Road Trip!

Tom is ready for the road trip!

We are going on a fun road trip (not medically related) this weekend to visit my brother and his family in Washington DC.  I'm so excited to see my three nephews, my brother and his wife, and maybe even some other family that might drive in for a visit. My brother is in the military so we try to take advantage of it when he and his family are within driving distance of us.

Tom is quite the road warrior. He went on his first road trip at two-weeks-old for his first eye surgery in Detroit. We were regular visitors to Detroit Tom's first year but now most of our trips are just for fun. I can't tell you how happy I am about that change!

It is a challenge to keep Tom occupied in the car. He won't be happy looking out the window like a sighted child and I can't just play him movies. So how do we do road trips with a blind child? We prepare!

Tom's bag of snacks and feeding supplies is pictured below. You know the clear plastic bags that sheet sets and curtains come in? Well don't just throw those away - use them! It is great for storing little toys or making little organized sacks for trips.

I keep a bag like this in both of our cars that I pack with g-tube supplies in case of an emergency. I know from experience that you can't expect a hospital to have the right g-tube supplies on hand. They might have the supplies in the hospital, but it might be an hour before they can get you the connector or other item you need. I like to be ready with my own stuff and now I always am. I love that the bags are clear. It is comforting to know just by looking what's in a bag.

Food & tube feeding bag (yes, it's the bag my bed sheets came in)

Contents of Tom's magic tube feeding & snack bag:

• Honey nut Cheerios
• Mott's fruit gummies
• Oranges
• Diced peaches
• Mini pretzels
• Cheese bunny crackers
• Mini graham crackers
• Feeding tube supplies ( bolus, extension set, syringes)
• Neocate Splash 
• Microwave Mac n Cheese
• Tom's favorite type of spoon

I am working in the morning and then going to a quick meeting at Tommy's school before we get on the road. I am hoping that Tom will decide to take an afternoon nap. He usually likes an afternoon nap. I've got a bag of toys and his iPad all charged up. Kid songs and audio books will keep him busy while he is awake.

If we get desperate we can start singing Christmas songs again! One road trip to Maryland was rough for Tom and singing song after song was the only thing worked. I sang a lot of songs that trip! I'm hoping for smoother sailing tomorrow. Have a great weekend!