that he would pass and they would just yank his tube. We were both wrong.
He is back to his baseline - honey thick liquids - as he was in January, but since Jen knows him so well, she was afraid to pull the tube because he fatigues so quickly when he eats so we are slowly introducing fluids back to him in staggering.
We haven't gotten very far, as the first couple weeks he got a cold and it settled in to his chest, so Jen backed things down, but we are doing better. And if Miss Lily (his cousin) would leave his tube alone, we wouldn't have to put it back in! I'm kidding, but she did pull it out one time because she tackled him for a cookie...atta girl!! :)
His walking is getting better by the day. He's now trying to run some days and takes about 3 steps and he's down, but he tries. He's started to do therapy at home with the special ed instructor and if Matt would leave him be during it, things would go well.
He's still very non-verbal other than up so we do quite a bit of sign language - his favorite is eat!
We head to Denver in a week for his EMU (epilepsy monitoring unit) stay. He will be hooked up to an EEG for 3 days and they will reduce his meds and stress him to see if they can capture a seizure. I hope they find something or can tell us something. They will also be doing some more genetic testing.
So before I know it, we will be shopping for Matt's first day of Kindergarten! Yikes!!!
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