Wednesday, October 26, 2011

EB Awareness Week

This last week of October is officially EB awareness week. Many of our EB friends have posted so many moving posts in their blogs and on Facebook that it leaves me speechless
(enjoy it - it doesn't happen often).

We have so many EB friends, each has their own personal story and they are all important to us.  I really didn't want to pick one story in particular but decided to share Courtney and Tripp's story.

Tripp has a different form of EB than AJ and he has suffered so much in his short life.  Tripp's story can be found Here. Please take the time to check it out and learn more about Epidermolysis Bullosa. After reading their story, you will not only understand EB but you will be compelled to pray for he and his Mom.

Thanks for caring,


Sunday, October 16, 2011

Welcome Home Jackie

Today was a big day at our house.  Our newest family member joined our household.  AJ's new service dog "in training" arrived today.
 Her name is Jackie!

Our hope is that Jackie will eventually be trained to carry AJ's feeding pump so that he does not have to carry it all the time. Jackie is part Australian Shepard and Catahoula.  Both are breeds that are used for service and rescue animals.  We will be taking classes locally for her training.  She is seven months old and very friendly.

We arrived home tonight to AJ at the front door.  "Where is my doggy (pronounced goggy by him)?"  He was so excited - I think mostly to boss her around.  As soon as she got in the door, AJ says to her (in his most assertive voice), "Here is my pump, Carry It"  We laughed.  We told him a few weeks ago that we were looking for a dog to help carry his pump.  I think AJ will wear out Jackie before she does.  He walks around the house yelling, "wo, who".  Then we hear, "what's her name again?"

Thanks for following us on our journey.  Aj certainly is a happy guy, hopefully he and Jackie will become a great team.


Thursday, October 13, 2011

School begins!

AJ is back to school.  He started two days ago and seems to really enjoy it. He had gone last year for two half days a week and this year he will go for three half days. He is really tired and a bit out of sorts but I'm sure he will get used to the new schedule.

Here is a picture of AJ's first day of school. He was not happy that I was not going with him.  Once he saw his bus he was all smiles but this was the best I could do for a picture 

I wonder what he is thinking.  
He certainly is not pleased with Mom!

I'm looking forward to catching up on some projects around the house while he is at school.  I should have done something really constructive (like paying bills - ugh) but instead I organized all of his bandage supplies and then I decided to sew.  I really enjoy sewing and I had some really soft fleece left over from another project and there was enough fabric to make a vest for AJ.  It turned out really cute and when AJ got home I showed him the vest and he hated it. He cried when I put it on him and he cried for me to take it off. I told him he could wear it in the winter when the snow falls and he cried some more. He really doesn't like it.  So...I guess I'll hang it in the closet and see how he feels about it on a different day.

Isn't it cute?

On the medical front; AJ had a new G tube put in last week. He needed a smaller one because it was leaking so badly. They didn't have the correct size in stock so we tried a little larger one. It too is not going to work as it continues to leak. Maybe next week the new one will be in.

For those that have been praying for Brian.  He had a tracheotomy done last week and will hopefully be stable enough to return to Florida (they are in the hospital in Ohio) where his Mom and Dad live.  We are also praying for Nicholas's family. He had a bone marrow transplant done to improve his EB but he passed away this past weekend.  He lived with EB for ten years. He leaves behind a Mom and Dad and brother.

We have things to rejoice in and things to be sorrowful over. In all things we want to thank our heavenly father for his goodness towards us.

Psalm 86:5
For you, O Lord, are good and forgiving, 
abounding in steadfast love to all who call upon you.