Friday, December 28, 2012

Happy Thanksgiving, Happy Birthday, Merry Christmas and (almost) Happy New Year

Wow am I behind.  Here are some pictures to get you caught up.

At Thanksgiving we traveled to Colorado to visit
 Aaron and Emily. We had a great time.

We have been busy with birthdays; 
AJ turned 5
Kim turned 13 
Roman turned 15 
Julia turned 18 
Sahr turned 23 
and Joel turned 30

Have I forgotten anyone?

AJ celebrated his birthday and Icing Smiles 
generously made a Robot Cake for him.  
A special thanks to them.   

5 years old!  Wow!

Kim on her birthday.

Andy and Katie home from college

Christmas was filled with a lot of activities, 
crazy and quiet times with family.

Katie and AJ

Andy and Katie on the piano

Andy and AJ

Opening some gifts on Christmas Eve (the two girls look like something scary is going to jump out of the box!)


On Christmas Eve, AJ sprinkled 
magic reindeer dust on the snow 
so that Santa could find our house

I will share one little story; on Christmas morning AJ looked very sad.  It was time to open gifts and he didn't want to do it.  We asked him what was wrong.  He stated that Christmas was going to be over after he opened gifts and that Katie had told him that she would be going back to college after Christmas.  He didn't want her to leave so he figured that if he didn't open gifts, Katie would stay.  We had to explain to him that she was not leaving that day.  He could open his gifts and she would still spend the week with us.

Christmas morning

Andy shows AJ how to really get excited

Katie gives Andy "the look"



AJ has loved his time playing in the snow with Katie.  He was especially excited to find Spider Man boots that did not hurt his feet and that blinked lights with every step.  

Aj has been fairly healthy.  He had a few infections that needed treating with antibiotics but he has done well.  He has had some issues with his heart and we are doing some extra testing to see if or what the problem might be.  It seems to be something that comes and goes but Mayo has caught the problem twice now, so we will look a little harder to make sure he is doing Ok.  He had a lot of tests in early December and he shows some difficulty with absorbing all of his nutrition (common with EB) but otherwise he has had an excellent year. We counted four hospitalizations this year.  Not bad but hoping we can do better in 2013.

Thank you to all of those that checked in to see how we were doing.  We are so thankful for all that God has provided for us.  We have so many special people in our lives: family, friends, church family, medical and school community.   Thank you for being a part of AJ's journey.  We are especially thankful for the gift of Jesus and all that He means to us.  Without Him, this journey would only be filled with pain.


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