Sunday, July 24, 2011

Missing but still in Action

We've moved; we've gone to family camp and we have continued to deal with AJ's medical issues.  Just too much to do and blog at the same time.

We are in our new home in Stewartville.  What a blessing to own our home again (well actually two homes but that's not the long term plan).  We started out right away with remodeling and adding a bedroom so that it will meet everyone's needs.  AJ and AW share a room temporarily until AW's room is finished.  You have to visualize it (sorry no pictures of the room).  It really is a disaster. An 18 year old with his three year old brother having lots of fun sharing a room (I do think they both enjoy it - sort of - AJ is loving it and AW likes it)  Go figure; In a matter of days, AJ was sleeping in to almost noon - just like his teenage brother - of course going to bed with an IPOD, watching a movie would have an impact - that got nixed and he is now getting up in the mornings but not as happy at night :(

AJ's new roomate

AJ with his bigger and better headphones!  
We are really hoping his does not pick up his brother's 
need for high tech electronics :)

We spent ten days at our church family camp.  The kids just love it.  It is our annual trip.  AJ is now old enough to take part in the preschool classes.  It was interesting to watch the reactions of the kids around him.  Because we did not have the opportunity to explain to the 30+ some kids about his bandages, there were a lot of "frozen looks" - described as kids that walked up to AJ and just stood with their mouths gaping open.  It was hard at first - then I took opportunities to start talking with the kids on an individual basis.  Their responses started changing and soon it was, "the cool thing" to be AJ's friend. Come on, how many kids can eat through their mouth or switch to a tube so that they don't have to quit playing and yet still eat?  I think I convinced more than a few kids that a feeding tube was something to desire.  (I wonder how many kids went back to their parents and asked if they could have a tube too)? There was one little girl that showed such a heart of compassion.  She asked why AJ had all the bandages and why he had owies?  I explained to her that he gets hurt easily and the bandages cover his owies and protect his skin.  The next day, as soon as class started she ran right over to AJ.  She told him that she gets owies too and she showed him a new Band-Aid on her leg.  Then she promptly took her place, proudly sitting by him. I can't say he had as warm a response as I did - she was a girl and he didn't necessarily want to sit that close to her - or maybe the Band-Aid just didn't impress him :)

Thankfully it wasn't until after camp that AJ's GJ tube fell out - Completely fell out - AJ came and brought it to me.  The problem was that the hole that the tube fits through is getting loose and it fell out with the balloon still inflated.  His skin was not doing a great job keeping the tube in it's correct position. We keep his abdomen completely bandaged but it just wasn't working well.  His surgical team wondered if he would need a tube revision - I was open to the idea until I realized they meant - make a new hole and start over.  I thought they could just tighten up the old one.  Our great interventional radiology doctor took over and put in a new tube - it fits well and the problem seems fixed (for now).  They are so good when they do a tube change - no IV, no intubation, just a mask to put him to sleep and they are in and out quick.  They used laughing gas this time and AJ was really hysterical (funny) until he fell asleep.

The heat has been hard.  AJ's skin really seems weaker this summer.  I picked him up at camp and as my arm went around him (I had one hand under his bottom) I felt the skin on his back just slide and he screamed.  Thankfully the damage was less than I expected but we realized that we need better ways to transfer him when he needs the extra help.  We are going to make an appointment with physical therapy for some "transfer and lifting" classes.

I wish I had more pictures for this post but my kids borrowed the camera.  One of AJ's highlights this summer was a pontoon boat ride.  He just loved it.  He really wanted to see a dolphin and Nemo.  Neither of which will be found in a Minnesota lake but he had fun none the less.

We are so thankful for a great start to summer (Ok, it's more than half over but let's not go there)  God has blessed AJ with lots of happy experiences that far overshadow his times of pain.   I'll leave you with a Bible verse and a song that AJ and I have been singing.  You might remember the old song,

"Praise Him, Praise Him, All ye little children, 
 God is Love, God is Love!  
Praise Him, Praise Him, All ye little children, 
God is Love, God is Love."

Aj really enjoys this song and it gives us both the
opportunity to Praise Him!  If you don't recognize it,
you can hear it here:  Praise Him Song

Psalm 28:7  The Lord is my Strength and my Shield; my heart trusts in, relies on, and confidently leans on Him, and I am helped; therefore My heart greatly rejoices, and with my song will I praise Him.

Thanks for following us on this journey.



  1. I love the update and I love that the kids quickly warmed up to A.J. My husband and I are the ones adopting Anton and I would love to chat with you more about adoption and EB.


  2. Hi:) I was wondering if I could use a picture of your precious AJ for a video I am trying to put together for EB Awareness Week? Please let me know if this is not okay. Much love and respect to your family- esp sweet AJ! God Bless!