Avery’s medical update

 

Avery has had a weird rash on her arms for awhile now..but a couple days ago I noticed one of her arms the rash was getting darker. So I panicked..I knew what kind of rash it was..It was a petechia rash. It looked like little tiny purple pin pricks. I knew one of the causes of why someone gets petechia rash..so I literally had an panic attach in minutes..my mind instantly thought the worst. (isn't that what we always do) For those of that do not know it can be a symptom/sign of leukemia and since leukemia is more common in children with ds that is why my mind instantly thought of that. Avery gets her blood checked every 6months to a year as a precautionary. But I remembered we hadn't had it checked in awhile but now thinking about it hind sight they did check it before her surgery.

She was scheduled to go to the sleep dr in the morning so I knew I would just ask him about it. So when we went to the dr the next day he basically said that he didn’t really know too much about petechia rash but that he thought it wasn’t a big deal....I wasn’t really happy with his answer so I of course couldn’t let it go..so I walked out of there and called Avery’s pediatrician. They told me that I could get in right away to come on over..so that is what I did…He instantly checked her CBC count and palette count..and we waited..which seemed like forever..and prayed over and over..please God don’t let this be happening to me..He finally came in and told me that it came back normal..Normal range is 140 something and hers was in the 200’s. BUT he does not know why she has a rash like that..and wants answers..so he is referring us to a blood doctor so he can rule out anything..or test for more things if we need to..he told me I don’t even know where to start and what to test for so I would just feel more comfortable if I referred you to a blood doctor bc they will know. So that is what we are doing..we will wait..of course I still am a little panicked about it bc I have read many cases (Google is not my friend and I don’t know why I havent learned this lesson) where the CBC count came back normal many times until it (leukemia) was found. But we will pray and trust God that his will be done. The blood doctor will be looking for other blood disorders or other auto immune diseases. Right now I just feel like screaming please give this child a break!!!!!  She has been through enough!

Here’s a picture of her rash..(dr told me to take pictures)

 

Update on her sleep dr…she has been off her sleep machine for awhile bc I have been waiting for supplies..they cant get it together and get me the right mask..and hers of course is broke..so it showed the dr a big gap off of the machine..We just started back up a couple of days ago..so he wants to see us back in six weeks and see how she is doing again..and we are suppose to do a repeat sleep study done pretty soon..one where they will do part of the night with out the cpap machine one to see if she has improved at all…(praying she has;) and then the other part on her machine..and that way if she hasn’t and needs to be increased or decreased some they can play around with it in the sleep lab. We have taken a few steps backwards when it comes to this..but with her in a cast and then waiting for supplies..hopefully the next six weeks she does good on it..where are we at?? Well I put it on when she goes to bed..she doesn’t fight putting it on at all..and wears it for awhile..but I don’t know how long bc I always have to put it back on her when I go to bed..but then its up to her how long it stays on for the rest of the night..it is NEVER on her when she wakes up…so sometime during the night she takes it off again..not sure if she literally takes it off or if it falls off with all of her moving around at night…I'm curious if a weighted blanket would help keep her in one spot..maybe she will get one for Christmas…

(I posted two posts today…look at the one below this for a hip update;)

This last week

So the last two weeks we have had a few dr appointments for Avery..we arent done yet but I thought I would update on the ones that we have done…
Avery had her hearing rechecked and everything checked out good. It was actually great..No signs of fluid in the ear and no signs of even a slight hearing loss. woohoo!! That is such great news..especially since she has had her tubes out since last October and still she hasn’t had one ear infection since.
Avery also had a recheck up with the eye dr. We are still just going to closely monitor her left eye. It turns in sometimes but he feels like it only does it when she is looking up towards something..well it mainly does it when she is looking up. So we just go get it checked on every six months to see if it is getting worse or better but it has stayed the same. Her sight is good too..still borderline for nearsighted.
She also had an appointment with her orthopedic doctor. He did some x-rays and will send them up to the doctor in Boston and we will wait to see what he has to say but he had told us to expect at least another three weeks in the cast. The bone was growing together very nicely he said..so that is good news. Another three weeks is not so much good news. Today marks the one month mark..She has been in the cast for four weeks already. In some ways it has gone by fast but mostly it has went by really slow! Her one incision has healed very nicely but the other one must of ripped a stitch or something on the corner..so it keeps breaking open and then it will scab and then break open again..the dr said that he wasn’t worried about it..most scars heal from the outside in..but since this one broke open..he has to heal from the inside out now…hmm..interesting. We don’t know when we will have to go back up to Boston…he is going to ask..I don’t think we will have to again from my understanding until the next surgery but I could be wrong. We are going to try to get the other side done before the end of the year to cut down on our costs. Once when we meet our deductible and pay our maximum out of pocket expenses then we are done for the year so this surgery is going to put us there and so we are thinking if we get the other side done then we wont have to pay anything for that one since we have already met our maximum.  We shall see if it actually works out. We do have to wait six months from her first surgery date to do the other side he did tell us that.
Avery also had a dentist appointment and everything looks great..no cavities and no growth from the teeth that she was missing so she obvious will not get them baby teeth I guess..strange! but you could never tell she is missing teeth..they are all full on the top and bottom…its going to be a mess when her permanent teeth come in I think.
Avery also had an appointment/ follow up with her sleep doctor. Everything is ok.not great just ok. She isnt doing as good as we were thinking on the CPAP machine. I thought she was doing good since we got back after being used to wearing it all night in the hospital..but I apparently she is pretty sneaky..and is taking it off shortly after I put her to bed..I usually check on her before I go to bed and then we put it back on..and she is swiping if off then too..I have a swiper on my hands…lol! He brought up medication again and im not comfortable medicating her…but we will just keep chugging along and see if she improves..maybe I do need an alarm on her machine so I can put it back on all night and get no sleep…but at least one of us was getting a good night sleep..
whew…that is it for now…next week she has her regular check up with her pediatrician and also with the dietician and feeding doctor…the one that has been monitoring all of her aspiration issues in the past..
We got hit by a HUGE hail storm a couple of weeks ago..we have lots of damage..Our house needs a new roof, new gutters, one side of siding, and some drywall repair in our house because the roof leaked. About 13,000 in damage. Both of our vehicles were almost totaled out by the insurance adjuster…couple hundred away from that.. Im just thankful we have insurance on all of it and will cover it all. But here are some pictures of the storm..I did video tape some of it too and we watched it back the other day and you couldn’t even hear any of us talking bc the hail was hitting the house so hard. I thought for sure it was going to break a window. All of my outdoor plants/ flowers are damaged. We even took cover once because I thought for sure it was a tornado..I couldn’t see anything and all of a sudden I see leaves just whipping around..It is almost like it stalled over us…and then came back again..


Don’t worry this was after the storm…;)

Golf ball size hail…


this was my hydrangea which I was all excited bc it was coming up good this year..but nope not any more!


This is our pool box on our deck…

31 for 21: Day 28 Dr updates

This month has been crazy with dr appointments bc once again its that time again to go see the dr.s for updates mostly….
Sleep Check up: First up is her sleep dr and her sleep apnea…How is she doing?? The most common question I get from everyone…well we went for a check in basically and she is getting smarter and apparently she is taking it off pretty much right after we put her to bed..her I thought she was getting better and leaving it on longer each night but I guess she had me fooled!!!;) We did get a new mask that we are going to try..that is one of our biggest battles is finding the correct mask that fits her correctly..I don’t know if we will ever get there where she will leave it on all night but we will keep trying…usually when I go to bed I put her mask back on just to make me feel like im trying:) 

ENT check up: She has not had one ear infection since we had tubes put it in..the best thing we could of done..and it has been over three years and they are just now falling out!! One of her tubes fell out on her own and the other one was stuck in her ear canal so the dr just pulled it out.She didn’t even flinch...I couldn’t believe how tiny it was..they are smaller then a pea.. HE said that we just need to come back on a as needed basis…wooohoo!!!  Hopefully we don’t have ear infections again though since the tubes aren't in there..but he did say that her ear canals are bigger then what they were so that’s good…
Dentist check up: Everything was great!!!  That is always good:)
Eye Check up: He still doesn’t want to do anything about her one eye yet…which makes me a little uneasy but I guess we just wait bc everyone tells me that he is good and knows what he is doing and he is the only pediatric eye dr in the area..my concerns are that her one eye wanders in and I am seeing it a lot more..just not when she is tired anymore..she also tips her head side ways…ill just keep watching it…
Her neck: We were suppose to go to the neurosurgeon today but he had to have surgery so we will be going on the tenth of November..
Special Needs Dr/nutritionist: She is doing great…she really watches her weight and to keep her in check so she don’t get to heavy!! Everything she eats gets put under the microscope!!! Which in the end is good!! She also said that we can let her drink from an open cup without having to redo a swallow study bc I don’t hear her coughing when she drinks..she mainly drinks from a straw but she does do an open cup now and no more sippy cup!!! 
One other thing we are checking out is that she has a weird little bump next to her spine on her lower back..I don’t think it is anything major according to the one dr but she said that we need to go to her regular dr and then he can order back x-rays so we can just make sure…so I am waiting for the dr to call me this morning..we will see …let you all know when I know what it is!!!  At first I thought it was just a bruise but it has been there for months now and it seems like it is getting bigger.
Well that pretty much sums it all up…ha!! 

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 classroom..at 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 is..so 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 years
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 Avery..it 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 amount..in 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 on..so 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!!!)

Avery

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..  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 time  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..

I’m a BIG GIRL now!!!!

Sorry I haven't posted in awhile but I've been really busy…We have been doing a lot of this lately…

and this…{running around in our panties} yes she has a snuggly in the second picture..lol!!

and I'm happy to report that we pretty much got it whipped!!!! We have been working on it for around three weeks…there were a lot of times where I was about ready to throw in the towel and give up but I figured I started and I'm going to finish it bc I knew she was ready!!!  The first couple of days were really rough bc I could not for the life of me get her to go in the potty for the first time..The first day we of course had puddles everywhere and I would just watch her very, very, closely {pretty much stalk her all day} and run her into the bathroom quickly when I seen her start to pee…so then she was getting it that you go pee in the bathroom so she would run into the bathroom and then pee on the floor…Well then I got her to understand that it goes in the potty. So then the next day she would start to go but then stop and just hold it until I put a diaper on her at bedtime or naptime. See I have a very stubborn little girl   but good thing I am much more stubborn!!!  So then we said bye-bye to diapers all together well that didn’t really fix it bc she just kept holding it and her stomach would be bulging from holding it all day and she would be saying “owie”  and then we had wet sheets for a couple of nights…Well I started to get creative to get her to go pee in the potty..I tried EVERYTHING!!! and nothing was working..until my SIL suggested putting her hand in a warm bowl of water…and Guess what she peed almost instantly..{grin}  So yes it actually does work!!hehe!!!  Well then it was kind of like a light bulb moment..and it kind of all clicked in place…or so  I thought bc we did end up going backwards the next day and I was so confused…ready to give up but no we kept pressing forward…and IM glad that we did..Yes there have been some panties that have landed in the garbage bc that is one thing that I cant really do clean poo out of panties!!! I have a weak stomach and my gag reflux kicks in and out they go as fast as possible! I know its kind of a waste but oh well…I was prepared I bought three packages of panties when we started;) She still has to have lots of help getting her pants down and getting on the potty but this will come..I'm not complaining bc she actually goes into the bathroom when she has to go without me asking her..So as soon as I hear the toilet seat hit the back of the toilet I go running like a mad woman to make it to the bathroom…This week is our third week into it and so far this last week we have managed to keep our panties on all day that we started with …WOOOOOOOHOOOOOOOOOOOO!!!  I'm just going to say that one more time…WOOOOOOOOOHOOOOOOOOOO!!!!  bc this is a HUGE deal in our house right now!!!!  I feel like climbing up to the roof top and shouting it and I'm sure my other girls will follow me and do it too bc they have  been helping me potty training her {hey, that’s four extra eyes watching her} Next task weaning her off of the treats…Avery   The babies and Avery have to go in the bathroom with me whenever I go well anyways..I know get the potty dance every time I go to the bathroom{grin} She is so proud of me….WE ARE ALL SO PROUD OF HER!!!!!
I have been working on Avery’s room lately bc we have gotten her out of the crib {well that was a while ago but anyways I never did anything with her room so I wanted to make it more of a big girl room..and what better time to do it when she turned into a “Big Girl” with her potty training… We repainted her room and I painted this canvas for her room..don’t look to closely..it is my first painting on a canvas and its not perfection but I was pleased with myself!!!

I also made her this owl pillow for her bed…

The second picture is some canvas’s that I redid..she had them more baby and I wanted them more big  girl so I recovered them with 12x12 scrapbook paper that I liked using mod podge.. Then with the top on I cut about five inch circle from some white muslin fabric and folded them and just kept gluing them down until I liked it..and for the other one I just did a really big rolled flower out of white muslin fabric and glued it down…what do you think??? 


So I thought I would update on how Avery is doing on the sleep machine too…

She does really good putting it on at night..but it only stays on for about a couple of hours..bc she is still pretty restless and is all over the place when she is sleeping. So about every hour we go in and put the mask back on but when I go to bed it is usually off so I just leave it off. So we pretty much play this game every night..We had our check up with the sleep dr last week and they said that she is averagine2-2.5 hrs a night and they were really pleased with that..They said we were doing a great job..We had to bring the machine with us and she had to wear it for awhile and she did so good..there was an older boy..(id say about 12-14) and he wasn’t wanting to wear his mask and so the nurse walked by our room and made a point to point out how wonderful Avery was doing and she was only three.So that really helped me and assured me that we were doing a good job!!   At the end of the month we get to go back and do another sleep study since she is used to the mask.(boo!! I really dislike these sleep studies) This will hopefully increase her four to a higher number and it will help her sleep better which in return will help her leave the mask on a lot longer..When the machine is at a four pressure wise it is only helping her sleep apnea about 30% and we want it to help it 100% so the only way to get there is increasing the pressure..We knew that this was going to have to be done once when she got used to the machine..bc her last sleep study was such a disaster they thought they would just leave the machine at a four for temporarily and then increase it later when she got used the mask. I think she knows it helps her and that is why she doesn’t fight it..Im just so thankful that she doesn’t really fight it anymore..she did in the beginning..maybe she just knows that it’s a battle she isn't going to win bc she hasn’t yet!!  We are actually going to be getting a different mask bc the one she has right now is a little big..it goes in to her eye a little and how annoying can that be having air blowing into your eye!!!


Well that pretty much sums it up for now!!!  Hope you all have a great weekend…We are celebrating our 11th Anniversary on Friday and on Sunday its Avery’s fourth birthday..So we are going to have her bday party this weekend!!! 

Avery and the CPAP machine

We went to the sleep doctor for the first time last week.. We have just been going through the ENT to do all the sleep studies..and come to find out I guess we were kind of going about it in the wrong adult way. oh well  I was just glad that we finally got to go and met this doctor..Its kind of funny but he actually said the same thing..that it was really good to finally meet Miss Avery..that he has been reading the studies on. So we spent around two and half hours there..Let me just say that EVERYONE in that office truly loves there job and for once it was so nice to really see..the dr and the nurses were AWESOME!! We call and check in with nurse every week. She wants us to..to see how she is doing..and we also have a home respiratory therapist that checks in with us. So while we were there we fitted her for a mask that actually fits her..Did you know that there are about 40 different kids masks that they can pick from.. This is the one that we ended up with…

Isn't it lovely???  The doctor went over all of her sleep studies and told us that she did improve a little bit when she had this last sleep study with the CPAP machine. Not a lot maybe 40% which means she didn’t have as many episodes as she did with out the machine. Remember I told you we only got the machine up to a five, so we are going to start off at a four then in a couple of months when she is used to the machine go back for another study with the RIGHT mask and try to see if we can increase that more. BC even though we did see a little bit of a good change its not 100% and the dr isn't happy with that until we have seen a 100% change. Here is a little education on the CPAP machine. The machine acts like a vacuum cleaner..it blows air at a pressure that is able to hold the airway open while they sleep. The pressures that are used are the naturally pressures that are in our airways during the day when it is open. CPAP machines do not give Avery extra oxygen, they are just blowing the air that is around us all the time. This is the machine that we will be using….

Don’t you just love how the machine says “Welcome”..HA!  Thanks machine I need to be welcomed every time just to  be reminded! It has a heated humidifier on it. A lot of air with low moisture can dry out and irritate your airway. Not only are dry air passages uncomfortable, but the swelling they cause can actually narrow your airway affecting pressure requirements. Humidifiers add moisture to the air from the CPAP machine. There are two kinds of humidifiers: cool passover and heated. The cool passover humidifier passes room temperature water over room temperature air. The heated humidifier heats the air to ensure to can hold enough moisture to maintain a comfortable airway. The machine also has a modem on the back of it that it automatically sends all the information from the last night to the doctor and the therapist so they can review it and now I guess if she kept it on all night. Jared was a little bummed out about this. Why??? bc he wanted to try the machine out and see if it helped him out..We swear he has sleep apnea too..HA!  At least I do bc I'm the one that lays awake half the night listening to him. 
Now to answer some of your questions bc I'm just now finding out the answers myself:  Avery has Obstructive Sleep Apnea. It is where the upper airways collapses resulting in decreased or no air getting to the lungs. Muscles in the neck and throat are responsible for maintaining the structure and tone of the upper airway. During sleep these muscles relax and during REM sleep (dream sleep) they become even more relaxed. Obstructive sleep apnea causes disruptions in breathing that can cause Avery’s oxygen (the good gas that your lungs take in) to drop or their carbon dioxide (the bad gas that your lungs expel) to rise. In addition, the collapsed airway is reopened by either a brief arousal from sleep or a full awakening. These disruptions in sleep can occur quite frequently during the night and keep them from getting a good nights sleep, so they are sleep deprived the following day.
Can we just not treat it??  No if left untreated many problems can occur. Like behavioral, high blood pressure, heart burn, poor school performance, and over long periods of time the increase of stroke, heart attacks, pulmonary hypertension and heart failure significantly.
Can she outgrow it??  Yes, she could very possibly out grow it later on down the road..we will just keep a close eye on it and if we believe that she is then we just have a repeat sleep study done to find out.
So on Avery’s second study after she has had her tonsils and adenoids out she was averaging about 15 episodes an hour where her oxygen levels dropped. Which puts her at the severe level and  Mild-moderate for central sleep apnea. Now this last study that we had with the CPAP machine she went down to 9 episodes and hour. How they even got anything recorded from this last study is beyond me..bc boy like I said before I don’t think we got any sleep but apparently Avery did according to the study!
We left the office very educated and encouraged that this could possibly really work!  So for the last week we have been desensitizing Avery to her mask. She wears it for about 5-10 minutes before bed.Then last night we put the mask on hooked up to the machine for 15 minutes while she tried to fall asleep. HAHA!!  That didn’t really work really well..but I kind of went into knowing that it wasn’t going to go over very well..so it helped me really stay calm and focused. She tried to take it off repeatedly. We tried to put the extra mask on her pig and we tried to lay down with her and read a book but she did not want to lay down at all with that mask on!!!  She sat up and resisted us if we did try to make her lay down..so for the first night I thought it probably wasn’t all that important that she laid down..maybe tonight. Now tonight we will add 15 minutes and continue to do so until she is wearing it all night and if she falls asleep with it on then we will leave it on. Our goal is hoping for 2 hours each night for the next two weeks and then increasing from that point until she is wearing it every night for the entire night.

What a week it has been!!!

Do you ever have one of those weeks where you think you just cant handle one more thing to go wrong???  or  are scared to wake up the next day bc you are afraid of what will happen next???  We have one of those weeks..it seems like it just keeps piling on and whew truthfully I'm exhausted!!
We have been dealing with HUGE cuts on Avery’s Medicaid that was suppose to take affect Feb. 1 (they have no bumped it back until April). Avery is on Tefra Medicaid which goes by each case and not by income..It is a huge process to get on and we actually had to fight for it along time ago and we won..some of you may have remembered that..Well anyways Tefra Medicaid was set up by Katie Beckett to help families deal with all the medical expense and to help keep there children home instead of in the hospital and such..Well how do the legislative  and all the representatives seem fit to make such huge cuts to affect the kids that need it the most…Just to give you an idea of what we will be dealing with ..they are cutting all of the therapies to 75 visits per year..that is Everything not just 75 visits per therapy..so Speech, Occupational and Physical all have to share the 75 visits..and Avery is seen three times a week..so 3*54=162 visits that she has a year…so that is 87 visits that she is going to miss a year..Just when we start to see some gain this is what happens..I have a feeling we are going to start to regress..and that isnt even the worst of it…They are going to make it retroactive which means from July,2010-to July 2011 can only have 75 visits…so when Feb 1 was going to come around Avery would be done with therapy until July..That right there is just sneaky and wrong in my opinion!!!!!! That is five months with out therapy..That is HUGE in Avery and other kids.  I'm sure they are just thinking what is five months..cant be that big of a deal..but IT is HUGE  trust me..What I cant understand for the life of me is why they are grouping Tefra Medicaid with regular Medicaid..you don’t qualify the same way and it is a whole new ball game in my opinion..I think children and adults with disabilities should be the VERY LAST people to get affected.. So I have been kind of stressed out about all of this!!!  I simply just hate the government!! You would think that they would try to help us out and not make things worst for us..We really have enough to worry about….As you can imagine this has caused a HUGE uproar among many parents and we ARE going to fight this tooth and nail..I am Avery’s mother and her best advocate and if I don’t do anything then that means she is going to be hurt by it..and I will do everything  I can on my part to try to help her!!!!  So I'm in the process of getting a letter of medical necessary from her doctor and writing my representatives letters!!!
We also had another sleep study for Avery. This one was with the CPAP machine and to determine how much oxygen she can handle and so on..Can I just tell you right now that it was HORRIBLE!!!  I mean really, really HORRIBLE!!!!!!   When we first walked into the sleep lab she turned around and kept saying “no,no,no, no!!” Poor girl she remembered from the last one!!  Here she is starting to get hooked up with some wires on her face…

She is starting to hook them up in her hair.. The sleep tech that worked with us this time..must have been new bc she had to keep re-hooking them up..they wouldn’t stay and some she couldn’t find..urghhhh..a little frustrating!!!

She doesn’t look to happy???HUH??

This is her pretty much all hooked up…

Having a CPAP machine on is suppose to help you breathe better and well in Avery’s case that night it did not do that..it made her worse!!  We maybe got a total of an hour of sleep.. Once a wire comes unhooked they have to come in and turn the light on and wake her up and re-hook her up…and also with the little white cardboard that they put under her nose and then the oxygen in her nose on top of that then the mask on top of that well that leaves little room for her nose in the mask..so instead of breathing through her nose and actually using the mask Avery breathed through her mouth the whole time and would wait for her spit to pile up in the back of her throat and wait until she was really gasping for air and then panic..and would shoot straight up and whip that mask off so she could catch her breath! Well finally after I had had enough I asked for a face mask instead of this and well of course they couldn’t find one..so then they brought a little bigger mask in then what she was wearing in the picture..and it worked barely but it worked..bc at first it leaked way to muc h so we had to cinch that so tight to her head so it wouldn’t leak..She made it up to a five on the machine. They sent us home with the mask so we could desensitize her but I pulled the mask out and she took of running the other way..so I have a feeling that it ruined her..she did like it well kind of until she started struggling to breath with it on…So we will wait until the dr calls and then we go and see the dr and then the home health nurse comes to our home and will set up the CPAP machine for us..Right now well we are just enjoying our sleep bc I see a lot of sleepless nights in my future..oh hum!!! 


Last week we other also all got hit with the stomach bug once again..Instead though it was both babies and Avery who had it..whew that was very tirining I realized I needed a clone of me..I have come to a realization that the hardest part of having twins is when they are both sick and puking and just want mom..they weren't happy that the other one wanted mom too!!!  I also had Avery who just wanted to be-baugh (rock a bye) with her mom too. So they all learned to share my lap and I was just glued to the rocking chair for at least 24 hrs..unless I had to get up to clean up puke or change a diarrhea diaper..its amazing how fast you can go through diapers when you have to babies with diarrhea  Jared then got it too and of course he was on the couch near death as he would put it!!  Men always think they are near death when they are sick..but us moms well we still have to some how manage to take care of the house/kids/ and take care of ourselves while dying walking around I guess..haha!!
We have also hit a major milestone here..my bank account is getting richer as I type this..My babies are done with formula..man when you have two of them on formula you go through that stuff fast and its so so expensive!!!  Oh yeah un top of the two sick babies they were also teething they BOTH got two new teeth and are working on two more…
We also went and rechecked her eyes..There is a little bit of some turning in one eye and we are going to keep a close eye on it and recheck it in six months..I thought for sure she had some more vision problems just bc of some of the stuff she was doing…like being really really close to the paper when she was coloring or trying to write or having her nose right in front of the tv when she is watching…or feeling with her feet while she goes down the stairs instead of looking but apparently the dr said that that part was ok..not sure if I really him or not . But I will just keep a really close eye on it and get a second opinion if I have to..bc with all the run around I been through with  drs.. I have learned that mothers intuition is what I go with not what the dr. says!!!
And finally to end our exciting week ..I spent last night in the ER with Avery. These pictures were all taken with my phone so they aren't the greatest at all…


Destiny was carrying her down the stairs and they fell the last couple of stairs..and  I went to go stand her up and she wouldn’t walk or put weight so at first I thought it was something her ankle bc that’s what looked a little swollen..well after I got to the ER  I looked a little closer to see her shin or tibia bone close to her ankle really swollen..If you look in the picture pretty much where you see the faint marker line{grin} on her left leg..that is where she ended up breaking it… You cant really see the swollenness or anything..

Starting to cast her up….

She couldn’t stop touching it..it was sticky..and she kept signing yellow….The dr would put one roll on her and then she would sign more while he was doing another roll and then he did one more roll and she signed more one more time..she was really good and cooperated so well

She had her little  froggy legs all out and relaxed and then she raises her cast leg way out and up by her ear just a chillin   It looked so uncomfortable!! She even got all the attention from the nurses bc they all had to come in and check it out..She loved all the attention of course My little social bug!!!

She is realizing that its very heavy and its not coming off..and she don’t like it

We are still having a pretty rough day today…She keeps touching it or when she moves it says owie with a little bit of a cry to her..enough to break this moms heart!!!!  I feel so bad for her..

She don’t really like to look at it..I asked her “Where’s your owie?” and this is what I got…. We just cover her up and then she forgets about it..well kind of for brief seconds

Avery's EI came this morning and Avery wanted to wear her sunglasses and was being a hoot with them…she was going to go and give her some kisses and says “ewie” and then backs up…HAHA!!!!

We go back next week to the orthopedic dr for her leg and we also go back to the sleep dr next week too..

Did you make it to the end with me??? Whew now you can see while I'm exhausted;~) I have to say sometimes I wish I would just have to deal with the diagnosis of Down Syndrome and not all the other health crap  stuff that goes with it..I can deal with Avery having  Down Syndrome not a problem…but all the other health stuff gets to be too much sometimes!!!! I believe that is one of the things is holding us back from adopting another one..For the last two years we have prayed and prayed about adopting another little girl with down syndrome.  If I get exhausted with all of Avery's medical problems sometimes I cant even imagine what it would be like with two and both having all the medical problems but in the mean time we will just continue to pray about it and see what God has in our future!!