Mason had a day full of fun with Daddy today *sarcasm intended*. :) Our little man is getting so big and with growing bigger comes attitude - the "don't you dare touch me" attitude with every nurse and doc that entered the room...
Mason had an EEG last week. (EEG is when they attach 20 or so electrodes to his head, expose him to flashing lights, get him to fall asleep and monitor the brain electricity). The results were NORMAL! :) Dr. Koehn is surprised that Mason is not having constant seizures with his cortical dysplasia diagnosis but to even have a normal EEG? FAN-freakin-TASTIC! She thinks that maybe his cortical dysplasia is NOT causing the seizures and maybe, just maybe, he grew out of them. His last seizure was March of 2011 (*knock on wood*) and counting...
Mason's G-tube was changed out by the GI doc and we figured out the reason it was so difficult to change was because we weren't using lubricant. That should make it easier from now on. They also discussed his diet...and trying to get him more of our foods. They suggested we continue to try and feed him pieces of what we eat but then pureeing our dinner and giving that to him via G-tube. So tonight, for the first time, Mason had pureed tuna helper. Yummy, huh? You would have gagged if you would have seen it in that consistency, but at least he got some protein! Turns out we have also been receiving some G-tube extensions each month that we have been discarding because they weren't the ones we were used to using. They do not have a "nitch" in them like his normal ones making bolus foods easier to pass through. So this will open up some possibilities for giving him normal foods in the pureed form.
Mason had botox in his legs and hands again. This will continue every 3 months to be on top of his muscle tone. It's apparent when he gets close to his due date for a new dose because he is more irritable with therapy, standing, walking, etc. He also had his AFO's adjusted so they are more comfortable. He has been skipping gait trainer therapy since his AFO's were so tight but he's going to be back to that starting tomorrow at school. He isn't going to like it...
Chris asked about van accessibility options for down the road...so that we can plan our next vehicle and getting it adapted for Mason. There is this new vehicle made especially for wheelchair-ridden folks but I'm not sure I could bear to drive this down the road. More realistically we'll look at a used van and have it adapted locally.
Speaking of new rides, Mason had a new stroller ordered so that we can take him more all-terrain! This thing is adult-sized so he's going to look tiny it in once we get it. Next year we will be placing an order through insurance for a wheelchair that will last the next 3-5 years, so because our insurance will only approve one "wheelchair" every 2 years, they are providing this stroller through the Children's Miracle Network. I am in awe of how wonderful this organization has been for us. So far they have provided us with Mason's stander, his tomato chair (which allows us to take him out to eat with us and sit at the table like a big boy!) and now this. Absolutely blessed. We also ordered a new gait trainer through insurance so I look forward to that battle...
As far as height/weight, Mason lost a few lbs but grew 2 1/2 inches. He's a tall, lanky almost 5 year old! He's getting so big its amazing.
So the next clinic is 6 months out and we hope to return with lots of new progress!
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