Long-overdue update!

So, what's been going on with Ricky, you might ask? :)

Lots!!! Where do I start? Well, his cardiology appointment started with an ultrasound of his heart. It still showed a dilation of the ascending aorta, just like a year ago. The cardiologist let us know that it had not changed in size from a year ago. She drew a picture of the heart and its arteries and veins and explained that most likely this would never cause Ricky problems. On the other hand, this sort of defect is almost never found in a child who does not have a syndrome of some type.

And in that department, a couple of weeks back I got word from the genetic counselor that the first genetic test, which was a long shot anyhow, had come back negative. This week, I got a call from her about the other test we were waiting for, a genetic array. This time, an abnormality was found. Ricky has extra genetic material (known as a duplication) on one part of chromosome 11. We are not sure yet what this means -- in truth, the field of genetics is really still in its infancy. The next step is for them to test my DNA (they already took blood when they took Ricky's 2 months ago) to see if I have this too, and if not, they'll want to test the boys' dad. He has offered to be cooperative with medical stuff, so we shall see (if it comes up). On the other hand, from what I have read online, many times these sorts of defects happen spontaneously during or just before conception, and have nothing to do with inheritance. So mysterious!

Ricky has had one ER visit lately; it was due to some pretty severe abdominal pain. It turned out to be nothing, and his lungs look(ed) great. He has been on Dulcolax on a regular basis since then and it seems to help.

He is still having pretty bad dizzy spells. I am so frustrated with the neurologist that I haven't called there in a while. I was supposed to call the nurse to tell her how we had decided to proceed. I upped Ricky's morning dose of Topamax, which hasn't done a lot, but may have improved things.

Had a recheck with the psychiatrist, mostly to check in, and things are looking good.

I took both boys to their new dental center, which was amazing! Disney Channel, video games, all kinds of fun stuff. Wow. Unfortunately they were unable to work on Ricky's complicated teeth... He needs to have his bicuspids (all four -- adult teeth) removed so his cuspids can come in (I may have that backwards). He needs this stuff done before he can have orthodonture. This dental center felt uncomfortable doing this work (or even cleaning his teeth) given his medical history and all of the meds he is on. They gave me a referral to take him to the dental school at UCSF, where the procedure would be supervised by a physician as well. I am glad they're being careful, but jeeeeez.

School is going okay. He has good and bad days. He has days where he refuses to do work at all. We had his IEP meeting last month and decided on his placement for high school -- it happens to be the same place I went to high school. I need to make an appointment for Ricky and me to go visit the classroom. I met the teacher at the IEP meeting and the program sounds really good.

There have been sibling... Issues. Ricky and Andrew both have limited understanding of what Misty is capable of "getting". She wrecks their stuff, that sort of thing, and they can't figure her out. They think she is being malicious but I honestly believe that at her age (almost 4) she is mostly being... 4. Curious.

Ricky's digestive enzymes, Pancrecarb, have not been approved by the FDA by its digestive enzyme approval deadline (April 28), so the CF clinic staff has been scrambling to get people set up with new enzymes. We have quite a few bottles of Pancrecarb left, but after he runs out he'll be on Creon. We are not sure of the future availability of Pancrecarb, which appears to have a grim outlook. Creon was what Ricky was on from when he was diagnosed to when he was put onto Pancrecarb, so it will probably be okay. It just sucks to have to switch to something else after what he's been on all this time has done so well for him.

His labs also came back with his vitamin D being significantly low, so he's going to have to go onto an extra supplement (besides what is in his multivitamin) for a little while. Don't want him to get rickets! Yow!

So, now we wait to see how things go with the genetic tests. CF-wise, Ricky has been out of the hospital since November and things are looking good. His lung function is great. :)

That's all for now!