Fed Up Friday

Yes, I do know that it is Saturday but I was too fed up yesterday to post. So we'll call this "Fed Up Friday". First, I'll start by saying that many things irritated me yesterday. #1 being the post on "Tard Supper". You may have seen this on Facebook or someone else's blog. If not, here is the link http://slog.thestranger.com/slog/archives/2009/11/09/the-tard-supper

Amazingly enough, the guy who posted this is gay. I assume he is used to being ridiculed and called names, so I am left to wonder what made him feel this was an appropriate description of the artwork. Perhaps for me, it just set off a short fuse I already have for the word "Retard". I have posted before on this subject, but it never ceases to amaze me that people still use that word not only in my presence but around Cameron.  Anyway- I'll let it go, cause I'm sure this subject will be back around before we know it. (Sometimes a girl just has to vent)

Second~ It has been nearly 6 weeks since Cameron had his sleep study. I called the doc about 2 1/2 weeks ago and was told to call them when it had been 5 weeks, as that was when they expected to have the results back. I did call back on Monday, which was 5 weeks and was told that the results had just come in and they were sitting on the doctor's desk. The nurse assured me someone would call me as soon as he had reviewed them.  On Wednesday, I called back because I still hadn't heard and nope, the doctor hadn't reviewed them yet. I was again assured that when the doc arrived in on Friday, they would be reviewed immediately and I would receive a call before the end of the day. Hello- it's Saturday......! I am going to make a 3rd call on Monday, but I assure you that I won't be as pleasant on this phone call. It kills me that these doctors charge you an arm and a leg to see our children and then take over a week to just read results and make a phone call- C'mon!

 I think Cameron got tired of waiting too.

This is a special position that kids with DS apparently like to sleep in. I have other friends who say their children do this too. If you ask me, it's rather disturbing considering the fact that I can't even bend over and touch my toes, much less lay down like this. And this kid sleeps soundly like this. It's amazing.

Anyhow, now that I've gotten all that off of my chest, I may be able to enjoy my Soggy Saturday.

Sleepless Study

I'd like to take this opportunity to complain at the sleep study. Yesterday the sleep lab called me sayihng they had a cancellation for last night. I have been dreading doing this, so I thought it would be a good idea to go ahead and take it and get it over with before I had a chance to talk myself out of it again. So we got our stuff ready and I tried my best to prepare Cameron for what was ahead of him. He of course had no nap so he was tired. When we first arrived, he was great. He figured this was play time with just he and mom and we were gonna have a fabulous time.

Not long after we arrived they began hooking Cameron up to the many wires they use to see what exactly happens when he sleeps. Now I have to say....this is complete ridiculousness. No child is gonna sleep with this junk hooked to their head, legs, chest and neck. Shoot, I wouldn't sleep with it on. I talked him through it keeping him busy so he didn't cry and eventually we were hooked up.

Give me a break. Good grief. This is crazy. So we lay down and watched TV for a few minutes. Cameron started his tired noise and before I knew it, he was snoring. I turned the TV off thinking that maybe I was gonna get some sleep tonight. Uh wrong answer. 1 1/2 hours after he fell asleep, Cameron starts his crazy sleeping. Sitting up. Laying down. Sitting up. Laying down. Well by gosh, wouldn't you know that this was gonna disconnect some of the leads? Yep, sure did. So the tech had to come in and hook it back up which caused screaming and crying. He finally fell asleep again, only to repeat the whole process over and over again all night. I don't know what they will conclude from this sleep study other than he didn't sleep but oh well. I will say that after this is all over and he has had a bath he still didn't sleep. He was exhausted and finally several hours later zonked out in front of the TV.

He is still feeling the effects from this long night 12 hours later. And boy, I am too. This was an awful experience and to top it off, we will now wait 8- 10 weeks for results. Terrific.

Sleep Study take 2

As I mentioned before, Cameron was scheduled to have the inevitable sleep study. Being the tired mama that I am, I cancelled it because I just couldn't bear to deal with it last week. We have now rescheduled for October.....another Saturday night which thrills me to pieces. What a way to spend a Saturday night. So after mixed opinions from other parents, I wonder why in the world we even have to do this. So, I used the trusty internet to do some research.

First, I have found out that Obstructive Sleep Apnea (OSA) occurs in about 50% of people with Down syndrome. Well it just so happens that Cameron has Down syndrome...how bout that. The symptoms include snoring and/or loud breathing. Cameron breathes like a 400 pound man. Mouth breathing, ummm yea and waking frequently during the night or restless sleep. Yep that's Cameron. Given this and the fact that Cameron's tonsils and adenoids are very large in his tiny airways, I wonder why in the world we must subject a 3 year old and his mom to spend the night in a hospital hooked up to numerous wires where we know he will not sleep, just to find out that maybe Cam would benefit from a T&A. Uh Duh. Keep in mind that I'm no doctor, and to be fair, this is the way that OSA is diagnosed. I just feel as though we should do the surgery and remove the T&A regardless considering they measure at a 3plus on a scale of 1-4. My thought is why wait? It will probably need to be done at some point anyhow. So why not remove the tonsils and adenoids and if problems still occur then we'll take the next step. Oh well, good thing I'm not a doctor......I'm just a know it all parent.

Sleep Study

This week we had our follow up with the ENT. I so love these appointments. You wait an hour past your appointment time to see a nurse practioner and then another 30 minutes wait for the doctor to only repeat everything you've already told the nurse and nurse practioner. UGH. Anyhow. Last year the doc recommended that Cameron have a sleep study at age 3. We put that off because I was preggers and I was not sleeping at the hospital like that. (I was already mean enough) Now they are wanting him to have it done. Apparently, tonsils are measured on a scale of 1-4, 4 being obstructive and 1 being normal. Cameron is a 3 plus. So the doc wants him to have a sleep study to see if he has obstruction. OK. So I know I'm not a doc, but if we can see that the tonsils and adenoids are huge and obviously we know that Cameron makes a lot of noises in his breathing, why not just get them out. Why put a child and a mother through a sleep study when we all know dang well that he isn't going to sleep which is gonna result in an abnormal reading anyhow. Just so frustrating.

Later that night after the appointment I go into the boy's room to check on him and this is what I find. He is asleep. Feet are on the floor and head is on the bed. This is the first time I've seen him sleep like this, but he does sleep in very weird positions. LOL. I had to get the camera when I saw this. Luckily he was sound asleep and the flash didn't wake him, neither did me picking him up and putting him back in the bed.

So here's to a sleep study. Good luck studying this one's sleep. Good grief. Wish us luck. We have to go in on the 26th and I can hardly contain my excitement.