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!!"

The Good, The Bad: version 1.0

It was just one of those days that is easier to sum up with a list of Goods and Bads. I'll do the Bads first since I'm into the Polyanna approach to life. The Bad: *Not five minutes after getting up, I broke one of our glasses...inside the dishwasher. Gary helped me pick the shards out of the heating element.

*When I went to start the car, I noticed the ipod was low on juice, so I plugged it in and I'm pretty sure that's when it decided life was no longer worth living. No power, no apple thingy, nada. Not even plugged into the wall :(

*At her GI appointment, Doc informed us that there are indeed too many eosinophils hanging out in her gut, more than the last biopsy. Now we will do the elemental diet for three weeks which translates to yanking all (four) of her solid foods and going formula only. That also means another biopsy within the next month and a half.

*No food means no Speech Therapy, just when an appointment opened up on Wednesday. She doesn't necessarily need the speech part, but this particular therapist does "eating therapy" for kids with texture and sensory problems.

*Mia is now anemic. Even though her iron level is good, her test still came back saying she has anemia and from what Doc said it isn't surprising. Apparently people who are chronically sick can become anemic even when they are consuming enough iron... I'm still trying to get my brain around that one. Hello, Library.

End the whining, and now for The Good: * We got all of the glass out of the dishwasher.

*I fixed the ipod. This may not seem like a big deal, but for anyone who knows just how electronically challenged I am, it is indeed a big deal. I'm pleased whenever I get a blog posted successfully.

*The level of eosinophils is not so bad that her gut is trashed or in danger of becoming trashed anytime soon. We could theoretically go on feeding her the way we have been, but we all want a definitive answer of some kind. We do have to prepare ourselves for the possibility that the tapioca could be part of the problem, but with an amazing nutritionist we aren't as frightened as we could be. There are other carbohydrates to try. We took 10 steps forward over the summer, so two steps back still leaves us with 8 in the positive.

*Her nutrition labs, other than the anemia, look awesome. She is getting everything she needs and it seems like her body is using it properly.

* We had fun decorating the tree. Hey, I needed more good than bad and you're just a scrooge to lump a Christmas tree into a category other than good. Mia had more fun with the box. She thought of it as a train. She has a thing for pretending to be a train lately. I'm not entirely sure I know where it came from.

*Oh I have another good! Disc one of Greys Anatomy Season Three is on it's way from netflix. That's good!

CHOO CHOO!

Thanksgiving

Our Thanksgiving was very nice, very wet and very stress-free! We had breakfast with our friends that live a few houses over. Their families came over and it was a full house! We enjoy spending time with them because they are so conscientious about making sure their hands are washed and the kid's table is cleaned up immediately so that Mia is safe. Even though it was a breakfast we weren't on edge or so paranoid that we couldn't enjoy the morning. Mia loves playing with their kids/nieces/nephews so everyone has a good time. I left the neighbor's house early to star in on the sweet potato and green bean casseroles (ended up burning the first, darnit) but not before making that obligatory grocery store run for whatever it is that everyone always forgets. Never fails!
Casseroles made, we go over to a friend's house on post for a dinner gathering with a few people from the unit. The kids had a great time being noisy and playing. Tom makes the best ham and baked beans, and a lot of it! If there were nothing else to eat you wouldn't starve!

I'm a bit embarrassed to say that I did participate in Black Friday... I went to JoAnn's because they were having a killer deal on several things I needed to do the presents this year, not to mention the cheap pre-lit Christmas Tree that was hard to pass up. I had a list, I went in and I got out. Well, I would have if I had not been a supreme idiot and left my cards in the other handbag. Luckily the cashier took pity and held my things while I drove back to Eagle River (slowly, since my license was among the cards.) That prompted the one selfish purchase of the day; I got a wallet.

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!

Thanks for sending the pony, Mimmy! Mia also loves her new blue outfit. She put up a huge cattywompus when I put them into the laundry basket so we had to have a try on session immediately. She's always super crabby after her infusions

Mia had her IVIG infusion at Prov today. Other than the ladies in Admission not knowing what to do, it went off without a hitch this time. It takes a good two hours for the pharmacy to mix the stuff so we played and read books and fed Rabbit some of her special formula. Rabbit is now in the "bath." We had an erraned to do which leads into The Test! The Subaru handles like a dream! I feel very safe inside, which says a lot because Anchorage is the frozen juice section for stupidity; it's all concentrated. With only two highways, I don't know why I'm surprised. We had to go into an unplowed neighborhood to pick up a Freecycle thing, and I had zero problems. This thing rocks.

Mia has acquired a new slide from our FOCUS interventionist, Karen. Not that we even had room for it, but it was a big deal to slide at playgroup and it gets her climbing and using the leg that has us worried. She has always favored her right leg and it has everyone a little concerned so we are seeking a PT evaluation. Every morning, we must slide at least once before starting the day! We've been drafted into the Christmas pagent at church. I did mean to say "we." Mia is to be an angel, but she is the littlest and most mischievious of the angels so I'm going to don a pair of wings to pull rank on her!

So this is my Outback! We've been getting a decent amount of snow so this weekend has been a good little practice time for me. The real test will be taking Mia to her IVIG infusion at Providence in Anchorage tomorrow. That means snow AND idiot city drivers. Everyone send some good vibes our way!