Sent: Wednesday, June 11, 2008 4:03 PM
Subject: update on Jackson
Hey family and friends. So many of you have asked me recently if
there is any new news regarding Jackson's health and progress. It means so
much to us that you are continuing to pray and remember our son. I was
waiting to speak with our rheumatologist in Birmingham yesterday while
Jackson received his IV treatments so that I might have new information to
share.
Thankfully, the appointment went very well. The doctor is encouraged
by Jackson's progress, just as we are. Jackson is now able to walk up
multiple stairs, to walk longer distances and even run in short bursts of
energy. He goes to Physical Therapy once a week for stretching and light
strengthening, and he even asked his therapist to marry him at our last
visit. He told her that if she would marry him then they could dance at
their wedding. He is making new friends everywhere we go, and I am so
blessed by his positive and infectious spirit.
Jackson's doctor said that his bloodwork came back with more normal
muscle enzyme levels this time, and by his own assessment, he sees lots of
improvement in strength and function. Jackson is gaining more weight from
the high levels of steroids that he takes, but the doctor thinks it is
within reason and that Jackson is keeping a good diet. Jackson has that
cute little "moon face" that is so typical of kids on lots of steroids.
I am especially grateful that the doctor is lowering Jackson's steroid
dose from 40mg a day to 30 mg a day- still alot, but at least it is moving
in the right direction now. I am still giving Jackson a shot once a week,
and as much as he hates it, he is so strong. The shots do give him a little
fatigue each weekend and some digestive problems, but I am hopeful that his
body will adjust with time.
So many of you have asked how to pray specifically for Jackson and our
family so I want to give some very specific requests for prayer:
1) Jackson's doctor detected a slight contracture in Jackson's arms.
Contractures are basically when the muscle shortens permanently due to
weakness and disuse for so long. A contracture at the elbow means that
Jackson could potentially not be able to straighten his elbows out as
completely as most people do. Please pray that with home stretching and
more aggressive stretching in therapy that this movement would not be
limited in his elbows, shoulders, hips, knees or ankles.
2) There is a small percentage of children who do go into remission
within 2 years of the onset of this disease and who remain in remission for
the rest of their lives. Please pray with us that this would be the case
for Jackson. There is no way to predict if a child will have recurring
flare-ups for the rest of their lives or go into permanent remission, but
Jackson's positive response to the medications so far is a positive sign.
3) Pray for me as I go to Romania on Sunday! One of Robert's job
responsibilites is to help coordinate a group that comes from Alabama to
Romania to meet with educators, medical teams, orphanages, defense, and
various other areas to exchange ideas and knowledge. They were gracious
enough to extend an invitation for me to come on this trip. We will leave
on Sunday and return on Friday. Jackson and Tanner will be staying with my
parents in Florida for a few days. Please pray that Jackson's strength and
energy would remain good, and also that Tanner would do well with his first
time apart from his momma!
4)Please pray for us as we are undergoing lots of "little" problems
lately that just make life more fun! Our bathtub upstairs leaked into our
downstairs and caused mold in a wall. After weeks of inspections, now a
mold remediation team is having to come out and demolition our downstairs
wall and bathroom and use a germicide cleaning agent on everything
downstairs. Then a contractor can come in and replace the tub upstairs and
repair everything downstairs. I am told that this could all take weeks, and
due to Jackson's suppressed immune system, we have to evacuate our home for
the entire course of the procedure. It is really just a headache, but the
little things add up and sometimes make us feel a little overwhelmed.
5)Lastly (yes, there is an end in sight), please pray for our
Ukrainian babysitter, Violeta, who is coming to live with us at the end of
June! We miss her so much, and she has graciously accepted our offer to
come and stay until October just to be a help. She will come after she
graduates college and pending her visa approval, so please pray with us that
the details will work out and that she will be able to come soon. She will
be a big help especially until Robert returns at the end of July.
OK, that is it for now. Thank you all so much. We are so blessed to
have the support of wonderful family and friends who do so many unexpected
things to help us each and every day. We love you all!
Love, Tracie Griggs
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Don't worry about tomorrow. God is already there!
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