Brielle’s 9th Birthday

Brielle had her golden birthday this year..

Brielle is very much into American Girl dolls…and loves to do there hair..I found that cute hair chair at walmart..much cheaper then the american girl website..for the rest of her bday present she got money and she used everyone elses money that she got from her bday and bought a kindle fire. Best thing about it is that they can check library books out right from our house..soo good for my girls bc they are readers…we get books from the library and they are read in less then a week and are begging me to go back to the library…well know they can just go on there kindle and check any other one out that they want to and read it from there..win win situation 

For her supper she picked potato soup and cheezy bread…

 

This will probably be one of those bdays that she never forgets….her bday fell on a Sunday and we were going to have a big ole taco lunch with all of the family…but then on way to church got a text from SIL that they were coming bc they found lice…and so then after church was telling my other SIL that after church and turned out they had them too..and so then I checked my kids and found one a live one on Jayla..so off to the store we went.and on the way to the store Brielle is in the back just sobbing..I felt so bad for her…what a way to spend your bday..we tried to make up for it and let her pick where we could get take out to take home since we couldn’t go into any restaurant. She picked Mexican….and so we went home and had to clean like crazy and treat everyone..Couldn’t find anything else on anyone but wasn’t taking any chances..I am pretty sure that one jumped ship during church bc I did not find any other sign of anything..can I just tell you that I hate hate hate hate hate lice with a passion…..Is your head itching now??? LOL!!! Anyways want to know a helpful tip that will prevent you and your family from getting lice..Go to Sally Beauty supply store and get some Tea Tree Oil Shampoo and Conditioner and use it for all of winter!!!!!!! not just for a month..but all winter..I will be doing this EVERY.WINTER.FROM.NOW.ON. Just so I don’t have to go through dealing with lice again. Ugghhhh!!!!  Happy 9th Birthday Brielle..hope your day was great despite the lice

Girls Christmas Piano Recital

Trying to catch up on some posts that I am behind on 

Brielle’s first piano recital and she did great…

 

Surprise Visitor

So before Christmas my dad showed up in our driveway from SD and surprised us all….we were all very shocked...He wanted to personally deliver the girls Christmas presents. The last time Destiny, the twins, and I seen him was at my Grandpa’s funeral almost three years ago, and then the rest of the family well I cant even remember…Avery was probably a baby..

My dad made the girls all a doll cradle..with there names on it..and I actually still have mine that my dad made me….looks very similar to this..

It was a busy full packed weekend..He showed up on a Saturday morning..and we were having Brielle’s bday party later that day at the outdoor skating rink..and then Saturday night we went to Hollywild to see the Christmas lights..then Sunday the girls had there Christmas program at church..and Sunday night we just relaxed at home. ..all them posts will be following this..

Avery Reading

 I was planning on sharing this a while ago as i did on my fb page...but never got around to it..This was actually taped at the beginning of December 2012. I started this new reading program with Avery..and WOW...she is doing awesome...Terry Brown is awesome and i am soo happy to have found her. She has a great school out in California but since i am in SC that wasnt going to work..i contacted her last summer and she said she was working on putting something together for everyone that wasnt in California...but then i never heard back from her..so i contacted her again...she says i gave her that extra push to start/finish it up..so me, along with a few other parents are going ot try it out this year and see how it goes..and so far...ITS AMAZING......She is very expereinced in teaching children with ds especially children with ds to read.

I am soo proud of her and how far she has come this year. .Cant wait to see where she is at the end of the year....anyways trying to track her progress this was only working a couple of weeks with her..i need to do anther video..She loves her school at home ..and is always asking me to do it with her..a good sign..

My MRI and results

So my neurologist thought it was time to get a MRI done bc of all of the migraines that i have been having..they have been getting worse..and to top it all off i have been having other symptoms too..so wanted to rule out anything serious.
This week has been a long week…I've been stressed/worried about my MRI results all week…I was worried before the MRI too bc I was worried I was going to get claustrophobic and freak out during/before it..
I went for my MRI on Monday of this week…It went ok..I almost panicked a little when they put the cage on my head..it confined my head and freaked me out a little..but I quickly closed my eyes and started counting..half way through they pulled me back out and stuck me..I about hit the tech bc she startled me..I had no idea what she was doing…I thought she was taking my blood..but turns out she wasn’t doing that she was injecting dye in and then finished the MRI with the dye…First off they should of told me this prior to the MRI…and second they should of warned me right before they were going to stick me with a needle. I felt my heart rate go up…bc I started thinking I don’t remember this with Avery..or Brielle..or Jared…so why are they doing it to me???!!!  I know now why So anyways after wards they told me to call my dr on Thursday that they would have the results.. So I called Thursday to see if they had the results yet..they told me I had to come in..so I got an appt for Friday morning…
So basically I found out that I have a Chiari Malformation…and she tells me that I need to have yet another MRI to see how severe it is. Where they will focus on the cerebrum and spinal cord with fluid to see if any/how much blockage there is.
What is Chiari Malformation???  Ill take some of it off of the info sheet she gave me…It’s a structural problem at the base of the skull that affects the brain and spinal cord. The lower portion of the skull, is too small accommodate the lower portion of the brain. As a result, a portion of the cerebellum called the tonsils is forced to protrude into the spinal column. This results in compression of the brain stem and spinal cord that is primarily responsible for the symptoms.  Some symptoms include:
~Migraine/headache (yeap have that one) and in fact they are getting worse!!! I HATE the control they have on my life!!!!
 ~Neck pain (yeap have that one)
~Dizziness/vertigo (yeap have that one)                    ~Impaired balance
~IBS (yeap have that one)                                      ~Chronic Nausea
~Vague pains throughout the body (yeap have that one too in my arm and neck)                       
~Changes in the voice
~Auditory symptoms..like fullness, ringing in the ears, decrease in the ability to hear (yeap have that one too in fact I may not have that menieres disease like the ENT dr thought bc that is a symptom of this)
~Visual Symptoms..like double vision,blurred (yeap have that one)
~Numbness and tingling of hands and feet (yeap have that one)
~Poor sleep (yeap have that one to)
Treatment: As a rule, when the malformation causes symptoms that seriously impair the patients quality of life, its best to consider surgery. Surgery for chiari is basically about creating more room for the brain. Surgery relieves compression of the brain stem and spinal cord and improves the circulation of the spinal fluid. Only to be done by a specialist.
In a nutshell that is what it is…you can always Google for more information..you know I did!! I had too!!!
Breathe…Im trying to just keep on breathing..right now I am trying sooo hard to just not think about it until I do the other MRI and get them results back..but its sooo hard not to panic and not to be scared..and truthfully I am really scared!!! I don’t know if I should cry, scream, laugh, or what….I've had my crying breakdowns already..and I don’t even know how severe it is yet..but we are talking about my brain here..
I prayed and prayed for answers for my migraines..and I def got my answers just not what I wanted!!  Its good to know though that all of my symptoms were all linked to one thing..and not in my head!
Right now truthfully I am tired of my storms!!!  I feel like I have had my share and I should be able to enjoy the sun for awhile..but I guess its not up to me now is it!  I feel like I'm in sinking sand and I keep sinking and I'm trying so hard to get out but I just keep sinking further down.
I've had a  few people have told me that they think I'm a very strong person for everything that I have had to endure but I don’t feel very strong..in fact I feel very weak!!  Why cant I just be one of the ones that just fly's under the radar with nothing:(
So insurance wise (bc Jared is quitting his job at the end of this month..remember..) we don’t know what we are going to do…bc this puts us in a HUGE predicament.  So many questions and so many decisions.  Just asking for prayers…Prayers for peace…for wisdom and guidance..and for good news on the next MRI..

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.