Bummer Toes

Today Jack had a visit with a neurologist. Like the night before all of his doctor’s appointments, I was up late, worrying. Luckily, I wasn’t alone. The child is getting a ton of teeth and we comforted each other in the early morning. Him, gnawing on a variety of teething implements and finally his foot, and me, nursing a glass of sub par white wine.

We were referred to the neurologist because Jack has hypotonia in his trunk and his legs. He is very “floppy all over,” a pretty common description of former preemies. His physical therapist also noted that he had ankle clonus. Both of these conditions are associated with Cerebral Palsy in premature babies.

Jack had very good luck and very good care in the NICU. He had no diagnosed brain bleeds and for a long time we thought that meant he was totally in the clear for long term neurological damage. And then comes my curiosity and my friend google. According to a variety of medical experts, of the preemie babies with CP, 50% of them did not show brain bleeds but, still have some form of Cerebral Palsy.

You can see why I was awake last night.

The Neuro was very young, very nice, and laughed at my encyclopedia like knowledge of Jack’s medical history. We had a long physical exam where all of Jack’s reflexes were tested extensively and some weird things were done (tuning harp to the foot anyone?)

Long story short. He looks “real good” for an ex-27 weeker, but he has to be followed. It’s too soon to tell for sure, but he looks too good to have an MRI. Too good to do a head ultra-sound. Too good for a diagnosis of CP… For Now (gosh, where have I heard those words before?)

We were riding home in a cab from 165th street and I was thinking that the NICU roller coaster has not really ended, it’s just that the peaks and the valleys have gotten further apart. Just when we think that all is well and we can get off the ride, we’re upside down all over again.

The neuro did give us one solid diagnosis. Jack has a genetic abnormality, hammer toes, courtesy of Archie’s side of the family. Bummer toes I called them.

Considering what we could have heard today, I’ll take the news of bummer toes with a smile.

* Edited to reflect Liz’s description of the data. Damn statistics, they are my worst enemy

4 Replies to “Bummer Toes”

  1. Okay, when you see something that says, “Do not read this if you are disturbed by outcome data, and frank discussions of risk factors”, aren’t you pretty much killing that cat, huh?
    It’s a bummer about the bummer toes, but I guess it’s all relative. Great to hear that Jack’s in good shape, though.
    Also, sorry about the sub par white wine…

  2. Hey there-
    Sorry about the bummer toes! Little Jack does not seem so upset about it. He looks great! I read what you wrote above about 50% of preemies without brain bleeds having some form of CP which prompted me to panic and read what you referenced. In truth, after a careful reading I realized that they are not saying that 50% of preemies without brain bleeds have CP. They are saying that of the preemie babies with CP, 50% of them did not show IVH’s. Doesn’t mean that a preemie has a 50% of having CP if there was no IVH! That’s somewhat of a relief in this whole preemie game….
    Hope to get the little preemies together one of these days……

  3. Arch and Sarah,

    Michelle and I just read your latest update, and spent some time looking at the super cute photos of Jack at dad’s house. So sorry we missed the baby bbq show-off, wish we coulda been there.

    After all you’ve been through with Jack, I know you’re handle all challenges with grace. We’re sending our good vibes your way from California.

    R

  4. I just ran into your blog. I have a ex 25 weeker and I agree the rollercoaster just seems to coast for longer before that unexpected or expected HIGH or LOW. good luck

    nancy

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