We continue to live a glorious life here in Jeremy world,
along with the crazy cat Mollie.
I finally have a blog posting update of Jeremy World but first
Thanksgiving.
I’m grateful that GOD chose me to be Jeremy’s mom, and has
given me 20 plus years to experience an undeserving love from such a tender
hearted boy, how Jeremy loves unconditionally and is always happy, most times
when he doesn’t feel good. I’m grateful
for his shenanigans and how they make me snicker.
I’m grateful for all
the amazing staff that cares for Jeremy, how they care for him and adopt us as
family. They are an extension of our
family.
I’m grateful I get to work for the Oklahoma Family Network
and provide support to so many families but how this supports my family.
I’m grateful for Sapulpa Bible Church, my church God provided
for me, they are extended family where the true, solid preaching of God’s word
is provided. The support and with happy
hearts GOD is served. I’m grateful for
the summer’s wicked weather because it brought Grace Community Church an entire
new church family into my life, many new amazing friends, who love and serve
GOD.
An Update into Jeremy World:
We still have no genetic answer, still has low T-cells and the only
treatment would be a bone marrow transplant but Jeremy is not a candidate he
couldn’t tolerate the procedure.
Jeremy’s spine did progress again this past year, which would explain
the increase in oxygen earlier this fall plus now leading to GI issues. I am grateful that Tulsa got an amazing new
Pediatric GI and that Dr. Michael Pickens was willing to take Jeremy on because
Jeremy isn’t considered Peds. Dr. Pickens,
listened to my concerns and immediately ordered test and wanted to know all he
could about Jeremy. We did an Upper GI
scope, barium enema and an Esphogram.
Jeremy’s esophagus is slow, due do the curvature of his spine food goes
down slower, he has severe Gastritis, 9 biopsies were collected and all
confirmed acid reflux.
We have had a busy year. I was honored and thrilled to be present to welcome Dawson Gaches into
our family on January 15. He is my first
Great-nephew and mom and dad would have been proud Great- Grandparents.
I attended a Heartland Genetic Advocate meeting in Dallas for a few days in February, a quick flight one day, conference, and late flight back. I gained some new knowledge. I was so grateful to have the opportunity to meet up with my friend Laurie Garza from Allen, Texas, she was the first parent I met when Jeremy was diagnosed with FG syndrome and we’ve remained friends through our boys growing up.
May I attended the Family Voices conference in Washington, DC and that was an amazing conference. I was pretty excited to be at our Nation’s Capital, see the White House, Washington Monument, Lincoln Memorial, Arlington Cemetery, our Nation’s Capital, supreme court, meet Senator Lankford. It was nice to be spend time with 3 of my co-workers with the Oklahoma Family Network.
Summer came and we took a vacation. I took Jeremy to his 5th year of
Camp Barnabas on Sunday, he loved it and would have returned. I then started my vacation with no agenda, no
planner and just got to be spontaneous.
I flew to Jacksonville, FL to meet my friend Denise and we drove to
Savannah, GA to spend the week. It was a
great week, lots of interesting historical sites, some interesting places to
eat, seen a cannon being shot, climbed one of the 10th tallest
Lighthouses at Tybee Island and we even drove around Bonaventure Cemetery. There was much time to relax, talk, I got to
do my bible study every evening with no interruptions, got some rest and just
an amazing week.
I will end with a verse from 1 Corinthians 10:31, " Whether, then you eat or drink or whatever you do, do all for the Glory of God". This is what I am striving to do in my life with all I do. I'm grateful that my Pastor has been teaching through 1 Corinthians.