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June 2001
My Mom is so pleased with the way I point to things, and roll from side to side. I can even model
after something shown to me one time. My arms are stronger than my legs, but my legs are catching up. I can actually bang
my legs down hard enough to shake my crib. I sometimes push against my Mom's legs when I'm sitting on her lap. I feel I
could stand but I better wait on that.
Mom has bought me so much clothes you think I was three people. In
fact, I do sweat a lot, so my clothes are changed as much as five or six times in a day.
Between doctor offices,
hospitals, radiologists, and my pediatrician's office I've been to medical facilities over 90 times thus far. I say over
90 because my Mom's pocket calendar starts with the month of July (year 2000). I was born in April of 2000 so we're missing
a couple of months. This number also excludes my now weekly physical therapy and special education sessions - I have those
at home. Life is so grand! I thank God for such rich resources.
My home nurses are just wonderful.
Big Shout out to Kimberly. She's my very own fairy Godmother and has been there from Day 1.
Soon, I will
be receiving my fourth pamidronate treatment. Can't wait. I pray this time I'll only get stuck once. I had my first pamidronate
infusion when I was 6 months old, then another at nine months, and one at twelve months. For now, we seem to be going every
three months for my 3-day hospital stay. It's really not that bad once you get the IV going.
I now use a 1/4
liter of oxygen at night and when it may be necessary due to distress/illness (ie. broncholitis) and/or when my home nurse(s)
deems it necessary. My saturations are monitored daily to make sure I'm where I should be.
Mom says
to me quite often "You think you're a big girl huh?". I must be doing things well beyond my age. All I know is
that this is not the end of the world. In fact, I believe I must be touched by the hand of God because I'm here, alive, and
loving it (plus everyone keeps telling me how cute I am:):):). Until next time. Hannah-Banana
Thank you
Lord.
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