For support from parents with children with all ranges of hypotonia, please join the facebook group Hypotonia Parents Connection.

First steps.

Lola took her first steps June 27th, while we were in New Jersey.
Nearly a month later, and she's walking further and further distances.

She still needs to work on her core strength. I haven't seen her physical therapist since before we went to NJ, so I'm not sure if the walking changes anything in the frequency of our therapy visits, yet.

When we first got the hypotonia diagnosis, I thought walking would be in the far distant future. I didn't expect her to catch up so quickly!
This is not the case for many children with hypotonia. They put in many times the hours, the money, the frustration, the tears that I've gone through. Often, they have years and years of therapy, and more of it. Speech, occupational therapy, as well as physical therapy. Medical test after medical test.

Our journey to first steps was not a long road, but for many others it is.

Great news!

So, I guess Lola's hypotonia is much more mild than we originally thought. I can't believe all the progress she's made since we started therapy.

She's very proud of herself!

When she was first evaluated, if I lay her on the floor, she would just lay there and not even attempt to get up. Now she's standing up without pulling up on anything!

She still definitely has some issues, we're still working on core strength and arm strength and crawling with her palms flat on the ground instead of just on the base of her fingers.

But we got some great news at her last physical therapy session... Lola's ankles have strengthened up enough on her own that she doesn't need the braces anymore (or at least, she doesn't need them so badly that we need to pay $800 out-of-pocket for them.)!

I'm sure she'll be walking any day now.

Insurance Hell

My husband's company has been sold, and we're in insurance limbo. Tomorrow, we are no longer insured with Cigna, but we're not in the system of United Healthcare, yet.
And now, we wait. We haven't ordered Lola's ankle braces yet, because even if we have to pay out of pocket, which we are prepared to do, we want all that cash to count toward our deductible.

But my sweet little girl is making so much progress!

 

Who knew she could come so far in such a short amount of time?

Bad news.

Our Insurance will not cover the SMOs as we have not met our deductible yet this year, so we will have to pay out of pocket. And my husband's company has been bought out, which means his insurance may be changing in the next few weeks, so we will probably have to pay out of pocket for the next pair when she outgrows this one.

*Sigh.*

The Hip Helpers Are Here! The Hip Helpers Are Here!

Wearing her new hot pink Hip Helpers at the park.

Yesterday, the Hip Helpers I ordered came in the mail. (Super fast shipping!)
The Hip Helpers prevent Lola from scooting on her butt, because she can't sit with her legs out "Indian style" (or whatever the PC term is for that now. We called it "Indian style" when I was a kid.), so she is forced to crawl. She was crawling a few paces on her own before we got the Hip Helpers, but now she must crawl all over, and she has been getting a little bit frustrated at times. The Hip Helpers do not prevent her from pulling up to stand, but now she has to do it in a different way than she normally did it, which is also frustrating to her.

Lola crawling at the park.

In other news, she got fitted for her Sure Step SMOs on Thursday. Now we're playing the waiting game, waiting to hear if our insurance will cover them, and then waiting for them to be made. I am anxious to get them on her little feet. 

New developments...

Doing laps, cruising around her playpen.

On Saturday evening, Lola scooted over to the play pen that I'd recently dug out of the attic, indicated that she wanted to climb in by pulling up to stand and lifting her leg as if she would climb in if she could. So I lifted her up and put her in. A few minutes later, I realized she was doing laps, "cruising" around the edges of the playpen.  How exciting!

The only problem is her feet and so hyper-mobile that her feet are often sticking straight out to the sides instead of facing forward like normal feet. So now I have a prima ballerina/yogi for a daughter.

Like a ballerina in second position. 

So, next on our horizon is a visit with an orthopedist to get her fitted for ankle orthoses, and possibly one that goes above the ankle and converts to an ankle orthodic, like this one.

In the meantime, I ordered some hip helpers, which keep hypotonic kids from splaying their legs wide open, and they prevent Lola from scooting on her butt. She got to try on a pair at her physical therapy session yesterday, and she was crawling all over the place!