Welcome Friends!
Kelly B.
Birth Date - May 08, 2005
Main Diagnosis - Mitochondrial Myopathy
THEME: Horses, Foals, Ponies (Realistic)
"THANK YOU"
We continue to just be so “in awe” of the quilts. The girls love showing them off to anyone and everyone who comes over. They are so, so special.
Thank you for bringing so much cheer into our family.
Biography
Kelly entered the world on Mother’s Day, 2005. She was a wonderful
Mother’s Day present to her mommy, and dad and her three big sisters were all
pretty excited too. She weighed in at 9lbs 11oz and looked very strong and
healthy. From the very beginning, Kelly was having a lot of GI symptoms. The
previous year, her big sister Laura had been diagnosed with a GI disease and
extensive food allergies, so we were very concerned about Kelly’s problems.
Right from the start, Kelly was throwing up, having bloody diarrhea, and
screamed endlessly. She kept getting hives and was covered in eczema, and it was
pretty obvious to us even in those first two weeks, that nursing was causing her
a lot of discomfort.
After consulting with our GI doctor, we decided on a plan. Our first idea was
for me, her mom, to eat a very restricted diet (only 4 of the least allergenic
foods) and nurse her to see if we could get her tummy troubles to calm down.
After 4 weeks, it became obvious that this was not helping, and we proceeded to
step two, which was hypo-allergenic formula. After fighting with Kelly to take a
bottle, she took the formula, only to react even worse to that. At 6 weeks of
age, the GI told us that her growth and nutrition was of utmost importance, and
he decided to put her on an elemental, amino-acid formula (Neocate) that she
would not react to. Thankfully, Kelly decided she liked the formula.
She stayed on Neocate all through her first year. During this time, she had
several different infections and viruses, including a pneumonia that caused her
to be hospitalized. It seemed that every little illness would cause her to get
really sick. She got Rotavirus, and her gut completely shut down with an ileus.
We also found out about several drug allergies during this first year. Even
though Kelly had so many struggles, she was happy and growing, and always trying
to keep up with her sisters.
At the age of one year, on the doctor’s recommendation, we tried several
different foods to see how Kelly would do with them. We chose very bland
things, and tried them in very small amounts. Our happy toddler disappeared, and
Kelly went back to screaming and crying, not sleeping, and all the old GI
symptoms started up again. It was at this point that Kelly had her first of many
colonoscopies to find out exactly what was going on that made her so miserable.
Diagnosing her colitis and coming up with a treatment plan was a long process.
Ultimately, the GI recommended just keeping her on the Neocate formula only and
not trying to feed her anymore, to give her gut a rest.
Those first three years were a struggle for Kelly, because she desperately
wanted to eat like everyone else in the family, and didn’t understand why her
belly hurt, or why we wouldn’t feed her. Because her scopes and colon biopsies
looked so bad, even without food, she ended up becoming steroid dependent in
order to keep her severe colitis under control. While we really didn’t like the
side effects that the steroids gave her, we also were happy that she was finally
able to be pain free and enjoy life. After several years of steroid use, it
became apparent that immune suppression was going to be a long term need to keep
Kelly’s colitis in check, so the doctor switched her to a low dose chemotherapy
drug, which would allow us to better monitor the side effects of the treatment.
She has remained on that drug ever since. As long as her liver keeps tolerating
it, she will stay on it, as it seems to be keeping her disease well controlled.
When Kelly was 2 years old, her doctor approached us about doing testing on her
and her older sister, Laura. He suspected that they both had a Mitochondrial
Disease (Mito). Kelly had a muscle biopsy done on her thigh in May of 2007. We
began to research Mito and made some good connections with other families that
were in similar circumstances.
Mitochondrial Disease is a disease of energy deficiency. The mitochondria are
the building blocks of the cells, present in every cell in our body. They are
responsible for converting food and oxygen into energy. When they don’t work
properly, the cells cannot produce enough energy to support major organs or
muscle groups, and those organs and muscles then begin to fail. Mito can affect
any organ, and different people can be affected in different ways. It is a
progressive disease that has no cure.
When the labwork and biopsy results came back, it showed that Kelly had very
significant defiencies in Complex I, III, and IV of the respiratory chain,
meaning that she did indeed have Mitochondrial Myopathy. We were directed to do
some testing of other systems, and found that Kelly also had some cardiac
problems, which are followed yearly by her cardiologist, and have not really
caused her any major problems to date. Right now, Kelly’s GI is the system most
affected by her Mito.
When Kelly was three, we made the decision to get a g-tube placed. At this
point, she still was unable to eat any foods, and was having a very hard time
keeping up with the amount of Neocate she needed on a daily basis to grow
properly. She also had several hospitalizations that year, including a week long
stay from complications of Influenza. It seemed that every sniffle turned into a
major event, where she would get dehydrated and hypoglycemic, needing IV fluids
to get better. The g-tube was one of the best things that we did for Kelly. It
made her nutrition and hydration so much easier.
Kelly is now a happy, smart kindergartener. She is learning how to read and do
simple math, and enjoys many different activities. She is plagued often by leg
pain, and gets easily worn out. She is hooked up to a feeding pump that she
carries in a backup nearly all day long, on continuous feeds. Overnight, she is
hooked up to dextrose to keep her blood sugar stable. Because her older sister
also has a feeding tube, it has made Kelly’s journey a bit easier. She calls
herself and Laura “button buddies” because they have the same kind of g-tube
button. Her tube doesn’t seem to keep her from anything she wants to do. Over
the past 2 years, she has also been able to tolerate some foods. We have tried
some foods very carefully and in limited amounts. She currently has a diet of
about 15 foods that she tolerates. She doesn’t eat much, but does enjoy being
able to sit down at the dinner table with the rest of the family. The foods are
mostly for social purposes, as she still gets the
bulk of her nutrition from her g-tube feeds. We are blessed that she seems to
have a very good understanding, for her age, of her disease, and seems very
accepting of the limitations it has placed on her.
This past year, we found out that Kelly also has two forms of sleep apnea. One
is called “hypopnea” which means that her lungs breathe too shallow while she is
sleeping. The other is Central Sleep Apnea, where her brain doesn’t send a
message to breathe to her lungs while she is asleep. Because of that, she
started on bi-pap this past fall. Again, her two older sisters paved the way for
her, and she was excited to get “a mask” and be just like them, which really
helped her adjust to wearing the bi-pap every night.
Although it takes a lot of work to keep her well, Kelly seems to stay fairly
stable if we stick to her medicine regimen. Because of her immune suppression,
we try to keep her away from groups when we are aware that there is sickness
going around. She gets the “Mito Cocktail” everyday, as well as several other
medicines. Thanks to her g-tube and being on continuous feeds, we are able to
keep much better control over her low blood sugars, testing her glucose and
correcting it whenever necessary. She says it’s hard to be hooked up to two
different things while she sleeps, but she proves over and over again how strong
she is.
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