Saturday, June 02, 2012

On Birthdays, Sleep Studies, and Dermatologists

So since the last post, the girls turned two. Basically we had a cake that I picked up on the way home (carrot cake) and ice cream, which the girls love although Nicky still is really not interested in ice cream at all. Funny. We didn't actually do presents or guests or anything. I feel a little guilty about it I admit. But we have plans for some outdoor play equipment that we couldn't afford yet and that wouldn't wrap anyway.

We did do presents from Grammie that she'd given us at the wedding, but I had forgotten about them so they got those the next day. Then the other day gifts came from Grandma in the mail which they loved! So big party planned for next year and we'll call it good. I guess this is the manifestation of 2nd child syndrome. They have plenty of photos and videos, but a crappy birthday. Must do better next year as they'll be old enough to really get it.

Moving on!

Nicky's IEP meeting last week went well. I found out he did qualify for OT services, but the OT lady went to great pains to stress that Nick's behaviors are in no way aggressive, mean or defiant. He's just super-curious and impulsive and has a hard time tuning anything out. He won't be actually getting Occupational Therapy exactly, instead she'll be consulting on a monthly basis with the teacher and doing observations to pinpoint needs and possible accommodations. Sounds good to me! AND I found out that he passed the PALS testing! Not only passed, but did really well! He had to earn 81 out of 102 possible points. He earned 94. That's my smart boy! So the teacher confirmed that he will be promoted to first grade. I didn't realize how stressed I was about that until I was driving home and realized how much more relaxed I felt.

I also signed him up for summer school. It's limited, so he might not be selected for it, but I'm hoping he can get in. It's only 5 weeks and only about 3-4 hours a day, but it would be so great for him to get out of the house and hopefully get to do some academic work in a less stressed environment. I know when I taught summer school I used it as a way to do some more science and fun stuff that didn't get to fit into the regular school year. I'm hoping it will be the same here.

 Staying focused on the Nick, he recently had a double ear infection and did a course of antibiotics, which resulted in a second doctor visit this week for a follow up. I asked the pediatrician to look at a spot he's had on his nose now for over 2 months. I thought it was a blackhead, and Tom has been able to get some stuff out of it, but now it's looking more like a freckle, yet it's raised, which is weird. The doctor agreed it was worth checking out and so we have a dermatology appointment now for Monday morning. She suspects it might be a benign cyst. We'll see.

The dermatologist is at the children's hospital here, and lucky us, we know just where it is! Because we just went there yesterday for Nicky's ENT visit to talk about sleep apnea.

I was prepared for him to go have a sleep study and possibly a titration and then maybe come away with a cpap machine and deal with getting him to sleep with that. After all Tom and I have both been through this ourselves. What I was not prepared for was that they said the first course of treatment for kids, unless they present with small tonsils, is a tonsilectomy and adneoidectomy. I knew that some kids have extremely large tonsils and do end up with surgery, but I really hadn't at all expected that. They said his tonsils were large, but not the biggest by any stretch, but that usually they first do surgery because often that will totally cure the sleep apnea in kids.

We asked about the surgery, were told it has a very low rate of complications in children and results in about a week of recovery (at home) with just pain relievers. They said that surgery is usually tried first because it is a very likely cure, and they have trouble getting kids to comply with cpap therapy.

We asked what kind of effect that had on adult onset sleep apnea, but they didn't have those numbers at hand. Although they did say that they would not expect him to re-develop apnea as an adult unless there was a lot of weight gain later.

I just wasn't comfortable making a decision for surgery until I at least know for sure what kind of severity of apnea we're talking about at least. They were comfortable making the diagnosis based on his tonsil size, anecdotal evidence from us, and his extremely strong family history. But I want to have some proof first.

And then I will have to think about the surgery vs a lifetime of cpap therapy. Granted, I think Nicky would have little trouble doing cpap since both his parents use theirs religiously and he has so many other role models in his family that use their cpap machines. But I can also see that doing cpap is sometimes a big pain in the butt, especially for times when you're away from home and need to sleep or nap. I literally can NOT make a spontaneous decision to spend the night somewhere away from home without having my machine and mask. Nor can I just lie down and take a nap on a long trip or something either. With all the sleepovers and camps and things coming up in Nicky's future, it would be awfully nice if he didn't have to worry about apnea and a cpap machine.

But surgery is a big deal to me and I want more information first. So we decided to do a sleep study first. At first they actually had a cancellation for last night and we scheduled that. But as we were driving away from the parking garage we got a call that he'd been bumped by someone who needed a sleep study more urgently and while they were trying to increase the staff to open the lab on the weekend to help catch up but until they could do that he was scheduled for July 18th. Since it takes 2-4 weeks to get the results that would really push surgery (if we decided on that) far in the future and possibly we'd miss the window do this during the summer. But after only like 10 minutes we got another call saying that they'd gotten things arranged so that we now have an appointment for Saturday night.

So now Nicky and I will be spending tonight in a room at the children's hospital. They said there will be a bed for both of us there. It's specifically a pediatric sleep lab, so they know how to make the kids feel as comfortable as possible. We should have the results by the end of the month and by then I'll have done more research and be more ready to make an informed decision about surgery/cpap.

 Let's see, the only other things we have going on:

The sleeping plans of putting all three in the same room? Not happening. Nick was fine, but the girls would NOT stop talking and yelling at him for his attention. The girls really do need to get into the toddler beds though. They can totally climb out of their cribs if they have anything in there they can step on to gain a few inches. I caught Gabi on video doing it.

The stairs are still blocked with the gate, but Lily knows how to squeeze between the bars of the railing to get up there anyway. Gabi just went over the gate. So now we put the gate up higher and that at least discourages Gabi. Lily got her head stuck last weekend and scared herself, so it's been actually a quiet week on the stairs for a change.

I've gotten back to shredding myself with my nails, and so I'm prescribing acrylic nails for myself again. It's the only thing that keeps me from scratching myself bloody, even though I hate the expense. I was going to go today but the one place that I've had recommended to me so far has their nail techs on vacation till Tuesday. So maybe I'll wait till then. I've been looking for reviews but haven't found a place yet.

That's all I can think of for now.

Sorry Mom! I know it's been forever since the last post! I really need to figure out how to carve out more time for blogging.


Anonymous said...

WoW! Lots going on up there! I love you all bunches and bunches and know everything will be alright. Glad you are holding back on the surgery. Interested to know what the sleep study will reveal.
Do be very careful about the nails --been so many problems for women down here with them. Try dry brushing your skin twice a week before you take a shower. xxxxxoooooGrammie :)