James Park Kennan

3-24-65 ~ 11-22-96

CS-1

 

On March 24, 1965, the second child of Roberta and Jim Keenen. Jimmy weighed 7 Ibs. 15 ozs. at birth and only 19 Ibs. at one year. He had a swallowing problem during the first year.

By 2 years, Jimmy displayed an irregular gait.  We began to ask questions and finally were referred to Drf Alan M. Aron, pediatric neurologist, at Mt.Sinai Hospital in NY. Dr. Aron said Jimmy had a rare form of dwarfism, microcephaly, and would probably not be more than 48″ tall at maturity.  Dr. Aron also advised us to handle the mental retardation through the special
education program. We decided to start Jimmy in nursery school at age four. That way he moved along without being held back. He went through kindergarten at age 6, spent 2 years in a neurologically impaired class and finally was sent to the Multiple HandicappedCenter in Wayne, NJ. All the students there have 2 or more severe handicaps. Jimmy graduated from the program in 1986 at age 21.

When Jimmy was 6 years old, he had heel cord lengthening surgery. The results were very good. He received therapy as part of the school program. From 1987 through 1996 physical therapy was continued.

Jimmy also had a corneal repair done on the right eye. This was protected by a tarsoraphy (a stitch that ties upper and lower lids together). At this time, we learned that Jimmy slept with his eyes open. Eye drops kept the dry eye condition from worsening.

At age 12, Jimmy showed signs of a hearing loss. He was fitted with a hearing aid which really helped. Now we had to juggle both glasses and the hearing aid. Mother also learned that it was imperative that you have a back-up hearing aid. One September morning at age 25, Jimmy woke up and his hearing was gone. He was stone deaf! He didn’t even flinch when the audiologist put 110 db next to his ear.

From 1974 to 1984, we did not see Dr. Aron. Since Jimmy’s condition was not operable, there didn’t seem to be any point. In 1984, we decided to take Jimmy back to Dr. Aron in the interest of medical data. At the bottom of his report, Dr. Aron wrote as an after thought, “Cockayne Syndrome?” One of my husband’s colleagues, an anthropologist, has medical library privileges and accessed the pages describing CS.

By a stoke of luck, the Creter family met the Keenen’s by illy.

In 1986, with the help of a dear friend and teacher of Jimmy’s, I zed the Willing Hands Workshop. Jimmy went to work everyday and ible to function until Dec. 1995 even though he had become blind the retinitis pigmentosa.

Jimmy was hospitalized 3 times. In March 1991, he was in our
L hospital.  In March 1992 and Aug. 1993, he was in Montefiore
Ltal in Bronx, NY. Each time he had fallen and bumped his head.
caused seizures, then spiked temperature, lock jaw, and about 7-
lys of IV feedings and antibiotics. Each time Jimmy recovered,
:here was a deficit. His vision deteriorated a little more and his
got a  little worse.  He had hemiparalysis with each
initalization, but it disappeared each time miraculously.
In Aug. 1993, we had to start feeding Jimmy soft food and baby.
By Dec. 1993, he was in the new custom wheelchair- Action Tiger
care. This chair has the tilt feature which we found to be very useful
Later we added wings to support his torso. We also had to go
back to diapers. After almost 26 years without diapers, this was
emotional thing for both Jimmy and me.

It was nearly a year later before Jim and I found out about home th aides and the fact that Medicaid would pay for this stance. We started with 3 afternoons a week (9 hrs.). Then we d 5 mornings (10 hrs.). Finally, we were given the remaining 2 moons. In June 1996, the Hospice nurse was asked to take charge inuny and she arranged for morning and evening on the weekends, and I can’t praise these 3 aides and nurse enough. They took lerful care of Jimmy and and their presence took care of the .ly. They truly loved Jimmy!

Dr. Rapin helped us sign a Do Not Resuscitate (DNR) order in 1 and 1993. Later she suggested that we have a home order also, i meant the home health aids were not to call 911. We advised Dr. .n of our desire to donate Jimmy’s body to scientific research. In i 1996, Jim and I signed the consent for autopsy and consent for »ue samples to be taken.

Jimmy went to the workshop everyday with me. He continued a idy weight loss through 1996. Jimmy died on Nov. 22, 1996 quietly, lout pain. His heart just stopped beating. On Sat. Dec. 7th, a ibration of Jimmy’s life was held at our church. Everyone tells us «ras one of the most beautiful services at St. David’s Episcopal cch. At the same hour in Spain (11 am here/5 pm there), a memorial 3 was offered for Jimmy by our extended family and dear snds.

On March 29, 1997, family and friends gathered for the interment Jimmy’s ashes in., theMemorialGarden at St. David’s Episcopal rch. Pam, Jimmy’s older sister, helped to select the beautiful den box with brass hinges that was purchased at Michael’ s Craft re, of all places, but it was perfect I It was a much needed time of sure.

 

Highlights of Jimmy Keenen’s life

1.  Outstanding Summer Athlete – Special Olympics 1992

2.  Equestrian Program for several years

3.  Traveled to Hawaii, Spain, Florida (Disney World), Montreal and the Grand Canyon.

4.  Jimmy lived to be 31 yrs. and 8 months old.

 

Helpful Hints

1.   Try using an electric blanket to keep feet warm all year round.

2.   Use a regular Century car seat.  It doesn’t have to be one specifically for a child with special needs.

3.    Use a 4″ or 5″ raised toilet seat with handles.

4.    Use a small stackable patio chair in the tub with hand held shower head.

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