With preemies, they have an actual age and an adjusted age. So, since Kaitlyn was born 3 months early, her adjusted age was always her actual age - 3 months. Therefore at actual 6 months, her adjusted age was 3 months. For most milestones, her doctors looked at her adjusted age. When she wasn't rolling over at 4 months or wasn't sitting up at 6 months her doctors told us not to worry, that she'll most likely "catch up". We heard that a lot. Apparently many preemies do indeed catch up to their peers by the time they are 3 years old. So, for her first year of life we chose to focus on the fact that our beautiful baby girl was alive and growing. The fact that she was incredibly cute and super happy made it very easy to overlook the fact that her gross motor skills were behind. We had the best time with her. I swear, there has never been another baby more wanted or more loved than Kaitlyn.
In May of 2005, when Kaitlyn was 13 months old we took a great vacation to Kiawah Island in South Carolina. We brought Kaitlyn to the beach and to an aquarium for the first time, we strolled the streets of Charlestown, and we visited a plantation. It was the perfect southern vacation. When we got back, we had an appointment set up at the "Special Infant Care Clinic" at the hospital. This clinic was made up of a team of neonatologists who had been following Kaitlyn since birth. We went in feeling happy and relaxed following our vacation. The doctor examined Kaitlyn, as she had done several times before. When she was done, she left the room, and returned with a grim look on her face. Her words "I think it's safe to say that we can officially diagnose Kaitlyn with cerebral palsy.". I remember looking at Chris, and looking back at the doctor and feeling a little unfazed. I am embarrassed to admit that I had very little idea of what this meant. We knew this was a possibility, but when hit the reality of the diagnosis Chris and I completely froze. We barely asked any questions, which for those of you who know us know that's REALLY unusual. We were told that the type of CP she has is "Spastic Diplegia". Translation - Spastic = Tightness of the muscles; Diplegia = Of the lower extremities. Okay, so Kaitlyn's leg muscles are tight. Tell us something we don't already know. As it turns out, we couldn't have imagined how much we actually didn't know.
The date of that visit was May 18, 2005. The next few days were spent researching, reading, questioning, and panicking. During this time, Chris and I had been hoping to have another baby. Upon hearing Kaitlyn's diagnosis, I suddenly began thinking that we should put those plans on hold. I couldn't imagine having another person to take care of. Clearly my focus needed to be solely on Kaitlyn's condition. Five days after her diagnosis, on May 23, 2005, we found out we were expecting another baby. I may not be the most religous person in the world, but I have to believe that someone "up above" was watching over us. Connor would turn out to be the happiest, healthiest baby ever. When he was an infant, I was in awe of how easy it was to care for him. It was so wonderful to have a baby who never stopped breathing, who never had a heart that ceased to beat, who simply loved to eat, sleep, and smile. I always said that Connor was easy to love. I had no idea that he would turn out to be Kaitlyn's #1 fan, best friend, and protector. I am so thankful that I wasn't allowed to take time to consider NOT having a second child.
So diagnosis in hand, and baby on the way, we set out to learn everything we could about "CP". Within the next few months we met countless professionals in the field. These people who would soon make up "Kaitlyn's Team" included:
- Physical Therapists
- Physiatrist (doctor of physical medicine and rehabilitation)
- Orthopedist
- Neurologist
- Pediatrician
- Special Infant Care Clinic Doctors
Wasn't Hillary Clinton who said "It takes a village to raise a child."? In Kaitlyn's case, that couldn't be more true!!!
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