Thursday, June 07, 2007

Here We Go Again - Update on Billy Ray

I haven’t posted for a while because my readers know me so well and take some of my worries about Billy Ray too seriously for their own kids. I like to be sure about my facts before sharing our struggles. Apparently, I am not going to have that luxury. We are in a struggle to verify Billy Ray’s situation in order to get him appropriate medical care.

Some kids seem to get every potentially bad reaction from medications or their genes. If there is even a .2 percent chance that you will get one condition if you have another one, you might as well plan for it with some children and adults. My son is apparently one of those. Trying to be positive about my infertility, I remember thinking that at least my adopted child would not have to inherit genes from our families that included epilepsy, diabetes, high blood pressure, migraines, and even mental illness. Apparently that was a misplaced hope given all the genetic things we are finding about Billy Ray.

As stated here sometimes Moms (and Dads) just know that there is something wrong even before it is confirmed. I have email to medical providers going back a long time where I said he is better but I still fear there is something we have not found yet. We have dealt with pancreatitis, diabetes that didn’t seem to be effected by diet one way or the other, repeated sinus and ear infections, etc., etc.

In September, he had surgery (the Nissen procedure) for severe acid reflex and seemed to be getting his strength back pretty well. The choking and the breathing issues seemed to improve right after surgery. He started gaining weight, which, at first, seemed like a good thing.

Then all winter it was one sinus infection after another and major bowel issues. Somewhere along the line, I realized he had more thick mucus in his nose and throat even when he didn’t have an infection. He would walk around the room and gag or cough similar to how he did with acid reflex while he was eating but this time no eating or drinking was involved.

I noticed that he was starting to sweat a little, which he had never done even though he tends to wear far too many clothes in hot weather. His energy level dropped rapidly at times. Whereas he used to never stop unless he was extremely ill, he seems to have sprints of energy on occasion but lots of times he seems to have no energy.

We truly have the most thorough and caring medical provider you could hope for but I think he was as baffled by this change as I was.

One day, I called Kate Crowe, genetic counselor, who wrote the foreword to Parenting Your Complex Child. I had called only to tell her that my book was finalist in the 2007 Nautilus Book Awards. She is such a busy lady I usually expect to leave a message. She was there and had a couple of minutes between patients. At the end of our conversation, she asked about Billy Ray and I shared a bit of what was happening. All of a sudden, she told me to hold on and she looked on Kaiser’s computer (Billy Ray had been seen at Kaiser since adoptive placement at 14 months old until we moved here when he was 22 years old). When she came on the phone she said that they had never been screened him for Cystic Fibrosis. Many of the symptoms he is now experiencing didn’t occur until after our move so didn’t trigger Kaiser to screen.

There is more being learned about a possible connection with Down syndrome and Cystic Fibrosis than in the past. I had never heard of that connection before but when I did a Google search for Down syndrome and CF it came back with over a million results. There was an article documenting the connection in the sixties. I don’t think it is that common but apparently it is not new.

So here we go again. His energy level has changed so we have to redo his schedule for things are flexible in terms of time frame and in terms of energy requirement. The one exception is he still goes for his Meals on Wheels delivery most weeks. He is exhausted afterwards but it is important to him to do it.

I will try to keep up more with this blog as we kind of get caught up with his schedule.

Until next time,
Peggy Lou Morgan
Blogs: Amazon Author Connect, Parenting a Complex Special Needs Adult and Lighthouse Parents
Websites: Parenting Your Complex Child, Lighthouse Parents and Peggy Lou (underconstruction)

Club Mom Articles
Parenting Your Complex Child Yahoo Group

1 comment:

KC's Blog said...

Hi Peggy Lou,

I had never heard of Cystic Fibrosis and Down Syndrome having a connection. There is so much to learn with our kiddos. We have to learn as much as we can so that we can help or children as best we can. I know that since reading your blog I have learned so much and want to thank you for that.

It's great the Billy Ray is still doing the Meals on Wheels! I agree, it's very important. Keep us posted, always in our prayers, Tina and Boys