Big News!!

We've been trying to secure an appointment with Dr. Ochs at Seattle Children's Hospital since we came back to Alaska. They needed the records from Atlanta and the first attempt to send them got botched with a wrong fax number (most likely misread or scrambled) and after not hearing anything for two and a half weeks, I called Seattle to start the process again. It worked because we got the call this morning! Dr. Ochs has decided that she is worth seeing! He is an expert on many hyper immunoglobulin disorders, so his opinion will be paramount for her diagnosis that Dr. Levy gave in Atlanta. We (we=me, gary and the various docs up here) are not convinced that Mia does indeed have Hyper IgE Syndrome. She fits nicely into the dx (short for diagnosis) but the dx doesn't fit nicely around her. It's like a puzzle piece in a slot that is too big for it. She does have two of the three hallmarks for the HIES, but her blood work is normal and that is not consistent with this dx. Regardless, the treatment is working so I'm not concerned with a name at this point. Time is probably going to be the biggest determining factor and IVIG is used for so many things, it isn't disease specific. It has been used for severe recalcitrant eczema before so this treatment isn't so far out of the box that we wouldn't be able to get it again. So, the appointment is for 11 December. When the scheduling girl called she said that someone cancelled an appointment for that date, would we like it? I think my response was something like "You betcha." I think we have most of our important things in line, like the authorization numbers, the appointment and the airline reservations. Our orders will be cut and ready the first week of December and then we just have to confirm the flight. The lodging, rental car and food will be out of pocket but it will be in our orders so we can get reimbursed for it. Unfortunately, we've decided that Gary will stay behind because they only cover one adult to go with her since it is not a major procedure. I think the biggest thing that could happen would be a blood draw, so while it would be great to have him there, we could put that $600 to work elsewhere, say that Ru we just got :) It is better this way so he won't be charged leave time and he trusts me to relay accurate information (I'm practically going through med school anyway) and keep him in the light. So 10 December it's wheels up, then we get back on the 12th. That was a nice thing to wake up to.
The picture above is from her FOCUS appointment this morning. We didn't even have to tell Mia how to play with the SitNSpin, she got it on her own after a few twists! Karen brings different toys and activities to each appointment. They all have some developmental purpose, and most of the time I end up asking "Why didn't I think of that?" When I worked at the Child Development Center, I knew that everything we did and played had a teaching purpose and a developmental punchline, but somehow it's different in your own home with your own kid. It feels like it's "just playing" when she is actually learning. It's an environmental mindset for me I guess. I'm looking for some books that have ideas for different learning play and games so I won't get stuck doing the same thing with her. It's nice that Karen brings some spontaneity but I want to offer something new myself. There is a book called Slow and Steady Get Me Ready that is supposed to be a very good activity book from birth to kindergarten age. I bookmarked on on Ebay then missed the bid, dangit. I feel like I'm doing a decent job with what I have and what I know, the kid can count to 12 and says things like "Wow that's amazing!" so how off track can we really be? Gary loves hearing her little quasi-sentences and gets a kick out of the Daddy's Home greeting he gets (most) every day. He taught her the loudest, roughest duck quack, which I didn't know about until the pasta isle in the grocery store. That was fun.

The picture above is more for bragging, I'll admit. Mia has grown a lot in the past two months, mostly filling out where kids are supposed to. She is still about 34" but now weighs 23lbs and 12oz according to the measurements taken at the hospital yesterday. So all of those 24 month clothes we picked up in Ga are too small now! I have been trying to squeeze her into shirts until they absolutely HAVE to go into The Box. Now, when I sound like I'm struggling to get her into a shirt she says, "Suck it in!" She's a riot! Anyway, in the picture she is wearing a pair of corduroy pants I made for her. I have a lot of fabric and patterns that I have been squirreling away for who knows what, and they have come to good use this month. I just keep my sewing machine set up on the dining table (sewing room is overrun with the flooring project that never ends) because I crank out at least one garment a week. Then there is JoAnns... I still go in and can't come out without one yard of something that someone would look good in!