We tried to have a little bit of fun while we had a slower schedule. We watched movies, and went on walks. On Thursday, we had to go get Max's wheelchair seat re-fitted. He has grown so much in the past year he's completely outgrown the chair that was made just last February. He was sitting so tight in his chair it was really starting to be uncomfortable for him, so I was happy to get the new one for him this week.
|Big guy in a little chair|
We sat for 3 hours while they worked on his chair. He did pretty good for me having to hold him up most of that time. I was so sore by the end of it all!
|Watching movies to try to kill time.|
His new chair is like a throne! It's huge and has room for him to grow.
|Max's new throne.|
He likes that he can kick his legs around with the extra room!
|With room to grow.|
We got home and settled with just enough time for me to go to the airport to pick Steve up. We were up a while preparing for the next eventful morning. After 4 hours of fitful sleep, we all loaded up to go to Children's for a morning of procedures under anesthesia. 4:30 am is a terrible, horrible, awful time of day to wake up for anything. But, to have to wake up, get Max dressed and prepared for spending most of the day at the hospital is a special kind of awful.
|Too early for anyone to be happy.|
We have to do scheduled procedures so early because we can't risk getting bumped to later times with his metabolic disease. He can not fast for long periods of time, so if we take the first spot of the morning, he gets in early enough to not need extra help from not eating.
Once Max went back to the OR, we sat out in the waiting room for the next four hours! First his dentist came out and let us know he had three loose teeth which he pulled. Everything else looked good, no cavities!
|Three baby teeth to add to the tooth jar.|
The next doctor to come out was his GI doctor. He had an upper GI scope done to look at his esophagus and small intestine. He noticed an area of concern which may mean a new diagnosis, but we're upping his Prevacid by quite a bit and rechecking in a couple of months to see if it calms down. We got lots of photos of his insides.
After the GI test, he had an eye exam which measure the metabolic make-up of his eyes. Then he was out to recovery. While in recovery, and before he woke up completely he had an xray of his hand and wrist to determine bone age for Endocrinology.
|In recovery, needing a little o2 to wake up.|
|Portable xray machine to get his hand xray.|
He was in recovery for another couple of hours and then we were finally on our way home!
He wanted me to be sure to tell his dentist if he lost any teeth while he was asleep he got a balloon. Lucky for him the dentist told us, and he got a special minion balloon.
|The boy with his balloon for losing teeth.|
We got home around 2:00pm, and Max slept the rest of the afternoon. He only woke a bit when we repositioned him every hour or so. His nose was bloody a few times because they put the breathing tube in his nose instead of his mouth since they were in his mouth for the dental work.
The rest of the day was keeping on top of his tylenol and just making him comfortable. It was pretty neat that we heard from most of Max's doctors yesterday. Although he had procedures with just three clinics, the rest were calling us at home afterwards to see how he was doing. He's one very cared for little guy.
|Another sleepy day, but along for the ride.|
Today, he was still very sleepy, and slept most of the day too. But, it was sunny and gorgeous today, so we had to get him out in it! Tomorrow is his last day of spring break, so we're hoping he's feeling up to some more outside time since it's supposed to be in the 70's!
Despite what looks to be an exhausting day, your tone is so matter of fact, even cheerful. I sure hope spring brings you rest, relaxation and continued health and stamina!
I could do with all of that Elizabeth! The same for you too!
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