Tuesday, December 21, 2010

Excuse me while I whine just a little bit

I really have nothing to whine about. Some parents we know are at the hospital or the doctor's office All.The.Time. We are so lucky. Quinn is healthy, happy, and making great progress. But we are at the doctor's office more than most "regular" kids, and I am feeling a bit bummed about our last ordeal and some upcoming ones.

As readers of this blog know, Quinn has never, ever been a great sleeper. We have had some brief weeks of reprieve from frequent waking, and clonidine has certainly helped with falling asleep, but in general, Quinn's sleep is terrible.

So last night we took him to a sleep lab for an overnight evaluation. (Which, by the way, took approximately six months to get approved by insurance and scheduled...but that's another story.) The sleep lab people were as nice as they could be, but let's face it, taking your kid to the hospital always sucks. Quinn cried when they attached all the monitoring stuff to him (head electrodes covered by the weird little hat, plus monitors for his legs, heart, and breathing). I'm grateful for the opportunity to learn more about why his sleep is so disrupted, but sad that we have to do it in the first place.

We also need to schedule the following additional medical visits for him:
  • Dermatology appointment for the large birthmark on his face, which, because it is getting ever darker, concerns the pediatrician
  • Eye surgery to correct his strabismus
  • Probably a repeat of the ear tube surgery since apparently at least one tube has fallen out, and one ear is "gunky" again (we learned this at the audiologist visit a few weeks ago)
  • Possibly another visit to the MIND Institute if we decide to enroll Quinn in the minocycline trial
I'm sure we'll all feel better tomorrow after some rest. We'll just focus on holiday fun (that'll be the next post). Maybe another visit to Holiday Lane will cheer me up.

One of the houses on Holiday Lane this year.


Jen said...

That is a lot, and yeah, going to the doctor is such an ordeal. Please feel free to whine. :)

Vicki Davis said...

Oh My! :-(

So the eye Doctor does not think that a patch or glasses will work? Our friend was also just diagnosed with this, but she at this point only needs to wear glasses, which is a challange for any toddler, so I am sure would be a challange for Quinn, but I was sorry to hear it was so severe he would need surgery, as i am sure that is much more in depth then simple ear tubes.

Now that he is older will they put in the larger more sturdy T Tubes? This fall has been amazing, we have only had 1 cold and it was so mild due to the tubes, compared to last year with 6 ear infections. I am sorry to hear though that Quinn will be headed back in for replacements.

When do you get to hear the analysis for the sleep study, did they tell you anything that ngiht about what they were observing, or do you have to wait, I really would like to hear what you have learned. We are so thankful Holly sleeps through, even if she doesn;t fall asleep and she wakes up early, we get at least 8 hours once she is asleep which we are grateful for. I think joel might go insane if we had sleep problems, as he needs like 10 hours himself in order to function.

We are going up to the Mind on the 5/6th of January to finsih up the Eye Tracking Study, I don't think we officially qualify for the Minocycline study since she took it as a baby, but I think we might do another trial reguardless, as we did see amazing progress the first time. Though she is still on Sertraline and I fear we will have to up her dose again, which is worrisome for such a little girl but the anxiety is starting to come back again.

Anyways, I am sorry to hear about all the medical stuff going on, we wish you guys the best new year, and can't wait to hear about the holiday adventures, BTW - Did Zach's App get approved?

fragilemom said...

Please keep us updated on the sleep study. Not sure what strabismus is??????? Poor Quinn doesn't look too happy. Our trips to the doctor are okay, but the ones to the ER have ALL began or ended in vomit. Luckily THEY get to clean it! Oops, did I say that?!

Whining is good for the soul!

ST said...

Thanks, Jen, Vicki, and Fragilemom for the replies. Strabismus is when the eyes don't focus on the same thing at the same time. It is better and worse than "lazy eye". Better, in that Quinn is actually using both of his eyes, whereas in "lazy eye" the risk is that the child will stop using one eye, and effectively become blind in that eye. In strabismus, the child uses both eyes, but can't focus them on the same object at once. That's why an eye patch or drops won't work. It seems that at first the doctor thought Quinn was developing a lazy eye, and that's why the drops were prescribed. We had to stop the drops because they disrupted his sleep even more. But when we brought him in for the follow up, the doctor confirmed that both eyes are working well...but that surgery would be needed to make them focus together. Sorry, long story, but there you have it!

Fx mom said...

Hi there, I cane across your blog accidentally but so grateful. My son Cole,about to turn 4... Has fragile x... Diagnosed in Jan 2010. I'm
So familiar and intimately understand the emotions you've gone through as well as every experience ....

We are enrolled in the minocycline trial.. Scheduled to see Dr, Hagerman on thank you for sharing your experiences....

Cheryl (and Cole)

Zachary Drake said...

Thanks for stopping by, Cheryl. Please let us know how the minocycline trial goes. We are very curious.