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Thursday, April 22, 2010

Round 4 Week 1

I think this last round might be a tough one. She is doing ok, but running a little low on energy. Her hemoglobin has been hovering around 8.1 for the last 2 weeks and they usually wait to transfuse after it has dropped below 8. Since she hasn't done that yet, she hasn't had the transfusion. As a result, she is a bit more rundown then normal. Today she spent 2 hours sleeping on Becky's chest and refused to be put down. She seemed to perk up after dinner though and I managed to get her to eat a decent amount....highly unlikely for her, but a good thing none the less. She weighed in at 8.5 kilos today (18.7 lbs) and this is the most she has weighed for over 3 months. Cheese balls and Hagen Daz must do the trick! Her newly acquired teeth have added to her fun I think and she is slowly discovering the neat abilities they provide her with.

She was measured for braces for her ankles yesterday and low and behold they had a new design in...PINK CAMO. This is of course what we got as we wanted to make Daddy proud. The lady laughed at me thinking I was kidding, and then I had to explain why we like camo so much. She said these were going to be the smallest she'd ever had made -- of course, my kid has long skinny feet! These braces will help her have more stability when she attempts to stand, cruise and eventually walk until her ankles are strong enough to do so on their own. She will only wear them when we are working on these things, so not a constant for her. We are slowly ticking down the days until round 4 is over and we head to Florida for our next big adventure. For those of you also keeping tabs...we are on day 2 of 28 -- Friday is day 3.

Jeremy has been very productive at home the last few days. We had the air ducts cleaned out as we attempt to prepare for her arrival at home. St Jude has a "we mean business" air system that helps to eliminate bacteria and crap in the air. While cleaning our ducts isn't quite the same, Jeremy thought it would help. The company told us there was construction debris in the ducts...and the house was built in 1978. Whoa. Jeremy also had a long list of things to gather around the house for his trip down for the weekend and I had him running all over the place looking for them all! He found them too!

Avery is actually in bed as of now...9:43 pm so I am going to watch a little LOST on the computer (I haven't seen any of them this year) and get some sleep. Last night was rough as they have to come in and check her levels/change her diaper every hour. Sleep is a little tougher during this stage of the process as they are either changing her and taking urine specimens or vitals being taken....needless to say we both are a bit tired. Tomorrow is our last day with Becky from Paychex. She has to drive all the way back to Indy, but we sure had a great time with her. Not only did Avery love her, but Mommy got to catch up on all the fun news back at the office! Definitely a much needed distraction!


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