One tough cookie.

We slept well last night. Lew woke only once. Henry woke at 4:20am. I rocked him back to sleep by 5:30 but then it was morning.
Our day got off to a slow start because the doors to the van were frozen shut. Anastasia and Zane missed their orchestra class and were late for school.


Henry made it to his follow up appointment with Dr. Wadie seven minutes late. It was a quick check up. His site is healing nicely, and we trouble shot some of the retching issues. We need to slow the feeds, and keep at it.
He'll adjust. His stomach will stretch. He's lost 1/3 of the capacity that he had before, so tolerating even half the amount of before causes his stomach to distend, creating gas and the need to vomit. Retching threatens to pull the stitches and undo the nissen fundaplication that is responsible for keep his food in him. The Gtube cause reflux, which causes retching and the cycle begins... We also need to start putting gauze between the gtube and his skin because it's causing granulation tissue, which just means bumpy scar tissue and little bitty sores.

So, we're off on another adventure to discover how much we can handle. I'd rather face the long lines of a ridiculously short roller coaster, but the universe had other plans...

Scheduling Surgery!

Dr. Wadie confirmed our suspicions. After trying to find the right floor, and the right office, we sat in Dr. Wadies office and discussed both procedures, and how Henry will need both. We were informed that Henry's reflux could get worse if we do the Gtube. So the nissan fundaplication will be an eventual need... there are risks to the 'wrap' as he called it. Because the stitching is also attached to the stomach muscles and diaphram, it's possible for the stitches to be dislodged and may need an eventual re-evaluation... He said that we don't <i>have</i> to do the 'wrap' but it's very likely that he will need it.
So, my opinion... the odds of Henry's stitches being dislodged are lower than the eventual need for the 'wrap'... Do the wrap with the Gtube, so that we don't have to go back and do another procedure. If he needs the stitches re-stitched, we'll deal with it then...

Henry has gained weight. Every time we take Henry to an appointment, he needs to be weighted. Have you ever weighed a child that has no muscle control? Well, I have to hold him on the scale, then pass him off to someone so that we can get MY weight and subtract it, to get his. It seems petty, but I hate the scale, and an already stressful appointment, somehow gets amped when everyone in the world gets to see the scale flash an extraordinary amount of pounds on the digital scale... (I'm totally having a pity party!) But, to change the subject, Henry's eating has been more concentrated and successful... We haven't tried any solid or pureed food for nearly two months, and he hasn't thrown up but a couple of times, in those months! So thank goodness for small rewards!

After this surgery we meet with a nutrition specialist, and an OT to discuss a 'feeding plan'. We'll need to coordinate tube feedings with oral exercises, so that there is an eventual removal of the tube, if at all possible. Surgery is just one step in this process, but there is hope and we're aiming high.

Henry will be fitted for leg braces the day before his surgery. He'll probably have the braces, his tube and the final fitting of his wheelchair before the end of the year.

It's almost overwhelming. Almost. One thing at a time. Distractions from life, and the other children - keep my head from obsessing and ruminating on the ins and outs of Henry's issues. Lewis is nearly crawling, Anastasia starts basketball - the quad team, and Zane want to explore Homeschooling options. They'll keep me busy!