I never dreamt that tender blossoms
would be brown
or precious angels could come down
to live in the garden
of my giving heart... but here you are
-Walter Dean Myers
Born March 8 1996, Kim came to us not by stork but by airplane
from Wash DC. She was met at the airport by her new family -
Brenda, Steve, and big brother Myles.
Grammy and Grandad were there too and as Myles says "Mom and Grammy were bawling and the men were taking pictures!". At birth she weighed 2 pounds 12 ounces and stayed in the hospital for 7 weeks to gain weight and then was in a foster home for about 3 weeks while our paperwork was processed. She was so tiny and slept a LOT!
Little did we know how this beautiful baby would change all of our lives! Kimberly had been born 10 weeks premature and at her first pediatric visit the doctor said she didn't seem to have any of the common problems that preemies often face. We felt very blessed. Then at 6 months old Kim's eyes began crossing and she had the first of two surgeries to correct it. At this time mom began to have the feeling that there was more to come. After being assured by the doc's that she would "catch up in a couple of years" Kim was diagnosed at 15 months with Periventricular Leukomalacia.
In her case the PVL also caused Cerebral Palsy. Since then we have learned, laughed, cried, and loved her more than we ever thought possible. She is teaching us what matters most in life.
She has had one seizure Feb 1999 which lasted around 10 minutes and two in Dec 1999 that were about the same length. Each time she has had a fever so we are hoping she will outgrow them. Kim has the type of CP known as spastic diplegia which means, in very simple terms, that her muscles are very tight and resistant to stretching and the legs are the most affected. Kim attended an Early Intervention program where she went to Toddler school twice weekly and had Occupational and Speech Therapy once a week. She did some hippotherapy in 98/99 and is now attending PT twice weekly and OT and speech once per week. She will also had OT and PT provided at her developmental pre-school.
She is a very loving and talkative child.
Her favorites are her brother Myles, PBS kids shows, and Pooh bear.
She has a walker and quad canes that she uses at home but still mainly crawls
to get around the house. She has a Zippy II wheelchair
for school and transportation. It is her favorite color- purple!
She used quad canes somewhat during school.
Kim had her third eye muscle surgery in October. She still uses only one eye at a time and they are drifting out now so in an attempt to keep them in alignment several surgeries may be necessary as she grows up to give her the best chance at learning to use them together.
Kim was evaluated and found to be a candidate for an operation called
Selective Dorsal Rhizotomy (SDR). I have added a
journal describing our experiences with the surgery. The surgery was done on Sept. 1st 1999 and she is doing fantastic!
Just when we thought we had made it through all of the more serious surgeries we recently found out that Kim has hip dysplasia which will require another BIG surgery this summer. It has been hard to accept this one. I decided to write about it here in hopes of alerting other parents to this condition before it is too late for other options. For a couple of years I have wondered about her legs being different lengths. I asked about it at the ortho and it wasn't answered. We went through the SDR and it just didn't seem like something to worry too much about at the time as we were going through the rehab process from that surgery. Recently, I discussed it with Kim's pt and she was kind enough to help me out by writing a letter to the ortho specifically asking about the hip. Luckily, or unluckily (????) they decided to finally do hip x-rays on her. That is when we got the bombshell. Her left hip is subluxed and partially out of the socket. Her right hip is entirely out of the socket and there is no socket to speak of as one never developed. The process of the hip socket developing comes from standing and walking on it as we grow. In children with cp or other orthopedic conditions, the hips should be carefully monitored. Especially with spasticity pulling them out of alignment. Please ask about your child's hips regularly even if you have to become the doctor's worst nightmare! Just moving the hip around in an exam is NOT enough. Kim's hips were checked every time we went to the checkups and it wasn't caught until the x-ray. Kim had the surgery June 26th and the jury is still out as far as any benefits. As of December she still has not regained her strength and has a lot of pain in the hip.Varus Osteotomy Information
Click here to meet Kim's Skilled Companion Dog!
Kim has just ordered a candy red power wheelchair! We should be receiving it this month. It will be interesting while she learns to drive it. We are looking forward to her becoming more independent!
She finally stopped complaining about the hip pain a couple of months ago. Now it rarely bothers her and the doctor said they will leave the hardware in for now unless it becomes painful for her. In the future, if there needs to be any further work on the leg, they will remove it at that time rather than make a separate procedure.