Sunday, June 17, 2007

Helmet appointment.

Well, I think Harlie is starting to feel a bit better. This afternoon, she was much more herself and tolerated sitting up in the high chair for a while. She started this funny thing today. When you smile at her, she smiles back and tilts her head to one side and scrunches up her shoulders. It was hysterical. It's like she's flirting. It is so nice when she is interactive like that.

On Friday, we went to get her helmet adjusted. I was alone that day and getting her out the door proved to be especially challenging. She has a feeding tube that is connected to a backpack that I wear, a pulse ox monitor hooked up to her foot, and a tube from her trach collar to the oxygen tank. So, I have to carry her, a monitor, a backpack, an oxygen tank, a suction machine, and a diaper bag. Yeah, it's something.

So, I hooked her up to our handy-dandy traveling oxygen tank and got her ready to take downstairs. I turned on the tank and heard it come on, put it on her and started to gather everything in my arms. But, her alarm was going off and she was not looking good and started to turn color. I checked everything and realize that the tank has gone empty! So, I grab another tank (larger and not so travel friendly). Hook that up and hear it come on. Carry everything downstairs. She's not looking good again. Alarm starts sounds. I realize that tank has gone empty, too! So, I run in the garage and grab my last tank (only one "emergency" tank left in the car). I transfer the regulator onto the new tank and realize that I don't have the key to open it. So, I run upstairs to grab the key from the first tank. Run back downstairs, open the tank and she's like, "ahhhh". And so am I.

I thought about calling and canceling the appointment, but darn it, we need to make some progress somewhere! So, I loaded up the car away we went. Luckily, Christina only had to make a few minor adjustments, so it was a quick one. Harlie slept the rest of the day! And that night! I know she doesn't get good sleep at the hospital, so I guess she needed to get caught up.

Well, she has been doing great wearing the helmet. I can't believe how well she tolerates it. If it weren't so hot, it would be a snap. I took her to the neighbor's this weekend, but didn't make her wear it outside. WAY too hot for that.

Tomorrow we have an appointment with her pediatrician; Tuesday, GI; Wednesday, PT; Thursday, ENT; Friday, PT and Ortho. So, another busy week ahead. Oh, and I think we're supposed to see cardiology again, but we don't have an appointment yet. Hopefully, we'll hear something soon from DC. Well, that's pretty much it. I hope you all had a nice weekend.

Take care,

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