Saturday, May 28, 2011

Where have I been?

Crap! I am so behind! Yesterday it dawned on me that I have a blog and when was the last time I wrote on it? So not like me to be so darn behind. The funny thing is there is a post in my head that I want to write. I go over it and over it. But never sit down to really get after it. Last Saturday Andrew and I renewed our vows and I want to share why. What happened between last May and this May. I want to share pictures. But I really need to share an update on Lily. The reason this blog exists.
So let's back up a bit. Surgery site is completely healed. She is totally back to normal. We turned it on last Thursday, but the setting is so low we aren't seeing too much change. Now every 2 weeks we will be driving our happy butts to Phoenix to slowly bump it up. All three kids. In the summer. In Arizona. In a van with sucky air conditioning. Anything for seizure control.
She had a sleep study, I think it was two weeks ago? Andrew took her. He said it was like staying to the Ritz! They called with the results and said she is experiencing sleep apnea and now we are referred to a pulminologist. I am not sure what the next step is, a mask? Ugh. We knew she was doing this so it is a nice confirmation, but still sucks. We see a cardio on the 10th. It's like all these new Dr's that we are not used to. I was happy with just the Nuero, Geneticist, and Eye Dr. Now we add two more? And on the heels of being given a new neuro.
I didn't call around for summer schools in time because I wasn't sure I trusted any of them since she stopped being able to attend Foundation for Blind Children, then I got one recommended, called and it was too late. So I am afraid it is going to be a boring summer for Lily. I am working 3 days a week now and she she'll be home with respite when I am working. But they won't be able to do much at all. No walks in 115 degree weather. No outside play. So pretty bummed about that. We'll have to think of some fun things for her to do inside. Maybe whipped cream play. Sensory buckets. I think the other 2 will go to Oli's sitter for 2 days. I'm not sure exactly how it is all going to work out. Child care during the summer will cost almost as much as I get paid.
Wow ok. Done complaining. Holy crap. No wonder I haven't posted much. Negative Sally here.
I love working now, but last year was easier being home all summer with the kids. Well... easy??? Ehh... but I felt better being the one doing things with them. Now it is going to be a whole lot different. Darn it why didn't I become a teacher?
Anyway. Working on my post about our renewal. Pictures included so check back. I promise I won't be away so long!
PS I am in charge of IFCR's newsletter and I have been working on that as well, so I am a busy little bee. Not just sitting in a corner whining all day long which is apparently what it looks like I do.

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