Friday, June 10, 2011

Updates on Avery

I just realized that I never updated you all on how Avery’s school meeting went…It really couldn’t of went any better then what it did!!!  Avery will be going to her home school..{the same school that the other girls are going to} and she will go to the full day typical k4 first I just wanted her to go for half a day but then after talking about it in the meeting I really feel that she will get more one on one attention so it will be better..she will get in classroom resource at the beginning which means a teacher will come in and work with her on things that she needs more help with and then towards the end of the year they will pull her out of the classroom and give her resource..and in the afternoon the teacher works with each child one on one on areas that they need more help on!!  She will get pulled out for her speech therapy and her occupational therapy..Everyone was on the same page as to letting Avery showing us what she can and cant do…whew!!!!  Avery’s EI figured we made history in the school district that we are in…ha!!
I also met with the teacher that she will have later bc she wanted to get a feel of where Avery was and what she was all doing and what she all knows…it went sooooo good too!!  I walked out of there so impressed and feeling so good!!!!  She told me she has never taught a child with down syndrome so she has been reading up on how they learn and she doesn’t know signs so she said that over the summer she is going to be learning some so she can communicate with Avery..or be able to know what Avery needs when she is signing something..she is also going to take some pictures of the classroom over the summer and then drop them off to us so I can show them to Avery so she can get acquainted with the room and know what everything if the teacher needs to hold up two pictures Avery will know what they are and be able to point to one of them as to what she wants!!!  I am hoping that we have this much luck with the rest of her school yearsWinking smile
We will also be starting Avery on the gluten-free diet too bc her blood work came back saying that she has Celiac’s  disease.. I wanted to wait until we came back from our trip so my mom didn’t have to worry about what she can eat and what she cant..I have been reading and reading up on it to get a good feel of it….wish me luck:) I have had so many people tell me…oh I could never do that..that would be soo hard..Yes it is going to be really hard but if it was your child and your child was hurting bc of it you would do it..and God would get you through it. It is so amazing at how much u can really handle..There are many times where I'm like nope I cant handle that or think I'm not strong enough to handle all of this and God shows me that I am strong and I know he will never  give me more than I can handle…At times he knows I'm a lot stronger than what I think I am..I have came through so many storms/hurdles in the past few years and it has only strengthen my faith. So I have to thank God for sending me the storms and hurdles…This gluten thing is a yet another bump on our journey but we will manage and we will get through it..just like we have become/are becoming accustomed to the sleep machine with is the new norm for us;) I realized it could have been a lot worse…her other blood results could of came back worse. Sometimes it is so hard for us to see any good when we hear an ounce of bad news but if you really stop and think about it..there is so much we should be thanking God for in the midst of our bad news.. So we Praise God for the other positive results that we got on her blood work!! 
Avery’s sleep machine is we are still battling too..she is not on it all night yet..we had another check up and the dr feels like we are making progress bc we have had a hard time finding a mask that fits her properly..and we backed back  down on the pressure a bit until she gets used to then we can bump it back up more..we just went from hardly any pressure to a ton of pressure and I think it was to much for her to handle so we kind of went in the middle..we also start the machine at a low pressure and then over the first twenty minutes it is on it gradually works its way up to the right pressure hopes that she will be sleeping by the time it gets to the right pressure amount. We are still going in many times and putting it back on after it falls off. The dr did bring up medication but Im not ready to go there..sometimes they have to use medicine to make her more sleepy so she will sleep harder so she will leave it on but then sometimes they are still kind of groggy in the morning from the medicine..been there and that stinks so I have been really dedicated to making the mask stay on as long as possible..we wont go back for another month so then we will see how much she averages with the mask far she is averages still 2-3 hrs on a night.
(sorry I don’t have any pictures..I dropped my camera and broke it so I had to send it in to get fixed..its killing me too!!!)


Clarissa said...

glad that the meetings went well!
Josiah is severely allergic to dairy, so he can't have anything pertaining to dairy at all, plus he is allergic to strawberries... but you're right, it just becomes the new normal and you adjust and its what you have to do! :)

Holly said...

Good luck!! The good thing is that alot of people are going gluten free so there's alot of info out there-there are blogs dedicated to gluten free cooking, recipes and tips galore:) You'll do great I'm sure;)