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Thursday, March 29, 2012

Ohio A Go-Go!

Ohio-bound in just over two weeks!  (You can catch up on all things Ohio, here, here and here.)

Thanks to our amazing, and generous family, the hubby will be coming with Makayla and I to Ohio, while Austin stays home in the loving care of his Auntie Jenny.  It is such a huge relief to know that Joey will be coming to Ohio, not just for the extra set of hands, but because this doctor visit may be the most important doctor visit of Makayla's little life!

Not only do we have the best family, but, the wonderful people at the Ronald McDonald Charity House have offered us a room to stay in while we are in Ohio.  They are located right across from the hospital and provide meals to the families staying with them.  The staff seems very friendly and warm, and from what I understand, a lot of the families that stay there are there to visit Dr. Hertle, so it sounds like we'll be in great hands and good company.

I've spent all week on the phone with Makayla's current doctors making sure I have all the most up to date medical records.  When Makayla was diagnosed with Nystagmus and we started visiting so many different specialists, I started a binder that has all of her medical records, including the reviews I get from her Vision and Physical therapists.  I also keep all of her doctors' business cards with contact information in the binder.

After we saw the second or third specialist, for Makayla, I realized I was having trouble keeping my doctors straight, and sometimes when they would ask all the normal health history background information, I couldn't remember who did what when the twerpies were in the NICU.  This binder keeps my sanity, and when we see new doctors, they always appreciate that I can whip out a specific page for them to copy.  This also means, that they can answer more questions right then and there on the first visit, instead of having us come back later once they've requested the relevant medical records they need, from the other doctors.  This binder has been so useful, I am considering keeping one for Austin now too, and think that any new mom should keep a record for their new baby.  You just never know when something that seems so benign, may be useful to your doctor.

I am making a mental list of all the things we need to get done in time for Ohio, and what we need to take with us.  Having Joey along will be very helpful, but, I am still a little worried about traveling with Makayla (shhh, I'm trying to play it cool with the hubby).  Makayla is a shrieker.  High pitch screams...and that's when she's HAPPY!  I hope the people on the flights done mind us too much.  We'll have a short layover in North Carolina on the way there, so the day before Makayla's appointment will be a very longggg tiring day of traveling, and I worry she won't be rested enough for all the testing the next day.

I am determined to make the best of it.  I don't expect anything will go according to plan or be easy, but we'll just roll with it and hope for the best.  Makayla is crazy about her daddy, and I'm counting on the fact that no matter how tired she is, between the two of us, we will keep her in a good mood for her visit with Dr. Hertle.


  1. Wishing you the best of luck both on your journey and with the doctors.
    Thanks for visiting our little blog! xo

  2. Wow, you sound really organized! It's so wonderful to see people helping each other and being warm and friendly, even though they were not previously friends--makes me feel warm and fuzzy! Take care and may God bless you!

  3. I just read your post from April to find out about Makayla's condition. I had never heard of it before. I wish you well on your trip, and don't stress about the plane ride. Hopefully you'll be next to a few women who are mothers, because moms are so understanding. Take a few toys, snacks for baby, and relax.
     I'll look forward to hearing how it goes.
    Leslie (aka Gwen Moss)

  4.  Thanks!  OF course I'm a little worried, but mostly we are really excited.  Nystagmus is pretty rare, but common enough that you would think there would be more knowledge of it out there, it effects 1 in 1000 people, but is most common in people with Albanian. Although, my daughter and I are both very fair, we are not Albino.  :)

  5. I'm so glad someone thinks I'm organized!  Ha!  I love organization, but think I'm pretty bad at following through...except in this one case!