Quick Update

Just a quick update…I know I have not been around lately…on posting or on the blogs that I read frequently…but I ve been trying to play catch up for awhile now since getting back from our quick trip to SD..and then getting ready for Thanksgiving..and then I also have had some medical things going on with me..

I do want to share with you all that Avery has not had her oncology dr appointment yet. She will have it on Thursday this week. Will keep you all updated on that when I know something..otherwise I just keep taking pictures of flare ups..we have had a couple more since the first one..and then they fade away again. strange…very strange..Very interested to see what the doctor has to say about it.

As far as me..well I am still trying to figure out my migraines and playing with different medicines and seeing what works and what doesn’t..so far we are still on the what doesn’t work end..haven't really found anything that really works well.. I also have had a few new symptoms come up that have me questioning that something more serious might be going on..so I am demanding my neurologist dr to order me a CT scan..I have also been diagnosed with Meniere's Disease so I am trying to figure that out and how to relieve the symptoms of that naturally which my ENT dr wants to try for a month… I go back in a month to him and see what he says..He did order a hearing test and also a movement test and I failed the movement test in my right ear..and in my left ear I have apparently lost some hearing in my left ear. I don’t know how much though. I don’t know much more then that..I haven’t had time to research much on it.

We had a great Thanksgiving with Jared’s family. Then us girls decided to go out Thursday night to Toys R Us..We only did one store then when we got home we went home and to bed…while the guys decided to embark on Black Friday shopping..and even went to Charlotte..but the funny thing..they came home with NOTHING>.they got tired of waiting in line and put it back..hahaha! 

I truly hope all of my family and friends had a very happy and blessed Thanksgiving..

I could list out everything that I am thankful..but truly I am thankful for everything. I don’t take anything for granted. WE have had our share of health problems but it could be worse..and for that I am thankful.and I have to remind myself that often.. We have so much to be thankful..God is so good!!  Thanks be to God!

We are cast FREE!!!!!!!!!!!!

Wooohooo!!!  We are cast free!!!  The x-rays looked great and dr said take it off…so we happily took it off…Avery was super excited to get it off..she kept saying whoa…as she first started to walk..She will still have to sleep in it for another month..but I can handle that and so can she..This is pretty much behind us and we couldn’t be happier..We do have to go back in six months to take the screws out of the side we just did..but dr said it is a very simple procedure and is an out patient procedure. Thanks be to God for carrying us through this last year.

Here is a video of her walking out of the dr.s office..

Afterwards I took her out for a celebration lunch..she chose Chick-fil-A…

We also got a knee brace that we have to start wearing..She pops her knees out of place..and we are going to try to brace it..We cant do ligament surgery for the same reason why we couldn’t do it with her hips…it will more then likely not work and over time just go back to the same way…other option is bone structural surgery but we cant do that until she is around 10 or 11 he said..so for now we have to wait..so while we wait we figured we would try bracing it..Bracing it might work bc its suppose to keep it in place so it cant slide out..I am thinking if we wear the brace for awhile maybe she will get out of the habit of doing it so we don’t have to do any surgery..For the most part it doesn’t cause her any pain but there are times where she pops it out and cant get it back in and says owe..so then it does hurt her.. so she will wear one brace on each knee for most of the day...right now though I'm giving her a break from everything for at least a week…I think she deserves that!!

Happy Veterans Day

Thank you to all who have served and are serving in the military!! You have given us all our freedom!!  May God bless you all!!!

On Friday we went to our local Veterans Day parade…..It was short but simple…Honoring our Veterans…

Destiny and Brielle were on there school float..the excel students got to go on a field trip and be in the parade..except they were on the other side of the float so you cant see them…but as they were going by…all of the students say “Hi Avery!!!” and Avery’s face just lights up…

Next up were the Shriner Cars..or Red Neck  Hillbilly cars…

In the middle of the parade they all cruise up to the flag that was hanging in the middle of the street by the fire department..and all stop there cars and get out (one car I seen a guy put a block of wood behind his car..so it wouldn’t go rolling I guess..LOL!!!) Once they are all up there they salute the flag and apuse for a moment and then get back in there cars..and proceed with the parade.

Can you see the hillbilly port a john on the side of the truck….LOL!!!!

Sky Top Orchard

Last weekend we took our annual trip up to Sky Top Orchard…and it was pretty late in the season when we went up but it worked out good bc then there was not a lot of people there which equals no line for the apple cider donuts..them alone are worth the drive up there for us.. one other bad thing about waiting so late to go up there…not a lot of options for apples..most of them were off the trees already and if not they were all picked over.




Yes I know im missing a child….one of the twins is standing in front of the other ones face



She amazes me…she does not care that she had a cast one..she still wants to do everything..it def does not limit her..she was swinging and climbing all over everything so she could slide..she had a little trouble trying to sit down on the slide…she would just plop down at the top of the slide..she didn’t care..


Jianna

Jayla

Avery’s medical update

 

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

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

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

 

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

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

Count down is on!!!!

FOUR more days to go until we are cast free!!!!!! (IF the x-rays look good!) We I can not wait until this Is all behind us!!! Tuesday is the big day!!!

I realized I never posted a video of Avery walking around with her cast on..she started walking around with it on about one month and one week after her surgery…you would never know she had a spica cast on if you seen her walking..you might wonder why she is humped over a little but she doesn’t walk slow..she will even try to run in it.silly girl.

I will be ready to wear regular clothes on her..She can only wear skirts and dresses..So far it has worked out weather wise…it still is pretty nice here so we haven't had to worry about her legs getting cold..but when we went up to SD she did get cold..we wore leg warmers on her a few times..the ones I made last time..Where I took  long socks and cut off the toe and heel part and sewed the sock back together a little bit and you have leg warmers…soo easy and soo cute..

 

Carving Pumpkins

We had to carve our pumpkins late this year bc of our trip to SD..so this past weekend we finally did them..

Avery enjoyed using a spoon to scoop all the seeds out…we save the seeds so we can make pumpkin seeds..

Destiny has no problem cleaning hers out either..

Brielle- not so much..she really really doesn’t like to clean out her pumpkin..I told Avery to put her hand in there and clean it out..and she had a lot of fun doing that..

The twins were not impressed..took one look at it and said nope..im not touching that..

We ended up painting the twins pumpkins…much easier;)

Brielle decided she wanted to paint her pumpkin also…

Destiny carved hers all by herself.and after wards deciding she wanted to paint it too..so her pumpkin got a little bit of both..

Avery was so into carving her pumpkin this year..after we cleaned it out she says..face now..While she was drawing out her face she would say eye..another eye..nose.and mouth..and when it was all done. she kept just looking at it..and could tell she was happy about it…

That’s a wrap until next year…