Quick Update

Just a quick update on Miss Avery…We got to come home tonight around supper time..We had to stay all day bc she was refusing to eat or drink anything..So they decreased her IV fluids some to see if she would drink more but nope she still didn’t. I really don't know how she got to come home but I guess. They weighed her wet diapers and then put in how much fluid she had taken in from the IV then the look at the difference and apparently it was enough to send us home.  I think they wanted us to stay again..but I kind of wanted to get out of there..They did say to watch her closely for dehydration.  So we will have to do that..bc when we got home she still refused to drink or eat anything and started to run a fever a little which is normal I guess....It is going to be a long two weeks of recovery..Its not very easy trying to pump liquids in a clench tight mouth. I have a VERY stubborn little girl!!!
How is her sleep apnea now??  Well I wont know that for a while..She will have to have another sleep study done in two months.  Then we will be able to tell if it helped or not!!  Its really hard to tell right now if it improved at all bc she is so congested..kind of croupy from getting her tonsils out. In fact they almost gave her a neb treatment last night bc she was sounding so croupy and looked like she was struggling a little breathing….but I guess we didn't  need it..

Oohhhh..I almost forgot.....guess who was waiting for us to come home tonight...Mr. Snakey!!!  He came back for another visit..but this time Jared was home and well lets just say...Off with his head..he is now dead now..Wheeeww!!  What a big sigh of relief!!  But before Jared killed him he OF COURSE  had to hold him straight up ( of course he wasnt holding on to him with his own hands) He was the length of my outside door from top to bottom..and he apparantly was only a baby. Huh??!! .Lets just say that Im just glad he is dead now!!!

Surgery went good

The surgery went really good and fast!!  Her adenoids did grow back a little so they did take them out again too..She did really good in the recovery room and about an hour later they had her in here room.. I feel pretty bad bc of course I brought her sippy cup with me but of course it was a straw one and of course she cant drink from a straw..duh??? Why didn't I think of that..good thing they had an extra one in the recovery room..but it wasn't really the right one..It was a hard spout and not a soft one..She is pretty picky when it comes to her cups. She drinks her milk out of a certain cup and her juice and water out of another one...So once when we got her back in the room and she fell asleep while Jared was still here I snuck out and went to the store and to try to find her a new one so we can keep her hydrated..But the whole thing is just  pretty frustrating and could of been avoided if only I would of known. We should be able to get out tomorrow..if everything goes ok..At the beginning she was doing wonderful..drinking alot but now she kind of took a turn for the worse I cant get her to drink anything..she’s sleeping right now..they just got done giving her some Tylenol with codeine for the pain and it made her sleepy.The nurse just told me that the night is usually worse so I might be in for a LONG night!!! Here’s a few pictures from today!!
This was in the pre-opt room before they took her back…

This was while we were waiting for them to take her back..Jared was on the phone and so Avery picked up my phone and was pretending to talk too:))

These are after the surgery in her room!!

Dolly’s Surgery

Just wanted to let you all know that Avery is having her surgery tomorrow..They are taking out her tonsils and if her adenoids grew back they will take them out too..She is going in at 8am and her surgery is 1030am..Will try to let you all know how it goes later tomorrow..Please say a prayer for Dolly that everything goes ok tomorrow and pray that this works for her sleep apnea so we don't have to have the CPAP machine..

Our Visitor for the day!!!

We had a visitor come to day that pretty much stayed all day!!  Except no one really wanted this visitor to stay around… The girls thought it would be cool to take some pictures of this visitor from the inside of course…there wasn't a chance they were going outside..In fact they locked the doors so it couldn't come in..hehe!!!

So we pretty much stayed inside all day..and kept a close eye on our visitor!!!

Would you like to know who came to my house today???!!!:)  Be prepared he’s big..I mean HUGE!!!  This was taken from the inside of course!!! 

In case you cant get a good picture of our visitor I did bravely make it outside to snap a quick picture…All I have to say is its a good thing I have a really long zoom lens or this picture wouldn't be here!!! Ok its a black snake..Apparently they are harmless..but I dont care..It can go visit someone else..bc I HATE snakes..a snake is a snake to me..and after Jared looked at my picture he claims this is a baby I would really hate to see what an adult black snake look likes..EEEECCCCKKK!!!!



and Destiny was brave enough to go outside with me bc she wanted a good picture too!! haha!
 
All in all it was a good day for me bc the kids didn't want to go outside and play so I got them to help  me clean the house!!:)

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..



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..


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!!!