I’ve Been Waiting for the Other Shoe to Drop

In the 20 months since Sam was born, we have been really lucky. Yes, he was just 24-weeks when he was born, spent 95 days in the NICU, had heart surgery and eye surgery… but other than a hospitalization for RSV last December, we have had no long term issues to deal with. So it was with great surprise that our 18-month high risk clinic evaluation didn’t go well.

I was sure we would walk in, they would take one look at Sam and tell us that there was no need to come back. I mean, here he was, walking, talking up a storm (in two languages no less), playing with toys, and interacting with other kids. But no. Not only did they not fire us, but they referred us to OT, PT, speech therapy and a pediatric ophthalmologist.

According to the doctor, Sam was showing some delays in his fine motor skill and perceptual motor skill development. This could be related to his ROP, hence the referral to the opthalmologist. It could also be a developmental delay between in his hand-eye coordination. Whatever it is, we will be seeing a bunch of specialists over the next few weeks.

On top of the fine motor skills issues, the doctor was concerned about Sam’s lack of eye contact. He never once looked the doctor in the face. It seemed like he went out of his way to not look at her. I have noticed that Sam is not that big of a fan of strangers, and doesn’t go them easily, but I have not really paid attention to his ability to make eye contact. I know he will look at me and other people he is comfortable with in the face, but strangers… I don’t know.

Here are just a few shots of Sam interacting with his oldest friend – Bennett (also a NICU grad):

Sam the Anti-Preemie with Bennett

Sam and Bennett - plotting something

Sam the Anti-Preemie and Bennett

Sam and Bennett Dancing

Sam the Anti-Preemie and Bennett

Sam and Bennett continue their dance

Sam the Anti-Preemie and Bennett

Sam and Bennett - Finish the dance

Of course, all of this has gotten my terror over autism back to the forefront. I told the doctor this was one of my biggest fears, and while she didn’t say what she was seeing was a sign of autism… she didn’t say it wasn’t. I am doing my best not to let my mind wander, but its hard.

Do you have any experience with fine motor skills delays? Any advice?

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  1. Melissa, sorry to hear about the worries. I often painted an overly optimistic picture on our blog, but suffice to say, the follow up clinics generally did not go well. M&M needed PT, OT, and speech. Milo got referred to the eye doc, and I too had big worries about autism. Let’s talk Wednesday. Best, Rob

    • melragent says:

      Thanks Rob! I would love to pick your brain about this. Would also be good to know who you took Milo too. See you Wednesday.

      • We mostly saw Dr. Daily for infant follow-up assessments as I recall. Alex did one of the evaluations, but that was for Maddy. (Milo typically was the recipient of the bad news.) Milo still sees Angela Korpula for speech therapy at the Herrick Campus once each week. Angela gets very high marks from us – she’s great and Milo absolutely loves her! For OT the kids saw Susan Campodonico and Katherine Zwold (sp?) once a week also at the Herrick campus; they were great too. They were very energetic and really helped engage Elaine and I in the process. For PT, we saw woman at Children’s in Oakland once a week for about 6 months when the kids were around 19 months or so. I don’t recall her name, but she had a lot of trouble working with our kids. I got the sense that she was not used to dealing with toddlers, and she always seemed very frustrated with M&M. For Milo’s eyes, we see Dr. Tina Chow at Children’s, she also comes highly recommended. She is really terrific with kids.

  2. Melissa, I am sorry these news are so stressful for you. I understand why you are anxious about this latest evaluation. It is very easy and natural to imagine your worst fears coming true for your baby. While you are waiting for the outcome of OT, PT and eye exams, I hope you can find a way to calm your fears down. If autism is what scares you the most, you may want to talk to people who have autistic children. There are many online resources, but it is too easy to focus on – and only read – the ‘negatives’.

    If you want to, I can put you in contact with moms of autistic children.
    I am also happy to lend you an ear if you want to talk to somebody who has gone through many evaluations with potential outcomes anywhere from harmless and transient to potentially life impacting. I sure know that fear, and though I have a child who had to tackle a number of challenges, she is overall healthy and happy. Given that history, I also know a great number of various specialists. No need to contact me, if this is not what you want now, but know that you can always ask for my help.

    Best to you and yours.

    • melragent says:

      Thanks Mascha. I really appreciate the words of encouragement. I just may take you up on your offer to talk to people… but i think I want to wait until I go in for our evaluation. I think talking to someone might make my fears worse as it would make them more real… or something like that.

      • Yes, I think I know what you mean, and I agree. Talking to parents to understand the real life obstacles and joys of a certain condition can certainly be put on hold until you know what – if anything – you are dealing with. I just wanted to convey that you might want to face your fear, define the worst possible outcome for yourself, try to accept it, and find peace within yourself, knowing that you will be able to find the strength and support to handle it. Because the love for your child will not change, or if, it might become stronger.

        It was a path for me to look at my girl and be happy about what and who she is without constantly worrying what her problems might be. I also dealt with quite some mother guilt even though I rationally knew I had no fault in the situation. But it is absolutely essential to go through that exercise for not letting the challenges determine who your child is.

        Warm wishes.


  1. […] in May, I wrote about our 18-month evaluation at the high risk infant follow up clinic.  I went into the appointment […]

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