My Beautiful Angel

Today, Jenny drove down from Georgetown to see me before my next surgery scheduled on Wednesday, 9/30/15. I really wanted to be able to meet her partway for lunch, but I knew if I did, that I’d be in bed the rest of the day. I’m about 3.5 weeks post-op now from my thyroidectomy and the fatigue and joint pain is getting to be a daily battle of conserving energy versus flares of pain. I get my first post-op TSH blood workup on Tuesday, the day before surgery. They said it takes 4-6 weeks for the body to rid itself of all the natural thyroid hormone that my gland was producing. I’m sure it’s going to need to be increased. I was on 0.05mg of levothyroxine before surgery, so we’ll see what this checkup shows.

It’s been a whirlwind of appointments. Dominic’s 504 Meeting was last week and they are recommending testing to get him more services. There is a lot of paperwork I need to fill out this weekend for that. Anna’s ARD was this week and though it ended well, I had a rather unpleasant couple of conversations with transportation and with her special ed teacher prior to the meeting. I had my pre-op visits with my OB-GYN, my urologist, and my pain management doctor in preparation for Wednesday. I didn’t quite realize the extent of what the plan was, so going over all of the risks and potential complications was quite a bit more overwhelming than I expected. Having Ehler-Danlos Syndrome has led to a lot of problems in between my belly button and my bottom. It’s going to be a very rough operation, two surgeons, about 5 procedures all together.

My sweet Jenny… my angel on earth… that’s what I’ve always called her. Today I thought of our visit as our “just in case” visit. I had the nicest time talking grown-up serious things with her. She’s 23 now, married nearly a year and a half. I am so proud of her. She is capable and intelligent, compassionate and giving, a mixture of confidence and humility that I’ve always admired. I told her more about EDS and the implications for her own offspring. I’m learning more about it every day and I’m hoping to plan a family trip next year to the Greater Baltimore Medical Center where the Ehler-Danlos National Foundation is headquartered. They have the top geneticists there and I think my mom, myself, and all the kids should be seen and tested.

New Braunfels portrait lifestyle woman photographer

Thank you for coming to spend time with me today, Angel. “I’ll love you forever, I’ll like you for always, as long as I’m living my baby you’ll be.”

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