We have a Big Girl on our hands

The past two days have been a big deal in the Dollman house! Mia has been diaper-free and has only had one accident! We still cheat and do diapers during nap. We absolutely have to at night since she is on the continuous feed. We won't be able to get around that one until she is old enough to either take the pump with her to the bathroom or stop the feeds, unhook and then set it up again.
Today we decided that it was time to bring in the Big Girl Bed. We've been holding off because of the feeding pump. Our fear is that she will try to get up and walk away from the stand, pulling out the G-Tube out and winning us a trip to the ER in the middle of the night. Other parent's that I correspond with through KFA said that the kids learn very quickly that they only have so much slack before they need to stop and reassess the situation, even at this young age. I'm nervous and I'll probably camp outside her door and fly in at the slightest noise. We took Chris and Angie's advice and tried it with nap time first. She didn't nap, but she did stay in the bed and look at her books. We let her tuck in her whole posse of stuffed animals (she nearly doesn't need a guard rail, they are piled so high!) and practice climbing in and out. My monitor will be cranked to full volume tonight!
I think we also have good news on the intestinal front. I'm hesitant to say it, but I believe I saw a "normalish" diaper today. Since we started the budesonide again, the mucous has cut back though it still has a bit of rusty tint. I'm sure it's going to take more than two days to stop the bleeding but this is a start! It looks like we took away the one med that was keeping things between the navigational beacons. We took away the gut-candy and it has been throwing a tantrum ever since.

She helped Daddy put her Big Girl Bed together

She may not get her ABC's in the right order, but she can name a screwdriver AND a pipewrench!

First try

Our GI flew in from Arizona!

Today was our first visit with GI Doc since his move to Arizona, where they apparently have enough sun for him to get a tan. He didn't like her micro nutrient labs or her CBC and sent our dietitian on a mission, more tweaking of the formula. She is pretty anemic and low in carnitine, so we are going to get those in IV form to give through her G-tube (yes you can do that. You can even do it with IV benedryl, but it makes Mia super grouchy). We are adding a packet of vitamins to the formula because she's just too low in too many nutrients, like zinc. You can tell around her mouth and her diaper area. She also has the sickness shiners under her eyes, I tried to capture them in the first closeup picture, but the flash really takes the oomph out of it. SO. There is blood in her stools, she is having vomiting episodes, her weight is dropping, no appetite (I'm having to tube more feedings than ever), anemia and poor absorption. Most of us were baffled by this but he had a suggestion that made a lot of sense; her sustaining meds were switched up about two months ago, when several of these symptoms began. The pharmacy had me take her Budesonide out of the mix when GI Doc meant for it to continue with the introduction of the Ketotifen. Not having that budesonide basically triggered an Eos flare so her gut is bleeding and sloughing and is too irritated to absorb nutrients properly.
We started her Budesonide again and were going to give her a five day punch of Prednisolone when I spoke with the pharmacist after noticing that they gave us big white pills. I've been at this long enough to see a big flapping red flag and found that they had lactose in them. Now we have to wait for Monday to roll around before getting the Rx corrected. I'm going to miss this doc when the time comes for either us to leave or him to terminate his contract with Providence. He is just so proactive and intuitive and can scrape you off the ceiling when you've gone batty with worry. We still have our amazing dietitian, and I've already told her that she should just consider moving with us. Next week we visit with the dietitian, endocrinologist and the allergist. Sometimes we feel like we're running a circus!

You can see her mouth getting sores from low zinc, and the sick or "allergic" shiners

She wanted a tunnel, but the mats would only allow a tower

Girl loves her leg warmers. She calls them "wiggle wormers"

Mommy has to do some shameless bragging on the dress

Mia-ness

We have been bogged down with a slow computer, so this is our photographic catchup! Mia's last IVIG infusion was on Thursday. Of course we had to go out with a bang, so it was the only infusion to which she reacted. Her heart rate went up and she developed hives, but she didn't seem to notice because Dora the Explorer was on the tv. After a dose of IV benedryl she was as good as new.
Much of our weekend was spent on home improvement projects, which I'm sure are for the birds. One project leads to another! Gary was going to lay the rest of the bathroom flooring but found that he'd have to either do a half-hearted job or pull the cabinets away to do it right. The cabinets are old and will not go in the same way again, so we picked out new cabinets and sinks. We also discovered that we'd have to remove the wallpaper, re-plaster and re-paint. Hmm...if we are repainting the bathroom, we may as well re-paint the rest of the house since it has to be done in a year anyway. Off we trot with half of Home Depot. We also decided after much debate that we'll just re-carpet the stairs. It's safer for the toddler and the clumsy mommy. Luckily we've been stashing away some "moving money" for such projects in anticipation of selling/renting. The painting will be the most annoying, having to move things around, cover and deal with the fumes. It will be all off white and beige, that way it will be more appealing to more people. As obnoxious as the projects can be, it's nothing like what our friends Ben and Sierra are doing. The entire lower level of their house flooded, ruining the kitchen and all the flooring. I do not envy their kitchen endeavor! We are going to leave the kitchen as someone else's problem! We'll replace the garbage disposal that we managed to fry, but the cabinets are on someone else's tab.
Easter was pretty Easter-like. We helped flower the cross that they erect in memory of a young boy who died of cancer when he was 8. Unfortunately I think we got too friendly with the flowers because one of Mia's eyes puffed up and started to ooze a bit, but calmed down after getting away from them. She knew exactly what to do with those Easter eggs! Those colourful things go into your basket and you have to hunt for them. I think every kid must come hardwired for some traditions. She did get bowled over by a very excited young guy but got some effort-less consolation eggs out of it! The nice thing about that particular hunt was that a lot of the prizes weren't food items but things like mini spyglasses and bubbles. We attempted to go to a hunt on post with some friends but there were bright orange warning signs saying that their eggs only had three kinds of candy and all were peanut related. I appreciated that they put the signs up and was very glad that Mia didn't really get what we were there for. As far as she knew, we were just walking around with a pretty basket.
Our big adventure for today was a trip to the ER that turned out to be totally unnecessary. You know how your car will make the most awful noise forever, then the moment the mechanic starts the engine it purrs? Toddlers are like cars in that respect. She woke up looking very peaked, wasn't interested in a cup and just wanted to lay on my chest. She got sick suddenly but seemed to feel a little better afterwards, so I tubed some formula into her since she wasn't taking it by mouth. It was coming out of her mouth before I even had her feeding line disconnected. This happened a couple more times before I called her health nurse and said that I was going to take her to the ER because she can't get dehydrated. Once we were back into a room with the nurse, she started to perk up and get chatty (she got sick one more time in the car on the way, mind you) and was interacting with the doctor. They tried to contact her GI in Arizona with no luck. Meanwhile, the kid is be-bopping around the room talking about all the tubeys and buttons and blah blah blah. I got the doc in and said that the anti nausea medication seemed a moot point and that I'm afraid we're dealing with reflux. She has done random vomiting a lot lately, but this was the first time in a while that she wasn't able to hold her fluids down. Luckily they understood and said to come back if we needed to.
Seriously. Toddlers and cars.
And now about Denver! We received the referral papers in record time! Tricare can't make anything easy though. The paper simply said that it was for Children's Hospital and it gave the codes for the types of visits and a phone number. The number was for the hospital operator, so I had to transfer a few times before I got to the Eosinophilic program. The person I spoke with was very friendly and said they usually have the patients start the coverage with National Jewish and get the allergy testing etc before coming to Childrens. We also have to work out the new referral because it's a multidisciplinary program requiring an actual team. Mia's docs up here "work together" for her care, but as separate entities that just consult one another before doing X drug and so on. This program has the GI, allergist, dietitian and feeding therapists literally working together with patients. So, I called her health nurse (amazing woman, I'm going to insist that she come with us when we have to move!) who said she and the case manager would work it out. Fingers crossed!

She loves this hat and wears it with everything, kind of like the pink cowgirl boots.

Mia and Daddy

Learning the Potty business is much easier when there is less to pull down!

Mommy is allowed to brush her hair again. I took a friends advice and started calling it a "hair party"

We have a "hair party" every day!

Arranging the window decals that Grandma Dollman sent. After the initial placement, I have been finding them all over the house. Thanks.

Mommy got back light-happy

Rawr!

Easter

Wearing the Easter dress that Mimmy and Pop Pop sent

Grandma and Grandpa Dollman sent her an Easter basket with a tutu and some goodies

She was singing rockabye baby to her new lamb

Hunting Easter eggs at church. Some of them had little non-food prizes!

She had a monopoly on the window sills

Probably a minute before she was run over by an overeager egg hunter

Hunting eggs at home after church

She was pleased that the basket's tutu was for her to wear!

Happy Easter!

Hatchers Pass and Mommy's Checkup

We completely missed out on the daylight savings fun and missed church, so we decided to head out to Hatchers Pass for some snowshoeing. We really should have gone in bathing suits! It was so sunny and beautiful and we had to shed layers not too far into our hike. It was busy with other snowshoers and cross country skiier, a lot of snowmachines and a handfull of snowboarders and telemarkers. One little area was commandeered by families with sleds which looked like loads of fun. It turned out that Mia's little friend was on one of the sleds and it sounds like we just missed each other. We hiked up to the old Independence Mine. It was wild because the snow had us looking over the roofs which would otherwise be several feet over our heads. It was certainly a neat perspective.

Today I went back to the doctor for my checkup. Luckily he said that my pancreas and gall bladder felt normal and the tender area was actually over the stomach and is likely an ulcer or just reflux. Both can be taken care of with a Rx for Nexium so I'm pretty excited that my pancreas isn't going to explode. Unfortunately my rheumatoid factor (whatever it is in the blood they measure for RA) is very high so I have to see a rheumatologist. The one office in Anchorage won't take Tricare (can you blame them?) so I'll have to fly to Washington. That is still a ways off because the referral won't be finished for at least four weeks, and only after it is "done" can I make an appointment.

We are also in the process of getting Mia's referral for the eosinophilic program in Denver. Denver Children's is like the Cincinatti of the West and I have heard nothing but praise for their doctors. They don't just do a little one hour visit and send you back, more like DAYS and weeks. One family I'm in touch with said their last visit was three weeks long and worth every minute. I'm very anxious to see the difference in pathology reports since they eat, sleep and breath eosinophils. Their criteria for a biopsy is very strict and more uniform than what is usually required for an "average" hospital. The hospital here is ready for us to PCS to a place that has more options for Mia, and Denver is at the top of the list because of their Eos program and the fact that National Jewish is literally down the road (they are top notch in asthma and allergy, and the gold standard for severe eczema).

Thank You

We are members of an online support community for kids with allergies/health obstacles and I find a great deal of camaraderie and comfort in the forums, talking with people who deal with the same things that we do. Every time a holiday rolls around, be it Thanksgiving, Christmas and in this case Easter, there are always posts that break my heart. The latest is from a woman whose family simply didn't invite them to their traditional family Easter brunch/egghunt. She asked her mother why plans weren't being made and only then did she find out that they were just going to do the brunch and hunt without them. Everyone seemed to feel that her child's allergies and consequent dietary limitations weren't fair to the other kids in the family. Somehow, food and an easteregg hunt meant more than having their family together.

So I'm saying thankyou to OUR family for being so supportive and considerate. We have never felt like a burden or that Mia is a killjoy. When planning events it has always been in a safe place with Mia's health a paramount concern. Grandma washed her clothes in our detergent on days when she knew she would see Mia. Mom and Dad gave their house over almost entirely to Mia's routine for the summer, The Dollman side always make sure that the birds and cats are relocated to the basement and a month of de-dandering ensues before we visit. No one seems to roll their eyes even on the inside when they have to wash hands after touching food, or not have a peanut snack... we encounter so many people who just don't get it, but thank GOD for having a family that does!
We love you guys!