Our first big fundraiser for the Cystinosis Research Foundation was a big success! I don't have exact numbers as far as how much we are donating to the CRF in total or how many people were there, so I will have to update when I have that information. It seemed like everyone had a good time and lots of great prizes were won. We are overwhelmed by the generosity of those around us. Landon is a lucky little boy! We are all very blessed! Thank you! Thank you! Thank you!
Things have been quiet lately. Landon began vomiting daily again so I decided to go back to where we were with his feeds. We are now back to 4 tube feedings during the day with a lesser amount of formula, rather than 3 tube feedings with a bit more formula. I'm not sure what changed by his belly doesn't seem to be tolerating it well so we do a little at a time. It hasn't been so bad. It's just a little harder to get out of the house for any period of time. We also both have colds. Jimmy had it last week and we seemed to have caught it now. I'm wondering if he may have a touch of a virus that is contributing to a more sensitive belly. So, we are washing our hands lots and trying to take it easy so that it doesn't turn into anything else!
We continue on with Physical Therapy, Occupational Therapy (for eating) and Mommy and Me Pre-School (it's called First Experience) weekly. He's not yet walking but is so close! He stood independently for about 5 seconds 3 times while at school today. Any time now.. Although, I was thinking the other day. What is it going to be like to follow a child around, connected to a feeding tube, who is walking rather than crawling.. Hmm.. Landon, taking your time, Love!
Way to go, you guys, great fundraiser!!! And I think Landon will pick just the right moment to walk - maybe when you can go back to 3 feeds.
ReplyDelete