Quick Follow Up to Hayden's Surgery

It was hoped that by removing his tonsils and adenoids he would sleep better. Which hasn't been a total waste because he has. Instead of waking up 8-9 times per night, he is only getting up 2-3 and having spontaneous nights of not getting up at all.. Exciting right?

Well, not so much.

The idea was that if Hayden sleeps, mommy sleeps..... again, not so much.

Turns out...

Hayden has two types of sleep apnea. 

Obstructive:

 

"Obstructive sleep apnea is a condition in which the flow of air pauses or decreases during breathing while you are asleep because the airway has become narrowed, blocked, or floppy."

Central:

"Central sleep apnea is when you repeatedly stop breathing during sleep because the brain temporarily stops sending signals to the muscles that control breathing."

It appears that the surgery has helped significantly with his obstructive sleep apnea. However, the obstructive sleep apnea was masking the intensity of his Central Sleep Apnea.  So those 2-3 "wake-ups" I mentioned.... are now full blown episodes of the exorcist.  The screaming, the crying, the shaking...as if he is awoken by a horrific nightmare. It usually takes Brandon and I both to calm him and lots of TLC.

Sigh...

As I described it to the doctor, he stopped me.  "His sleep apnea is neurological.  He probably wakes up to the sensation of suffocating.  There is no telling if this is related to his chromosome abnormality or if he will grow out of it. But some kids do grow out of it by the age of 3 or so.  In the mean time, we just wait.  Let's give it some time and see if it improves as he grows."

So here I sit again--- staring at his monitor....jumping up with every slight noise that I hear...and panicking when to much time has elapsed since he last moved....

Sleep? Yeah, that's over-rated.

Friday: Working Mom Blues

I am so fortunate to have the best parents in the world and my babies are even more fortunate to have them as their grandparents!

This week has been hard emotionally and physically. The diet is kicking my butt! I've managed to make it 10 days---full commitment, no cheating (not even once!). I've watched my son eat pop tarts, pizza pockets, macaroni and cheese, chocolate. And each time I make it through. I thought I was getting easier until I spent 2 hours and a meeting at Starbucks. I ordered....nothing! Sheesh that was hard!

I taught an emotional class today about the importance of early intervention, evidence-based treatment and parent participation. This obviously was not my first time teaching the class...however it was my first time teaching the class with my own child having been diagnosed at risk of Autism. Most of the parents in attendance were new to the diagnosis, and while I'm not new to "Autism" I am new to the reality of my son being at-risk....sigh (I'll just blame the 500 calories)!

But then I got to come home to these two cuties....Absolutely my favorite part of the day. I don't know what I did so right for God to bless me in the way he has but man, my kids are cute!

Quick iPad App Review: My Medical

Can I just say.... Amazing! I have found my new favorite App. I have added "take advantage of technology" to my Navigating the system tips, because with out all of these short cuts I am not sure where I would be!

I do realize I am a few years behind, so pardon my bizarre excitement as I work through the App Store!

Top on my list so far is an app called My Medical. This has saved me so much time. As many of you know, keeping track of records, appointments, medications etc. can be so difficult.  But with this App I am able to sinc all appointments with my iCalander, email pertinent information to myself or others in one step and keep track of questions that I have for upcoming doctors appointments.  I can even scan in records, reports, xrays, labs etc! 

As I've mentioned before, we are in the process of medical review for Arizona Long Term Care.   It took me 5 minutes to prepare all of the necessary information they needed (i.e. Doctors, addresses, phone numbers, next schedule appointment, hospital visits, last seizure etc).

Here is a wonderful review done by the App Whisperer. 

I also downloaded an app today on my iPhone:  Milebug   I haven't had a chance to use it, but I want to try to keep track of the medical appointments to make taxes a breeze! I will see how it works next week.

45-Day Challenge

This post will be about.... yours truly.

This weekend I took the kids up camping with my family. The weather was so beautiful! It sprinkled and there was a cool breeze. Hayden did okay. He has still been in a lot of pain from the surgery, so he wasn't at his best. All in all, we had a great time.

My brother Mike was camping, too! Man, I just can't express enough how proud I am of that guy! Mike took a 90 day challenge, committed to the P90X, and now looks absolutely phenomenal! Aside from the weight-loss, the muscle building, etc. Mike looks healthy and happy! He quit smoking and drinking (except he is able to have a low calorie beer on his binge days). Today marks day 80! What a stinking' accomplishment!

And what a huge motivation to get started on my own challenge! So, tomorrow starts day 1 of my 45-day challenge. I'm going to detox, eat clean and shed this baby fat once and for all!

(with a little guidance and support from San Tan Natural Medicine).

I have created self-management data sheets and a reinforcement schedule to keep me on track!

First reinforcer on the list... A pedicure!

Wish me luck!

Post Surgery Update

Hayden had his tonsils removed Tuesday to help alleviate some of the apnea episodes he is experiencing through the night.  The first 24 hours were spent in the hospital with dad.  How lucky this boy is to have a dad that is 100% devoted to him and his sister!  I kept the baby home as they wouldn't let her stay in the hospital room. They did let us go visit, and when he saw his sister he cracked the biggest smile (despite the pain and discomfort).  He immediately reached out his arms to hold her! Soo sweet!

The hospital staff was nervous sending him home yesterday.  It was hoped that he would eat a good breakfast and attempt to intake some fluids early in the morning.  But, he wasn't having anything to do with swallowing much of anything.  We were lucky they sent him home anyway!  We tried all day to get him to eat and drink with very little help. Last night was especially rough and finally at 2am he decided he was thirsty and hungry!  So we went downstairs and ate some broth, jello and Mandarin oranges!

I love that he has been in such good spirits through recovery. Last night I tried taking him to see fireworks, but he really wasn't interested...by the time they started he was so exhausted from the day he could barely hold his head up.

Little sister, however, enjoyed her first fourth of July. She is such a little ham!  Her giggle is dangerously contagious! 

Today Hayden managed an hours worth of therapy with his DSI, Ms. Jessica. He even cried when it was time for her to go. He has had Ms. Jessica come see him every week since November. She is a natural at implementing ABA techniques (although I'm not sure she knows it!). Today he colored, laced, completed a form box, signed "game", popped bubbles and receptively identified three animals! What a smart boy he is!