2009_12230006

I have heard from Otolaryngology (ENT) …again, why do we have to know how to spell this?

The results of his sleep study are this:

He had 6 Obstructive Sleep Apnea (OBA) which were not technically “true” apnea. They were Hypopnea or periods of shallow breathing, which can affect oxygen saturation levels. If they were true apnea, he would have stopped breathing.

He had 8 Central Sleep Apnea (CSA) with 7 of the occuring during REM sleep, or the deepest part of sleep. CSA occurs when the brain fails to get the signal to remind the body to breath. This is usually seen in children with Achondroplasia who have compression of the Foreman Magnum.

The lowest his oxygen went was to 91% with a majority of his oxygen staying at about 98%, this is good.

The sleep lab, then calls me an hour later to schedule an appointment with their clinic May 4th at 2:30 to meet with the sleep disorder doctor to plan a course of action. When I asked what this could mean, she said it could mean medication, a CPAP or any other course the doctor wants to take.

So, needless to say, I am anxious. I want to say one bothers me more than the other but the truth is they both bother me the same.

If his Hypopnea is severe enough and his breathing becomes too shallow, his blood oxygen level goes down to far and it could be very difficult for him to recover. If his central apnea continues, well, that is not good.

I have placed a call to Dr. Pauli’s office and I am waiting to hear back from them. I want to get this resloved, obviously, but I don’t want anything to drastic if it doesn’t need to be done.

Sleepless in Monroe arriving in theaters today!

Today, I took Knoah up to A2 to have his brace adjusted. Over the past few weeks I have had the oppurtunity to watch him and how he moves in it. We ended up shortening up the back lower half because everytime he sat down he would want to fall over. We lowered the back upper half to give his shoulder blades room to move. Prior to this, if he fall, he was down for the count until someone helped him up.

Think “I’ve fallen and I can’t get up!”

So, with it adjusted, hopefully he’ll be more comfortable in it. We also added some padding to the front of it to make it more snug, he was getting his hands down the front and moving it down. He also managed to find a way to un-velcro it to get it off so we had to double velcro it.

Gotta love him, he’ll find a way out!

On a happy note, Knoah is learning his ABC’s! He can point to each letter and in his speak say what they are. Some are clear, other’s not so much, but his speech therapist says as soon as we get his ears taken care of this should increase his speech. He is delayed in expressive language, as some children with Achondroplasia are, so this too will take time.

He can count backwards from 10 and loves watching the microwave as he is doing this, so I have been making a lot of popcorn lately.

I am so sad, he’s growing too quickly!! He’s a big boy now!

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