Neuropsych Eval Results

As I mentioned in my last post Reagan was fitted for a new brace and she has really liked wearing it.  She was excited about her new "running shoes" to fit the new brace and has declared that she can run "Santa fast" now!  It's great to see her so enthusiastic about it given she needs to wear it outside her pants now whereas her last brace could be hidden under her clothes.  It's called a Cascade 3.5 AFO that provides her a little bit more flexibility than her previous brace (Cascade Kangaroo).  You can see in this picture, Reagan has had numerous size and style support to walk.  She got her first orthotics (on the right side of the photo) when she started walking in June 2010 followed by a new brace each year since then.  Her therapists are a little concerned that the brace is too snug, so we will return to Orthotic Solutions next week to have it reshaped or possibly have a new mold made to ensure it provides her room to grow.  This one fits ok, but we're worried it won't last long given how well it fits now.
Given it was over $800 we want it to last as long as it can!

We had our first snow for this Winter season and the kids had a lot of fun playing in it.  Reagan insisted that we build a snowman and our snowman kit came in VERY handy!  Unfortunately given how wet the snow was (and how cold Cole was) our snowman was a little on the short side this time.  But it was great practice and she has checked him for melting every morning on our way to school.  Unfortunately today he lost his pipe, eyes, and buttons.  His hat, nose and scarf are still going strong!

This week we also had an appointment with Dr. Schneider with Fairfax Neonatal Associates to review the results of Cole's four hour neuropsychological evaluation.  Our goal with the evaluation was to better delineate Cole's current pattern of cognitive strengths and weaknesses and assist in treatment planning (education plan).  We met for an hour and a half to review the 10 page document that outlined her findings.  Although our discussion started with, "he did much better than would have been expected for a preemie who started with such a complicated medical history" it was still very humbling.  I think I went into the appointment with a few concerns but overall feeling like Cole is doing so well that I wanted someone to agree.  We had a very good conversation and I have several take-aways that will enable me to help Cole work on his challenges.  Unfortunately there were several areas of development that caused red flags.  Primary concern was his delayed fine motor skills given he scored at about 18 months for most tasks (he's 37 months).  Of secondary concern are the visual issues that create numerous complications for learning.  I have a home visit with his teacher tomorrow and plan to discuss some options for more occupational therapy time.

There is a longitudinal research study being conducted on preemies at Fairfax Hospital in which Cole will be asked to participate in July.  The evaluation will be very similar to the one we had with Dr. Schneider but we will not have as detailed a report from the research study.  Dr. Schneider would like to see those results, however, and compare how Cole is progressing on several of the areas where she is concerned.  This will provide additional details on whether he is able to overcome some of the developmental delays that he has.

In reflection, it was very hard to receive this information. I caught myself wanting to explain his delays and as I read the 10 page report I found myself getting defensive about his abilities.  So natural as a mom to want to protect our children.  And while there may be an explanation (e.g., vision, low tone), it's hard for any parent to be told their child has weaknesses and that he may or may not grow out of those.  It's very humbling.  You would think from where we've come I could be satisfied that he is doing as well as he is. But I find myself searching for ways to help him overcome these weaknesses.  I can't say that this evaluation answered the question of why he has trouble with some tasks that developmentally he should be able to do, but what I do know is that the intense love that we have for both our children is more than I ever could have imagined.  I know that I will do everything I can to advocate for our children.  I know that every hour spent at appointments and every dollar spent on supporting them is completely worth it.  I know that the road ahead is going to be challenging as we face more missed developmental milestones and I pray that I have the strength to face these challenges with grace and teach my children to do the same.