Friday, September 05, 2008
~Fall is Here~
It's hard to believe the summer has come to an end. We spent the weekend at Grandma & Grandpa Loewen's and the kids had fun helping with the harvest...a sure sign of fall. And on Wednesday Kailyn started grade 3 and Joshua started grade 1, which means full time school for both of them this year. A big change for us, and suddenly the house is SO quiet! Noah is already becoming bored withough the kids to follow around all day which means I have become his primary source of entertainment (and his Baby Einstein videos of course!). Many of his days are filled with appointments and therapy which helps, and the RCC is running a music therapy program on Tuesday afternoons starting later this fall. This he is sure to love!
Noah is still behaving himself these days. Although his stoma and central line site are both still giving us grief. His line site is growing granulation tissue which we've been treating with silver nitrate, but it is still quite a mess. And his stoma still looks ugly with yeast. We did a 3 week course of Gentian Violet, which did not help. Now we are trying Viaderm cream for the next week. It is very raw and painful for him right now. I'm sure the IV antibiotics aren't helping the situation!
We had TPN clinic this week and Noah has lost a bit more weight (15lbs 12oz), so we have increased his lipids. There are big plans in the works to try and get Noah off TPN and get rid of his central line. This is our ultimate goal, as the line has caused so many complications. But we somehow need to get his gut to tolerate enough fat and for his body to actually gain weight without the lipids. The plan is to try to replace some of the Tolerex with Neocate to increase the fat content we are giving in his gut. It will be a very slow process, but it's definately worth a try. He's been on full Neocate in the past, but he's always been uncomfortable on it, had lots of diarrhea and did not gain well. However, perhaps in lower quantities, mixed with the Tolerex he may do better. So once we get our first shipment of Neocate, we will give this a go.
Tomorrow is the Investors Walk/Run for Children. A huge thank-you to those who have donated in Noah's name. You still have 1 more day to make a donation!! (see the blog entry below for instructions on how to donate)