Laelia Sky

It’s been such an up and down week that I don’t even know where to begin. I think my feelings must be tied up with this goofy Southern California weather: one minute the sky goes black and we get heavy rain and 80 mph winds, then the next minute the sun is shining bright as can be. (And the drivers down here behave exactly the same way in either situation. :-/)

One of the very positive “Up” moments happened yesterday. We received a gift from dear friends that solidified our decision to go up to the arthrogryposis clinic at Seattle Children’s!!!!  We called up the clinic to discover that ALL of the doctors we wanted to see were still available!  This will be our first time at an arthrogryposis clinic because we don’t have anything like that around here! (Well, it’s pretty rare everywhere really.) We did piggy-back on a muscular dystrophy clinic when Lali was little, but amyoplasia and muscular dystrophy are very different. And it was the muscular dystrophy clinic that had us get the muscle biopsy that showed inconclusive results since arthrogryposis, the kind Lali has, does not have any genetic markers or known causes. Maybe the arthrogryposis clinic would never have had us get the biopsy. I think I’ve decided not to think about it too much.

Part of the excitement of this clinic is the chance to see Dr. Judith Hall. She is the expert on amyoplasia and a bit of a celebrity in arthrogryposis circles. She is seeing Laelia March 31st!  Eeeeeeeeeeeeeeee!! We are also seeing Dr. Song and Dr. Hanel for Laelia’s orthopedic second opinions, and just in time for her next surgery evals! I just spent a few hours today trying to get several, six to be specific, different records to forward to the clinic. We needed her newborn records from her pediatrician, OT records, PT records, surgery records from her orthopedic surgeon, orthopedic records from two other orthopedic doctors and the biopsy records from her neurologist.  That is a ton of paperwork and apparently medical professionals have decided that copies of their work should cost me 25 cents A PAGE!  Blarg!  Then my boss walked up to my desk with paperwork that showed my time off request for those dates was approved! I described this whole process to some friends today as part of a crazy and frustrating and fulfilling day!

The other exciting part of this trip is that Laelia and I (Mommy) are going with a friend and her son! I love friends! So fun times ahead. In fact, I have a lot to be grateful for since without this friend I would have never heard of this clinic.

And I’ve decided that this trip totally outshines the “down”s of my week. But one thing I did want to put out there, for those of you who are in the know, is a plea for prayer for my extended family. Whatever the outcome, hard times are ahead for my cousin, well, cousins really. They are in the middle of a heartbreaking situation, and just have to trust they are being carried through it.

Well Laelia is demanding, “Rain please!” So this is my cue to grab her and run out into the storm while she laughs and wiggles. Then we come in soaking wet… which is only fun for one of us. *sigh*

This entry was posted on Thursday, January 21st, 2010 at 7:13 pm and is filed under coping, hooray. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.