Tuesday, September 20, 2011

Carly Update

It's been a while since I first told you all about what Carly has been going through, so I thought that I would fill you all in. Things are GREAT!

Carly completed an entire "Episode of Care" at Cook Children's for her physical therapy. Cook Children's does episodes of care where they set goals for your child - and once your child reaches those goals, they give the child some time off. They don't want to keep kids in therapy forever and ever amen. Carly's episode of care was 15 weeks long (she went once a week) and, after a few weeks of needing to warm up to her physical therapist, she feel in love with Miss Lindsay and so did this Mama! Lindsay was caring and sweet and (most importantly) she bonded with Carly. At the same time, she was structured and firm in a way that most moms (me included) aren't when it comes to making their babies do stuff they don't want to.

She did all of her therapy in her AFO's - Ankle Foot Orthotics - or ankle braces. These braces put her feet and muscles in a position that forces her to use her muscles and build her muscle tone. She wears the braces all day every day unless she is taking a nap (or swimming, of course!). She has been great about wearing them - until she gets in the car and then they come straight off, but I think that is more about keeping herself busy than discomfort. They have truly made a difference in the way she walks. She walks straighter and with more confidence. We have had many people in her life mention to us how much better she is walking!

This is the first set of braces
When we first began this journey, Carly could not go up or down even small steps without having to hold on to someone or something. She still likes something to hold on to, but she can take small steps easily now. Big steps still require the security of a hand, wall or railing. For your reference, "big steps" to me are the average step and curbs.

In June, we saw Deborah - her Orthoticist (?) - and she agreed with Miss Lindsay  that Carly was doing so well that we could put her in smaller, shorter AFO's that give her ankle a little more movement. Her braces limit her shoe choices considerably. In other words, all she can wear is Crocs. I  bought her Crocs in dark pink, light pink, black, white, teal and khaki. Carly only wants to wear the white ones. Anyone need Crocs in a size 4/5?

These are the new braces

Side View. Excuse the dirt and random hair band.

What else? What else?

Carly was also receiving physical therapy through Early Childhood Intervention from January - July. They were a good resource for us in several areas. ECI is a great organization that does great things for many, many families. Unfortunately, it wasn't the best fit for Carly, so we decided to focus on other forms of treatment . "Other forms of treatment" has come to mean gymnastics classes (among other things) and Carly loves it!

We had genetic testing done and it all came back fine. Hooray! We met with her neurologist a few weeks ago (he's the best pediatric neurolgist EVER, by the way) and he said that not being able to find any answers through genetic testing is a good thing. I think so, too, because that means that we only have to deal with Hypotonia (low muscle tone). He also told us to expect Carly to need therapy for a decade. Fine. We can handle that.

After several months, many phone calls, some helpful advice from our insurance company and cooperation from many sweet, supportive professionals at Cook Children's, I think that we finally got our ducks in order and submitted the proper paperwork to insurance to get Carly' speech therapy covered! I know TOO MUCH about  in-network, out-of-network, deductibles, copays, out-patient facilites vs. private practices, etc. But now I am glad that I do. She will be in speech therapy once a week for six months. Fine. We can deal with that. 

Last night I was thinking about all of the stuff that we have been through in the past eleven months and I thought, "Moms with entirely healthy babies have no idea how lucky they are", but then I quickly took that thought back. I am the lucky one. Freddy and I are the lucky ones. Carly is the lucky one. I know that God put some extra time and thought and LOVE in to picking our family and I will forever be grateful to Him.

I am Carly's mommy and I am the lucky one.


Anonymous said...

WE are lucky to know your sweet Carly!!

-the other Cheryl!

Anonymous said...

Shes a peecious little girl and lucky to have you as a Mom!!