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 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!! 

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!!!!