Wednesday, September 12, 2012

Fragile X Infant Study / NC Trip

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In late August, we packed up the family and headed down to North Carolina - UNC specifically - for Emma to participate in the first part of a longitudinal research study for infants with Fragile X. (More on the travelling in a bit!)   She will have visits at 6 months, 12 months, and 24 months where she will undergo an MRI and developmental assessment.  The MRI takes place while sleeping, and the developmental assessment is very straightforward - especially for those of us that have gone through them for older siblings before!  Emma did fantastic with the MRI which was the only portion I was worried about at all.  Those machines are loud, and sleeping through them seemed near impossible; however, she made it through the entire MRI only waking up one time and going back to sleep fairly quickly.

We haven't received all the information back from the developmental assessment, but the summary looks very good.  Emma is where she needs to be in all areas developmentally.  At 6 months old, this is a huge relief.  I don't remember seeing delays with Ayden until around 7-8 months, so hopefully the next few months will keep her on track as well.  I still have a couple areas that are a concern to me even with her testing coming out fine.  I am praying those areas continue to progress though and the difference I see are just due to different kids developing differently.

As for the study, you can learn more about it here if you are interested.  If you are a Fragile X carrier and either expecting or have an infant under 6 months with Fragile X you really should look into this study.

Now, back to the travelling.  When I say we packed up the family I mean we packed them up, drove to Detroit, and then flew to North Carolina.  On a plane.  To say we were a bit nervous about flying with a 5 year old, 3 year old, and 6 month old might be an understatement.  Especially with Ayden.  We did our best to explain what would happen, trying not to explain too far in advance, and then hoped for the best.  As usual, my children never cease to amaze me.  After getting up early, riding almost two hours to the airport, riding in a shuttle, fighting crowds, and going through security -- ALL of the kids were meltdown-free through the entire flight.  Ayden was most excited when we took off.   Both him and Issac were just staring out the window.  After that, it was just like a car ride to them.  We landed with just as much ease, hauled them through another airport and into the rental van then finally to the hotel.  By this time it was far past lunch time.  We grabbed a bite to eat and then took a nap before heading to dinner out and Emma's MRI.   Our first day of travel, which is exhausting to me again just typing it - had us returning to our hotel around 11pm where all of us crashed. But we were meltdown free the entire day!

The next two days were not nearly as good - but for as much as we pushed the kids I couldn't really ask for much more than they gave.  Ayden especially did such an amazing job trying to be good and not whine.  I watched him teeter on the edge of meltdown a few times and bring himself back.  We did have a fantastic time, but it was infinitely exhausting.

The highlights of the trip were definitely meeting the wonderful team at UNC working on the study (I won't name their names here...but there are only two of them!) and how amazing everyone was that we encountered while travelling.  I can't even count the number of times we were told how polite and well-behaved our kids were.  One couple even told us we made travelling with three kids look easy (HA!).  It wasn't just the positive comments either - friendly faces, smiling, being polite.  We honestly never had one person shoot us a dirty look or look at us like we were inconviencing them.

All in all, it was a very successful trip - for a very good cause.


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