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).
Showing posts with label snowshoe adventures. Show all posts
Showing posts with label snowshoe adventures. Show all posts
Monday, March 17, 2008
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.
Monday, February 25, 2008
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!
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.
Labels:
doctors,
independence,
sleeping,
snowshoe adventures
Monday, February 18, 2008
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!"

Saturday, February 16, 2008
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!
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