Wednesday, November 6, 2013

What's Goin' On

  • I know I have been absent lately. I just can't get this sweet girl off my mind!
 Please pray for her and follow her story here.
She's on her way to Boston as I type, and will be there very soon- if she's not already there.
She has certainly had my mind preoccupied.
As a friend to her family, I am heartbroken and can't stop thinking of her and them. I wish I still lived near them so I could help them in every possible way!
As a mom, especially to a medically fragile child, I hate to admit I'm a bit traumatized. Normally when I follow kids and they take a turn, I stop following them. I struggle greatly with negative thoughts about Annie's health. Sometimes I sinfully camp out in those thoughts. Reading stories like Grace's usually make those thoughts for me worse.
But in the end of the day, this little girl and her family are much too precious to me to ignore.
I'm praying that Boston heals her once and for all and she can live her life fully with a healed heart. :) Her fight is really only beginning and it's a hard fight- PRAY PRAY PRAY!
  • Speaking of Boston, I started a Boston travel type blog last month and am trying to post there daily. SO when you see a lull in my posts here and are bored, go check out my posts there. :) 
So, what is the latest with this angel?
A lot is going on actually. Big changes, (well for her lol).
We started gymnastics last spring and dance this fall.
Gymnastics was more of a glorified physical therapy. She already receives a lot of physical therapy. I was hoping she would be in a main stream gymnastics class.
  • Well, I was recently at a gymnastics birthday party and met with the coaches who were willing to main stream Carousel. Carousel did forward rolls, (as well as hand stands, backward rolls, cart wheels, work on the bars- she's amazing on them, pics soon, etc) the first two classes, (5 total forward rolls in her braces with assistance). After her second class, she was playing without her braces and I looked over and she did a forward roll all by herself!  
Yesterday at gymnastics we decided she does better without her braces. :)

And at gymnastics yesterday, Carousel asked her friend to hold one hand and asked me to hold the other. Then she said, "let's pray," and she prayed for us! "pray God, thank You for this day. We love you, amen!" I did not encourage this or anything, this was all her idea. Sweetest thing ever!
Needless to say, we left her old gym and we are now at the new one. I hated leaving her old coach, we loved her, but Carousel has already accomplished so much in her new class!

OH and this gym has a special needs gymnastics class every other Sunday! She will be joining that too! :) Take that Spina Bifida- Carousel has you, but you do not have Carousel!
  • Also, at this new gym they have dance classes. I had planned on keeping Carousel at her old studio and have her take one class at this new one. Well, after her first class there it was very clear that this studio too was a better fit for her. So sadly we left her other studio. I'm sad she is leaving her friends and I hope we can keep in touch with them.
  • ALSO, her gymnastics coach teaches at a MDO and said she was welcome, so she will be going to school one day a week!
I will still be homeschooling, but since we are already in town for gymnastics, why not go to school once a week? It will definitely be good for her on many levels. :)

So for those of you keeping track, that's 2 days of PT (on the same day as dance), 2 days of gymnastics, 2 days of dance and one day of school. We are going from laying in bed all day because of my "illness" to now being on the go 4 days of the week (5 including Sunday with church and her special needs gym class). It's definitely a change and we are still getting used to it, but it is a welcome change. :)
  • ANOTHER great and welcome change in our lives is that we have FINALLY found a church to call home! We are thrilled to listen to great, exegetical, Bible preaching every Sunday and look forward to getting involved in the church. :)
Lastly, Carousel has 2 big doctor appointments (3 including her 4 year old check up!) next month. She has to see her urologist and get an ultrasound to make sure everything is still working well. We have been very blessed with everything there and pray that continues!

She also has to see her orthopedic surgeon. This is not an emergency per se, but this appointment has been moved up 6 months and that was quite necessary.  The appointment that was for 6 months from now was just a check up, but now it has been moved up to great importance.  Her feet have always been clubbed, but with bracing it has been manageable. When she got her walking braces last November we stopped using her clubbed feet braces. Her left foot, (her "bad" leg) has been slowly but surely clubbing continually throughout the last year. 
 Last month her pediatrician at the Spina Bifida clinic decided it was quite necessary for her to see the ortho NOW. First he ordered a scolio scan to make sure the problem was not because of her spine, (praise God all looks great there!). Then he scheduled the appointment, and I am worried, but almost certain, that she will need surgery. We were told by her ortho months ago that he would not act until it was necessary, but the necessity is growing. :/
I have been through 5 brain surgeries with her, and in the light of Grace's trials, surgery on her leg seems so minimal.
BUT, she is walking so well, (about to move from her walker to crutches!), and she is doing gymnastics without braces! The thought of doing anything that could set her back or change her abilities in these areas makes me so sad. We have to fix it if it needs to be fixed, but I'm not going to be happy if it does.
Not to mention surgery is surgery. Nobody wants their child to go under the knife for any circumstance. And while this isn't life saving, major heart surgery, (Grace), or brain surgery (Carousel's 7 {5 with me} prior surgeries), it is still a pretty major surgery. :/
So please pray fervently for Grace, and add a few prayers in there for Carousel's leg! :)

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