Saving the best news for last

It has been a great month.  Sorry it's taken so long to catch up with you but our vacation included a break from blogging (not that I am so great at keeping up).  I have lots of pictures to share but I'm saving the best news for last so make sure you read all the way down.

We spent ten days at Lake Geneva Christian Center family camp.  The kids had a blast and I've never seen AJ enjoy a trip more.  He loved the children's classes and made new friends.  It was great.  The speakers were great and AJ did so well that I was able to leave him in his classroom and actually attend some of the services.

The added bonus was that our son, Sahr, his girlfriend and sweet baby girl (aka..my granddaughter) live in the area and we were able to spend some time with them. 

Grandma and Mara

Our son, Sahr and his beautiful daughter; what a great Daddy!

Katie, Mara and AJ

AJ even thought she was Ok to play with

Katie and Mara; what a blessing

Julia had so much fun with her

She was so comfortable with Andy that she fell asleep 

(probably due to being passed around for everyone to hold but she did so great)

In an earlier post I had promised pictures of AJ in his cooling vest.  Wow the vest helped a lot.  It was really hot and did a great job of keeping AJ cool.  He had very few blisters as a result of the heat and he didn't look sick or exhausted from the time outdoors.  I would highly recommend the vest if you have a child that struggles with heat.  Thanks again to The Butterfly Fund for their gift of the vest to AJ.

We found that the vest worked best if he wore it backwards

 - it didn't rub on his skin or cause blisters.

Our good friends came to visit and stayed a few days with us

  Gabby was our night staff when AJ was a baby. I'm so glad we have been able to stay in contact with them. Unfortunately we didn't get a picture with her little boy - next time. 

AJ fell off of a wagon before we left for camp and tore up his head.There came a point at camp where he really needed to have his head bandaged. He was so embarrassed to have his head in a bandage - he is so used to having his body bandaged but was not happy about his head. Katie came up with the perfect answer - 

We had lots of fun at camp.  

It was sad to say goodbye until next year.

Don't forget I promised you good news at the end of this blog post - the best news yet (no, we are not adopting again for those of you that have a one track mind)

The good news is the gospel that AJ embraced while at camp.  Here is AJ's story, about God's grace in his life while at camp.  We were doing bandages one day and AJ was really afraid of the upcoming pain associated with having his leg wounds exposed.  He kept saying, "I am a scaredy cat!"  I told him that he could ask God to help him with his pain and that God wants to live in his heart and be in charge of his life - he wouldn't be a scaredy cat, alone, anymore - God's power would live in him like a Super Hero and give him strength for everyday and every bandage change.  AJ wanted to know if God was a ghost that would live in him (thank you Scooby Doo).  We talked about God being real and that his spirit could live in him.  We talked about sin, the things we have done wrong, and that the death of Jesus on the cross took away our punishment.  AJ and I prayed together so that he could have forgiveness of sin and be adopted into God's family.  Now when AJ is afraid, I remind him that even if he feels like a scaredy cat; God lives in him and is bigger than any problem or pain that he has.  What a great event and a new beginning for AJ and his personal walk with Jesus.

Thanks for being so patient with my blog posts.  Blessings to each of you today and I pray you too may know the good news of Jesus Christ.  If you have not heard that you can live a new life in Jesus Christ, please ask and I would love to share with you what the Bible teaches about God's love, his death on the cross and what that means for you.  

Barbara and AJ

I'm off and running!

Thank you for all of your prayers and offers of help.  I am home and feeling really good. The cardiologist said I had a 90% blockage in my left anterior descending artery.  I now have a stent and should feel like I have a lot of energy.  I'm so thankful for a good doctor that followed her instinct and thankful for a mighty God that made a way for me when I really had no idea that there was a problem.

AJ continues to do well.  There are no signs of infection and his wound site continues to fill in.  Please keep praying that it heals up completely.

Psalm 100:3-5

Know that the Lord, he is God!

It is he who made us, and we are his;

we are his people, and the sheep of his pasture.

Enter his gates with thanksgiving,

and his courts with praise!

Give thanks to him; bless his name!

For the Lord is good;

his steadfast love endures forever,

and his faithfulness to all generations.

Barbara

Happy Father's Day Scott

My camera crashed on me so I lost the other pictures but  

we enjoyed worshiping together at church 

and then had a picnic in the rain (under a nice shelter)

We have set this day aside to honor you, Scott.  

You can rejoice in the godliness of your children

Proverbs 23:24

The father of a godly child is very happy.  

Anyone who has a wise child is glad.

Worthy of mention

I don't usually post about my own health issues on my blog but today I will make an exception.  For much of the past six months I have been very tired and often sick to my stomach. When I exerted myself I would experience nausea and have pain in my lower left shoulder blade.  I have fibromyalgia and that seemed to be the easy reason.  My doctor works very hard at covering every possible angle and last week she mentioned that women often experience heart problems in a very different manner then men.  She asked if I would be willing to under go testing.  I agreed and that led to a failed stress test.  That in turn led to a CT angiography that showed a 80% blockage of a main artery in my heart.  The cardiologist was very surprised as he said he had never seen a heart problem present this way.  Long story short; on Monday I am scheduled for a coronary artery angioplasty.  It is expected that I will have a stent placed and go home on Tuesday.

Life is always an adventure isn't it!  I'm so glad we never have to go it alone.  God is always with us and he holds the future in his hands.  I appreciate your prayers for a successful procedure on Monday and that AJ's abdomen will continue to heal and stay free of infection.  What I really don't want is both of us hospitalized at the same time.

God is good; All the time.

Barbara

One week and no infection

Today marks one week from AJ's surgery.  So far no infection and I am so thankful.  The doctor said that for a healthy child the open wound would take a week to heal up.  We are not sure what that means for AJ.  Today his wound does not visually look as deep but it still needs to be packed.  I also don't know what it will look like when the wound is filled because I am not sure how the skin will grow over it.  It's a wait and see.  We have plans to attend Bible camp in a few more weeks and I am hoping that AJ's wound will be closed. It will allow him to swim in a little pool and stay cool while we are outside.

We had some really good news.  AJ will be getting a cooling vest.  You can look at the vest here:  Cooling Vest.  It will allow AJ to be outside more in the summer time heat.  When the temperature is over 76 degrees, he blisters, his skin acts like wet tissue paper and he is pretty uncomfortable.  The cooling vest hold a temperature of 59 degrees for about 2 1/2 hours.  We will have an extra set of cooling packs so that it will last even longer.  AJ's dermotologist prescribed the cooling vest but his insurance rejected the request and denied our appeal.  Thankfully we were able to order the vest through the Butterfly Fund.  They are a non- profit organization that is set up to assist children and families that live with EB.  What a great organization and we are so blessed to be helped by them.  If anyone is looking for a way to assist those with EB, this would be a great place to start. Just click on the link above.  As soon as AJ's receives the vest, we will take some pictures and show it to you.

We have really appreciated your prayers and we rejoice in God's goodness to AJ.  We are praying that his wound will continue to heal without any problems.

Psalm 17:6-8

I call upon you, for you will answer me, O God;

incline your ear to me; hear my words.

Wondrously show your steadfast love,

O Savior of those who seek refuge 

from their adversaries at your right hand.

Keep me as the apple of your eye;

hide me in the shadow of your wings.

Our hope is not in AJ's health, a cure for EB, or in the satisfaction that is sought for in this life.  Rather we can say;

Psalm 17:14-15

O Lord, from men of the world whose portion is in this life.  

You fill their womb with treasure;

they are satisfied with children, 

and they leave their abundance to their infants.  

As for me, I shall behold your face in righteousness;

 when I awake, I shall be satisfied with your likeness.  

Our hope is in God and we daily find our satisfaction in Him.

Barbara

Days of Recovery

AJ is in the slow process of recovery.  He is pretty uncomfortable and watching lots of movies to pass the time. His new g-tube is right near his waist so bending at the waist is pretty uncomfortable for him. He looks like a little hunchback, bent over as he walks.  He doesn't get up much unless he needs to use the bathroom.  This afternoon he fell asleep but was tossing around in pain.  Suddenly he called out in his sleep, "I need Jackie".  Jackie is his service dog in training.  We took note that he didn't cry for Mom or Dad but Jackie; that's ok though.  It's one of the reasons why we got Jackie; she provides a lot of pain relief for him.  AJ has a pretty large hole in his abdomen from the last tube.  We have to take out the old packing gauze and replace it twice a day. AJ has done really well with it but it does turn my stomach a bit.  I can handle difficult wounds but this is a pretty deep crater.

Before AJ's surgery, Aaron and his wife Emily spent a week with us.  We all really enjoyed it.  AJ must have asked Emily, hundreds of times, to play with him.  She was a good sport.

Here are some new pictures but taken before his surgery. The pictures make me realize how much I'm looking forward to seeing AJ up and around again.

AJ and his cousin

AJ and Emily playing doctor

Dr AJ getting ready for surgery

Aaron and Emily with AJ and the girls

AJ Cooking with his dog, Jackie

AJ loves technology.  Here he is watching Aaron play a game.

Katie and AJ heading home after swimming.

Thanks again for your prayers.  We are praying that AJ's pain lessens and that his old and new tube site heal up completely.

Barbara and AJ

Home

We are home.  AJ really improved once we arrived home.  At the hospital he cried if we even tried to even sit him up.  Here at home he is moving much better.

It's late, I'm tired so I will update later but I wanted you to know that we are home.

Barbara and AJ