Tuesday, June 1, 2010

Avery’s Sleep Study


Avery had an overnight sleep study done on May 18th.  Why you ask?  Well I kind of had to push for it because I had my suspicions. Avery wakes up with all of these bruises and she doesn't go to bed with them..and it sounds like she is just trashing around in her crib and sometimes she will just wake up screaming and then fall back to sleep right away so I finally had had enough and told her regular dr that I want a sleep study done..Well he didn't think it was necessary..and I had mentioned something to  the special needs dr and she said just to go back on the prevacid that that might take care of the problem..Well I still wasn't going to give up I just had this feeling that it was more!!   So I brought it up to her ENT dr (ear,nose, and throat)  and he said that if I think it should be done he will order it..because it is pretty common in children with down syndrome. So on the 18th we went to have the sleep study done..It was so stressful..We mainly I didn't get any sleep at all… Avery came pretty close to falling up over the railing onto the floor..Yeap she was jumping the safety railing in her sleep..and if I wouldn't of jumped out of bed and caught her she would of fell..So then the rest of the night I was paranoid that she was going to do it again.  They also have to come in every time a wire is loose..and she was hooked up to about 30 different wires.. How can they expect anyone to really sleep through all that..
Last week we went back to the ENT to get the results from the sleep study..and Avery has moderate to severe obstructive sleep apnea. The dr told me to give myself a big ole pat on the back and thanked me for being so persistent.  Just doing my job but sometimes I wish it wasn't so hard and the drs would just listen to me in the first place..Don't they know that mothers have this intuition thing that is always right!!!  Avery’s total AHI was 17 episodes per hr.  Normal are 3 or less episodes  an hour.. Pretty scary..huh?? That’s what I thought..that is why she is trashing all around in her crib and waking up crying bc she is getting scared..
So where do we go from here..Well she has to have her tonsils taken out on the 9th of June..She is all set up for her surgery..she has to stay the night so they can monitor her since she does have such severe sleep apnea..The dr will also check to see if her adenoids have grown back and if they have she will have them taken out again.  Yes I guess they can grow back. Then in two months we will do a repeat sleep study and see how her sleep apnea is.. In most cases taking the tonsils/adenoids fixes it but I guess in children with down syndrome not necessarily.  If her sleep apnea is still bad then we will be taking home a cpap machine and she will have to be hooked up to the oxygen machine and wear a mask all night. I'm praying that taking the tonsils out works bc I don't really want to have to deal with the cpap machine every night.  Will keep you all updated!! 
Here’s a few pictures for ya..Avery holding her babies..She loves them babies!!  This is Avery’s cheese face..It is really hard to get a picture with out this face she sees the camera and instantly says “Cheese”..and keeps saying it until I put the camera away..
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So what do you think…do you like the lace flower that I made for her????  You can get a roll of lace at Hobby Lobby for a dollar if you wait until it goes on sale.. Here’s the tutorial in case any one wants it…Go here.. In case you all want a really good blog to follow..Go to U-Create..she show cases all these neat things that she finds on other blogs..that's where i found this flower first..
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Hope everyone had a great Memorial Day weekend..we were going to go to the lake but it rained all day so we had a grill out with all of Jared’s family at our house.. A big Thank You to all of the brave men and women who are and who have  fight/fought  for our freedom!!! 

2 comments:

couture unraveled said...

Cute lace flower!!!!! Scary stuff with Avery!! We had Cienna's Tonsils and Adenoids taken out when she was about 2 and 1/2!! She had the sleep apnea thing too..not sure if she had it as bad as Avery did...but bad enough that they were willing to remove them because of it!!! BEST THING I EVER DID!!! she use to snore SO bad and most times her throat would get completely closed off until she would move her head and tongue so air could get through!! It was actually kinda scary!!! anyway...the healing process was not fun...but it didn't seem like it took long to heal at the same time!! Now you can't even hear her breathe!! It was AMAZING!!!(we are now dealing with the same yet milder problem with Zachary(our youngest)) Good Luck with the surgery...and buy LOTS of popsicles!!hehe!!!

k a t y said...

I love that we have our 5 girls in common. Yours are absolutely darling. Love that photo of Avery holding...Jayla? So cute.