Gaining weight again

So, we went to the pediatrician today. I closed my eyes and waited till they told me what her weight was…10 pounds, 1 ounce. That’s a 6 ounce gain in 7 days. Last week’s low weight gain really brought down her average gain for the past month, but a few more weeks like this would really help. We are just glad that she is finally in double digits!

On Wednesday we had physical therapy. I think that went well. I had Traci (PT) look at Harlie’s CT reports to help me understand her cervical spine issues. She told me that her first cervical vertebrae (C1) is fused to the base of her skull (occiput). This is what is limiting her mobility in turning her head. I don’t think this is repairable. Tracy thinks that maybe C2 will compensate a bit for this. At some point, when we can work it in, we’ll need to find an orthopedic doctor to help us with her back issues (she also has some abnormalities in her lumbar spine). But, that will have to wait.

As far as her therapy, that went great I thought. Harlie loved the exercise ball. And I think her neck control is really improving.

Today we had occupational therapy. It was our first meeting since we got the results of her barium swallow study. The therapist tried a couple of different nipples and techniques to get her to suck, but she wasn’t interested. She used to take a pacifier, but since she found her hands, the pacifier doesn’t interest her anymore. Anyway, Allison (OT) said that she is going to have to learn to swallow first, then we will introduce the sucking. So she used a syringe to squirt some milk in the back of her cheek.

We are going to have to use a thickening agent so she’ll have more control over the liquid. You mix the thickening agent with the milk and it makes it a nectar or honey-like texture. One thing that we will have to work on a few times a day is trying to get her used to having something in her mouth, other than her hands. Unfortunately, she gets a lot of negative touching around her face with the constant suctioning and trach care. So we need to introduce some positive touching. This whole eating by mouth thing is going to be a slow process.

When we went to see her pediatrician, our day nurse (Brandy) went with us. I must admit that I was very reluctant to have a nurse go with me to the doctor appointments, but I am very comfortable with Brandy, so I changed my mind. I can’t tell you how great it was to have some help carrying her stuff. The best was that I could concentrate when I was talking to Dr. Smith while Brandy was getting Harlie dressed and suctioned, etc. I am totally loving having Brandy here to help me. And I think this week's schedule really worked out because she was here for both PT and OT so she can help me with all that.

The most exciting event of the day was when Harlie decannulated herself (pulled the trach out). Yes, you read that right – she pulled her trach out! I jumped up and undid her ties and put it back in. No biggie. She never skipped a beat. Luckily, Harlie can still breathe through the stoma (hole in her throat) so that makes me feel better. I did some research (there is a trach forum) and evidently, this can be a big problem depending on the child. And it gets worse as they get older. I guess we’ll try some different ties to see what works best. Well, that’s it for tonight. I thought I would be brief. haha

Take care and talk to you soon,
Christy