Thursday, September 8, 2011

Mystery and Misery...

First, I want to thank so many of you for writing to me with your suggestions, support and ideas after yesterday's post about changing our diets. I was overwhelmed with mail from Switzerland, all over the U.S., Australia and England! Turns out it doesn't matter where you live - anyone can struggle and strive for change. As I sit here, I have a Taco Soup simmering in the crock pot for dinner - lots of beans and fat free ground turkey and corn. That seems healthy, right? I can freely admit that I am NOT a lover of cooking - definitely an "eat to live" person as opposed to a "live to eat". But I feel buoyed with support as I think about other menu ideas thanks to all of you. My meals may not be delicious - but I have to start somewhere, right?

This hasn't been the best day for me. I'm feeling a little overwhelmed with a very long to-do list and lots going on. Despite my list - and my mood - I kept my Dr. Trish appointment this morning. I normally don't like to leave someone new with the boys for at least two weeks...today marks Miss Anna's third day. But I made a commitment to myself to get back to seeing Dr. Trish regularly so I really felt it was important to go...and I'm glad I did. I would like to say I left there feeling "Zen like" and stress free, but that would be a lie. I think I'm pretty wound up and not having seen her for over six months definitely shows.

When I got home I got Gavin and Anna into the chamber and put Brian into the bathtub. It was a nice moment of the day - just me and my little guy splashing in the tub with his toys. When I came down I answered the ringing phone. When I heard Gavin's geneticist on the other end...I held my breath. I knew she was calling with the results from some of his testing. I wrote in a post back in July that Gavin was being tested for FG syndrome. It seemed to me...and to the genetic team...to be a very possible diagnosis for him. I admit that I hung my hopes on this a teeny bit - secretly wanting this (or really any!) diagnosis for him. Anything to "explain him". To my dismay, the results came back that Gavin does not have FG syndrome. It was a big disappointment. There are still possibilities out there and we're pursuing them, but for now Gavin will remain the mystery that he is. And that's okay. A title...an explanation...it would be nice. But nothing will change our love or our dedication to him or the way we treat him. I can promise you that.

So I hung up and regained my composure - got Gavin out of the chamber and into his high chair and started quickly feeding him before his therapy a half hour later. As I sat there, Miss Katja walked in! She popped by for a visit to meet Anna and see the boys. I was SO happy to see her and give her a big hug! And soon after, Gavin's therapists showed up. He was very happy to see Miss Janna after a long break...and then Miss Maggie immediately after.
He did a great job with both of them. With Miss Janna they worked on color matching and fine motor skills. And with Miss Maggie, he impressed her with his improved iPad skills. He consistently touched the screen in order to get his electric toothbrush (which is his current favorite possession!).

As soon as they left and the boys were safely in their cribs, I holed myself up in my bedroom. It's time to work on Gavin's re-authorization for home health services...something that is very important for him - and to me. It takes a lot of time - a lot of cooperation from his doctors - and it's very stressful. I also called our insurance company to check on Gavin's bed. If you recall, I wrote back in JULY that our insurance covered a special needs bed that I wanted for him. I was thrilled. Well, it's been one big stall tactic after another from them. It seems every week that I call there is something else that they need. It's a bunch of B.S., to be honest. The phone call left me infuriated. On top of all that, I'm also getting ready for a big consignment sale that I participate in twice a year called Just Between Friends - it starts the middle of next week. That also requires a lot of time and effort...but it's usually worth it in the end. And, of course, Gavin's birthday video. I can assure you that I will NOT be late like I was with Brian. And...let's not forget...quietly obsessing about pregnancy tests. I could find out any day and I'm not feeling super hopeful.

These all seem like small things - silly things, probably - and half I haven't even mentioned - but all of it piled up on top of each other - with a new person in the house to "train" at the same time - it just feels like a lot. I secretly want to get a hotel room this weekend so I can be alone and get through some of my "to do list" without distraction...and sleeping in would be nice, too.

A girl can dream, can't she?



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