Friday, May 27, 2016
Back at you from good ole’ Alaska Air. Heading to Calif to
spend the weekend and my birthday with the family. Lookin at the big four-six. Time marches on. My mother wisely told me to go to Calif
knowing I would be a grump if I didn’t head down.
Last week of school for the kids. I know they are excited to be done with the
home work. Bit of an exciting week
coming up. I will be staying in Calif
with Gage and some of the kids while Stacy heads to Oregon with her mother and
sisters. My hope is they will go through
all the piles of ‘stuff’ I have brought home over the last 6½ months. And there is a lot of ‘stuff’ to go
through. With her gone I will have the
opportunity to learn how to do dressing changes in a sterile environment,
manage the feeding tube, keep the meds going, record the vitals, don’t miss any
appointments, and pray nothing goes wrong!!
Stacy will leave June 2nd and return June 6th (unless the ‘call’
comes). Statistically speaking, we have to
be getting close to the call, right?
The Man-of-Steel is doing well. They increased the rpm’s on the HeartWare
from 2100 to 2200. They want to see if
the increased flow will help with the kidney function. The down side is the risk
of suction events. This is all the
normal monitoring of Gage and the VAD devise he is on.
Sierra’s lupus blood tests all came back negative. So that all good. She still has signs of it, but the blood
tests did not prove she has it. This all
means just watch and see. It is good to
be this close to the specialist.
Still no word on moving into the new RMH. We might (heavy on the might) be moving into
a regular house for a couple of months.
Some friends in the area will be gone until August so we might move in
for a spell. Either way, it’s all good.
That’s it for now. One of these days I will report the ‘call’
but not yet.
The hair is getting a bit hard to manage. Going through lots of hair products!
Saturday, May 28, 2016
Good to be here. Thanks Dad for covering my work while I am
gone. Today was the annual 5k Color Run
in San Jose. Thousands of people show up
for this thing as we run a 5k. During
the run they have loud music playing and all the colored chalk you can
handle. They throw it on you as you run,
then give you packets of the colored powder to throw on your friends. It’s tons of fun. Took Gage on it for a bit. Now, Saturday afternoon, the kids are studying.
Day 200 is in the books,
Till next time
Jason
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3 comments:
Good to see all those happy smiles!! Hope your birthday is grand and that you can cut your hair soon!! Go Gage Aurelius, Strong and Courageous!!
I pray every night that Gage gets the 'call' very soon. The waiting must be so hard for all of you. Been following your family for ages and always ask Him to give you and Stacy courage and strength. I couldn't do it as you do. Bless you all.
I just finished watching your show on Dateline and my tears won't stop falling for your family. Words cannot express the admiration I feel for the way all of you have handled the trying years you've had to endure. You are handling everything with perfection and grace. I pray that little Gage gets his new heart soon and I will continue to follow your family's path. I wish I was a millionaire because I would empty my bank account in a heartbeat to help take away whatever bit of stress I could. I will share your story on my blog, facebook, twitter, instagram and website. Is there a link to a donation page I can include?
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