Home Care Waiver Updates and Hirschsprung's

First of all, Toby is doing MUCH better. I guess his lungs looked GREAT on the x-ray; We think his body was just fighting off a virus, and since he's hooked up to a pulsox 24/7, you just notice more. He's in a better mood, and doing really well.

God is really reminding me today about letting Him be in control, and that I still have to continually trust Him. We received our notice in the mail that our Home Care Waiver will end on Aug. 31st. There was some confusion over it, and I was on the phone for quite awhile today getting things sorted out. We are appealing the decision and will go to a state hearing on the matter. It's all very exhausting, emotionally and physically. It's frustrating for me also, because I feel like it takes so much time away from all of the boys. God will see us through - The good news; insurance will be paying again for our nursing care for the next 30 days, so we're not without nurses or help; for this we are thankful.

The other update from today is the GI doctor thinks Toby may have Hirschsprung's Disease and wants to do a biopsy of his rectum. This is a disease where you don't have any nerve endings in your colon; which would explain his extreme belly distension because his stool moves through his digestive system and then basically stops and piles up in his colon. If he does have this disease, they would do surgery to take out the parts of the intestine that don't have nerve endings. It's called a "pull-through" surgery. It wouldn't totally take away his bowel issues (he will always have these because of the spina bifida and the neurogenic bowel), but it would help in how we manage it. They'll try to schedule the biopsy some time next week. Here is a web-site that explains this really well:

http://www.niddk.nih.gov/health-information/health-topics/digestive-diseases/hirschsprung-disease/Pages/ez.aspx

Again, the doctor isn't positive Toby has this, but they will do a biopsy to rule this out; His symptoms are characteristic of Hirschsprung's.

Thank you for continuing to lift us up - it seems like things are always exciting around here!! This weekend is Bruce's birthday and our 7th anniversary (Yes, it's on the same day - Sunday!). Bruce is getting old, I won't tell everyone that he's turning 34! We're also going to visit his family - a cookout for our nephew Luke, who will be leaving for Iraq this fall. He's in the marines. This will be the first time that some of our nephews and nieces have seen Toby. We're looking forward to time with family. Thank you again for being our partners in prayer! Good night.