A List of Incredible & Not Incredible Things

It’s been a big week at Casa de Kidneys and Eyes…

- First, a big announcement that I’m working with Build-A-Bear Workshop for Support for Special Needs. They’ve asked us to share Quinnlin’s experience with special needs through her eyes with a new pal, Champerina. I have to say, the girl is loving it. She hammed it up for the first post, which is here on their brand new blog. Go and read and comment and share. They are helping support Support for Special Needs and that allows us the community that helps special needs parents and kids, so I want to make sure our supporters tell them thank you! We have some other work we’re doing together in the future and I’m so proud.

- I spent much of last night in the E.R. because of kidney stones. It’s not a good story – certainly far from the story above – because I had two stones in a very sensitive place and it hurt quite a lot. It was the worst pain I’ve experienced and so, it wasn’t so much fun. I’ll be getting them blasted and that involves pain meds, so there you go. Why would I tell you that? Just to illustrate we’re all kidney centered around here. DO NOT DRINK OUR WATER.

- As a result of the work I did last year for the BlogHer Special Needs Mini-Con I’m proud to say that BlogHer has asked me to be on a committee with some fabulous women to plan this year’s special needs track. The track is expanding to the day before BlogHer and it’s part of their HealthMinder Day. The great thing is that I’ll be able to participate more in BlogHer this year than last and that’ll be cool. I’m so excited about it and thrilled they asked me to be involved again this year!

- Gage tried out and made the track team. I think everyone made it – it’s a small school, but I’m so happy it’s physical, he followed through and he’s happy to have made the team. All good stuff.

- Quinnlin was sick for many days and she ended up at the doctor a few times and then the E.R. anyway and so she got better and now her head is stuffy again. Time for ENT appointment. Again.

- I’m looking for a new pediatrician office. Last APRIL I wrote this letter after a series of incidents. I faxed it twice. Nada. I was in the office in July or August and mentioned the incidents and the letter to the doctor – one of our favorites – and she assured me she would get to the bottom of it and contact me. Not a word. So, we got settled into school and fall and flu shots and so here we are in February. Over the last month or so, we’ve been there three times (or 4?) times for regular sick kid stuff. The last visit I was handed a survey for the visit before the (new) doctor came in and I was able to list my issues. I literally wrote “Generally I am not satisfied with the practice right now and considering leaving because of incidents in April I’ve tried to address three times.” (or something similar). I felt bad for the new doctor, was apoligetic, telling her I realized she had nothing to do with my feelings but explained the situation. I watched her hand write a note, attach it to my survey, and walk it to the founder’s door. That was over two weeks ago. I’ve heard nothing from the founder. As much as I hate the thought of changing peds, it must be done. I’ve talked to one office and ruled them out in about 3 minutes. I have a message into 2 others and have a couple more to call, thanks to good friends who know people.

Obviously I’ve not wanted to switch, because dang, I have enough stress than going through a new search for a team for the next 8 or so years but look I must.

- Gage is still steroid free. We’re doing weekly labs, hopefully that’ll end soon. Even if he goes back on them, I’m so happy we tried. I’m so happy right now it seems to be okay.

So I’m ending this with a photo that I love because it seems like a good day for cuteness.

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