A Simple Update

The stronger antibiotic Elias is taking seems to be doing the trick. He has  been non-stop the last few days. Last night around 8pm we took him down to the finished basement, this is the “family room.” He was on his rest from 8p-9p so we had his G-tube unhooked from the pump so he could play free. We placed him on the Very wide open and spacious floor and he took off. Spinning, Rolling, Bouncing, inch worming, any way he could think of to move. He was all over the place just laughing his head off. We just let him go until he got so tired he could barely move. Needless to say he went to sleep almost as soon as we placed him in bed. It was hilarious to watch, and before I get the why didn’t you video tape it comments I should explain that for some reason Elias STOPS when ever the cameras, be it video or otherwise, comes out. I have tried to be sneaky about it, but he is just to visually aware. He is getting better with the regular camera though. If he wasn’t so spontaneous we would set the camera up and start it before we put him in a place to play, but when we have tried that in the past he just lays there. It doesn't help that there is a blinking red light on the video camera either. That captures his attention in a second. We will continue to remain crafty and hope to capture some of these fantastic moments, but Elias is a smart little dude.

Yesterday Elias had another developmental evaluation for identifying service needs in the First Steps early intervention program. The administrator was very impressed with Elias. As soon as she saw him for the first time she commented on how much more alert he was than she had imagined based on his complex medical history. She also commented on his cognitive skills & how dead on they seemed to be. She was equally impressed with his adaptability in the use of his hands. Elias was certainly enjoying the time showing off and playing.

We just heard from the FA clinic with some scheduling for some test and specialist appointments.  In a few weeks Elias will have a CT scan and a bronchoscopy for the Aero-digestive doctors. This will be the springboard to seeing the specialist on the team to prepare for managing his trach, chronic lung disease, and GI issues. We are also having a ultrasound for urology with an appointment to meet the FA urologist. This was bumped up the priority list due to last weekend’s ER visit and the presence of some type of infection, not necessarily a Urinary Tract Infection. Since there was not a culture obtained we can not identify for certain what was there. We can only know the antibiotics are helping. However with Elias’ vesicoureteral reflux of the kidneys it increases his chances of a UTI. These will all take place, with a few others thrown in the mix over the next month. It is safe to say that our already busy schedule is about to become even more crazy.