Wednesday, July 11, 2007


Well, today (yesterday to you) we had another helmet adjustment. I think we have worked through many kinks, which is great. She said that she could already see an improvement - so I am really happy about that.

Yesterday (Tuesday) we had occupational therapy. It was the first time Allison has been here since before Harlie's 2nd heart operation. She said that Harlie did great. No negative reactions, which is great. But still a long road ahead. I was fully prepared for that, so no big surprise there. She doesn't swallow, but our goal is to show her that food in her mouth is pleasant. Teaching her to eat by mouth will take more patience than I ever thought possible.

I have hit another frustrating thing in the care of Harlie. As she grows she needs to take in more calories. As I've already shared, she is burning so many calories just breathing, she is barely keeping up. Well, every now and then I need to call the nutritionist and give her Harlie's latest weight and length so she can work her max calories. I called on Monday, and Tuesday AND Wednesday. STILL NO RETURN CALL! I can't believe it! I told the girl taking my messages that I have a child who needs every single calorie she can get and STILL no return phone call. She said she's there, so I don't understand.

I called again today and told her that Harlie will have to have lung surgery soon and we need every ounce we can get. This very nutritionist is the one that told me just a month ago that Harlie is one percentage away from beginning malnourished. Unbelievable. I will call my pediatrician tomorrow and see what he can do. I would call my favorite nutritionist, but she is on vacation this week. I tell you, summer is a hard time to get a lot accomplished. Well, that's pretty much it. Thanks for everything.

Take care,

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