As you all know, Jax has been in Physical Therapy for the last five months to help him learn to move: roll, crawl, stand, and eventually, walk. He loves his Therapist and the sessions seem like play time for him, so he doesn’t mind them one bit. I really like his Therapist, too, because she does a great job of explaining what she’s doing and why. She also gives good suggestions for activities for us to do at home.
Ever since Jax was very small, I have noticed some increased tone in his legs, ankles, and feet. In other words, he “stiffens up.” Jax’s pediatrician also noticed it, which was one of the main reasons Jax started Physical Therapy in the first place.
So, Jax’s Therapist has been keeping a close on him. Now that Jax is standing, it’s becoming a bit more prominent. When Jax stands, he very consistently goes up on his toes. I mean, literally curls his toes under and stand on his toes. This is especially happening on the right side.
And then last week, Jax’s pulmonologist noticed it out of the blue (he wasn’t even looking for it.)
Kids who were born as early as Jax have a very high chance of having Cerebral Palsy and one of the symptoms of Cerebral Palsy is increased tone.
So, it’s time for Jax to see a specialist to rule out Cerebral Palsy or other issues that might be causing his increased tone and “toe walking.”
I’m anxious. And scared. And really bummed out about this! And the worst part is that the earliest appointment is not until November 25! That’s a long time to wait and worry. I knew this would be a possible path we would have to take, but to actually have it start happening…now that’s another thing entirely! Jax is a long way from a CP diagnosis and his symptoms are mild. But, it’s just so scary hearing the words: “I think he should see a specialist.” and “Cerebral Palsy” in the same sentence.
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An Early Start 
Oh man. I gave birth to 25-weeker twins back in December, and then my daughter had a brain bleed. It feels like CP is always lurking around in the backs of our minds. Even if it’s mild, and even if there are lots of options for getting as much help as possible, even if your child will still be totally amazing and perfect no matter what, I think it’s only natural to hope that they’ll emerge unscathed. Wishing you guys all the best, regardless of the outcome!
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Thanks Alana. I’m following your blog now! Your babies are precious! Thanks for reaching out. It’s hard not to worry. But it’s impossible not to! I do know that Jax is a tough little guy and he’ll work through whatever challenges that are thrown his way. He is my hero! And alot stronger than I am!
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Wow! I love taht little boy. Know that I will be praying and praying. We love you all and when know that God has huge huge things planned for his life! I will lift you all up. Praying now and through the 25th.
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oops, this is josh 🙂 Love you guys.
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Thanks Josh! We are so lucky to have a pastor like you in our lives!
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I know it has to be so hard to hear. Please know that my brother was diagnosed with CP back in the early 70s before all of this awesome physical therapy stuff. They told my mom that he would never walk. That was at 9 months old. She brought him to the pool and worked out his little arms and legs. She did his physical therapy. He now lives a completely normal life. He did two MS150 marathons. He is married and has 3 kids. He has a very good career in computer programing at a very good company (makes bookoo bucks). He walks with a slight limp and his right hand is still somewhat contractured, but most people don’t even know he has CP. It has not limited his life one bit. Jax already is standing and walking so he already has so much going for him. I just know that kid is gonna be awesome! I’ll keep you guys in my thoughts and prayers. Let me know if you need anything.
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Thanks for this Jen! Your mom is an amazing woman for raising you kids. And I’m so glad your brother is doing great. We are so thankful that Jax’s symptoms are mild. So even if he does get a CP diagnosis (which I really don’t think he will), he will face it head on and nail it! See you tonight!
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Just wanted to let you know i have been keep up with your blog. I also wanted to let you know you are in my thoughts. Parenting is hard work especially when we have to worry about stuff over and above the expected/”normal” everyday worries.
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Thanks, Alice. I think the people who really “get it” are the people who have been there. How is beautiful Phoebe doing?
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Phoebe is doing great, rolly poly and one strong character ( she keeps me on my toes and sleep deprived). She had her first surgery at 9 weeks back in May. Now she has a 4-5 hour cleft team appointment next Wednesday which will give us the overall calendar of when she will be seen and by whom over the next few years. A lot of dentists and orthodontists, ENT, plastics, and I think a social worker. Overall our worry level is tolerable now, but it was off the scale while pregnant when we didn’t know if there would be other issues. The not knowing is torture. I wish you and Jax the best.
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I’m so glad to hear she’s doing well! It will be a relief to have a plan coming out of next week’s meeting. It’s a full-time job juggling all the specialists! She is lucky to have you as her mama….
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Wonderful statement Kelley. I was going to tell her the same thing-CP has many stages and levels, if it is his diagnosis-then move on from there, but I would say he has a MILD case if in fact he does have it! Could possible just be a muscle/tendon issue?!? Either way, you have support to help if you need it! Prayers and possitive thoughts sent now as always! Love you guys!
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Thanks, Tracy! Yes, we are thankful that even if Jax does have CP, it would be a very mild case. (I’m holding out that he does NOT have it all!) Thanks for all the support…
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Hi Andrea, this seems all too familiar. Though I don’t “remember” my diagnosis, I have cerebral palsy, even though it is obviously very mild. I too had the “tone” .in my legs that caused me to walk on my toes ALOT when I was little. As I grew, had physical therapy and only a couple of suregeries, my gait is not perfect but much better than it was when I was young. I know it is scary to think that Jax might have CP, it is a diagnosis that does not get worse over time. I am sure you are aware but there are some kids diagnosed with CP that will never leave a wheelchair, they can’t talk, and cannot feed themselves. Jax is not one of these kids. He is a miracle kid and has already proven the doctors wrong. Even if he gets the CP diagnosis that isn’t an automatic path to not walking or having continued problems. Yes, he will likely have struggles, and those are different and vary in degree for each and every person with CP. I KNOW Jax will walk and he will be a successful, happy and healthy kid and it has a lot to do with who his parents are and they are raising him. I will definitely say a prayer that he doesn’t have that diagnosis but if he does. It will be okay. Look at me as a testament. He can lead a happy, healthy life and be fully capable to do anything and be anything he wants to be. Having CP might help him to have compassion for others and a determination like no other. Sending hugs and good thoughts your way!! 🙂
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Thank you for sharing your story, Kelley. I did not know you had CP! How old were you when you were diagnosed? I”m so thankful for your compassion and thoughtful comments on the blog. I know how lucky we are that Jax’s symptoms are mild. And you’re right, if he does get the diagnosis, it will be ok. He will be ok and we will be ok! Thank you for helping me put things into perspective.
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I was one when I was diagnosed. I was born 2.5 months early and weighed 3.4 Ibs,. Because I walked on my toes I had to have a heel cord lengthening surgery to relax my heel cords to allow me to walk. I had this surgery when I was three and started walking shortly after that…..I still remember the railing that my Mom had put up on a wall in our house, I practiced balancing and walking with that…. that was in 1980 so I am SURE medical technology and capabilities are even better than they were! I also went to Gillette Children’s Hospital for my braces for my legs, physical therapy over the years and diagnostic testing. Perhaps that is why I am so intrigued with Jax and your story. My heart goes out to you all and it has been an absolute joy to watch all the success he has had!! If you ever have questions about my past or whatever I am more than willing to connect! I would LOVE to see you again and meet Jax!!
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I also didn’t know you were a preemie! 🙂 It’s so amazing what the medical community can do to help. They are helping babies at younger and younger gestations all the time. Do you still wear braces on your legs? Now that RSV season is here, we have to limit contact with other people, but in the spring, we should plan a day at the park and the boys can play!
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