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Can somebody just call me back please??

I called the scheduling department at Nationwide Children's Hospital yesterday and asked them if they had received Raya's referral. They said no. Really?? I told them our nurse faxed it on Monday. They couldn't find it in the computer system. Of course they can't. GO FIGURE. Since our nurse was out of the office yesterday, there really wasn't anything I could do so I just told the lady I'd call back next week.
After I got off the phone, I remembered that in a previous conversation with the scheduling department at NCH, I was told that there's a specific person in charge of scheduling out-of-town patients. I called back and asked if that was the case and if there was a possibility that person had gotten Raya's referral and it wasn't in the computer system yet. The person I talked to said that yes, there's a specific person I'd need to talk to but she was at lunch so she transferred me to her voice mail. I left a message, which I had hoped would be returned yesterday but she didn't call me back. Again, go figure. That's getting frustrating because I've called SO many people about different things with Raya this week and have had very little luck getting anyone to call me back. Nothing ever goes smoothly and as planned with this child! :)
She did have a very good PT session on Thursday and a very good session with her Anat Baniel Method (ABM) therapist on Friday though. Raya is learning to ignore what they're doing to her and just play while the therapists work on her and they're learning to recognize her limits and work past them without making her throw up. It sounds dramatic, I know, but I consider it a success when we make it out of ANY appointment without Raya throwing up. :)
When we first got to her ABM therapy appointment yesterday I thought we were in for a rough time because she threw up in the car 4 miles in to our 60 mile drive and then as soon as we got into the lady's office and I was trying to take off her wet clothes she started throwing up again. We kind of just had to sit & wait for 5 minutes until she had completely emptied her stomach and finished dry heaving but then she was pretty happy after that. She stands on her toes a lot, which is typical of CP and/or sensory processing dysfunction (SPD). Since Raya wanted to stand up and play with the little Leap Frog table instead of sitting on the therapy table, her therapist focused on her ankles and pelvis for this session. By the time her hour was over, her therapist had gotten her to start rotating at the ankle which allowed for better rotation at the waist and allowed her to stand flat-footed and step without planting her toes first. It's pretty cool when you can see instant results like that because it doesn't always happen that way. I've also realized that another benefit of seeing the ABM therapist is that it seems to help Raya to realize that therapy can be enjoyable and she doesn't have to be freaked out by everyone who touches her. Even if that was the only result we ever saw out of it, it would be worth it because she's been pretty traumatized by everything she's been subjected to and there's a lot more ahead of her.


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Adhesives Part 1: Adhesives & Taping Techniques for NG tubes

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That was the beginning of our trial-and-error process of figuring out which types of adhesives were better for all of the different things we used them for. This will of course NOT be an exhaustive review of every adhesive out the…

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Here are a few things I wish someone could have explained to me before Raya got a G tube:

1. What the heck does PEG mean?
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