Wednesday, February 23, 2011

Sweet Carly D

Alright, here we go. This is sure to be my longest post in my blogging history, but I want to let my friends and family in on what has been going on lately in Carly's World (and ours). I will try to make it as to-the-point as possible. Don't worry - she's fine! She's wonderful! She's just had a lot going on lately.

Carly walks with her feet turned out, on the inside of her foot and sometimes she seems to drag her left foot. We mentioned this to our pediatrician at her 18 month check- up (since that is when she started walking). She said to give it a few months. Two months later it wasn't getting better and we felt like her balance was getting worse. We told the doctor this at a sick visit and she referred us to a pediatric orthopedist.

After x-rays, the orthopedist said all was well with her bones. Since she was a late crawler (11 months) and late walker (18 months) and kind of a late talker, he referred us to a pediatric neurologist and ECI (Early Childhood Intervention - a state and government funded agency that provides at-home therapy to families with little or no cost to them).

First...ECI. They evaluate all aspects of Carly's development and if she is more than three months behind in any area, she qualifies for their services in those areas. Her nutrition was great, but they did recommend physical therapy as well as some basic development. So Kelly and Elizabeth visit us every other week. They give us exercises that we can do with Carly that will strengthen her core and her legs. Kelly also recommended that we have Carly evaluated for orthotics (braces for her ankles), but let's hold that thought.

Two weeks ago we had our appointment with the neurologist (it took 3 months to get in to see him!). (Flashback: When Carly was about 6 months old, our pediatrician ordered a CT scan of her brain to check for hydrocephalus - aka water on the brain - because her head measured big and that is a sign of hydrocephalus. She didn't have it.) Since we had the CT scan at Cooks Children's Medical Center and the neurologist is also with Cooks, he was able to pull up the image of the CT scan on his laptop during our appointment.

He noticed some things that weren't necessarily "wrong", but not the norm. Assuring us that nothing was wrong, he wanted to take a closer look at her brain and spine - just rule out the possibility of something neurological being the cause of her banormal gate (walk). He said his hope was to call us and tell us that he didn't find anything.

So he ordered an MRI and wrote referrals for a physical therapy evaluation, an occupational therapy evaluation, a speech therapy evaluation and a referral to a geneticist (to rule out anything genetic). He also wanted us to have her evaluated for orthotics. He called in a favor and they (the people who do the orthotics) were able to see us that day - even though the clinic was closed due to snow and ice.

Deborah (the lady who evaluated and fitted her for orthotics) immediately recognized LOW MUSCLE TONE in Carly. This is something that can be addressed through orthotics (to correct the positioning of her feet) and therapy. Carly gets her braces on Friday!

So. last week we had the MRI. Yes, our sweet baby had to go under anesthesia, which is no fun for parents, FYI. We found out yesterday that the MRI did not show anything bad! Nothing neurological! Praise God!

Now we are in the process of getting evaluated for all of the different therapies and coming up with a comprehensive therapy plan that includes private therapy through Cooks as well as continuing the therapies with ECI. We're learning a lot about how everything works together. By strengthening her muscle tone and core, she will have the muscle strength to fill her diaphragm with air and say her vowels better.

Carly is amazing! I can't say that enough. We are thankful that her abnormal gate is nothing more serious than low muscle tone. While we realize that this is a challenge God has set before us, we have faith that He will bring us through it. Carly is healthy. And happy. She is also a very determined little girl and Deborah said that will make her a STAR in therapy. Most importantly, she's loved. Trust me - this email makes it sound more "extreme" than it is. If you know her and see her all the time, you know how great she is.

So there you have it. That is what has been going on with our Sweet Baby Girl. I plan to post updates on here, so feel free to check in from time to time to see the progress that Carly is making. Thank you all for your love and support.

And for those of you who read this post all the way to the end, here is a sneak-peak at some pictures that my friend Amanda took of Carly for her 2 year birthday party invitation.


Leah said...

Thanks so much for sharing Cheryl!!! What a little blessing your sweet Carly is. I know that God has BIG, BIG great plans for your girl.

Praise God that she is not in any pain, she is still happy...and that the MRI was normal! Yay!!!!

I know the therapies will help strengthen her, and give you guys some confidence in helping her reach her milestones.

She is very blessed to have you and Freddy as her parents!

Much love, hugs and prayers for you 3!

JKBro80 said...

Uncle Jim and I just read your post.
Carly is such a sweet and darling little girl and we know with all you are doing she will be just fine.
We are looking forward to seeing you and meeting Carly and Freddie in March.
Take care...keep the faith...stay close to Jesus.
Love you
Aunt Karen and Uncle Jim

Mama/Linda said...

I love your blog, Cheryl! And after meeting your adorable Carly, I'm even more excited to read about her. Bless her cute itty heart little heart! I'm so glad she's getting the best care. And also thankful that therapy and braces will help her.

Lauren said...

How brave of you to share your story with us all! We will keep you and your precious, spunky little love in our prayers!

Sara said...

Cheryl, I've been meaning to tell you that Carly is such a sweet and beautiful girl and I think she is so lucky to have such wonderful parents! If you need ANYTHING at all... or just someone to talk to, you know where to find me! And I know that big-blue-eyed daughter of yours has just as much bravery and tenacity as her mama... so surely she can overcome anything in her way! :)

Misti said...

Wow, that must've been scary to worry about all of these issues, but I'm glad things worked out and she is healthy! I hope the orthotics work for her!

Jenna D. said...

Thank you so much for sharing your sweet girl with me. She is in good hands for sure. I hope therapy is going well, I am so glad to be in touch again. Much love to you and your sweet family. ( I need you to help me with Stehle's blog it is a mess compared to yours!)