Updates

Sorry it took so long to update on Avery’s dr appointment..

We spent all day at the oncology appointment..and honestly it is somewhere I don’t wish to return to anytime soon..I had to go to the cancer center here in Greenville for the appointment..and as we were walking back into our room we seen kids siting in chairs getting treatments..I just wanted to go over there and give them all a hug..and I kept thinking is this going to us pretty soon???? Please God no..I don’t want to be that family..I don’t want my daughter to suffer anymore..but if God decides that is a storm we must walk through we will do it and we will do it with him as our guide.. and trusting in his perfect plan.

We had to do paperwork..then we had to get blood work done..which they were awesome…but then im sure they do pediatric blood work A LOT..just guessing…and then we went upstairs..and waited for ever..the good thins is the waiting room is all set up like something you have never seen before..kids spend a lot of time there playing and waiting..and they know how to accommodate them…then we seen the nurse and then we had to see a resident..can I just say that I know they have to train but I really really hate going through the hoops..I don’t want to beat around the bush..I don’t want to have to explain everything more then once..but anyways so I explained everything to this resident dr for ever and he says well I think its scabies…what?? im sorry mister but I don’t think so..but ok whatever you say…so after he said that I got very distant and kept everything short…then the dr came in and said that ALL of her blood work came back normal..he was expecting certain things to have spiked or dropped numbers but they were all normal..so he knows no explanation for her petechiae  rash. She still has it..but is just not as dark as it was..So he said that he isnt worried right now about it and he has no explanation right now either why she has it. But since he isnt worried I shouldn’t be either..He told me the next time it gets dark again to bring her in that day…and then she will probably get more blood work done then..to see if anything is elevated or what her numbers are…

So right now we are relieved we didn’t hear the cancer word at all..and we can ease our minds right now….Thanks be to God for the good news!!!

Other dr appt updates..

Eye dr- Patching is working..he said he seen improvement..and so have I so we will continue to patch for one hour a day.

GI dr- Everything is looking good…in fact he said we can even just go once a year..we will continue the fruit-eze or even fiber bears for her constipation and if we see any problems we can go back sooner if we need to..

Special Needs dr/nutritionist-  She is doing AWESOME!!!  and the dr is VERY impressed with where she is as far has her weight and height…its so hard to believe that at one point in her life she had such a hard time thriving and gaining weight..you would never know that by looking at her now..but yes at 10 months the girl only weighed 10lbs. she was all skeletal…We have come a LONG way!!!

We go to sleep dr on Friday and then on Tuesday we go to ortho dr..so will have more updates then..I know the sleep dr wanted to perform another sleep study which I HATE but hopefully it will tell us that her sleep apnea just miraculously disappeared. 

Well that is it on Miss Avery for now…

As far as me…blood work all came back normal..waiting on the hospital to call back with date for my brain MRI.

Jared- he will be quitting his job that he has worked at for the last 11-12 years. Its going to be a new chapter for us. He will be just doing his own thing..he has been doing his full time job plus getting a business started for the last five years..and it has just gotten to be too much so he will just be working for himself now but its going to be a BIG change for us…especially health insurances…

Destiny- well ill just say this..she is 11 going on 18 I swear..if anyone has ANY advice on dealing with a ticking time bomb let me know…that’s all im going to say about that..bc I know they read this and I don’t want to say any more.

Twins- they keep me on my toes…still not potty trained..work in progress..

Brielle- she got terrific kid..and well that’s about it on her..

I have many bday posts to catch up on..the twins turned three at the end of december..Brielle turned 9 and Destiny turned 11.

Well that just caught everyone up in a nut shell of half of what's been going on.the other stuff well I would rather keep that to myself...Sorry for the lack of posts but its been kind of rough lately…not how I wanted to start out 2013. Trying to stay positive that things are going to start looking up.

31 for 21: Day 12 Eye Patch

Well hello patch!!!!  Looky at what we have to start wearing now..Avery has to patch her good eye for an hour everyday for three months.

Why you ask???  Her left eye has been turning in for quite some time now and I finally got the eye dr to do something. I have noticed it getting worse and not any better. Her vision seems to be right in the middle and good so he don’t feel like she needs glasses. He said he was surprised that she wasn’t either farsighted or nearsighted bc most times you see that with the eye turning in. While patching the good eye and not letting any light in it is suppose to strength the bad eye and force it use it and send some signal to the brain that she needs to use that eye..

We will go back in three months and check it again and see if it has helped any. He did mention an eye muscle surgery that might need to be done…I don’t want any more surgeries…I am sooo done with surgeries…Can she just get a break..please!!!!!!!!!! Praying that this will help and we can stay clear of any more surgeries!!!!

31 for 21: Day 7 Brushfield Spots

You may notice that many people with Down syndrome have beautiful eyes... some even have "stars" in their eyes. These are called "Brushfield Spots". I love, LOVE Avery's beautiful blue eyes!

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!! 

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!!

A little of what’s been going on

We have had a busy couple of weeks seems like it anyway…Avery went back to the special needs dr. and nutritionist..I think it was a pretty good visit..We decided that it was time to re check her swallow study because it had been a year since her last one and she has not been completely cleared so she will continue to have these until then I believe..I was not looking forward to it bc after the last one she was not very cooperative. The last one showed penetration from drinking from thin straws and curly ones..We had wanted to start a straw therapy on her at this time last year but couldn't do it bc she couldn't drink from them kinds of straws and that is what it involved. So we didn't do it. but everything else looked ok then..Well when we were back at the dr I asked some questions about Avery’s eating habits bc I figured “You know what I need to know and we should probably take a caution approach to the whole weight gain and watching what she eats..Its my responsibility as her Mom to teach her to eat the right stuff and control her portions. If we let Avery eat as much as she wants to  she would eat a whole pot of spaghetti..No lie there!!!! She will finish her plate and then sign more as fast as she can so I will give her a little bit more and then she will eat that and sign more again..and so on and so on..until finally I know that she has had enough for sure bc she has eaten way more then me..lol.. So I need to know how much she should be eating at meal time to prevent having ot do the whole weight loss at a later time..Last summer I was in SD at the water park and i seen an older woman with DS and she was severely over weight..I just don't want to go there if we don't have to!!!  I know it is really common bc they do have a hard time stopping and controlling the need to stop to eat so if I know that they have this problem wouldn't I want to help correct it when she is little?? Probably right??!!  I'm not saying that I'm going to go to extremes and count calories or anything like that..I'm just going to be watching her portion control and help her learn to stop when she is full..I'm glad that I asked bc it was very interesting and I learned a lot but then I already  knew some too..  So anyways on to the swallow study..We had the swallow study scheduled for Thursday at some other place that I have never gone to before and i had even tried to get it changed while I was in the dr office but the lady tried telling me that they don't do it at the hospital anymore unless you are admitted..I'm thinking this is very strange but whatever I guess..So I get up early to go to the appointment and find someone to watch my babies and bring Avery hungry and thirsty ( I have found that it works better for me to do this it isn't necessary  but she will cooperate better if i do this) to find out that nope they don't a modified swallow study and that I need to go to the hospital to get it done..Urrrghhh anger management!!!!!!!!!!!  I knew it and tried telling the lady that but nope what do I know right???!!!!!  and of course they only do it on Fridays  so on Friday I had to do it all over again…So anyways we get there and Laura (the speech therapist that helps with the swallow study is so good and awesome I must say!!! I just love her and she really does know what she is doing!!!!!  Anyways after several drinks form different cups and eating different foods we have come to find out that the cup that Avery drinks from everyday and all the time is the one cup that she penetrated on..WHAT???!!!!  Are you kidding me???  I couldn't believe it..this whole time I'm giving her a cup that is hurting her..The therapist was surprised that she has not had pneumonia. She gets the liquid way to fast from it..If some of you are all wondering what kind of cup it was its the kind that has no valve and its controlled by them..well no wonder she would drink the entire cup in a minute huh???!!! Duh!!! She did do find from a straw and of course I forgot the curly straw so we couldn't test that but the therapist did end up putting two straws together and she said it was basically the same and she did fine with that..I had brought another sippy cup too the first years one and she did fine with that one too..so we will use that one or use a straw I guess..but the therapist was telling me about a cup that really sparked my interest… its called a little sip cup…I guess it will only give you a half a tablespoon – one tablespoon of liquid at a time and then it stops..so this would really help with Avery drinking all of her cup right away.It helps with control flow..she also mentioned some straws that are awesome and control the flow of liquids but they are ridiculously expensive and like $50 for twelve straws and they aren't reusable ..I told you they were ridiculously expensive didn't I. I'm sorry but I do not have that kind of money just sitting around...I don't understand if you come up with a product that will benefit so many kids why make it so expensive that no one can afford it..duh??!!! .As far as her chewing went well she said that she could be chewing up her food a little more too before swallowing so we need to keep reminding her to chew chew chew..which we have been doing..she is really bad at meats..just something to keep working on…Its really weird watching them studies..all of a sudden you see this whole chunk of peach just slide down her throat and it makes you do a little wiggle bc you can just feel it sliding down your own throat..I just wanted to reach over and grab that little peach..haha!!!! I have seen her acid reflux on one of her swallow studies too..that was weird to first it goes down then it goes back up…lol!!!!  One thing that the speech therapist mentioned was that she works with an older patient that has DS and she seems to be alot like Avery when it comes to eating and drinking and she said that she has worked on “bite,bite, and then drink..” and she kept saying that it wasn't learned overnight but she is now doing it and has benefited so much from eating this way..so maybe we will try to work on that..it will take work I know that.. what doesn't take work? Right!! :)
They called me back with a date for the hospital stay for the cpap machine..Guess what day it is…December 23..Lovely huh??? I know that’s what i thought too..and that was the soonest time they had so I figured we better not change it or it will get bumped back to  February or something.  This whole sleep thing is kind of been a roller coaster. Im tired of everyone asking me how I'm even sleeping….And yes at first I thought how in the world am I going to sleep knowing that any time during the night Avery c0uld have a really bad episode and she could possibly not wake up…It really is just gut wrenching..and scares me to death.. but that's where I need to rely on my faith and savior to get me through this. bc I know I can do all things through Christ who strengthens me…only the Lord will get me through this bc I know I surely cant do it on my own!!!
“ Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made know to God: and the PEACE of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.”  Phil 4:6-7
I need to turn my worry and anxiety into prayer..so whenever I start to worry about it I'm just going to stop and pray and God will be with me..and get me through it..God is in control and I know that…so God’s peace is going to guard my heart against my anxiety..but I'm asking that you please say a pray for me bc its not easy!!!
They are starting a new program with Avery in therapy..its called Handwriting with no tears..it looks really interesting and I really need ot research it more but I just haven't had time yet so will look into it more and get back with you..but it looks like it will really focus on getting her ready for school and that is a main goal right now..she has only had a couple of sessions with it and they have clever cute songs that go with it all too..but one thing that i thought was a really good idea was put a smile face up in the corner os they know that is the top and that is where they start..how clever is that..??? anyways they did a letter turkey with Avery and had her pick a certain letter out of a couple and she got most of them right..I was so proud..she is really starting to learn her letters I think…:~)  Way to go Signing Times!!! haha!!!  Just wish the dvds weren't so expensive..bc she really does like them and watches them all the time and has learned so much form them..i guess we might have to get a couple more for Christmas and her birthday is coming up too…once again they have to market up the price of something that teaches so many kids and is such a good valuable learning tool..I have really noticed a big difference sense we have added the second speech therapy session at the school. Way more imitating and trying to say two words together..
I have noticed Avery’s one eye turning in a little bit so I think I need to make an eye appointment and get it checked out..quite frankly I'm getting a little tired off all this medical stuff..sometimes it gets to be to much and I just wish there wasn't so much many  medical problems with down syndrome..

Sorry this was so long with no pictures..i was going to try to post pictures but it has been a long sick week/weekend at our house..hope the stomach bug hasn't gotten any one else!!!! 

3 yr Check Ups!!

This month has been crazy with doctor check ups for Avery.  We went to her regular pediatrician, hearing check up, eyes check up, and the special needs/nutritionist doctor.  Next week its the ENT.  Wow..its been crazy..She has to go to most of them every 6 months so they all fall in the same month I'm not sure why I do this to myself but I guess then its all over for another 6 months right;).
So as far as her hearing goes she is doing awesome!!!  Her eyes are still doing great but we have went down a little there..he said that she was just on the border for nearsightness..but that you can stay there for a very long time too so i guess we will just have to keep an eye on it..For her regular doctor just very basic just gave me orders for all of her blood work…complete cbc (white blood count), thyroid, Celiac disease, diabetes, and i think one other thing and then that might be all;). Poor girl..I always hate doing all of the blood work I get all uptight and worried until I get the clear that everything is good..She now weighs 30lbs..cant believe that..we were once fighting to get her to gain so much weight do you guys all remember then..at ten months she as ten pounds...and now she is at 30lbs..so I brought up to him about doing a sleep study..I just think she might have sleep apnea a little..so we will see..he said to bring it up to the ENT doctor..so that is what ill do I guess..On to the special needs/nutritionist she was VERY thorough as she always is that’s why i like going to her..I had taken her of off her prevacid (for her acid reflux per her GI doctor)  and well after her still spitting up and her having mucus from her nose constantly, and maybe even her sleep problems  it all goes back to her acid reflux..so we are putting her back on prevacid for now..and she even put her on some allergy medicine bc after looking in her nose she said that it might look allergy/pollen related..well who wouldn't have problems with all the pollen we have been having..its HORRIBLE!!! So between the two we can hopefully knock the runny icky buggy nose all the time..I did notice it got worse after we took her off of prevacid but never put two and two together until now..she also has a razzle in her lungs that we cant get rid of either..lets see what else did she say..oh yes to watch her weight now;)  so in the beginning we were pushing extra calories and now we are watching calories..hehe!!  and to make sure she gets lots of good exercise..oh trust me she is getting exercise the girl never stops except when she sleeps!!!  She also told us to get a referral to a developmental pediatrics in Greenville..(I'm thinking are you kidding me I get to add another dr to my list) What for you ask???  To help tailor her education plans I guess..and since there is a 6 month waiting list then to go ahead and get the referral now;)  I don't even want to start to think about her going to school yet!!  I did have the school call me since she is three now and see if she was going to go to school..but I said no not yet..bc I dont want her going to school everyday right now..just a personal choice!!  But the special needs dr said that i could maybe get her into the school for the deaf and blind for a couple hours like maybe two to three times a week so we might look into that..why u ask?? well bc her speech is soooooooo delayed!!!!! 
So how is she doing in her therapies???  Well in physical she is doing awesome she isn't even getting physical therapy right now bc of lack of therapist..but I don't mind bc what she cant do she seems to find her own way of doing it..and Occupational therapy is still working with her to strengthen her trunk muscles..So for Occupational we are just working on getting her ready for school..writing, cutting, small pincher grasp things like that..and for Speech well basically just to get her to talk more..the girl hardly talks words at all.She babbles all day long but nothing that anyone can understand. She understands ALOT but cant verbally talk what she wants..so we have really been doing the sign language to help with the frustration and it is actually helping her talk too.. For instance…we were eating supper one night and she wanted ketchup but we didn't know what in the world she wanted and after about five minutes and a total break down we finally figured out that she wanted ketchup..so the next time her occupational therapist came i asked her what ketchup is( i knew she would know bc her husband is deaf) so the next time at supper when ketchup was involved..and she was wanting more..i signed ketchup and said ketchup at the same time…so what does miss Avery do..she signs ketchup and try's to say it at the same time..so it got her to say ketchup!!  yeah we have one word that we know:))  That girl is so quick to pick up signs too..she got a bunch of signing time dvds for her birthday (Signing times are dvds that are  very catchy and easy to learn signs geared at kids but VERY, VERY  expensive I might add) and she picked up on the signs for signing time so the girl comes to me and does signing time signs when she wants to watch it and actually try's to say it too..which is impressive bc it is two words together and that does not happen!!  After reading someone else’s blog I am going to be looking up and researching speech apraxia to see if that is what Avery has…hmmm..we will see what kind of rabbit trail it leads me on..


Well that was way to long!!!!  That pretty much much sums up what I've been up to lately..just helping the doctors take home that pay check!!!:) Here’s a short video of Avery doing signing times.  Don’t mind me either;)  She does do a couple of signs play (two hands shake with thumb and pinky out) , and time.. (where she is hitting her hand) Sorry that this is sideways I could not for the life of me figure out how to turn it around the right way!!  If anyone knows how please let me know!!! Thanks;)