Friday, June 21, 2019


The U-haul is sitting in the driveway waiting to be loaded.  I wouldn't let Sam put anything inside it last night out of fear of losing my visual guidance of the items I packed.  I just finished the last of Sonzee's boxes, but those are the last things to get loaded since Sam will have to take the majority of them out each night due to temperature parameters.  I remember the first time we traveled as a family of 3 with Sonzee's oldest sister.  We had so many bags and so many items all for this one little baby.  Now I look at Sonzee's section of the garage pile-which extends into the main area of our house so those items stay cool and I wonder how one person can require so much.

This year marks the 4th summer we will be going to NY with Sonzee.  The only summer of her life we missed was the first year she was born because we were so afraid she would start having infantile spasms and we would be in the middle of nowhere.  Every year since her doctors wish us well and send us on our way, reminding us before we go how proud they are for us not stopping our lives, how great it is that we still go, and how we can reach them at any time if we need to.  Every year we pack up and go more excited than apprehensive, however, this year I am filled with more anxiety than excitement.

This will be the first time we will have traveled out of state with Sonzee since she had her central line placed in December.  This will be the first time she will be on TPN/Lipids and we will not be within a familiar hospital's nurse's reach if she has an emergency or needs emergency labs.  The closest hospital is a regional center that we have visited once and she was out of their comfort zone and all we needed was basic abdomen x-ray.  I am so beyond fearful of a fever.  I am scared out of my mind for a central line infection.  Will she require air flight if that occurs since the children's hospital (that her amazing GI told us to use because she knows the doctors and will coordinate her care once we tell her we are on the way) is over 2 hours away?!  I want to plan and prepare, I do not even know how, and I want it to be a complete waste of time and worry.

The Mighty Contributor

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