New food, new medicine

Who needs prime time TV when you have the Mia Chronicles?
For two days we have been trialing rice milk. We gave two ounces the first day, which was probably overkill, but it's like I'm new to feeding all over again. We gave three ounces yesterday and about three and a half today. We had TWO normal poops in a row! I won't go into detail, but to this mamma it was like beautiful art! I ran out of the room with the diaper and showed Gary, who was looking at me like I'd gone off the deep end. If we can get rice, that opens such a BIG ornate door! Just as important, this could mean that the Ketotifen is working! If we can avoid immunosuppression, we'll be over the moon with happiness!

On a little bummer note, the allergist is afraid that she's showing the first signs of asthma. She has been coughing a lot for seemingly no good reason and is also waking in the night from coughing. We now have an inhaler for Flovent twice a day and albuterol for "attacks". They gave us a walk-in slot in Peds for her first dose to make sure she wouldn't react. The Major gave an excellent tutorial on how to use it, but I still feel so mean pressing the mask against her face. She was extremely unhappy with me today. We went to the swimming pool afterwards so she forgave me pretty quick.

And so I don't leavey ou with bad news, we are weaning her off of the IVIG infusions. Instead of three weeks apart, this next will be four, then five and finally six. After that she'll be done and we can see what her immune system will do with it's own devices. I'm not sure what we'll do about the mediport. I'm not in favor of removing it right after, just in case she has to start the infusions again. I'm not being a pessimist and saying that I think her body will flip out again, I just don't want to remove it and need it again.

Sorry about the pictureless post, Gary has the harddrive with the photos :/

She shines

Mia is turning into such a little person with a little personality. She cannot stand hang-nails and will immediately bring them to my attention and ask to have them "kwips". The frog cup is the preferred vessel, but the pink cup with the flowers will do in a pinch. She much prefers Michael Bouble and Ella Fitzgerald over the kids singing cds, but will sometimes ask for Weezer.

Things I Have Learned From Mia

• Pink cowgirl boots go with everything.
• Everything looks better when you're upside down.
• Things are much more interesting when taken apart.
• You can put anything back together.
• You don't need television when you have a sock and some fabric scraps.
• Everything is a process that requires support and patience.
• Time-Out is very portable and doesn't lose effectiveness at the Post Office.
• Just because it's easier to do it myself doesn't mean I shouldn't give her the opportunity.
• Childproof simply means the child works harder to prove they can open it.
• You can forgive someone for hitting and kicking you when they are under 3 feet tall.

New meds, new pants and new plan

Well, the pants aren't very new. But the Ketotifen is. We've had her on Budesonide oral for a while (it's usually inhaled through a nebulizer but when taken orally, it's kind of like a topical steroid for the insides) and we haven't seen any improvement. We've talked about Ketotifen before but wanted to make sure nothing else was working. It's a combination of a couple of different medications she has been on before, working a lot like a steroid and antihistamine rolled into one without the systemic side effects. She has been on it for two weeks and there is still no change. Another bummer is that this stuff isn't immediately covered by Tricare because it isn't commercially available in the states; we have to have it compounded. I'll just say that Canadian drugs are looking GOOD.

Her GI doc is moving in February but will return every six weeks for a year or until they get another pediatric GI. I'm very nervous but hope that it only seems like a bigger deal than it really is. We had our last appointment this week and he calmed my quiet hysteria about the amount of mucous in her diapers. In reality, we should expect it because she has severe allergy in the gut. When you have severe allergic rhinitis, your nose runs, so...you get it. Unfortunately, the hemocult cards they had me wiping poo onto showed some bleeding. Doc is actually thinking that this is more of an autoimmune problem and not completely due to food triggers. We have gone as elemental as possible for her diet. It could still be the tapioca, so we will play with that in this 8 week time frame we have until our next GI appt. After that, it's immunosupression. Doc has been talking about 6MP (Mercaptopurine) that is used mainly in conjunction with chemo for leukemia patients. He has used it with great success in Chrone's patients. Since this is looking like her immune system is attacking her own body, suppressing it could help regain footing and calm it down enough to introduce foods. I'm not wild about the idea, but we HAVE to feed her. We are already in OT and feeding therapy, but when you can only work with a sorry excuse for tapioca pudding, it isn't easy and it might not be effective. There are risks, but she wouldn't be on a dose of leukemia proportions, it would be tailored to her white blood cell count. In fact, we had to run labs to determine whether or not she would qualify for the treatment to begin with. So the fact that she would be getting a fractional dose significantly decreases the likelihood of something going wrong. We are still reading about it and researching, and in the meantime we are REALLY hoping that the Ketotifen is just a late worker. Now for the cuteness!

She really wanted to wear Daddy's baja shirt!

This is how we roll.

It was naptime in the Dollman house, but there was a ruckus in the girlie room. When I went in to check on her, this is how I found her! She was fully clothed plus the tutu when I laid her down. Apparently it was a tutus only kind of party.

My big helper. I simply borrow the cookware.

We let her out, sometimes.

She'd go to the grocery store like this if I'd let her!

She likes the stripes

Christmas, Birthdays, Boxes and Teaparties

Boxation Fixation runs in the family.

Mia had her very own little tree that her Grandma Dollman gave to her. It must have seen every room in the house!

Our church lets the children set up the nativity every Christmas, and if you ask Mia, sheep belong on the roof.

On our way to the neighbors on Christmas morning. The kid rides in style.

Mia needed little help ripping into the presents once she remembered that good things come in wrapped packages!

Mia loves to play tea party, Rabbit isn't all that interested.

Happy Birthday to Mommy!

After next year, I'm quitting. No more "gettin up there". If I find more than 25 candles on my cake EVER, someone gets it.