Saturday, February 26, 2011

Cindy (Jordan's mom)

(Sorry to others, but I don't know how to get in touch with Cindy otherwise.)
Thank you for your recent comments. Since you are a PT, you might be able to help. I am considering going to an Advocacy Day rally at our state house on Wednesday, and I would like to take some research with me. You said that you had read about sitting by age 2 and the likelihood of walking. Could you please share that research with me? Also, if you have any other research regarding the benefits of walking/standing, if you have the time, could you please share that with me, too?
I know I'm not giving a lot of time, but it occurred to me last night that research might be good to present if I talk to our legislatures. If you have a quick find about early intervention, or can point me in the right direction, I could use that, too.
If you would email me at, I would be so grateful.

Friday, February 25, 2011

The Hardest Part

I thought the hardest part of having three children under the age of four was going to be, well, having three children under the age of four. It is hard. Physically demanding, I must say. And it kills me to think that I might not be giving each child the attention that he or she deserves, but I try my best.

But the hardest part, emotionally, has been the clothing. No, not the washing of the clothing, which I actually do a lot of, but the hand-me-downs. Lily's hand-me-downs. I truly thought my heart was going to break the first time I pulled out our bins of little girl's clothes. They were all Lily's at one time, and pulling them out brought back very strong memories of her in them.

It probably sounds silly, but as I pulled them out for Soleil and realized that we would probably be giving them away after she outgrew them, I felt like I was giving a piece of Lily up. There's no reason why we're going to need them once Soleil outgrows them, so really, there's no sense in keeping them. Still. . .

Dave and I talked about the pain that caused, and besides pulling up the past, he commented on how, especially back then, our lives were tied up in every moment of Lily's existence. That's just the way it is when you have a child statistics tell you probably won't live past her first birthday.

As for the clothes, yesterday I got out the bin that had the 0 - 3 months, 3 months, and 3 - 6 months clothes in them. It was shocking to see clothes in that bin that Lily was wearing when we moved here last summer. Shocking! Some of those clothes were 3 month sizes! Mainly because she was so skinny. Even more shocking is that she is currently outgrowing 12 month sizes. . . in less than a year's time! My what a difference a g-tube makes!

Monday, February 14, 2011

Happy Valentine's Day

To our friends and family. . .

To those who have been on this journey with us. . .

To those who have been there for us and showed us kindness we can only hope to repay. . .

Thursday, February 10, 2011


Last night, Lily was sitting in my lap, facing me. Dave was sitting beside us. I told Lily that it was time for bed and that she needed to get kisses from her daddy. Immediately after I told her that, she looked right at Dave as if to acknowledge that she knew I was talking about him.

It seems that recently, this little girl has exploded with her understanding of the world. All of her therapists have commented about this. Lily is sitting up to the point where I will put a pillow behind her and walk away. She is beginning to put weight on her arms when placed in a crawling position. She watches people as they walk across the room. And she signs the word more.

I'm not kidding! Lily signs more! Her speech therapist started this with her. She would help Lily dance and then place her hands together. We caught on very quickly because (1) when she's dancing, Lily is standing and (2) Lily LOVES to stand. With this motivation behind her, I had no doubt that she would do well with this task.

I'm attaching a video of Lily dancing. In between her dances, watch her head and her hands. When she moves her head crazily and rolls her eyes, she's telling us that she wants to dance. When she puts her hands together, she's telling us that she wants more. In her own way, she's telling us she wants to dance some more.

I know the song I sing to her is irritating. It irritates me! But I sing it repeatedly because I want her to understand and anticipate. I'm also hoping that one day, she'll catch on to the sound of the song. We do play other songs with her and sing other songs to her, but I do this one a lot. In fact, there have been times when I swear she's matched the pitch of a note on her toy.

When I jump Lily up in the air, notice her legs. There was a time when she would be stiff. Now, she lifts her legs up. My hope is that this is somehow good for her abs. Sometimes when I bring her back down, she lands with stiff legs. Other times, she bends her legs. I let her strength bring her back to straight legs.

It saddens me to think about the crisis our state is going through with Medicaid. Insurance does not cover Lily's therapy, sadly, so we have to rely on Medicaid. Basically, they are saying that children with Medicaid will get 75 hours TOTAL for their therapy, yearly. Currently, Lily gets 1 hour a week for pt, one for ot, and one for speech. Do the math. If we gave up two weeks for vacation, it would take 150 hours. Something is going to either get taken out or cut back. Seeing Lily's progress and knowing how she regressed when we moved and went two months without therapy makes me shudder. Plus, everything is retroactive, starting April 1, 2010 (I think. . .or maybe it's July). If Lily has met those 75 hours, she'll have to wait until the next fiscal year to get therapy again. (There are loopholes with doctor recommendations, but I'm not sure how willing the doctor will be to do the paperwork.)

After so much progress, I'd hate to see Lily lose out.

Friday, February 4, 2011

Physical Therapy

Lily has been receiving physical therapy since she was an infant. Before we moved to Charleston, therapy involved strengthening Lily's muscles so she could do the more physical activities we were hoping she would do. Her physical therapist had read a study that stated that children who could sit on their own by the age of two were more likely to walk than those who were able to after the age of two, although not necessarily by conventional means. (I don't know where that information came from, but we didn't want to risk NOT believing it.) Needless to say, we've made a push to get Lily sittin' pretty.

But we didn't stop there. After Lily's g-tube surgery, we took about a two-month rest from therapy while we waited for paperwork to be transferred and new agencies to kick into gear. Lily had her pt evaluation on July 14. During that evaluation, Lily would sit up for maybe one or two seconds and would not weight-bear on her legs. After four months of weekly one-hour therapy visits, Lily began to bear weight on her legs. Around the same time, she also had a few instances where she sat on her own for over a minute.

If you saw Lily stand, you would know why she has been so successful at it. She loves it! She is so proud of herself and her accomplishment. I love that type of motivation! Lily is now at the point where she will sit at the edge of a bouncy seat and push herself up to standing (with us holding her under her arms). Sometimes, you can just see (and hear) the drive she has to get herself into that standing position. She struggles, but she wants to stand so badly.

At this point, she can sit by herself, but she has this bad habit of nodding her head backwards and falling back. I think it's a game for her, and we're always there to catch her, but she gets a kick out of it. I don't know how we'll change that habit of hers. There have been times when she has sat for more than five minutes. We're really successful if she's distracted with something like football. (My little tomboy!)

Despite all of this sitting and standing, Lily may never walk. That doesn't mean that we won't give her the opportunity to take that first step if that's what she's interested in doing. We give her plenty of chances for that. But I think her own motivation pushes her as much as we do. Who knows, maybe one day I'll be sharing a video of her walking.

This video was taken at Thanksgiving. Normally, we would hold Lily under her arms, but this time, she used the coffee table to support herself. I love this video because it shows how happy Lily is when she stands.