Welcome Friends!
Jordan K.
Minnesota
Birth Date - July 1, 1998
Main Diagnosis - Spinocerebellar Ataxia Type 2
THEME: Cars - blues and greens
Biography
Jordan was born in 1998. He developed normally. He learned how to walk and talk at age appropriate stages. He loved riding bike, playing baseball,
fishing, hunting and fixing things. He was very energetic. When he was in 1st
grade, his teacher noticed that his eyes were not moving like they should. (2
years prior to this Jordan's dad was diagnosed with Spinocerebellar Ataxia type
2.) They insisted that I get Jordan tested. I did not see the point to have him
tested because there was not a cure or treatment. Having the test done would not
change anything. The teacher said it could be something else. It could be a
brain tumor and they might be able to fix that. We went ahead and had the test
done. Jordan was not lucky enough to have a brain tumor. He had Spinocerebellar
Ataxia Type 2. A progressive neurological disorder. This disease takes and takes
until there is nothing left to take. It started with his balance and
coordination. Writing and drawing got difficult. H
e started falling a lot. 4the grade he got a walker and in 5the grade he got a
wheel chair. He has been wheel chair bound since Sept 2010. That is when Jordan
got a really bad respiratory infection. That hit him really hard. Up until that
point Jordan could still talk, he could walk with assistance, he had a great
appetite and he had full control over his bowel and bladder. Between Sept.-May
Jordan also got influenza, pneumonia and a couple other respirator infections.
He had lost over 20 pounds. He lost control of his bowel and bladder, forced to
wear pull-ups and diapers. He hardly spoke at all, the words just don't come
out. Every time he got sick he would lose a little more. We decided to have a
G-tube placed. A tube that goes into his stomach so he could eat if he wanted to
but he did not have to. That was working great for 6 weeks. Then he developed
severe abdominal pains. We took him to the local ER and they sent us to St. Paul
Children's hospital. We spent 7 days at
St.Paul Children's hospital. They did a CT scan, MRI, X-rays, endoscopy,
sigmoidoscopy, ultrasound, labwork, biopsies, cultures and they changed the G
tube to a GJ tube. He was unable to tolerate any formula going into his stomach.
St.Paul Childrens was unable to give me any reasonable explanation for the pain.
There were not any more test they could do and they were not doing anything
there that I could not do at home. So we brought Jordan home. He was on pain
meds and only getting 1/2 the amount of formula he required through the J tube.
The few pounds that he had gained in that short 6 weeks, he had lost. Slowly we
increased the formula rate and decreased the pain meds. The MRI done at St. Paul
Childrens hospital showed his spheniod sinuses were completely blocked. However
they refused to address that issue. The neurologist gave us a referral to an
ENT. We took him to the ENT Dr. He was put on nasal spray and antibiotics. That
did not seem to help so in Nov. of 2011 he ha
d sinus surgery. Most people go home on the same day but Jordan needed to stay
in the hospital for 2 days. His temp and pulse were high and blood pressure was
low. After the surgery, his sinuses seemed good for a month or two but then they
blocked back up. Jordan has been on every class of antibiotics in the past year.
His sinuses drain and run down into his lungs causing lots of respiratory
problems. Currently Jordan takes 11 nebulized medications a day, he also uses a
percussion vest twice a day for 20 minutes and lots of nasal and oral
suctioning. In Feb 2011 the pulmonologist recommended that Jordan have a
tracheostomy placed. We refused the trach. and he had said 'we need to look at
comfort measure for end of life care'. Jordan is better than he was back in Feb.
but it is a constant daily battle to keep his lungs cleared.
He doesn't eat anything by mouth. Everything goes through the GJ tube. Jordan
hardly talks at all. Once in a while he might get 'mom' out. Most of the time I
can see he wants to tell me something by the look in his eyes but nothing comes
out. He is completely incontinent of bowel and bladder. Sometimes his bladder
won't release the urine and he needs to be straight cathed. He doesn't stand at
all. Some days his arms and legs fly all over the place. He has given himself
black eyes and bloody lips not to mention all the bruises. A little cold for you
or me would put him in the hospital days and could possibly take his life.
Jordan is the most amazing kid you could ever meet. He has a beautiful smile and
his laugh is contagious. He hardly fusses at all. He is a very happy child, an
inspiration to many.
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