livin’ it up NG-tube style

The trip to Martha’s Vineyard (MV) was so much fun.  K2 and I left Friday, July 8th and headed to PA to spend the night at 425.  We all went to bed for a few hours before we embarked on our journey.  KEM slept pretty well, especially since he had to sleep with his sister.  (This girl never stops talking and so naturally she never stops moving in her sleep.)  I made two trips carrying the kids to the car.  KMM was much easier to carry than KEM.  When I picked up KEM I noticed that his back was wet and thought “Oh Lord I hope he didn’t pee himself”.  Thankfully he didn’t – the tube connector had come apart and his formula was leaking; the damage to the bed and the sheets wasn’t bad!

The car ride up was going well until KEM’s Kangaroo Pump starting beeping.  Silly me didn’t think to charge it while he was “feeding” at 425 and so the battery was getting low.  We were planning to stop in NJ at the last exit so the timing worked out perfectly.  Although we didn’t plan to stop for as long as we did we needed to charge the pump back up.  Once we got some juice in the pump we made our way back to the car and good ole’ 95 North.

Finally we got to the Vineyard and all settled in at the magical Beach House in Oak Bluffs.  Unfortunately the weather wasn’t as nice as we hoped so we had to find other things to do since we couldn’t chill at the beach.  One day we ended up taking the kids to see “The Secret Life of Pets”.  The movie was great and so was the company.  KEM struggled a lot mentally with not being able to eat popcorn at the movie theater.  However, I did find some Pirates Booty for him to eat instead.  The only bad thing was that the amount of Pirates Booty that he COULD eat was next to nothing because there are lots of calories in them.  He dealt with it as best he could and just went back to watching the movie.

The next day was the first nice weather day so KEM was really, willing and anxious to take the tube out so he could go swim in the ocean with KMM and his cousin ALH.  He was adamant HE would be taking the tube out so I let him (let me know if you want to see the video!).  This first time I had to put the tube back in was a bit of a nightmare. KEM had way too much time getting worked up about me putting the tube back in – it took everything in me to just say nevermind we can do it tomorrow.  But in the end it worked out and I got him settled and the tube inside.

The last nice beach day we went to the Oaks Bluffs-Edgartown bridge to jump off.  KEM took his tube out that day too. He really was hoping to catch some crabs during the day but wasn’t successful.  We all trekked over to the bridge.  KEM decided he didn’t want to jump and instead was going to help his Gammy with taking videos and photos.  KMM jumped off one time with me and did a great belly flop.  She was hurting a little bit after that jump and said she didn’t want to jump again.  Naturally, I tried to coax her into doing it one more time but she had enough jumping – so we headed back to the house.

The worst part of any vacation, especially in MV, is knowing it will come to an end.  I always hate leaving there and wish I could stay the whole summer.  I would earn my keep by cleaning – anything – maybe not the shed though with all the spiders and spider webs.  Lord knows I would probably scare them away with my screaming.

KEM did great while we were in MV as did KMM.  ALH (cousin) was so sweet with KEM and told me several times how sorry she was he had this disease.  I thanked her and told her that he could still play just like before.   In a way I think it was good for KEM to hear ALH and how upset she was for him.

Oh yeah – the MRE results were positive.  Nothing to worry about and no furthering of the disease.  YAY!

Here are some pics from our MV adventures…

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