Santa and Seattle

It has been a week since we got back from Seattle and despite my best efforts, I haven't written about it due to this thing called Christmas Chaos. The planes and rental cars were all where they were supposed to be, as was the Travelodge so there were no kinks there. The airport was much farther from the motel than I thought so we drove clear across Seattle, which reminded me very much of Atlanta, but nicer. I actually prefer driving through the city there over Anchorage because people didn't seem to be quite as challenged in the courtesy department.
Children's was literally just around the corner from us. Everyone was very friendly and after taking the most detailed history in history, Dr. Rawlings came in and explained that they truly didn't believe that she has Hyper IgE Syndrome because all of her previous lab work showed that her body is responding to vaccines and is not deficient in any other areas where she should show abnormal cell movement. Even better, they recently isolated the gene that mutates in about 90% of the patients diagnosed with HIES. They now have a blood test that they do in their lab, so we will have a definitive answer in a few weeks.
It was becoming very obvious that she didn't have it, even before the Seattle visit, but it's nice to know that there is an actual gene that they can look for. It takes a lot of raw nerve out of life right now! We can do allergies, eczema and a gastric disorder, and we can do it gladly if that is ALL there is to deal with!
The pictures below are from the FRG Christmas party. We were so sure that Mia would have a meltdown if we tried to have her sit with Santa. She wasn't into it when he first came into the room. After she noticed that he was giving out presents, he was quickly a member of the club.
There was a craft table for the kids. It lasted longer than we thought it would!

This picture was timed perfectly since she didn't stick around! She took the gift and ran!

Walking around with her new doctors kit
Mia actually sat in his lap...after she figured out that he gives out toys!

Decorating the tree!

Okay, so the tree has actually been up since the day after Thanksgiving (for the first time EVER, might I say) and I'm a bit behind on the updates and whatnot, but I DO deliver!

Since the last episode, we have had another visit with her Gastroenterologist. We reviewed the biopsy results, and I'm sorry to report that they aren't any better. They aren't much worse, either. The number of eosinophils is certainly elevated above the accepted number (24 per microscopic field view, hers are up to 50 in several different areas of the lower GI, absolutely ZERO in the esophogus and stomach!!) We kept her on the budesonide, but are not seeing results. We are still getting some wicked diapers. We haven't talked about Cincinnatti Childrens, but I feel it coming and I'm ready. Cincinnatti is the eosinophilic Mecca. It is to the gut what National Jewish (in Colorado) is to skin and lungs. There was the suggestion of an immunosuppressant called 6MP (6 mercaptopurine, if you wish to google) that was also brought up. The reasons get too complicated for my tired brain to explain at the moment, but I can see why it was suggested seeing as her immune system is overactive. However, I am in very few ways a fan of this idea. It's normally used for leukemia patients and in some cases of IBS but I would go to Cincinnatti before I put her on that stuff; the side effects seem to be precisely what we are trying to get away from.

On to the consult with her Endocrinologist! She didn't have many concerns. Her view on Mia's small size is that A) Neither of her parents are very big and B) she has been on steroids, which do lead to growth problems. The doctor said she does deserve to have the basic workup, checking hormone levels and other endocrinology type things. I have to admit I'm not as educated in this particular branch of medicine.

Then there was her appointment with the new dermatologist on Post, whom I happen to like. I liked the previous derm, but she moved to a new duty station. She was a good combination of conservative and out of the box. She wouldn't get prescription-happy, but helped us out by looking for various deficiencies when we were intitially hospitalized for FTT. The new doc didn't have much to add except upping her dose of Atarax to keep the itching down, and she prescribed some lotions and ointments to try. We're pretty much an "on call" type patient at the base clinics. All I have to do is say the child sneezed and they practically offer to pick us up. They've spoiled us; I doubt the next duty station will be so attentive. Elmendorf has followed her since birth, they saw the progression. It will be interesting.
And now for the pictures!


The box for the tree is MUCH more fun than the tree itself!


Mia takes decorating into her own hands! She has her own ideas about where things should go. There are clusters of ornaments and gaps elsewhere but I don't want to change her handiwork!


We have to redecorate parts of the tree daily. It's just too enticing to leave alone despite the "no touch" rule. She is very gentle and seems to understand that some things need to be handled with care. She waddles up to me holding an ornament and a hook and says, "OH NO HANGER!!"