So, how is Ricky doing? :)

Ricky is doing okay. He's had a few random bad days, being tired, not feeling well, etc. but he is actually doing great in general. School has been a struggle again (still?) -- getting him there and actually having him work. At his annual IEP it was decided that he is going to be attending half days. He leaves after four periods + lunch. But so far he's still struggling to get through the day. *sigh*

Ricky has seen most of the specialists recently. The cardiology appointment resulted in a diagnosis of... The aortic root dialation is exactly the same as it was last year and the year before. Pulmonology appointment... He is finally growing (this was also noticed by the endocrinologist at *that* appointment). His lungs are doing pretty well. (No hospitalization since December 2009!) He has been wearing his oxygen at night sporadically. Really wish I could get him to do it more consistently.

Psych wise, I've been seeing some impulsiveness and some aggressiveness. My theory is that he's having this again because he's grown and needs an adjustment to his psych meds. So we are going back to the psychiatrist in early May. Need to stay ahead of this kind of stuff.

He has also been super affectionate lately. Hanging on me, telling me how much he loves me, kissing me (on the cheek of course). He is such a sweet boy. I hate to see him growing up. But I'll take him however I can get him because I never know how much time we have together!

Ricky has a friend! Well, he has had a few friends over the years but I'm rally pleased about this one. His new friend Andrew (not to be confused with brother Andrew) is at school with him and has some of the same issues... But they also share a lot of interests. Ricky has been over there once and Andrew has been to our house twice... For hours and hours. They have had a lot of fun together. Yay Ricky and Andrew. :)

quick update

Just a quick update for the new year.

Ricky has had a few doctor appointments recently and I FINALLY got the neurology nurse and pulmonology nurse to confer and get Ricky a sleep study. For Pete's sake, the kid has been missing more days of school than he has been in, with being sleepy, dizzy, etc. So on January 11 he's spending the night at PEC (the peds unit Dave used to manage, ironically, though they are in a fancy new facility now) for a sleep study and hopefully we will get some answers. He has been having migraines too, but at least there is Imitrex for that. There is nothing we have found so far that helps with the other stuff.

Good news... He grew a few inches in 2010! Could this mean that he's finally entering puberty? Time will tell! We see the endocrinologist in early 2011 and hopefully we'll get some answers.

update - doctor visits

Week before last, Ricky saw the neurologist about his increased fatigue and dizziness on the increased Topamax dose he's been on for a while. The decision was made to reduce the dose back down to what it was before and see what happens.

Ricky had an eventful week last week. On Monday, in addition to a bunch of other labs that he gets done yearly, he had his three hour glucose tolerance test, which ended up being normal, yay. That day he also saw his gastroenterologist and that went well, too.

On Tuesday, we had an eventful day. Ricky saw the endocrinologist, who looked over his other blood tests from the day before. His thyroid level was, as always, borderline low. Most of the other stuff looked normal. He has grown two inches in the past year, and the endocrinologist decided to put off any intervention with regard to his delayed puberty. They want us to come back in a year.

Next he had his yearly full pulmonary function tests. Those went well, and his numbers looked great.

Then Ricky saw the pulmonologist. His weight has flatlined and his growth curve is actually dropping. We're supposed to push lots of weight gain shakes. His lungs sounded great and the doc was pleased with the results of the PFTs. His iron was a bit low too, so we're temporarily decreasing his iron supplement frequency.

Ricky's dizzy spells, meanwhile, have been debilitating now that the Topamax dose has been decreased. Monday he spent much of his school day sleeping off another dizzy spell. So I called the neurologist's nurse to ask what we should do. She called me back to tell me she'd ask the doctor and get back to me. She called back and left a voicemail... I couldn't believe her response. Either we increase the dose back up... Which will make him sleep all day again... Or he just "gets used to the dizziness sensation." Seriously? What kind of a choice is that, exactly? I was so livid I couldn't even call her back to tell her what our decision was (for now, I have not increased the dose). I don't know what to do. Second opinion? Angry voicemail to tell her just what I think of her message?

I've also been playing phone tag with the cardiology clinic. Ricky is supposed to go there for another heart ultrasound with regard to the enlarged aortic valve that the geneticist mentioned (the pulmonologist explained it to us, so now I know a little bit more about what we're looking at).

The aortic valve issue and the dizziness (in this case referred to as dysautonomia) could also be symptoms of Ehlers-Danlos. Of course, he's not going to be tested for that unless the genetic tests we're waiting on come back as normal. And we won't have those results for weeks.

Also made another psychiatrist appointment... It's been a while since Ricky's been to see his psychiatrist.

Things just never get dull around here, eh?

status quo for now

Wow! It has been a long time since I posted... Over two months!

Just wanted you all to know that Ricky is doing very well. We have had a couple of emergency room visits for CF issues that turned out to be not as serious as we feared, thank goodness.

He still hasn't entered puberty, so we're going to the endocrinologist soon, and we will also be visiting the geneticist again, in March. We are supposed to go there periodically for a chat and further blood tests, since it's suspected he's got something else going on (yeah, like we need something else!) and there are new genetic tests available all the time. Also have a pulmonology appointment coming up, the same day as the endo visit, and he'll also have full PFTs that day. Going to be a very exhausting day.

Unfortunately, Ricky's dizzy spells are back in nearly full force. The neurology nurse gave me the go-ahead to up his dose of Topamax to see if that helps, so I've started the titration process. I hate that these spells are back because they totally incapacitate him and make him miserable.

Things are going well in school. He continues to be a teacher's aide in the office and they all love him there. We are gearing up for the transition to high school (!!!) this fall. I'm not sure yet where he's going to be going, but one of the options is my alma mater! Now that would be weird! Anyhow, we're having the transition IEP meeting in March and I should get more details then.

Keep your fingers crossed that Ricky stays healthy through the winter!

Ricky stayed home from school yesterday. He had a hard time in PE the day before with catching his breath, and then couldn't haul himself out of bed yesterday morning. He eventually got up, but after a while he went back to bed and slept for over five hours. After that he seemed okay... Not sure what happened. Sometimes I think he just gets worn out.

Seen a bit of... Shall we say... Teenage attitude lately. Maybe this is a sign that he is entering puberty? Should I be happy or scared? Hehe.