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September 24, 2007
Blake in the last week
has been doing amazing. He is really showing great signs of
improvement since we started the scalp acupuncture. He is holding
his head up almost all the time now and is walking again with
assistance. We have him in physical therapy 3 times a week which
I am sure is also contributing to his overall strength. He is no
longer really taking a nap during the day and is much more alert and
vocal.
Jeremy and Blake will be leaving for Beijing
China on October 12 for almost 8 weeks of treatment. We thought
long and hard about what we were going to do and this is the decision
we came up with. I will be staying here since we have the big
fundraiser and Samuel to tend to. My Dr. also doesn't really feel
I should be traveling to China at 25 weeks of my pregnancy. So
needless to say it's going to be a long journey for all of us.
They will continue the same method of acupuncture while in China and he
will be receiving the neural stem cells.
We are making significant strides in our
November 2nd fundraiser and will keep everyone updated on the overall
progress of the event. We are still looking for a few more silent
auction and live auction donations.
September
13, 2007
Today we had our second session of Chinese Scalp
acupuncture. This is a new method different from traditional
acupunture which is used to benefit people with neurological
problems. We did notice some improvements even from our
first session.
We are also going to get our Mickey Button placed
today. Hopefully that will make life a little easier not having a
tube constantly sticking out of Blake. He has started
eating some more solids and is getting much stronger since we have been
back from the surgery.
I am also working on getting our passports and visa's as
we are aggressively looking into going to China for treatment. We
have waited for over a year to get into the clinical trial at Oregon
Health and Science only to be disqualified at the last minute this past
April. We were then told Phase 2 was going to start immediately
upon completion of the 6th child which again we were wating for.
I received news last week that Stem Cells Inc will wait 1 year upon
completion of the 6th child to even begin the Phase 2 trial. This
was confirmed with Dr. Huhn yesterday. This disease is far too
aggresive to wait and we need to act fast to try to save our little boy.
August
31st, 2007
I would like to welcome everyone to a long overdue
website for my
son Blake. I will do my best to keep everyone informed of how
Blake is
doing along with our quest to find a cure. We are staying
really busy
getting everything set up for our 1st annual golf tournament. We
are
also doing a live auction and dinner so you can imagine the amount of
work going into this.
Blake had his surgery almost 3 weeks ago for
placement of a
g-tube. It was becoming harder to administer his medications and
at
times he was throwing up causing him to lose weight. It was a
decision
we struggled with but felt it would be the best thing for Blake.
As of yesterday I have had regrets about doing the
surgery as I see
the struggles he is having while recupperating. The loss of
muscle
tone seems to be the biggest struggle. He is not eating by mouth
as
well but he is still trying. Today was a much better day.
He is very
happy, seems to be a little stronger and that's what keeps us fighting
everyday.
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