Thursday, July 23, 2009

Low Tone

Harlie had another great moment in feeding yesterday. I gave her that squirt bottle and she put her lips around the straw and ... sucked the juice into her mouth... and then.... swallowed it!!!! She coughed a little, but that wasn't surprising. I mean, she's NEVER sucked before, so she probably didn't have much of a clue about what was going to happen. But the next time, she sucked the juice and then swallowed it with no coughing. This really is so unbelievable. I had NO idea that we would be where we are now. NO idea at all!

And she likes her feedings now. And it is fun to feed her for a change. All those millions of times that I hated it, dreaded it, would have paid someone to do it for me if we had the money. I am just so incredibly happy that we are here! And now I have to learn about pureeing foods for her to eat (instead of giving her baby foods). So, I'm going to have a pureeing lesson with our feeding therapist next week.

Harlie had physical therapy yesterday (Wednesday). I spoke to Traci a bit about her low tone and loose joints and ligaments. At the risk of sounding completely stupid, I really didn't realize that Harlie had this issue until fairly recently. To be honest, it's just the way she is, and I was/am used to her and don't know her any other way. But picking up other children Harlie's age helped me realize the difference in her. The other realization came when, just recently, while walking, she wants to go one way and I want her to go another. Most times, you just tug them a little while holding their hand, right? Well, if you tug on her arm, it feels like it's going to come out of it's socket. It's weird. It's kind of gross. She just feels so fragile. And now that I see it, it's pretty obvious and I can't believe I didn't see it for so long.

Anyway, Traci said that she will always be this way, but that we need to help her build her strength to compensate for the loose joints. She also said that swimming or gymnastics would be a good thing for her. I guess the flexibility that comes with having loose joints can work in their favor if they can build the strength. Well, swimming's out, obviously.

So, that leaves gymnastics. And Harlie went to the Little Gym with her friend Kyleigh, Jennifer (Kyleigh's mom) and Brandy earlier this week. They said she loved it! They said that she did some somersaults and hung from a bar by her hands all by herself! Wow! And they said that she ran around with her arms out like an airplane with the other kids and loved that. And it made me realize that I really need to get that girl in some classes with other kids her age! She really needs the socialization - for so many reasons! So, I'm going to see what I can do to get her in some gym classes.

Well, that's it for tonight.


Grandma said...

I wish I could have been there to see her playing with all the other kids. She is such a friendly little girl, I am sure she just has a wonderful time. I know we all look at b Harlie as such a fragile child but she does have te strength and stamina to want to mix, blend in, do what everybody else is doing so I hope you can find the time and a place for her to take the gymnastics. As a passing funy note..maybe she will be your sports child and not Murphy!!! Do you think Harlie will be able to eat ice cream for her birthday? Oh how joyous of an occasion that would be!

Unknown said...

We love TLG. That's how we do PT! However Leyda is in a 3/4 yo class and clearly lacks the stamina to keep up.

Karen and Howard, who own them I believe, are fantastic.


Susan said...

Did you see the post from the new trach member Kate? She had low tone as a baby (is now 20 yrs old & decanned). Her mom said the two things that really helped change that were gymnastics and horseback riding. So I think gymnastics is a great idea.

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