The biopsies are in...

Our visit to the Eos clinic on Tuesday was not my favorite so far. The biopsies certainly showed more eosinophils than the previous set, but it also showed too many lymphocytes. Two kinds of inflammatory white blood cells in places/quantities that is not appropriate seems to have the doctor thinking it could be a different condition. At this point she is not officially "un-diagnosed" with EGID, but it's starting to behave like another Inflammatory Bowel Disease. After googling IBD, it seems that the phrase actually narrows it down to two diseases, Chrons Disease and Ulcerative Colitis. Neither are fun and I do not want to trade Eos for them, but the bright side is that those conditions have BOOKS written about them. The most we can get with EGID is a decent internet article once in a while (and even then it usually focuses on the esophageal version, not the lower GI system.)
If I had to guess, I'd say Chrons based on some of the diagnostic criteria. It's a scary thought, because you pretty much need to stay on medication for the rest of your life. There are other schools of thought out there, mostly the Don Colbert guy but he seems a bit fanatical for me to take him seriously. I trust medicine over evangelism. There are other problems on the side that happen with Chrons like joint, liver and eye inflammation and these patients usually end up having surgery for obstructions.
We're giving her a two week punch of steroids to calm the gut down and see if that doesn't help with food introductions. Friday we go to Denver for an abdominal ultrasound and Monday we go in for a sweat test to finally close the door on Cystic Fibrosis. For some reason she never had a sweat test done, but had very expensive gene mutation blood work done instead. Go figure.
I told mom that I'm not sure if I should cry or go to med school. Here we thought things were figured out, we've moulded our life around EGID and done some pretty extreme things to get it taken care of. I feel like a base has been yanked from beneath me. I think the thought that I'm well versed on something that could now be useless is just as frustrating as the whole situation returning to Mia Is A Mystery. I know I'll get books and just become an expert on whatever it turns out to be, but it's still a weird feeling that I'd compare to limbo. I'm not entirely sure what I should be googling anymore!
Our visit with the dietitian this morning showed that she's gaining about 11 grams per day which is more than a "normal" kid would really need at her age, but the weird thing is that even though she is technically gaining, she's been hovering around 27 lbs for more than 6 months now. The dietitian said it could be water retention, which happens when the gut "leaks".
Gary has a four day weekend for Labor Day, but two of the days will be spent at the hospital in Denver. We are planning to go to Cripple Creek via an old stagecoach road on either Sat or Sun and attend a hot air balloon festival as well. It will be nice to do something fun.
We had our meet and greet with the preschool today. They divided the class into two groups so things wouldn't be overwhelming and it went well. Mia played with play dough for the first time with no reaction! The director was amazing. She brought in this stack of papers that had lists of allergen-free school supplies and informed me that they are switching out the play dough for a wheat-free version and that all of their paints are free of eggs and milk! She found much more information than I found when I was looking more than a year ago. They've made a few special orders on other products that they weren't sure about and have been beyond supportive!

Uncle Chris and Aunt Angie sent mega blocks for her birthday. She stayed with them for an hour!

More bragging. I made a dress and had enough silk left over to make one from a pattern that I've been afraid of. It's a German design and the directions aren't illustrated like McCalls and the like. I found a semi-helpful online tutorial, but the pattern leaves so much room for you to add and change that the tutorial only got me so far and my imagination had to take the rest!

This is the tunic/pinafore part

Happy Birthday Mia!

I attempted Mia-Friendly cupcakes using quinoa flour, rice flour, sugar, tapioca starch and water, but came up with pale hockey pucks. They could have been worse, I didn't have a recipe after all! She was very polite and took three bites saying "Mmm..." with this look that said, "Wow, Mom, these are gross but I'm not telling YOU that!"

My "normal" cupcakes are Erin-Approved!

Having a blast with the Elefun game

Mia's New Tricycle

This is her early birthday present.

The bell is her favorite part

Her legs are slightly too short to peddle effectively!

She is so pleased with her new tricycle!

Mia holds the tires down while Daddy changes them

Just for grins!

Biopsy Day

Well, technically it's an esophagegastroduodenoscopy with a colonoscopy thrown in for fun. We got up at 3:30am and left by 4. The weather was ultra nasty and I'm NOT a night time driver, so the hard rain and non-draining roads were no tea party. We made it just in time, and I mean JUST in time. Mia had not had anything other than water for almost 24 hours and was beginning to demand carrots in the manner of a diva demanding hot towels and yellow MM's. We spoke to the doctor and the anesthesiologist and sent her in.

I wasn't expecting anything to be out of the ordinary but they did seem to find some ringing in the esophagus, some inflamed patches in her duodenum (first part of small intestine) and bumpy cobblestoning in her colon. While those things are not normal, they could be from the Miralax cleanout. We'll really only know if it's "damage" when the biopsies come back. We should hopefully hear something by Tuesday.

Tuesday we are already super busy with a speech evaluation (it's actually for feeding therapy, but you have to go through this therapist) and the review of the OT evaluation that she had two weeks ago. Her first physical therapy appointment went well, she's definitely comfortable with her therapist and has begun to show her goofy non-focused side! We also meet with the new preschool nurse to train them for any G-Tube encounters they might have.

Mia's Doc Hopping Week

Monday was our big skin prick test day at National Jewish. For those of you who've never had or seen a SPT, they use little needles dipped in allergens to poke at a grid on your back. As you can see, the welts are what they are looking for. The ink grid on her back is laid out in the same manner as the needles in their trays so they can tell what is causing a rxn. They usually give about 15 minutes for all rxns to happen, but it didn't take more than 5 for Mia. The giant welt at the bottom is peanut, the vertical row all the way your left is all domestic meats plus milk, and some of the other bigger ones are things like garlic, onion, cashew and corn. She had other smaller welts that we'll obviously still avoid.


We did get some strange negatives though! Soybean actually caused no rxn, but Doc said to wait until we get the RAST (blood test) results. She reacted strongly before, and since it's a legume like the peanut, we'll also bring in a soybean for the fresh food SPT next week (yes, we get to do it again.) Other negatives were sesame seed, english walnut and oat. I'm not ready to give her seeds and nuts yet so we're on day two of our oatmeal trial. She loved it yesterday but is being stubborn today. She's also super clingy and had to be held the entire morning. I wasn't allowed to go farther than two feet without her grabbing onto my legs and crying. It could be the gray weather, we're going to stick it out!


On Tuesday we drove back up to Denver to see the hematologist at Children's. It wasn't an emergency situation or anything, we just needed to find out exactly what kind of anemia she has. They drew some blood and determined that it's "anemia of chronic illness", not iron deficiency which means that iron infusions won't help. For this kind, treating the underlying cause is how you resolve it. Ball just bounced back into the GI court!


Yesterday we went up once more to see the dermatologist...a whole day early! Doh! The receptionist was great and worked us in so we didn't make a wasted trip. I'm always ridiculously early (just ask Helen!)


We had rain yesterday and the day before, and today it was downright chilly! I have pants and a sweater on which is odd considering the record highs last week! We need the rain though; maybe it will help revive our pitiful back yard.


It occurred to me last night that I will have a three year old this month. It also occurred to me during the bloody fit she threw at the commissary. We had a very mild two year old, even with all of the medical drama and everyone always commented on how sweet and well behaved she was. I've noticed it doesn't happen as much lately! It's mostly the quick frustration. She gives up so fast and gets angry when she can't make something work immediately. She throws herself to the ground in grand theatrics and just can't come out of the disappointment that she didn't master X-Task right away.


I'm POSITIVE that Mia has ditched the English language in favor of Elvish. She is coming up with some very intricate words with difficult pronunciations, and I've lost my translation manual.

Now that you're caught up visually...

We're getting settled into life in the Springs nicely. Gary says that it's too hot, but then he's outside for most of the day doing deployment training in a long sleeve uniform. Our neighborhood seems to be fairly quiet, except when the creepy ice cream truck comes by. The music isn't right, and the guy makes me shut the door and close the blinds. We have met a lot of our neighbors, many on our first day moving in. There are a lot of kids in the area around Mia's age and she adores the little guys next door. Their mom is very sweet and seems to be very sensitive to Mia's allergies, telling me that she keeps her eyes peeled for a pair of gloves so they can play in her house. I think I'd be more inclined to say gloves for play dough, but she seems to be less contact allergic than she was.
The house is definitely nice for being on base. It does have it's quirks and the appliances are bottom of the line cheap and drive me crazy, but as long as they work I won't complain too much! We opted against having cable and satellite again, we just can't find a package that makes us feel like we aren't wasting money on stuff we won't use. Anyway, having TV would bring down my productivity. I'd sit and watch those goofy reality shows. I have loads of sewing projects that I should complete before Mia outgrows them. We still have boxes to unload too, but it's mostly garage stuff so I can't possibly take responsibility for them.
There is quite a bit of nature, too. We had a rattlesnake on the sidewalk in front of our house. Gary went to the Jeep one evening and noticed it warming on the sidewalk a couple of feet away from him. Our neighbors had just walked their dogs there and had audible fits when they came by and saw it. Of course, Gary had to be Crocodile Hunter and held it down with a crutch while another guy helped close it in a bucket until the MP's arrived. I thought they would give the guys a lecture about professionals handling it etc, but the MP was young and said, "Cool!" We also had a black bear be-bop around the back yards the other evening. His mom and sibling were picked up just the week before for snooping around the neighborhood. Never a dull moment around here!

As for the medical care, so far we are very satisfied. I was afraid that the base hospital wouldn't give us the star treatment that Elmendorf did, but Evans is just as attentive, kind and flexible. Our New Erica is just as sweet and calming and is getting her port practice in for sure! Speaking of the port, we had a snafu this week. We were getting the most recent CBC, but she couldn't get blood. They tried everything on the books to get that thing to deliver but it seemed to be clotted. They sent us to the hematology office downtown expecting to have a special de-clotting drug injected, but they were able to draw blood. All I could say was "Are you serious!?" The nurse said that it happens all the time and they get patients from all over the city with the same problem only to have a new set of hands do just fine. It could very well have been the raging wild fit Mia threw once she figured out what the nurse was going to do!

The doctors at Children's in Denver and National Jewish are great! They said that they actually are leaning away from Eosinophilic Gastroenteritis and would like to explore and rule out other irritable bowel disorders (and there are MANY). They only place they did see a large number of eos was the colon, so if anything the diagnosis might be amended to Eos. Colitis. We tried a new drug, Sulfasalazine (an anti-inflammatory used for gastric disorders and other inflammatory conditions) but within two days it wasn't going well. Her poop was neon orange liquid, and I couldn't really tell but there might have been a little blood. She wasn't acting like she felt well and when we had a CBC done, it was starting to thrash on her white blood cell count, which is very scary. If your white count is too low you can't fight infection, so we kept a close eye on her temperature and activity level. Her white count is back up now, after a week off of the suflasalazine. Her anemia is almost resolved as well, just a few points low in a couple of areas. Dr. Furuta (the GI) was pretty sure that the sulfa. would work, so now he is ready to do an endoscopy/colonoscopy on the 15th to see what he can see. We have her eating a few foods that are not terrific for her, so if her eos are to be elevated, they should be right now. We might sneak a meat in for "good" measure. Right now we have rice, apples, bananas, quinoa, carrots. We also have a rice bread in the mix and it has a few extra ingredients for leavening and whatnot. We're definitely getting the "burned" smell at bathroom time so some thing's going on for sure. It sounds inhumane to flare her on purpose, but they need to be SURE she doesn't have EG, and eosinophils are not present when you don't eat the triggers.

On our agenda for the coming week is a visit to National Jewish with Dr. Fleicher for updated allergy testing. I've had the poor girl off of Atarax for more than a week in preparation. I believe they are going to do skin prick testing, which we never had because of her severe eczema. NJ doesn't do patch testing because it's relatively new as far as reliable information. I'm hoping they will get a new IgE count now that her skin is doing better. If it's much lower, RAST testing will be more reliable. I believe I've been keeping her from eating foods that might have been okay because their RAST score was indicative of an allergy. Now I know that a sky high IgE count will give inaccurate readings. So this is at once exciting and nerve wracking. The last thing I want to hear is that I've been depriving my child of food that could possibly be okay, but we'll be so happy to have even a small list of possible safe foods for future trials. So, NJ is Monday. Also on Monday we have a nutritional visit at the base hospital. Tuesday is a visit with the hematologist in Denver, to check out the anemia thing. It was difficult getting in there, so we may not need her now but it's better to go in and get acquainted in case of future needs. Wednesday we get to boogie back up to Denver yet again, this time to see a dermatologist. She isn't in a critical place with her skin, but I want to see if there is anything new and gentle out there, what products he is in love with etc. This one is actually a reschedule since I over booked last week and had to rearrange things.

Mia is now getting physical therapy as well. Karen and I noticed things about her run and walk that just didn't look right and tried to get an evaluation when we were in AK but never did work out. I was thinking I might be paranoid but the PT saw everything I was talking about plus a few other issues that could benefit. Nothing is major or life altering, but definitely things that could be nipped in the bud with some therapy and possibly some braces or shoe inserts. We also had a re-evaluation for occupational therapy but doubt that she'll really need it for more than feeding issues.

Mia is making friends and so is Mommy! We've been to the pool a few times with a group of gals that have kids her age. For someone who so hated bath time as a baby/early toddler, the girl is a pool kid to the core. Every day she asks "I wear baby suit? Go swimming?" More recently it's "Erin go swimming in pool? Mia wear baby suit in Erins pool?" Mia adores Caden and Erin! She gets so excited at the thought of playing with them. Helen and John are having a cookout next week, but I got my dates wrong and showed up this past week. They didn't turn us away :) They set up the pool and the girls had a very brief and COLD dip in the backyard. Naturally, my battery was dead so I don't have pictures.

Well, my butt is numb from sitting here uploading pictures for who knows how long, and there is dinner to be made!

Pikes Peak and Garden of the Gods

Garden of the Gods is a climbing and hiking area near Manitou Springs.

Mia could totally do that.

The road to Pikes Peak

On the way down you stop at a brake check where they use a laser thermometer to see how hot your brakes are. If they are too hot, they make you pull over until it's safe to use them again.

We actualy stood in line to have our picture taken! We're such tourists.

Mia was pretty excited about seeing snow

Messages in the ice

Settling in at our new home

Not bad for base housing!

First bite of rice bread (jury's still out on whether it's going wel or not)

Mia was a big help when it came to tape. Her favorite thing EVER is to peel tape, lables and stickers off of anything that has them. They are working on the futon in this pictures. It stayed in pieces for almost a week and a half because the bolts weren't with it!

Taking a break

Mia was so proud of her tape ball!

At this point we were still holding down Fort Stergius

I think we worked her too hard!

Grandma's 85th Birthday

Again, if you weren't hanging with the under 4 foot crowd, you might not make it into the blog! I barely have pictures of the older kids!

I GEET YOUUU!

Mia and her PopPop fixed Grandma's toilet

This is the only picture I have of Jessica!

This one's a ham for the camera!

I did manage to sneak a picture of the super rare older kids!

A flock of silly geese