Happy New Year!

Let me introduce (future) Dr AJ Fischer, 

specializing in the treatment that cures EB

(wouldn't that be cool?)

What a great year God has given us with AJ.  We look forward to see what he has planned for us this year.

One event we are hoping to attend is the DEBRA Patient Care Conference.  We are in the middle of winter, but we need to start planning for the conference scheduled for July.  The DEBRA conference is the largest EB conference in the United States.  The conference is held every two years and this year Orlando, Florida has been chosen as the site.   This will be our 3^rd conference and as much as we are dreading the heat of Florida (AJ’s skin does poorly in heat) we are very excited to attend.

DEBRA (Dystrophic Epidermolysis Bullosa Research Association) is the nonprofit organization that supports families and works to raise funds for research towards a cure for EB.  By attending the conference we will hear the latest research and medical advances from the top EB doctors in the world.  We will increase our knowledge about wound care and the medical interventions that our children with EB need to survive.  We will also network with other EB families. 

This is a picture with our friend Sara at the last EB conference in Ohio

The conference is the only time that AJ has the opportunity to play and connect with other children with his disorder.  Just this past weekend we took AJ to the local indoor play area at the mall.  We were there less than five minutes when he came over and asked to leave.  He looked sick but it wasn't a physical sickness that was the problem.  From the time he arrived every child and adult had turned to stare at him.  It was really sad to watch.  Children nearby were debating what accident must have caused him to look so terrible.  Sadly, we left.  This is AJ’s life; he will always look different and people will stare or turn away not wanting to look at his wounds, scars and bandages.  At the EB conference it is different.  Everywhere around us are children and young adults wrapped in bandages and marked with the scars of EB.  It’s like entering a new world.  Suddenly a sense of normalcy and acceptance are the reality.  I can’t describe the enjoyment of “fitting in” for AJ and for our family.

Our other "non EB" children also benefit from the friendships they make with other children with EB.

The barrier to our attendance is the cost.  Two years ago we drove to the conference in Ohio and we felt the total expense was reasonable.  Florida is more than twice the distance and we have determined that airfare is just too costly (unless of course a great deal comes along).  Our daughter Katie has agreed to attend the conference and help with AJ’s cares while away.  She also loves to drive cross country and has generously offered to help us make the trip.  

She took us safely to the Ohio conference

She even let us stop for ice cream.  This time we will have many more stops.  

It will be a long trip but it is so important for us to attend.  We are anticipating our total expenses to be $2350.  If we have enough funds we will consider the added cost of a rental vehicle instead of using our own.

I hate fundraising letters and wouldn’t ask for help unless it was incredibly important.  If you are able to help us with even a small amount towards our trip it would be so appreciated.  I can promise you that it will be an investment into AJ’s life. 

Please send donations to: 

Barbara Fischer

902 Beachwood Court NE

Stewartville, MN  55976 

Or

You may use the PayPal button located 
on the right sidebar of the blog.

 Sorry we are not a tax deductable entity but we will happily send you pictures and an update after our trip.  

To the other EB families that read my blog; please disregard this post.  I hope to see you at the conference and  I am not requesting financial support from you.  You guys already provide support in so many other ways.

I'll close with a photo of AJ and his snowman.  It may be his only snowman this year as we are snowless here in MN! Strange.

Thanks again for hearing my request.  I know God hears our requests and this post is simply my way of letting others know of our need.

Philippians 4:5-7 (English Standard Version)

Let your reasonableness be known to everyone.  

The Lord is at hand; do not be anxious about anything, 

but in everything by prayer and supplication with thanksgiving 

let your requests be made known to God.  

And the peace of God, which surpasses all understanding, 

will guard your hearts and your minds in Christ Jesus.

Blessings,

Barbara and AJ  

Merry Christmas

Merry Christmas Everyone,

Aj and our family are doing well and are very blessed.  AJ's pain is significantly reduced from this past fall and we are very grateful to our Heavenly Father for the healing AJ has experienced in his skin.

This past month we celebrated AJ's 4th Birthday. 

He really enjoyed his racing "Cars"

We were able to travel and visit AJ's oldest brother JNF

AJ helped us search for the perfect Christmas tree.  This was the "Charlie Brown" tree that he found.

KJF enjoyed hiking through the woods with AJ's dog, "Jackie"

For our 1st snowfall AJ and Dad built "Frosty"  

Too bad the weather warmed up and AJ woke up one morning to Frosty's puddle.

We recognize the good days in AJ's life but also remember the pain that other EB families are experiencing.  EJ passed away just a few weeks ago.  He was really suffering after a failed bone marrow transplant.  Please pray for his family. Please pray also for Brian and his family. They hope to be discharged home from the hospital in the next few weeks. They have been there a long time as Brian is in a persistent vegetative state after suffering heart failure during a routine EB medical intervention.They now deal with EB and all the other additional needs that his condition requires.  

May you have a blessed Christmas remembering God's sacrifice when he sent his son Jesus as a baby, to ultimately die for our sin.

Merry Christmas, 

Barbara

Infection returns

Just a quick note to let you know that AJ's infection is back. His G tube hole is closing up to normal size; for which we are thankful.  We caught the infection really early and he will go back on his oral antibiotic today.  Hopefully that we keep him out of the hospital.  He has also started some narcotic pain meds.  I really have held back on starting narcotics but this infection has caused such pain for him.  I hope it is only for a short time.  He is also experiencing  very painful muscle spasms in his abdomen around the g-tube site.  He can take Valium to help settle that down.  Thanks for your prayers.  AJ seems to manage a happy attitude through all of this.

Barbara

Scripture to Encourage You!

AJ is doing well.  His abdomen is healing up and we are scheduled to visit the doctor on Thursday.  We are so overwhelmed with God's goodness to us. Thank you again for your prayers; they are not just wishful thinking but rather requests that are taken to the very throne of God.

Please take the time to read the following scriptures. God is speaking to us today.  Are you listening?   

Be encouraged.

Barbara

My Child,

You may not know me,
but I know everything about you. 
Psalm 139:1

I know when you sit down and when you rise up. 
Psalm 139:2

I am familiar with all your ways. 
Psalm 139:3

Even the very hairs on your head are numbered. 
Matthew 10:29-31

For you were made in my image. 
Genesis 1:27

In me you live and move and have your being.
Acts 17:28

For you are my offspring. 
Acts 17:28

I knew you even before you were conceived. 
Jeremiah 1:4-5

I chose you when I planned creation. 
Ephesians 1:11-12

You were not a mistake,
for all your days are written in my book. 
Psalm 139:15-16

I determined the exact time of your birth
and where you would live. 
Acts 17:26

You are fearfully and wonderfully made. 
Psalm 139:14

I knit you together in your mother's womb. 
Psalm 139:13

And brought you forth on the day you were born. 
Psalm 71:6

I have been misrepresented
by those who don't know me.
John 8:41-44

I am not distant and angry,
but am the complete expression of love. 
1 John 4:16

And it is my desire to lavish my love on you. 
1 John 3:1

Simply because you are my child
and I am your Father. 
1 John 3:1

I offer you more than your earthly father ever could. 
Matthew 7:11

For I am the perfect father. 
Matthew 5:48

Every good gift that you receive comes from my hand. 
James 1:17

For I am your provider and I meet all your needs. 
Matthew 6:31-33

My plan for your future has always been filled with hope. 
Jeremiah 29:11

Because I love you with an everlasting love. 
Jeremiah 31:3

My thoughts toward you are countless
as the sand on the seashore.
Psalms 139:17-18

And I rejoice over you with singing. 
Zephaniah 3:17

I will never stop doing good to you. 
Jeremiah 32:40

For you are my treasured possession. 
Exodus 19:5

I desire to establish you
with all my heart and all my soul. 
Jeremiah 32:41

And I want to show you great and marvelous things. 
Jeremiah 33:3

If you seek me with all your heart,
you will find me. 
Deuteronomy 4:29

Delight in me and I will give you
the desires of your heart. 
Psalm 37:4

For it is I who gave you those desires. 
Philippians 2:13

I am able to do more for you
than you could possibly imagine. 
Ephesians 3:20

For I am your greatest encourager. 
2 Thessalonians 2:16-17

I am also the Father who comforts you
in all your troubles. 
2 Corinthians 1:3-4

When you are brokenhearted,
I am close to you. 
Psalm 34:18

As a shepherd carries a lamb,
I have carried you close to my heart. 
Isaiah 40:11

One day I will wipe away
every tear from your eyes. 
Revelation 21:3-4

And I'll take away all the pain
you have suffered on this earth.
Revelation 21:3-4

I am your Father, and I love you
even as I love my son, Jesus.
John 17:23

For in Jesus, my love for you is revealed. 
John 17:26

He is the exact representation of my being. 
Hebrews 1:3

He came to demonstrate that I am for you,
not against you. 
Romans 8:31

And to tell you that I am not counting your sins.
2 Corinthians 5:18-19

Jesus died so that you and I could be reconciled. 
2 Corinthians 5:18-19

His death was the ultimate expression
of my love for you. 
1 John 4:10

I gave up everything I loved
that I might gain your love. 
Romans 8:31-32

If you receive the gift of my son Jesus,
you receive me. 
1 John 2:23

And nothing will ever separate you
from my love again.
Romans 8:38-39

Come home and I'll throw the biggest party
heaven has ever seen.
Luke 15:7

I have always been Father,
and will always be Father.
Ephesians 3:14-15

My question is…
Will you be my child? 
John 1:12-13

I am waiting for you. 
Luke 15:11-32

Love, Your Dad, Almighty God

Father's Love Letter used by permission Father Heart Communications  © 1999-2011 www.FathersLoveLetter.com

Discharge Day

I am happy and AJ is really happy!  We are going home today.  We removed his G-tube last night and left it out for four hours in the hope that it would close up a bit.  It did close some but we are still left with one open area that should not be there.  We have a few more ideas in mind and we will be back to the clinic on Friday to see how it is progressing or should I say digressing?

AJ started an oral antibiotic this morning and so far he has not had any negative side effects.  We hope it will continue to fight the infection.  The IV medication is not available in an oral so we had to switch to a new one.  We are so thankful for the medical advances that God has blessed us with.  Just a few years ago AJ would not have survived the same infection.  God is so good to us.  AJ has continued to feel great through this entire infection.

Last night God allowed me to meet with an old friend.  She needed some encouragement and it was so great to spend time with her.  Please pray for K as God is moving in her life and she is looking for Him.

2 Corinthians 2:14

Thanks be to God, who in Christ always leads us 

in triumphal procession, and through us spreads 

the fragrance of the knowledge of him everywhere.

What a blessing it has been to share the goodness of our God while here in the hospital.  He opened multiple doors to testify of his goodness.

Thanks again for all your prayers along this journey.  We are looking forward to "resting" at home.

Love,

Barbara

 

Staying longer

AJ is responding well to the antibiotics.  So well that we are going to stay another day to keep them running through his IV. The struggle now is what to do about his G-tube site.  It should be one, nice, small hole that the G-tube slides into. Unfortunately, It is more like two holes next to each other. This isn't going to work as his feeds will run out the hole and he will not be able to bathe as the bath water (that is mixed with vinegar, bleach and salt) will run into his stomach.  They are trying to come up with a plan.  AJ is hyper, bored and begging to go home.  I am tired with only 4 1/2 hours sleep last night.  I expect to go home tomorrow if the infection is the only issue - the problem with the site still needs to be addressed.

I made AJ go out for a walk today.  For some reason he was determined not to leave the room.  I took him to the chapel here.  It is beautiful.  I enjoyed the walk and the chance to pray in a beautiful setting.  Now I'm hoping he will nap.

KM is really sad as she is at home with the dog.  She hates to be alone but she is home educated and it helps that she can care for the dog.  I keep telling her it will be over soon.  She struggles the most with me gone.  KJ says they can only make it a short time with me gone.  I laugh - they really get stressed out but Scott still does a good job of taking care of them.  JR has a job now so that will help occupy her extra time.

I'll update again when I know more.  Thanks for your prayers and your messages.

Love,

Barbara and AJ

In The Hospital

We are back at St Mary's Hospital.  AJ is feeling great but the area around his G tube site is swollen, red and very hot - clearly an infection.  He had the same type of infection in 2008 and it was a bit hard to get rid of.  My hope is that we will go home tomorrow.  He is on IV antibiotics and so far the swelling is worse.  AJ feels great.  We are stuck in isolation due to the MRSA infection.  Entertaining a three year old in a hospital bed attached to a short IV line is tough. (Caroline and Raul, I thought of you)

While we were waiting to get admitted, I asked AJ if there was anything I could get him.  I was reading books to him and I thought maybe he wanted another.  Instead he said, I want "gog".  This usually means "dog" and I told him that Jackie can not come to the hospital.  He said no, I want "gog".  So I said, you want God?  He said, Yes, I want God to come and make my tummy better.  It was so sweet.  It must bless God. So we prayed together that God help his tummy heal.

At this point AJ has the hang of the hospital bed.  Head up and down, foot up and down.  It reminds me of those comedies where someone gets closed up in the bed. The nurse promised me the bed will not go that far (she also showed me where the over-ride switch is but that would take away all of his fun).

Tomorrow they might do a CT scan to try to find where the source of the infection is.  Last time it was a fissure that went from his stomach, through the skin, and out.  Eventually everything that went into his stomach leaked out the hole.  Hopefully it will heal before it reaches the point of rupturing.  (sorry if that is a bit gross)

I'll try to update again tomorrow.  Thanks for all of your prayers.  God is good and we are so thankful that AJ is feeling so great.

Love,

Barbara and AJ