P's Progress

When P was 5 months old, my husband and I grew concerned about some differences in his physical movements and abilities. Since the children were born 8 1/2 weeks prematurely, we knew there might be some developmental delays and we wanted to stay on top of things.

P was born last and was the smallest at 2 lbs 6 oz. We marvelled at the fact that despite how small he was, he seemed quite strong. (We would later discover his increased muscle tone/tightness made him seem stronger.) When he was in a relaxed position, he always seemed a bit contorted. We also noticed when he would bounce in his Jumparoo, he would just use one side of his body. We were sleep deprived, first time parents, so we decided to call in a group of therapists to evaluate him and alleviate our fears.

The therapists agreed that he had increased muscle tone and would benefit from physical therapy. They also determined that P should receive speech therapy because of lip and facial weakness. When he would drink from his bottle, milk would pour out of his little mouth. As he started eating solid foods, he seemed to have a lot of trouble with chewing and gagging as well.

After hearing the words "tonal" thrown around by therapists frequently, I started doing some research. It kept leading back to the 2 scary words I had dreaded from the time I started learning about the risks to premature infants: Cerebral Palsy.

When I went into preterm labor at 23.5 weeks, we set our first goal at 28 weeks (for greatest likelihood of infant survival), then at 32 weeks (decreased risk of brain bleeds, i.e., Cerebral Palsy). Cerebral Palsy(CP) had been the big, scary diagnosis.

When P was 12 months old, we went for an MRI to determine if, in fact, there had been a bleed. The finding was positive. By definition, P had CP. We were remarkably calm about the diagnosis. It was not a surprise, merely a confirmation of our suspicions. Occupational Therapy was added to his weekly schedule.

The big unanswered question was how impacted he would be. There is a huge spectrum of Cerebral Palsy, from the wheelchair bound to those who live "normal" lives with very mild effects. There is no crystal ball and no guarantee of what the outcome will be for each individual.

P received 5 hours of therapy each week, and gradually he started making progress.
At 13 months, he rolled over without assistance.
At 15 months, he began to crawl.
At 17 months, he walked.

A few months ago, P was released from his weekly therapy sessions. We all agreed the best thing for him right now is to play and develop alongside his siblings and his peers. We plan to periodically re-evaluate his progress. There are a few things he still struggles with. At 30 months, he cannot quite climb stairs normally. He has an awkward gait, especially when running. He still appears a bit "drawn up" when he is tired or sick. He still prefers to use his right hand over his left. Yet, these things really do not seem to matter on a daily basis. His CP is classified as very mild.

His speech is beautiful. He is incredibly smart. He sings constantly. He is quite the comedian. He climbs and swings like a wild 2 year old boy. P does not know he is different. The other children do not treat him differently. His favorite phrase these days is:"You wanna play ball wiff me?" He is my P. I cannot imagine him any other way.

Yesterday we travelled to see the neurologist for our 4 month check-up. After evaluating P, he remarked at his progress and told us he would not need to see us for 8 months this time...and that hopefully that will be our last visit.

I realize every situation is different, but when I think about Ivey, Addison, Ezzy and many other friends of mine with children who have scary diagnoses, I reminded that NONE OF US have a crystal ball (even with our children who do not have scary acronyms on their medical charts). Each of them were fearfully and wonderfully made by the ultimate Creator...and there is a purpose and a plan. Aren't we blessed to have a front row seat as the story unfolds?

Psalm 139: 13-16 (The Message)
Oh yes, you shaped me first inside, then out; you formed me in my mother's womb. I thank you, High God—you're breathtaking! Body and soul, I am marvelously made! I worship in adoration—what a creation! You know me inside and out, you know every bone in my body; You know exactly how I was made, bit by bit, how I was sculpted from nothing into something. Like an open book, you watched me grow from conception to birth; all the stages of my life were spread out before you, The days of my life all prepared before I'd even lived one day.