Also Hannah, Lucas, and I have made it through our first 4 weeks
of school ~ yay! I can say that it hasn't been all that bad. The only real
issue has been the logistical issue of getting everyone where they are
supposed to be after school. It was a challenge before I was working more hours, with Mike now on second shift but, now it gives new meaning to the word.
Hannah has started pointe class and has about five hours of dance a week. Lucas is into the new Fall Ball game season, which includes two nights of practice and a double header every weekend for a couple more weeks.
It is not without its pitfalls physically. Hannah is now having infusions
every three weeks. Lucas just had his medicine dose increased but
we are still only every four weeks. The cooler weather will bring its
own set of challenges. It will be time to get out the heated throws
that I can turn on in the morning when I wake up. That way their
joints will have a chance to warm up before they get up. Each year
as the demand of the activities grow... it tests the love for it and
the resolve to do what it takes. For now it's infusions, Bio-freeze,
hot water bottles at night & heated throws with an occasional ice
pack. And a hefty dose of Tramadol here and there.
It is a labor of love scheduling and traveling because they are doing what they love. Some will never understand the physical cost
and challenge... it is too easy to take for granted one's health. I am grateful because others are not as fortunate.
Cody is a month into his junior year. He is thoroughly enjoying ecology
and all the labs it has entailed so far. We have a couple big appointments
upcoming Hershey at Thanksgiving for the kidney issues and Bethesda for our annual check in at the NIH. My sweet Rachel is settling to her new
routine at the hospital and life without school.
It is really amazing to me that my littles are not littles anymore. They
have become fascinating young people and I am privileged to have had
a part in them.
