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.

Avery update

Avery has had quite the exciting life lately…
We went for her check up for her hip the other day and I am sooo happy to report that Avery no longer has to wear her cast at night anymore. WOOOHOOO!!!  So we are completely done with the cast. Soo happy. Everything from a clinical stand point looks great. Her xrays look awesome he said and he was amazed at how well she was doing since it has only been three months since having such a major surgery. Now to think about scheduling her surgery for her other side. Oh hmmmm..I'm not ready to go there but so far this surgery was a success. She isn't in pain and she no longer pops her hip. It stays in place. So I know that we have to do the other side. and soon.
THe best thing that has come out of the surgery besides fixing her hip of course is she is now night trained. She has only peed the bed once since her surgery..it was the easist thing ever bc i didnt have to do a thing.she just did it on her own..lol! I noticed her not peeing when she was sleeping while we were in the hospital and i wondered if she would stay that way when we got home. But i just made sure to make her go to the bathroom before she went to bed and she of course had them big diapers on over her cast so it wasnt a big deal if she did go to the bathroom but she woke up dry every time..and so since the cast has come off and we dont need to wear them big diapers..and she hasnt gone to the bathroom while sleeping but once i dont put pull ups on her anymore..she gets to wear her undies to bed...and i dont even wake her up to go to the bathroom before i go to bed or anytime in the middle of the night..she just holds it bc she doesnt get up to go either.I am soooo happy that she is night trained..i really thought we were going to be in pull ups for a couple of years at least from all the stories that i heard..but just shows that you just never know..:)
We had a lunch date just her and I while we waited for her other dr appointment in the afternoon. Which everything turned out great..it was her GI appointment and he said to just keep what we are doing with the fruit-eze for her constipation.
 
So we all decided to go to Academy the other day for a quick trip and it turned into a nightmare. Avery decided it would be a good idea to wander off from us. So after frantically going down the isles that were by where we were and still not being able to find her I went to the front of the store to tell them.  Code ADAM. where they lock down the store so no one can go out. and they put out her description over the intercom. My mind of course thought of every bad possible solution. and got myself pretty worked up. Avery doesn’t respond to her name..so you cant call out Avery..and expect her to say what..so that didn’t help us any. and Avery will go to ANYONE without a fuss. not even thinking anything. so another thing that didn't help us any. So after what seemed like eternity I finally hear the lady at the front of the store tell me they found her. They found her at the other side of the store..far far away from where we were. and she comes around the corner with the associate just smiling away..and she had no idea how happy I was to see hear smiling face again. She had no idea but as soon as she saw me she did have an idea..she read my reaction and picked right up on it.  She knew she was in trouble..BIG TROUBLE! I hope that is the last time I ever have to go through that. People still amaze me..I cant stand most of them. When I went up front running and telling them that I lost my daughter..you should of seen the looks from everyone…like I was the worst mom in the world and how could I let that happen..and not one of them offered to help look for her. they just continued to give me a look. I'm sorry but if I heard someone lost there child I would not sit there and just stare at them..I would start looking for their child but I guess that is just me and I might be the only one..It can happen to ANYONE. In a second they are gone. It doesn’t make you a horrible mom if it does happen to you. Just praising God that we found her and she is safe.
Avery’s talking has seemed to taken off. Just the other night on the boat Avery was talking non stop and we had to ask her to be quiet for awhile. NEVER did I think that day would ever come. EVER. I have waited five and half years for her to talk. That is a long time to hear her talk and make sense..most of it was yelling at the babies..She had yelled Baby at Jianna..so Jianna says “I not baby..I Gi-gi.” Lol!  Just the other day she asked me .."”Mom, where ketchup go?” after she couldn’t find it.. I had tears. That is a HUGE moment. First because she asked a question using where…so that tells me that she is starting to understand the w questions that we have been working so hard with her. second she said a four sentence word non- prompted. Will she do it tomorrow???? Probably not..She isn't consistent with it yet. But right now I am enjoying that little big moment to us right now.
I love her..I can not tell you enough how much she has brought to my life..I find myself just looking at her and Thanking God for giving me such a beautiful blessing. Her giggle is soo stinking contagious. Just today we were hanging by the pool and she was sooo giggly. and pretty soon everyone was all giggles too..
Here are a few pictures of Avery just chillin by the pool today.

Randomness

This post is going to be all over..just to warn u It pretty much sums up my week..
We went to Avery GI dr on Monday and all is still good..just keep giving her fruit-eze for constipation issues..and maybe double up on it a week before her surgery so things are flowing good for her..and maybe keep her doubled up on it for awhile so she don’t get constipated with the cast on!!  That is my big worry..her getting so constipated! This is what happens when they make us wait so long in the dr office!!  Im surprised they don’t get us in and out as fast as possible as loud as we are!!!
Avery in the table!!

Yeap you guessed it..you knew that was coming didn’t you..except what u cant see is I had Avery pulling her in and the other baby pulling her out which ended in a screaming fit!!!

Avery being sooo cute and silly!!!:)

Playing ring around the rosies still trying to pass time..

On Tuesday..I find my babies like this!!!

Yeap both in the dryer just giggling away!!!! and a pile of clean clothes in front of the dryer that they so nicely took out for me!!
On Wednesday I got this in the mail….

Don’t know what it is????:) Well it is a GoGo girl…It’s what they call a female funnel. {So when Brielle came home from school she seen it on the counter and asked what's this??? A funnel to frost cupcakes with??? HILARIOUS!!!! I then explained what I was going to use it for and she thought it was pretty ewwww!!! So I tried using it with Avery to get her used to it so she would be a pro at it by the time she had surgery..Well guess who wont use it??!!! Yeap Avery will have NOTHING.to.do.with.it..I tried using it on her and she wouldn’t go and so then I took it off and right away she starts peeing..That girl is soooo stubborn!!!  So now I don’t know what I'm going to do….I suppose I am going to have to get everything under the sun and see which one she will use..so I'm going to have to find a female urinal and a bed toilet {is that what they call them…lol!!!}
These three are no help when it comes to folding clothes..they are masters at playing around me and knocking all my piles over!!

On Thursday I made a few projects..I had to find something to hold my kids bookbags up bc they were just throwing them in the closet and shutting the door no.matter.what.was.in.the.way! And it was wrecking our door..So I came up with these. I really like them but Jared had to ruin it when he told me where I had to hang them so they would be in a stud..and how he was going to screw them in…urghh!! 

I also had to fix these jars. I had made these apothecary jars before Christmas and had put fake snow and ornaments in them..but they were VERY crooked..I had forgot to put the wooden circle on the bottom of the jars so I picked them up at Hobby Lobby when I was picking up my materials for the book bag hooks. {All materials I got at hobby lobby for both crafts} Now to find something to go into them now..maybe something to do with Valentines Day????!!! 

While I was making these I couldn’t find Jayla for awhile and I realized that so I was yelling her name all over the house and all of a sudden she comes out of my room with this look on her face like she had been caught red handed!!! So I was scared to go into my room and see what she had gotten into but I went in there and didn’t find anything so I was puzzled..Well fast forward to the night when Brielle is asking for vaseline for her lips I go into my bathroom closet to get the vaseline and what do I find????!!!

She had taken all of my tampons out of there wrappers and even took some of my diapers {that’s what they call them} out of there wrappers so I had a nice sticky mess!!!!!!  Her cup was in the closet too so I know she did it!!!!!
All week I have been on a mission to organize and I have got a lot done if I do say so myself..I have gotten our Coat closet, two junk closets by the front door done, all bathrooms done, and the babies room done! We have also switched the toy room and the office around so I have done the toy room too!!  Still have the office to go through..and well the craft room needs serious help!!!  Right now there is a pile of J.U.N.K. in there that I don’t want anymore and it all needs to get cleaned up and organized in the next couple of weeks before my inlaws get here bc that is there bedroom!!  Ill show u a picture but no judging bc it’s a work in process right??!!! At least I have a timeline to get it done by bc it would probably otherwise sit there for awhile!!

Well that pretty much sums up my week!!! Whew…what a week!! How was your guys week???!! Hope it was better then mine!!! {All of these pictures were taken on my phone so the quality might not be that great}

Avery update

Avery has been going to school everyday now and I go pick her up at 1030..it was suppose to be 1045 but they go to lunch then and Avery was getting mad bc she couldn’t go eat..go figure:) I never have a problem getting her to eat!!! So it actually has been going pretty good for the most part..the first part of the week wasn’t looking so good but then she had a good ending to the week.. I think we are getting there but she had some concerns when they go on there field trip that they wouldn’t be able to get her to go where they needed her too and maybe just take off so  I guess I get to go to Strawberry Hill to keep her  in line… {now to find someone to watch the twins for a full day..that is going to be hard!!!}  They have book buddies on Friday where a second grade class comes in and reads to them and it turned out that they were paired with Brielle’s class so Brielle gets to be her book buddy!!  She came home the other day and tried to read me her “A” book…it was so cute..they do book for each letter…The teacher told me that she went to the library and rented some signing times videos so she is learning some signs bc she said Avery is constantly doing signs but she has no idea what she is doing..We went to the back to school bbq last week and while we were walking around playing some of the games a girl in her class came up to her and says..hi Avery and walks over to her and gives her a hug…It made me smile..and I knew that she would be ok in school this year..bc if that little girl stopped to do what she was doing to come say hi to Avery well that means something!!! 
Avery FINALLY got into the GI doctor..we have been waiting for this appointment since last may when we got dud her routine blood work and it came back positive or high number for Celiac disease..So when we were there he said that he wanted to re do her blood work and do more in depth blood work..about five different blood tests and if any of them came back elevated then we would go ahead and do the scope to test her small intestine so I said that was ok…I wasn’t looking forward to getting her blood work done though bc the last time it took at least five people to hold her down and even then it took at least an hour to get a couple tubes of blood..it was so miserable..She was crying and moving and blowing her veins..I walked out of there feeling like the worst mother ever..that I would make her go through that..well anyways we got her blood work done in the same building as the doctor and all I can say is WOW!!!!!! It only took two people to get her blood and they had to get more tubes and they didn’t even blow one vein and she didn’t even cry..I couldn’t believe it…I will definitely go back there when we need blood work done!!!!  So after about a week the dr called back to let me know the results and not one of them were elevated all of them looked good…so apparently we got a false positive which is common in the one test that they run I guess..So she doesn’t have Celiacs..and we don’t have to worry about her eating gluten every meal…Praise God!!!  I knew that I could do it if I had to but knowing that we don’t have well I am pretty happy!!!  We did it for a couple of weeks trial run and it was sooo hard!!!  I really commended all them parents out there that have to deal with it every meal and every day!!!   We also talked about getting her constipation under control while we were at the dr bc I know she has a problem with that…he suggested Fruiteze…it is an all natural remedy.. a blend of dried prunes, raisins, dates and prune juice..it comes in a big container and u just eat a couple of teaspoons for kids and couple of tablespoons for adults..it actually tastes good..but of course Avery has problems with the consistency/texture of some foods and she didn’t like eating this plain..so I mix some up with her juice and then she drinks from a straw so she can get all the good stuff at the bottom of the cup..and she does fine taking it like that..you can also spread it on toast or something too bc its like jam consistency. So far it is working really good..I would totally recommend it to anyone that deals with constipation on a regular basis…You can get it online..just google it…We used to use Miralax everyday but that didn’t work with us..u really have to have to correct dose right down to a T or it was the opposite..and sometimes she would need more or less and it was a big headache and mess most of the time!!!! 
Just a quick funny story that Avery did the other day…She comes running into the house completely naked and her hair was wet and she is running for the bathroom..I'm thinking what in the world..then I can hear the hose is one..and it clicked she went yucks in her pants and sprayed her self off with the hose before she came in the house.. I was scared to go outside for the fear of the unknown on my sidewalk…haha!!  But what a good girl for cleaning herself off!!!:) 
Well I hope everyone has a good day!!! 

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!!!)