Caleb’s Story

When my twin boys, Caleb & Wyatt, were 7 months old we were so excited when Wyatt starting sitting up on his own. It was such a fun milestone to see him sitting there playing with toys, eventually flopping one way or the other. We assumed Caleb would start to sit soon thereafter. Weeks turned to months and still no sitting, so I brought it up to the pediatrician. He referred me to our county’s Early Intervention program.

A week later, two therapists came to assess Caleb at our home. They determined he had high muscle tone in his legs and low muscle tone in his core, which made it difficult for him to sit. They recommended daily stretches, weekly physical therapy and a visit to a neurologist. The last suggestion really didn’t sit well with me. I did what every mom in the internet-era does… I googled  “high muscle tone.”  I kept getting results that mentioned cerebral palsy and I thought, This is why I shouldn’t play Dr. Google, I’m getting all worked up over probably nothing. The next day the boys had another doctor’s appointment for a vaccine.  When I mentioned the neurologist recommendation, the doctor started to talk about cerebral palsy and that it shouldn’t be ruled out; the neurologist would be able to tell us more definitively. This is when I fell apart for the first time (of many times that week).  I thought she was just prepping me for the absolute very worst, but a few days later the cerebral palsy diagnosis was confirmed by a neurologist. Caleb has a type of cerebral palsy called spastic diplegia, which basically means he has high muscle tone in the lower extremities. We know that this is caused by a brain injury when Caleb was in utero, during or shortly after childbirth. It’s usually unknown as to what causes this injury, but fortunately it’s not progressive and won’t get worse over time.  We believe Caleb’s CP is on the milder end of the spectrum and it seems to only affect him physically and not cognitively.His language and intelligence are both age appropriate.

That day we found out in the spring of 2012 was rough. Shane and I took turns breaking down crying and tried our best to wrap our heads around what the future will bring for Caleb.  It’s hard hearing that your son will struggle to meet milestones, will probably always have an awkward gait and will need therapy for the foreseeable future.  It’s even harder to think a 10-month old baby already has such a tough road ahead of him. My husband said it best when he explained that he just wanted to take that burden on ourselves and spare Caleb the struggles he’ll inevitably face. As the months have passed, Caleb’s diagnosis doesn’t sting quite the way it did when we first found out.

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I have every confidence in our doctors, therapists, and of course little Caleb. I have faith that he’s going to meet every goal we set for him and will grow up to be an independent adult with a family of his own someday. Whenever I catch myself feeling down about our situation I just hang out with my boys and am instantly reminded how truly lucky I am. Caleb is, and always will be, his smiley, sweet self and Wyatt is a curious but cautious Momma’s boy. I’m incredibly lucky to have these little guys in my life and a supportive and loving husband to raise them with.

3 comments on “Caleb’s Story
  1. Jen says:

    Hi Ali,

    My friend have twin boys of which one has CP. he has found success with the ABM method, I was wondering if you have tried it. From what I can tell from your blog, Caleb’s CP is much milder than his son’s (still trying to sit but making great progress since starting ABM). Caleb is adorable! I send good thoughts his way every day. I am a mom to twin boys (7 mos) also and would love to stay in touch via email. Jen

  2. tara spooner says:

    I have twins born 1st October. One of them has CP- spastic monoplegia. Amelia was diagnosed with SM at 4 weeks old. Both of them will turn 5 months old next week. I have to say that Caleb is soo cute. Amelia also does physical therapy. Have you done ABM therapy with Caleb??

    • Hi Tara, thanks for your comment. We have felt that Caleb is making wonderful progress with PT/OT so we haven’t explored other therapies at this time. We’ll be sure to keep ABM and Feldenkrais in mind in the future though!

      Ali

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