Thoughts.com Blogs - End of day ramblings

View Blog

End of day ramblings

I took another screenshot of my Sims 2 game. I thought for sure I had also taken a picture of Sharla but I could only the one of Tommy Ottomas. So here's Tommy

My parents dropped by for a suprise visit today. My house was a complete mess

I know they don't come to inspect my home but I still felt guilty knowing my clean laundry was piled on my kitchen table.
The kids were really happy to see their Nana and Papa. My kids obviously have favorites and thankfully it's worked out so Kade favors Nana and Xavier favors Papa.

The last few weeks have been really hard on Kade. We've been trying the new feeding schedule the developmental peditrican recommended at Riley's hospital. I'm supposed to have Kade do 3 pump feedings a day, 2 ounces at least each time. It hasn't worked out at all though. He does well with the pump feedings at night but during the day he acts so uncomfortable whenever I try to use the pump.
He's able to use the side of his hand to pull the tube out.

I suppose I should back track a bit and explain the whole pump feeding thing. Last October Kade had surgery and had a gastronomy button placed in his belly. It works much like a second belly button. I pop the cover of the button, much like popping the air valve on a beach ball. I insert a feeding attachement which in turn is attached to a pump. I set the flow rate and the pump slowly drips a special formula into Kade's stomach.

For now we're using a formula called EleCare. It's a non milk/soy based formula. Kade gets violently ill whenever he eats or drinks anything with milk. Soy didn't seem too bad at first but then the gastro specialist found blood in Kade's stools. It's not uncommon for a child to have an allergy to both.

After the placement of the G tube Kade did very well. He was up to almost 25 lbs. Still small for his age but really well for a child with his type of disability. Kade had a growth spurt and as he grew in length he dropped in weight. His last weight in had him at 21 lbs. That's still not terribly bad but it's not terribly great either.

So it's been a battle to get him enough calories to maintain his health. I've been told by numerous specialists that chances are Kade will always be a small person. Being small isn't a big deal as long as his brain develops at the same rate as his body.

To get an understanding of Kade's disability I encourage everyone to watch this video of Team Hoyt.
Rick Hoyt has the same form of cerebral palsy as Kaeden.
Team Hoyt