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!

More adventures!

Mia is really taking her independence seriously lately. Today, she flipped out because I attempted to dress her in an outfit that she didn't approve of. I kept picking dresses and she consistently replied "NO!" I finally lifted her to the dress rack in her closet where she picked through each, one by one. After a lot of "Hmm" and "Nope" she settled on a purple and blue dress. With bright orange and white tie dye tights...and the pink cowgirl boots. I HAVE to get this girl to learn her colours, that would have made the dress business easier. I don't care about matching, she was pleased with herself and I had a kid who was wearing clothes. Everybody wins!
I had to go out of my normal zone and leave her with a friend because I had a checkup for myself today. For the first time in two years, someone was inquiring about MY health, it was weird. We didn't have time to address all of my concerns, but we have to redo my rheumatology referral in two weeks since I wasn't able to do anything about it (it was during Mia's peak health crises). Doc also thinks I have pancreatitis after describing what I thought was annoying reflux. No wonder ten tums didn't help. We're a barrel of fun!
Speaking of fun, here are pictures from our latest "adventure", plus a couple from inside the warm house!

She was so proud to dress herself. Mixing seasons is so Vogue.

Sleepy birds

She needs some spinning bling for that thing

This wolf wasn't very concerned about us, he was watching the beavers and waiting for his chance to catch lunch. He kept an eye on us, but didn't seem to feel very threatened.

Over the shoulder, nothing but net!

Part of the boardwalk at Eagle River Nature Center

She insisted on pulling the pulk "like Daddy"

Cuddling at our friend's birthday

Mia's Big Snowshoe Adventure

We actually got up on Sunday morning for our meetup with the Anchorage Adventurers without household incident. The furnace was working, the pulk was fixed. It seems like a nice group but we were the only family and weren't able to go as fast as the rest of the group. It was nice because they didn't pressure us to keep up or act like we were slowing anyone down; we kept our own pace and caught up when we could and they kept us informed of the turns and whatnot. We went as far as we could and opted to turn around when the route went up a steeper face than we were comfortable with, being the first time pulling our pulk. I also don't have tons of endurance. Yeah, working on that one! We were out for a few hours. When we got close to the trail that went up the face, we found ourselves in a bit of weather. That was the end of our trail so we didn't have much of a choice but to turn around anyway. On the way down I couldn't keep the pulk from tipping over. I had no problem coming up, but it just wanted to track up the path and tilt totally on it's left side. We tightend the harness and tied a tether to the right side so Gary could hold it level but it was still being stubborn. We switched and it was just fine for him. So, either my hips are too narrow or I walk funny. Mia loved it though. She didn't want the roof pulled over, even when the snow picked up. We heard her calling out, "NO ROOF! OPENOPENOPEN! NOOOOO ROOOOOOOOF!" until she fell asleep. She was nice and cozy in there!

These are not kids poles, they are regular poles collapsed as far as they can go. "I poking da snow!"

The pulk behaved for Daddy on the way down

Just after we got out of the weather. It was a bit nippy!

There was another person who was going our pace

Super Mommy!

This is good stuff!

Pod Baby

Family time

Sorry I'm slacking!

This is a smile, I promise! She is wrapped up in the blanket that her Grandma and Grandpa Dollman made for her. I tried to get a picture of her with the dancing/singing turtle that the Sams side sent, but she won't go near it!

Our first snowshoeing adventure in Hatchers Pass...it didn't last very long. The temp was very cold, to say the least. Gary and I were okay because we were moving around but it wasn't great for the toddler who was sitting. We opted to turn in early.

She tried so hard to pick up the snowball, but she was barely able to bend this far! She was pretty limited in her staypuff suit!

Blindly running yelling "WUNNING!! WUUUUNING!"

We still have rice so far! We've been making her formula with the ricemilk and I found some rice noodles that she is pretty thrilled with. Sometimes the textures get to her and we end up smacking her on the back because she chokes or gags, but other than that she is satisfied that she can eat with us. I think we are going to give black olives a shot next.

We have to okay to start spacing out her IVIG infusions, so the infusion yesterday was four weeks from the previous instead of three. The next one will be in five weeks, and there will be one more after that at six. We're anxious to see what her immune system will do on it's own. I made the mistake of going to the grocery store after we left the hospital yesterday. She is always crabby afterwards and we usually go straight home. I was THAT mom with THAT kid in the store, the screaming and arching... Good times! She is normally pretty well behaved but I should have known better!

Potty is coming along. Today she went without diapers until naptime (which is still in the process) and for the most part used her little potty. She even asked on her own a couple of times. She's racking up the stickers! Hey, I'm not above bribery. She seems pleased enough with praise, but the kid loves stickers almost as much. We might be nearing big-girl underpants!

Tomorrow we plan on joining a group for a little snowshoeing adventure. We are anxious to see how our pulk will do. I found a pulk on craigslist for about $250 which was a wad that we weren't planning on dropping right now. We were going to look at it and see if it was really what we wanted (oh, for those of you who don't have a clue what I'm talking about, a childs pulk is a little sled with a "tent" and harnessed seat. There are one or two adjustable poles with a harness for the adult to strap into so they can pull it doing various snow activities). We had to go to OT first and we told her what we were considering. She asked the other therapist in the room if she still had the pulk she was trying to get rid of, so we ended up with a free pulk. It is in stellar condition and only needed a new bolt, which was an easy fix. So, it's maiden voyage (with us anyway) will be tomorrow in Bear Valley! Pictures to come, I'm sure.

We were goign to go last weekend, but we woke up to a fifty degree house. The igniter on our furnace bought the farm. It's fixed for now, but the tech said our furnace is on it's last TOE and we really need to start pricing a new one. I know why this is happening. I said out loud how we knew exactly where all of our money goes and how we have a good financial strategy. You should never say things like that!