Bracing for a Diagnosis (Ankle-Foot Orthotics (AFOs) and a Brain MRI)

Today, guys, I was completely blindsided.

Jax is walking, running (FAST), climbing, jumping, and generally moving like a maniac. I haven’t seen any toe-walking in about a month. Jax graduated from outside physical therapy six months ago. (He still sees a physical therapist once a month through Early Intervention.) I had put the possibility of ankle-foot orthotics and Cerebral Palsy out of my mind.

So, today when I walked in the PM&R (physical medicine and rehabilitation) follow-up appointment, I was thinking the doctor would tell us everything looked great and that we never had to see her again.

But, actually, the exact opposite happened…

Today, Jax got an X-ray of his hips and legs and then got fitted for AFOs, or ankle-foot orthotics.

The doctor also ordered a sedated brain MRI to check for brain injury that could be causing the problems in his leg.

Ummm…what?!

I’m still trying to wrap my head around this. I know that even if Jax is diagnosed with Cerebral Palsy, it is a very mild case and it will not impair him much in the long run. However, I think this is a perfect example of the other shoe dropping… and even though I’ve been waiting for something like this to happen (because all the statistics said it would), it still doesn’t make it any easier to accept.

We pick up his AFOs in 2 weeks and the MRI will be scheduled within the next few weeks. We will have more answers then.

I don’t have any deep thoughts or helpful information right now. All I have are questions and fear. I was not expecting any of this today and it’s a lot to process.

I’m going to throw out a prayer point today, which is something I haven’t had to do in a long time. Please send some positive thoughts that the MRI shows no brain injury and that we can check this off our list of preemie-related scares.

Getting fitted for AFOs
Jax wasn’t too sure about getting fitted for his AFOs today. But Mr. Bill gave him some snacks, so he thought that was ok.

 

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Author: Andrea M

Oh man, what an adventure! I went into labor unexpectedly when I was 23w3d pregnant. Jaxson was born weighing 1 lb 8 oz. A tiny little peanut, but boy was he feisty. He still is! We love it now, but we probably won't when he is a teenager. I write about our journey and all other things that come with it, including a brain tumor. We look forward to "meeting" you - come hang out with us...we're pretty cool.

14 thoughts on “Bracing for a Diagnosis (Ankle-Foot Orthotics (AFOs) and a Brain MRI)”

  1. Andrea, I didn’t see this post until today. I would never ever have guessed that he needed afo s He seems to be doing so well with everything. He keeps up with izzy and you barely keep up with him.:) Look out now

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    1. I know, right? I’m still hoping it’s just the doctors erring on the side of caution. And we thought Jax was fast now?!? Wait until he gets those AFOs! 🙂

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  2. wow.. totally blindsided. Im wishing you lots of peace and clarity as you await the results. Ill be thinking about guys and sending lots of positive juju your way. As we all know, MRIs, scans, blood tests, etc can only diagnose, they cannot predict actual outcomes. I am hopeful that Jax’s continued progress is a sign that this bump in the road will be just that.

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    1. Thanks, Alyssa! I was just finally breathing easier and thinking that the brain MRI / CP diagnosis was behind us. I don’t know what the MRI will show, but I know that no matter what – it won’t change how grateful we are for Jax’s happy belly laughs. Labels suck, but if it helps Jax in the long run, then so be it. I’m just hoping that it’s just the doctor being extra cautious because of his gestational age when he was born and that it turns out to be nothing but a scare!

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  3. Oh, man. This must have felt like a big blow, especially since Jax sounds like he’s doing so well. It’s difficult to hear bad news at appointments like this in general, but it’s a special kind of awful when you really don’t see it coming. Madeleine had a sedated MRI this morning, and I’m conveniently choosing to not think about the results until I absolutely have to.

    We are thinking of you both, and hoping this was just a frustrating blip and nothing more xx

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    1. Thanks, Alana. How did Madeleine’s MRI go? When do you get the results? I’ll be sending you guys lots of positive thoughts! Preemie parenting is tough work…

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  4. I’m sorry you are going through this next hurdle of mental anguish and unknowns. That is the worst. Period. I know that sometimes I don’t like when people tell me how strong I am in the context of parenting a micropreemie but I have to give it to you. You are a tough broad! Hold on, breathe, do what is in front of you, and keep faith. I will send lots of light and love your way.

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    1. LOL – thanks, Shoshana! I don’t feel strong, but people always tell me that I am. I must put on a good show or something? I like your advice to “do what’s in front of me.” That’s the best advice I’ve gotten in terms of micropreemie parenting. Thanks. I’m looking forward to our lunch next week! 🙂

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    1. Thanks, Libby. I know we will get through it – but it was just such a surprise. I’m hoping the doctor is just erring on the side of caution. Better to know than to wonder “what if.” *sigh*

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