CP Connection #2

With a New year, we are looking forward to some new exciting things for Nina. After her 6 month post-rhizotomy follow up at Mayo Clinic, we have some goals and lots of work to do. Hopefully we will get Nina back in private therapy because she needs it in order to accomplish these goals.

1. Nina will walk 20 feet independently with braces and shoes in 4 weeks.
2. Nina will ambulate with forearm crutches with contact guard assistance for 25 feet in 4 weeks.
3. Nina will transition from sit to stand independently from bench (90/90) in 3 weeks.
4. Nina will increase hamstring length to 35 degree popliteal angle.

Pretty exciting to think about, although 4 weeks sounds a little intimidating, but we will work hard to accomplish these goals. It would be great if her next gait analysis is done with her crutches and independent walking.

Some new 'toys" for Nina include:

Glasses: Nina has a new prescription and new glasses. We stayed with blue, because she likes blue glasses. She has such a small face that finding frames is difficult. But I think these are pretty cute. If you know of some good deals on bifocal glasses for kids, please share!

 

 AFOs: Nina finally outgrew her first air of braces. These new friends of hers are pretty sweet, not only because they have butterflies, but do you see how they seem to be in an angle?

 There is a plastic piece that connects the bottom and the top of the AFOs. This little plastic piece provides quite a bit of resistance, so when Nina stands, she has to really push and make her legs straight. When she takes a step, her toes come up, being pushed by that plastic piece in the AFO. This is making her take steps and make contact with her heel first...for the most at. We have never seen heel-toe steps, all we saw were toe steps or straight down, but never heel first. These AFOs are awesome!

 There is a down side to these awesome AFO's. The extra little piece there that makes Nina step so well, also makes her braces very wide. So wide indeed, that we have not been able to find any shoes that go over them other than Crocs.

 So here is a video of Nina walking with her new AFO's. If you pay close attention you will see there is heel first contact in her steps, especially her left.

 Forearm crutches: And they are pink! Okay, they look salmon, but it is a shade of pink so we are happy. This was Nina the first time she held them. She was very nervous.

And here she is, practicing walking with the crutches. We have been told it takes 2-6 months to learn how to use them. I believe that!

<a href=”http://www.elliestumbo.blogspot.com/” style=”border: none;”><img alt=”Stumbo Family Story” src=”http://i254.photobucket.com/albums/hh90/ellenstumbo/CP-connection.jpg” style=”width: 129px; height: 129px;”/></a>

Now it is your turn to join in the CP Connection. A few things to remember, make sure you add the CP connection button at the end of your post, that way we can all be "connected" in one place. Take some time to visit the other blogs and leave a comment if you are able to. You can click here and read the guidelines in how to connect.

Responding to Your Comments #2

Blog post: When Cute Makes a Difference

Go to the Walk Easy Website. They're what I've used most recently. The PT who told me about Walk Easy said if insurance won't cover it then you can do a tax right off, since you have a prescription.

Thank you Sarah! This is great to know and to pass along!

I will take a moment and encourage you all to visit Sarah's blog. Sarah is a young woman with CP, and I am really looking forward to having her join the CP connection.

Blog post: This Man

Happy Anniversary!

I had to read back and I can see why some of you thought it was my anniversary. Sorry about that, it is not our anniversary yet! Still a few months away. I just wanted to take a moment and thank my husband for being the stud he is!

I do hope that someday I can at least have the opportunity to hear Andy preach. :)

When I figure out how to link to his sermons, I will do that!

Reading the story of your struggle with Nichol's birth, I noticed that Andy never judged you; never tried to "Fix" you. That was the true test of a wonderful husband. He is truly a Godly example to all who know him.

 Yes, you are right, he never tried to "fix" me. He allowed me to take the time I needed and he listened to me. I love how well he listens and how willing he is to get in the "hole" with me.

So often we hear so much more about how bad marriage is, how it's impossible, how you may as well count on it not lasting. It is so refreshing to read about women who are in loving relationships. No, it isn't always easy, but it is definitely worth it!
And what a legacy you are leaving for your daughters, showing them how a husband and wife love one another!

It is worth it! My parents are divorced, and while they were wonderful parents, I was not able to learn from their relationship. Their divorce affected me, even as an adult.  It is my heart's desire that my girls know that their mommy and daddy love each other. They find their security in us, and we work hard at being connected and in the same team.

For the rest of you that left your thoughts on this post, thank you! And yes, I encourage you to thank your husband for what he does. You can write a blog post, you can write him a letter, leave a sticky note where you know he will find it, or send him an e-mail. Let him know you appreciate him.

Blog post: Cerebral Palsy Connection

In an effort to connect with other CP bloggers, I will be hosting a "blog hop" Thank you for all of you who will be participating! I am really looking forward to this!

Blog post: Much to be Thankful For

I came across your blog as IDSC for life posted some of your links on facebook.
We have two adopted girlies, our youngest (two weeks old today) has Down syndrome.

 I love the work that the IDSC does! I am their hispanic outreach coordinator. I really need to do a better job at that job and get some more information here on this blog!

And congratulations on your baby! I love babies with Down syndrome and I am not biased at all! 

I'm thinking you should get Nichole in the modeling business.

 Well thank you! I think she is beautiful too! There are times I find myself gazing at her blown away by her beauty. She gets to me.

What a blessing for two orphans to have a connection between their old world and their new world. That will be so valuable to them as they grows and seek to develop their self-identity. Blessings!
Yes it will. They remember being together at the orphanage and you are right, they will have each other. They have similar backgrounds, as if we do not know anything about their biological parents. While we won't be able to bridge that, they will look at each other as their "family." And I will add that Oksana's family, all of them, have become dear friends. The type of friends you have for a life-time. So these 2 little orphan girls, have given us a precious gift by bringing our families together.

When "Cute" Makes a Difference

Nina has a prescription for forearm crutches. It is exciting that she has gained the balance and strength necessary to use them. The walker has been great, but Nina's gait (the way she walks) is just painful to watch. She hunches down, elbows bent, legs bent, and she drags her feet. Let me tell you, she can go fast! But the point is to get her to walk properly. Her body needs to learn how to move.

The piece of paper with her prescription is a symbol of moving forward. It is exciting!

I stopped by to order her crutches, and I realized quickly, that our options were based on shades of gray that screamed: "I am adaptive-medical equipment!"

"Can we get them in pink or purple?" I asked

No. No we can't. Insurance will only cover certain models, and "cute" is not their priority. I get that. What I don't get, is that there is no difference in cost. As a matter of fact, the crutches that were recommended to us, the ones that are "cute," the ones where we can chose a color, are more affordable that the ones that insurance would cover. But it doesn't matter, because it is what it is.

The thing is, sometimes, "cute" is significant. When Nina is in her wheelchair, people stare. A small child in a wheelchair seems so sad, yet it is equipment that allows her to be independent and go long distances. She got to choose the color, and she loves that about her wheelchair, it is her very own. We have seen lots of walkers, and Nina really notices them. She can tell you which ones she likes and which ones she doesn't like.

All the medical equipment we use is part of who Nina is. The wheelchair, the walker, and now the crutches...those are her legs! Sure people will stare, but if she likes them, if she thinks they are "cute," if she gets to pick a color, then it really doesn't matter what others think. For her, crutches are an accessory; like a bracelet, or a necklace. She wears them proudly.

We walked out without ordering gray crutches. We will call insurance and try to figure it out.

It amazes me, really, as I learn to parent Nina and navigate the world of Cerebral Palsy, how small things can make such a big difference. But we do it, and we try, because we love her. Because we want her to feel confident and secure. And yes, sometimes, the reality that she had nothing at the orphanage makes me want to give her the very best. And this time, it is colored crutches.