Traveling with Special Needs

I think all moms can agree that traveling with a baby, toddler, child is a tough job. So did I...and then I had to travel with a child with special needs. We are heading out for our first "trip" with Avery since she has been diagnosed with OTC. Its just a quick trip down to TN to visit my sister and niece, but with everything we have packed you would think we were heading out for a month long excursion. 

Some of the things we have to pack are:

- Medicine -this includes Buphenyl, L-Citrulline, Aquadek, Mephyton. Enough to last roughly a week even though we are only taking a 2 day trip

-supplements like her EAA

-Juice- bc Avery likes a special juice to mix her supplements in

-milk- bc Avery drinks almond milk with her meds

- special snacks just in case we can't come across any low protein options on the road

-scale- to weigh and measure food or meds if we need to 

-Avery's log book- this book is used to keep track of her meds and also holds all the VIP numbers we have to have with us at all times (of course all of these numbers can be found in my phone but this is a back up just in case)

-Avery's special cups- bc she's very picky and will only drink meds out of one cup and her supplement out of another

- syringes- just in case Avery decides not to take her meds that day and we have to mix them up and give them to her orally by syringe...this is fun for no one

- Don't forget all of the normal kid things that we all need like toys, books, movies, clothes, diapers, wipes etc. 

-Pack and play

-stroller

Luckily we are traveling with my mom and younger sister so there will be lots of extra hands to help out when needed. 

My biggest concern is that we are 4+ hours from any team that is familiar with kids with UCD's ( basically the closest team is back in Cincinnati). Currently, we don't have any emergency Meds that we travel within case we have a crisis event. Do people still do this? My mom always did when we were younger but maybe most hospitals stock this now. Just praying that everything goes smoothly and we have an awesome time. Wish us luck.