Neurodevelopmental Assessment Update

First of all: THANK YOU! The support, love and encouragement that I get from you is incredible. In spite of my disappearance, reappearance and whiny post, you all still are my friends and are there for me. Thank you.

Second: My doctor’s appointment was ok. I have a biopsy scheduled on the lymph nodes in my neck on Monday morning. My mom will take Roo to school and MH and my dad will go with me to the biopsy. I hope the results don’t take too long to come back.

Third: today’s neuro-developmental assessment went as well as it could. Sadly, the moment we walk into a hospital, doctor’s office, professional medical building, Roo’s internal alarm bell goes off and she goes from happy, smiley Roo to sad, clingy, sobbing Roo. I had to get weighed and then I had to hold her to get her weight: 20 lbs 15 oz (so tiny). We had to hold her down to get her height: 31 inches. Head circumference: I can’t remember inches but it’s in the 35th percentile. So all good with her growth. The part of the assessment where the doctor wanted to “get her hands” on Roo and see what’s going on was IMPOSSIBLE. Roo kicked and screamed. We finally decided to take it out to the little playground in front of the hospital. Getting her out of that room for a change of scenery helped. She let the doctor see how she was moving and get a sense of where her strengths and weaknesses are in terms of her development.

After watching her play for about 10/15 minutes, MH and I went back into the assessment room with the doctor who gave us her initial assessment findings and recommendations. Right off the bat, she said that she doesn’t see any signs of cerebral palsy, global developmental delays or any signs of brain injury or damage. However, she confirmed that she sees hypotonia, which is muscle weakness or low muscle tone, and ordered blood tests to rule out or identify the cause such as Muscular Dystrophy (at one spectrum, which is highly unlikely but possible) and thyroid problems (at the other spectrum and easily treatable). She also ordered genetic testing to rule out any other things (such as Mosaic Down Syndrome).

The first set of tests will come back within 7-10 days and the genetic testing will come back in 6-8 weeks. Her DNA is now banked for 10 years, which is good because they took a HUGE amount of blood (4 vials) and it was pretty heartbreaking to hold her down for the blood draw.

So, we are now in wait and see mode for all diagnoses. I will wait and see. I will try to focus enough to keep my clients happy, keep snuggling my daughter, and keep moving forward. This Saturday, we are doing our second March for Babies for the March of Dimes. I’m looking forward to it and hope the gorgeous weather we are having in the Seattle area sticks around!

Thanks again for your love, support and encouragement!


2 thoughts on “Neurodevelopmental Assessment Update

  1. Drake has hypotonia (diagnosed cause is simply complication of prematurity and very low birth weight), and he is still having trouble with gross motor, too. His early intervention PT, developmental pediatrician, and neonatologist at the follow up clinic all suggested & recently prescribed Sure Steps orthotics. They have done wonders in just the three weeks we’ve been using them.

    I know all our kids are so different, but couldn’t not say something when I saw hypotonia. Hang in there mama, and as always good luck! Hope your March for Babies day is as gorgeous as ours was. 🙂

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