That can only mean...We're going to Colorado! We heard this morning from one of his CO's so we don't have it in writing but if they know, then it's hopefully a given. Our report date is 10 June so we will probably be leaving on 30 May, drive 10 days or less and have 11-20 June to do our house hunting. We're keeping our fingers crossed that we can get into decent housing on post. I just hope that they have some without carpet, otherwise we will either have to buy a Dyson or rent a carpet free house off post.
We are also overstimulated! We've been packing boxes this week, and now that we know where they are going we're really in gear. We are going to use a "you pack, we move" service rather than drive a U-haul and fly someone up to help. It is our best option and it means we don't have to drive an 8mpg truck. The biggest bummer is that we can't blame movers for dropping our zillion pound dinosaur of a TV and get a new one for it :) Now we have to line up a property manager, make an appt for the ABF company to drop the trailer off and get that stuff on it's way. We have 3 days on either side of the move to pack and unload.
I'm already dizzy!
Wednesday, April 30, 2008
Friday, April 25, 2008
No Transfusion!
We don't have to do a transfusion after all! We met with a hematologist yesterday. She said that the levels in the blood are definitely low and she is certainly anemic. She understands why the regular pediatricians were having fits but she, being a blood doctor, she said that she does not usually transfuse until "10 points lower" than where Mia is currently. She thinks that intensive iron supplementation will help since it is clearly nutritional and we know how it happened. Her gut had a bleed, didn’t absorb properly and even though it seems to have calmed down, she has never had more than the recommended daily value for iron, not enough to catch up to what she lost. It also happens slowly so that kids just adjust to the miserly feelings that adults complain about, and before you know it you have a cranky hyperactive kid. We are beyond happy that this is fixable with our original plan of an iron infusion with next week’s IVIG.
We heard yesterday that the request packet has made it all the way up to the Department of the Army, so we should hear something soon. I know I’ve been saying that a lot, but it’s honestly closer this time. We will definitely hear about whether or not it was granted quickly, but as for the actual assignment it will probably take longer. Gary spoke with the assignment manager and she wasn’t optimistic about Colorado Springs because it’s apparently pretty full and would require a lot of shuffling. She asked if we have a second choice, and that is where we are torn. We have a couple of ideas, but both of them would cause delays or worse with getting into Denver’s Eos program. We do know that anywhere would likely be better for Mia than Anchorage right now, but the more I can keep her off of an airplane, the better. Our favorite airline (which really wasn’t stellar, in the grand scheme of things, if that tells you anything) just merged with Delta, so we are hosed as far as allergy support and understanding at 30,000 feet!
The weather has me supremely confused and ticked off. The first few pictures are of Mia playing in our beautiful almost 60* sunshine... The last one shows half of our snow dump from today. I think we can say it's nearing a foot, up to 8" more expected by tomorrow morning! It's better than rain, but I was ready for spring! It's pretty, but really, I'm over it.
Excelent bubble weather
Aaaaaaaand I'm done.
We heard yesterday that the request packet has made it all the way up to the Department of the Army, so we should hear something soon. I know I’ve been saying that a lot, but it’s honestly closer this time. We will definitely hear about whether or not it was granted quickly, but as for the actual assignment it will probably take longer. Gary spoke with the assignment manager and she wasn’t optimistic about Colorado Springs because it’s apparently pretty full and would require a lot of shuffling. She asked if we have a second choice, and that is where we are torn. We have a couple of ideas, but both of them would cause delays or worse with getting into Denver’s Eos program. We do know that anywhere would likely be better for Mia than Anchorage right now, but the more I can keep her off of an airplane, the better. Our favorite airline (which really wasn’t stellar, in the grand scheme of things, if that tells you anything) just merged with Delta, so we are hosed as far as allergy support and understanding at 30,000 feet!
The weather has me supremely confused and ticked off. The first few pictures are of Mia playing in our beautiful almost 60* sunshine... The last one shows half of our snow dump from today. I think we can say it's nearing a foot, up to 8" more expected by tomorrow morning! It's better than rain, but I was ready for spring! It's pretty, but really, I'm over it.
She likes to dress herself!
Excelent bubble weather
Aaaaaaaand I'm done.
Monday, April 21, 2008
Blood transfusion this week
The anemia has worsened, according to this morning's CBC, so we got the call today that a blood transfusion will be the best option right now. Simply putting more iron into her will not work at this point. Her pediatrician spoke to the allergist and everyone is in unanimous agreement that this should be done before she gets worse. Today was a little rougher than before, her resting periods between spurts of playtime are getting longer and she keeps saying things like she doesn't feel good or has a headache. These things worry me because we have never made a big deal out of her everyday discomfort/pain or not feeling well. I've always heard that the worst thing you can do for chronic pain or illness is to draw attention to it. We don't ignore it, but we move along without creating even mild hysteria. Attention is directed towards her accomplishments and positive behaviors so when she is negative, something is off kilter.
The transfusion will be this week. The nurse's best guess was Wednesday or Thursday because even though it isn't an outright emergency, it should be done quickly. We're worried, even though the standards for blood donation are pretty strict and they are even more attentive towards the smaller patients. Unfortunately our options are transfusion or watch her get sicker. Those are some apples.
The transfusion will be this week. The nurse's best guess was Wednesday or Thursday because even though it isn't an outright emergency, it should be done quickly. We're worried, even though the standards for blood donation are pretty strict and they are even more attentive towards the smaller patients. Unfortunately our options are transfusion or watch her get sicker. Those are some apples.
Sunday, April 20, 2008
Good Day Sunshine!
Now that we are finally getting sunshine, do we really want to leave?? The weather has been beautiful and in the fifties the past two days. This is good stuff! She's still plugging along, business as usual but says she's tired a lot and puts up ZERO fight going to bed. She didn't even get through two songs on her night-time CD tonight. We go in for another CBC tomorrow, keeping an eye on the red blood cells. We were going to have a play date but her little friend's family is getting over strep throat. She is such a courteous mom, she called and let me know that technically they are not considered contagious anymore, but we could move the play date to Wednesday. Even though Mia's immune system is more hyperactive, we'll play it safe, especially with her in a fairly fragile place.
We bought our trailer for our trip to Wherever, USA. We were really torn on this. The first plan was just load up the Suby, stuff some things in the ski box and put the little tiny cargo hitch thing in for the gas cans. With the Dity move stuff going on, we looked on craigslist and saw an older camper for $400, but it was gone by the time we got to the ad. Just as well in hindsight. There is no telling what kind of mold or dust and dander we'd be dealing with, even if we wanted it purely for hauling purposes. Gary just bought a little platform trailer from Lowes that was within our budget and will do the trick. He has a friend who "knows trailers" and can Al-Can proof the sucker for us. We have a couple of larger action packer type containers that fit, and the gas cans.
"Downda hill wunnin!"
"I chalkada draw!"
We bought our trailer for our trip to Wherever, USA. We were really torn on this. The first plan was just load up the Suby, stuff some things in the ski box and put the little tiny cargo hitch thing in for the gas cans. With the Dity move stuff going on, we looked on craigslist and saw an older camper for $400, but it was gone by the time we got to the ad. Just as well in hindsight. There is no telling what kind of mold or dust and dander we'd be dealing with, even if we wanted it purely for hauling purposes. Gary just bought a little platform trailer from Lowes that was within our budget and will do the trick. He has a friend who "knows trailers" and can Al-Can proof the sucker for us. We have a couple of larger action packer type containers that fit, and the gas cans.
Mia loves being outside!
"Downda hill wunnin!"
"I chalkada draw!"
Thursday, April 17, 2008
Not a word.
Sorry, folks, no news yet. We are hoping to know something by tomorrow but are not holding our collective breath!
Things are still pretty much the same. Starting to see some of the old gastric issues again, unfortunately, but without the blood. She is more anemic than she was on 20 March where her CBC wasn't impressive, low in a lot of the red blood cells and twice as many platelets as is normal, low white blood cells and some other things I'm not familiar with yet. Apparently her hemoglobin is still dropping according to the latest CBC from Tuesday. They had us come to the Peds clinic yesterday so they could get a visual on her. For a severely anemic child she is extremely energetic. I think they were expecting a lethargic and sick looking girl, but here comes this little pig-tailed Queen of Almost Everything. She has been much more obstinate than usual, but I'm having a hard time interpreting whether it's the anemia or just being a toddler. She's normally a little testy, but lately she's been downright defiant. On one hand, it's age appropriate but on the other, she isn't normally like this. So I'm left with looking for the classic signs of severe anemia.
We've started a new medicine, Carnitor to bring up her L-Carnitine. It was very low on her micro nutrient panel, along with the zinc and iron. She'll receive an iron infusion with her last IVIG infusion on 2 May. We decided to get one more since we'll likely be on the road soon after that. The extra boost for her immune system wouldn't hurt since we are going to be coming in contact with who knows what at every rest stop and motel along the way...*shudder*
In the meantime, we are trying to get a list together to streamline the packing out process. We are considering at half DIY move. We've heard that they are moving so many people out of AK right now that they are having many families do their own move with an allowance. The first shipment of "unaccompanied baggage" is usually fairly small, full of things that you need quickly or to keep you until the rest of your things get there. We might just pull a trailer with that instead of having a company do it. We may even be able to fit it into the Suby but it would leave absolutely NO room and completely zero out the safety factor. It mainly depends on where we go.
Anyway, this picture is from the weekend of Easter, I believe. We've been so busy lately that we haven't even taken pictures.
Things are still pretty much the same. Starting to see some of the old gastric issues again, unfortunately, but without the blood. She is more anemic than she was on 20 March where her CBC wasn't impressive, low in a lot of the red blood cells and twice as many platelets as is normal, low white blood cells and some other things I'm not familiar with yet. Apparently her hemoglobin is still dropping according to the latest CBC from Tuesday. They had us come to the Peds clinic yesterday so they could get a visual on her. For a severely anemic child she is extremely energetic. I think they were expecting a lethargic and sick looking girl, but here comes this little pig-tailed Queen of Almost Everything. She has been much more obstinate than usual, but I'm having a hard time interpreting whether it's the anemia or just being a toddler. She's normally a little testy, but lately she's been downright defiant. On one hand, it's age appropriate but on the other, she isn't normally like this. So I'm left with looking for the classic signs of severe anemia.
We've started a new medicine, Carnitor to bring up her L-Carnitine. It was very low on her micro nutrient panel, along with the zinc and iron. She'll receive an iron infusion with her last IVIG infusion on 2 May. We decided to get one more since we'll likely be on the road soon after that. The extra boost for her immune system wouldn't hurt since we are going to be coming in contact with who knows what at every rest stop and motel along the way...*shudder*
In the meantime, we are trying to get a list together to streamline the packing out process. We are considering at half DIY move. We've heard that they are moving so many people out of AK right now that they are having many families do their own move with an allowance. The first shipment of "unaccompanied baggage" is usually fairly small, full of things that you need quickly or to keep you until the rest of your things get there. We might just pull a trailer with that instead of having a company do it. We may even be able to fit it into the Suby but it would leave absolutely NO room and completely zero out the safety factor. It mainly depends on where we go.
Anyway, this picture is from the weekend of Easter, I believe. We've been so busy lately that we haven't even taken pictures.
Friday, April 11, 2008
Snow is falling, no, its melting...no, it's falling! Oh, wait.
Gary is prying the not-so-working garbage disposal out of the sink, getting ready to install a new one. That's good, there was a funny smell coming out of that thing... There is still no word about the reassignment. He checked today and it is at Brigade level, which means it made it to Hawaii (must be nice). So we are expecting to hear something next week, like I thought. Gary's best estimate would be either a May 10th or a June 10th report date, more likely to be June, since May would give us about two seconds to pack, rent the house and drive to Destination X.
Mia had a followup visit with the Endocrinologist on Thursday. Nothing to report, she's small but growing. The doctors we like the best are the ones that say "You don't need me!"
I had a dentists appointment on Wednesday, another filling. This one hurts more than the last one did. You know, I had awesome teeth until I was pregnant. I told the doc this on Monday and he said that your body chemistry gets switched up, even in your mouth and people who never had a cavity usually don't get away without one. Yay, babies give you stretchmarks AND cavities! Good thing they are so darn cute. Mia stayed with her respite caregiver (the girl in the pictures). Mia LOVES her Maddie. Maddie always brings her Ipod and it's the first thing Mia asks for, "Music? Music?" We had Maddie stay with her on our anniversary and came home to find the ipod sitting outside of her bedroom door playing music! Apparently she asked for it!
We have been "trying" to do taxes for...oh ages now. I was under the impression that I'd be going Wednesday to sign them, but we had to dig around for our social security cards and find all of the medical credits we could. So, we thought we'd get it done today. The jokers closed at 3:30. Seriously, who closes at 3:30 so close to the deadline? So we'll be in there with all the other procrastinators on Monday!
Mia had a followup visit with the Endocrinologist on Thursday. Nothing to report, she's small but growing. The doctors we like the best are the ones that say "You don't need me!"
I had a dentists appointment on Wednesday, another filling. This one hurts more than the last one did. You know, I had awesome teeth until I was pregnant. I told the doc this on Monday and he said that your body chemistry gets switched up, even in your mouth and people who never had a cavity usually don't get away without one. Yay, babies give you stretchmarks AND cavities! Good thing they are so darn cute. Mia stayed with her respite caregiver (the girl in the pictures). Mia LOVES her Maddie. Maddie always brings her Ipod and it's the first thing Mia asks for, "Music? Music?" We had Maddie stay with her on our anniversary and came home to find the ipod sitting outside of her bedroom door playing music! Apparently she asked for it!
We have been "trying" to do taxes for...oh ages now. I was under the impression that I'd be going Wednesday to sign them, but we had to dig around for our social security cards and find all of the medical credits we could. So, we thought we'd get it done today. The jokers closed at 3:30. Seriously, who closes at 3:30 so close to the deadline? So we'll be in there with all the other procrastinators on Monday!
Sunday, April 6, 2008
Playing the waiting game...
Firstly, I want my Aunt Francis and my cousins to know that they are in our hearts. Uncle Hubert passed away this week. We love you guys.
Never too sick to play dressup!
She's such a lady.
Mia and I shared a rough little headcold this week. It wasn't fun and made me very unproductive.
I think Mia has the whole potty thing down to a science. Everything that is supposed to go in, does and she is even recognizing sensations on her own. Since being on the Budesonide, it has "regulated" things so there aren't any sudden surprises to scare her. Now, she was also on a five day punch of steroids, this being the first day off of them. We'll see!
Gary tried his hand at snow machining and apparently it's more work that you would think.
I think Mia has the whole potty thing down to a science. Everything that is supposed to go in, does and she is even recognizing sensations on her own. Since being on the Budesonide, it has "regulated" things so there aren't any sudden surprises to scare her. Now, she was also on a five day punch of steroids, this being the first day off of them. We'll see!
Gary tried his hand at snow machining and apparently it's more work that you would think.
Never too sick to play dressup!
She's such a lady.
Tuesday, April 1, 2008
Not April Fools!
Gary is submitting the request for a compassionate reassignment today! With all the letters, especially the statement from the EFMP office, I don't see how they could deny it.
We are going to be brave and try to go diaper free in public today! We don't have much of a choice since we have two therapies and have to pick up her med supplies. It's test day! We've got the potty seat in the car, towel/plastic padding her carseat and lots of changes! Wish us luck!
We don't need no stinkin rest!
Mia's chewy tube. It was given to us by her OT and feeding therapists to keep oral stimulation up to par in a safe way. Can't have her chewing on dangerous things. It is made of silicone, not rubber in case you were wondering.
We are going to be brave and try to go diaper free in public today! We don't have much of a choice since we have two therapies and have to pick up her med supplies. It's test day! We've got the potty seat in the car, towel/plastic padding her carseat and lots of changes! Wish us luck!
Dressup has no limits!
We don't need no stinkin rest!
Mia's chewy tube. It was given to us by her OT and feeding therapists to keep oral stimulation up to par in a safe way. Can't have her chewing on dangerous things. It is made of silicone, not rubber in case you were wondering.
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