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!! 

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..

Avery update

It has been a really long time since I have did an update on Avery so I decided it was time for one:)  First off she has pretty much healed from her accident..I don't really ever see it bothering her anymore..so that’s good!!!:) The whole school issue that i was having well I decided to just do the speech therapy this year and really just work with her to get her ready for school next year..So she is now getting speech twice a week once in home and then the other I take her to the school for an hour. Both the speech therapist have talked to each other and are both on the same page so that is really nice…and I have seen a bigger difference since she has started both..she has been in full swing for about a month now. She loves the school the speech therapist said that every time they walk by the lunch room she just starts signing  eat as fast as she can..haha!!!! Also they had her tested at the end of August its a psycho educational evaluation report and she actually did really good..she didn't really want to cooperate with the people that were giving her the test so i was figuring her numbers were going to be really low..She didn't want to point to pictures for them which i know she can point to objects like if she was shown to cards a picture of a doll and a picture of a ball and was asked to point to the ball..she wouldnt do it..Little stinker..back to the whole she will only do it if SHE wants too!! She's my little spitfire that is for sure!!   So anyways her results were verbal IQ 58 (out of 100) performance IQ 57 (out of 100) she wouldn't do anything with the blocks which she can stack many and copy patterns but she just wouldn't do it or do anything with puzzles which she usually does awesome at..Full scale IQ 50 (out of 100) which put her at a 75 for standard score which age equivalent is 2 yrs 10 months..Her adaptive behavior puts her at 72 which is borderline..3rd percentile..I'm hoping that next year when it comes time to testing again that she will do much better bc she will know the speech therapist in there bc she will have been with her all year..
Avery still is continuing OT too at home..once a week.. We are focusing on getting her ready for school..she is doing really well. She has the pincher grasp down which is really good and we have been working on scissors using the loop scissors..she doesn't do well with the regular ones at all so I ordered her some loop ones and does a lot better with them..

They are working on other things too that she needs help on too..but so far the in home OT is going really good for us!! I'm pretty pleased!
Avery has had a check up with her ENT dr this month too..and we are repeating the sleep study tonight actually to see if she still has her sleep apnea. We took her tonsils out in hopes that it would help with the sleep apnea so we are praying that it worked bc I really don't want to monkey with a cpap machine every night. bc if she still has it then that is what its going to be:(  So we will see..I'm not really looking forward to the sleep study the last one I didn't get any sleep at all but Im just thankful that the girls don’t have school tomorrow so I don't have to deal with all of that in the morning..   Just the thought of someone watching me while I sleep well how is anyone suppose to sleep in those conditions..hehe!!!  Ill keep you all posted when I know something:) 
Avery also went back to Dr. Dy-Go the special needs Dr./nutritionist.. and she figured she was doing pretty good..but might be slowly approaching the overweight side on the chart..Do I think Avery is overweight??? NO  but its just something to keep an eye on..so she doesn't get to that point bc its easier to manage now then when she gets to be overweight!!!  Dr Dy-Go has been really awesome to us..and I was really sad to hear that they might be cutting her funds and her program bc there is no funds..just one more thing to cut from us!!  She has helped us out a lot and I hope that they can get it figured out so she dont have to quit helping so many families!!! 
Avery is still now where close to potty training:(  Insert a BIG sad face!!!! But we will keep trying!!!  She is signing so much more..I would say that she signs at least 50 –75 signs..She is picking up more and more everyday..she is really good at that..just the other day she was sitting at the counter and her signing times DVD was playing in the living room and they were going over the letters..and she just started randomingly doing the letters and she was right on all of them..she didn't do them all but the ones that she did do I was so shocked..we have been working on counting too and she is doing really well with that too..she tries to copy you..we count every time we walk up and down the stairs.. I also made her a picture book this past weekend (Vistaprint had 4x6 books for free up to 20 pages) so  I took advantage of that;)  and here are a few samples of what I did..It should help with her speech..she loves to look at books so I figured why not make her a book of familiar things to get her to verbally say them..Anyways it was alot of fun so  I think I see lots more picture books in my future..I want to do a ABC one and 123 at least..so we will see!!!
 


I will stop!!!  I know you get the picture right:)) 
I think that pretty much sums it up..lol!!!!  Writing it all out like this helps me remember too.. I use this as my journal too;) so if I need to look back on something I can too!!!   Wish me luck at the sleep study tonight..

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;)