Tuesday, April 26, 2011


This Thursday is our first IEP meeting so I am asking begging for prayers of peace and understanding from you all..This is HUGE my first IEP meeting and I just need to feel peace that the Lord will get me through this with the best possible outcome for Avery...Im a nervous wreck and cant wait for it to be over!!! 
This month has been a very busy month when it comes to Avery..we had lots of dr. appointments/blood work/another sleep study/dentist. So I just wanted to update you all on everything…
Avery had another sleep study done at the beginning of the month to try to see if we can increase the pressure on her machine and see if that helps her sleep more and keeps her from being so crazy when she sleeps..when I say crazy I’m talking about her everywhere..she literally just rolls around in her room all night..who knows what end she will wake up on..she rarely stays in her bed..{don’t worry its just a mattress on the floor right now bc I don’t want her falling out of bed every night}  So we found out she can tolerate the cpap machine at a nine for now..so that is what we are going to increase it to…Im not going to even say that that was probably our last sleep study for awhile bc its probably not..Im sure we will have to go back again…by now I am so used to them watching me sleep I don’t even blink an eye..Winking smile  We are also dealing with a new mask..but the company is being a pain..I am still waiting for a piece for the mask and its been over a month so I finally called the dr office again and she ordered it from another company and it should be here by Wednesday so I'm crossing my fingers bc it has been a pain bc the head gear has been to small so its kind of like Cinderella where the wicked step sisters try to fit there foot into the glass slipper..lol..IM trying to fit Avery’s head into the head gear and once when I get it on she don’t like to keep it on very long bc of course it hurts..we have kind of been going backwards and its frustrating..But on a postive note she actually went all night one night with her mask on and well she was a completely different child the next day..she had so much energy  I didn’t know what to do…but it was awesome to see!!!
Avery had her first check up at the dentist too..She did good in the waiting room..we don’t need to go into how horrible she was in the room..It was a pediatric dentist that see a lot of children with special needs so they are awesome though..she did end up kicking the nurse in the face..They had her hands and I guess didn’t realize how flexible she is when it comes to her legs..she can touch her shoulder with her foot but I think they will remember how flexible she is next timeWinking smile  Turns out she only has 19 teeth instead of the 20 teeth that most children have..but no biggy…she will probably get all of her permanent teeth in…I didn’t even know..You cant tell there is no space or gap..its on the front four bottom teeth..
Avery had her hearing rechecked…At first they thought her right ear wasn’t hearing the sound waves correctly so it gave me a little bit of a scare but then after doing the other ear and seeing how that one read, and doing the sound booth..which I am so amazed at how they can test children's ears..It really is amazing..they stick a little tiny thing in there ear and it reads the sound waves to see if the ear drum is working properly..and then you go into this sound booth and are surrounded by different speakers..and they make noises into the speakers and she is sitting in the middle of the room in a chair and then turns her head to whichever direction she hears the noise..they make quiet and loud noises..but anyways they decided that she can hear just fine and that both ears are working good..but one tube is falling out..but I usppose its probably about time she has had them in for almost two years {best thing I ever did..no ear infections since then} and the average time is 9-18months..
We then had a appointment with the ENT  to follow up with the sleep study and also to follow up with hearing..mostly everything was the same but he did say that we might have to go into and surgical remove the tubes bc inside her ears are sooo tiny that there might not be enough room to just let them naturally fall out…we will see and just keep an eye on it…
Avery also had a check up done at the regular dr and now weighs 35lbs..and he ordered her blood work..which was check her thyroid, complete blood panel {checking for leukemia}, and  to check for Celiac’s  Disease.  All of it came back normal except for the Celiac’s disease..she tested positive for that..So we will have to go to the GI dr and learn/get more info and maybe even do more testing…For those of you that don’t know what it is..It is basically where gluten eats the small intestine..so we will have to eliminate the Gluten from her diet..and over time if we caught it in time the small intestine will heal if it wasn’t damaged alot..so Im trying to search on the internet and find everything that has gluten in it and I will start to take it out of her diet..I was pretty upset..basically bc It just seems like we have to learn to deal with one thing and then her comes another thing that we have to learn to live with..but it could be worse right??? So if anyone has any good homemade bread recipes without gluten in them you can send them my way!!!!  or anything else for that matter..lol!!  I had brought it up to the dr to get her tested for it bc I kind of suspected it by the smell in her poo and also when she goes poo in the toliet it literally sticks to the toliet..it can also affect there sleeping and make them really sleepy/more tired.and there weight gain..make them not gain weight
She is still getting speech therapy at the school once a week..then she is getting in home occupational and speech therapy once  a week too. She is getting way more talkative and they are working writing and cutting in OT among other things..the hardest thing is keeping her on task..she kind of has her own mind and wants to do what she wants to do and has a hard time doing other things..
Well that pretty much sums up her for awhile hopefully..hoping next month is quieter!!!
She was trying ot twirl in her Easter dress!!! 
Avery LOVES bubbles..and I got her this big tub of bubbles and it was gone in a week..she was always outside blowing bubbles..


Clarissa said...

Wow, you've been crazy busy! It comes in waves over here.. we get a few months without doc appt. and then we get a few months with appts every week, or more often! It can get tiring for sure! Thankfully, we've had a pretty uneventful winter for Abigail this year (thanks be to God!!), so haven't been inpatient for several months! Yay!! Anyway, I will say a prayer for you and that the IEP meeting goes well!

Looking at all of the pics on your last post... and just wanted to say that your 3 youngest sure look West! :) All of your girls are beautiful!

Michelle said...

Craziness!!! Praying that everyting will go well at your meeting. Can't wait to see Dolly again!! And all the girls... when is it going to happen?!?!? :)