Photo Op

I have pictures of our Granddaughter, Mara Aminata

Isn't she beautiful!

Everyone wanted to hold her...

1st time Grandpa; He said it's been a long wait!

Thankfully she slept through it all.

  Even the arguments that broke out over...

 "You held her longer than I did!"

I like this picture of Sahr and Jena

Don't they look excited?

AJ's pretty young to be an uncle 

and we really wanted a picture 

of the little uncle with his little niece.

 As you can see, AJ was very hesitant.  

He had very little interest in Mara 

as there were a lot of toys to be played with.  

When Mara eventually needed a diaper change 

he watched out of the corner of his eye

 - then he spotted it -

 her umbilical cord.  

He was quick to go over and say she needed a bandage. 

 Leave it to the wound care specialist :)

Other news:  We head to the cornea specialist today to see how AJ's eyes are doing relative to his EB.  Thankfully it's been another year that he has been spared abrasions and blisters of the eye.  We are expecting a good report.  Still no news on when AJ's throat dilatation will be.  Remember Jackie? AJ's service dog in training is doing very well.  We are in actually classes right now and she is mastering everything very nicely.  I wish the weather was warmer to get outside to work with her more but it will come.  

We are very blessed.  Thank you for following us on our journey.

Barbara

Sanctity of Human Life

Lord, today is Sanctity of Human Life Sunday and we have so much to be thankful for.

Thank you Lord for creating AJ just as he is; please help others to recognize the beauty of your handiwork.

Thank you for surrounding his birth mother with your love and for helping her choose life when the man that was AJ’s father only cared about himself and used her; throwing her away as a piece of trash.  

Thank you for giving her the strength and wisdom to carry her pregnancy to term even when everyone around her loudly proclaimed that no woman should have to carry a child conceived by rape,  to term.

 

Thank you for bringing people into her life that prayed and provided for her during those very difficult times. 

Thank you for allowing AJ to be born in a hospital that was familiar with EB and was medically prepared to treat his unexpected physical condition.

Thank you for giving the medical staff the eyes to see a beautiful baby boy rather than an unnamed baby that was born disfigured and disabled. 

Thank you for blessing our lives with AJ.  Thank you for your protection when so many things could have gone wrong; AJ’s life could have so easily been ended.  

You Lord, have taken a human life, that many have little value for, and turned it into a joyful treasure.  

We treasure your creation and give you the glory for your wonderful work.  

Strictures

Thanks for all your prayers.  AJ did very well on his swallowing/esophageal study.  He drank the barium like a true champ.  The preliminary results are that he has strictures again and he will need a dilatation.  I think his esophagus has been narrowed for some time as he has had vomiting for a few months.  I suppose it is just getting smaller. I am not in a hurry because he still has a a cold and he needs to be healthy before he goes under anesthesia. He has been very hyper today as they flavored the barium with sugared Kool-aid and wow does he react to sugar!

As always we ended our appointment with a visit to the Mayo cafeteria where the lunch ladies always have jello on hand for AJ.  Today he picked out green jello but he didn't actually take any bites and brought it home.

This picture was taken at the Spam Museum (Yes, you read it right); a true Minnesota landmark.  We all tried Spam pizza but AJ stuck with licking the cheese off and then spitting it out. He is the only one of our kids that has been allowed to spit out food.  He gets the chance to taste it and then out it comes. I'm guessing lots of kids with EB do this.

I'll let you know when I hear a date for the procedure.  It has been a blessing that he has gone almost 12 months between dilatations as it can be a much shorter period of time.


Barbara

Welcome Mara Aminata!

This post should receive the best post of the year award.  Sahr and Jena had their baby tonight and I am a first time Grandma.  Mara Aminata, you are a blessing from God.  I'll post a picture of Sahr and Jena but sorry no pictures of Mara yet (though I am sure she is the most beautiful baby).

Psalm 127:3 (ESV)

Behold, children are a heritage from the Lord,

 the fruit of the womb a reward.  

I am blessed,
Barbara

Rest in Peace Tripp

Today Tripp moved to his heavenly home and is with Jesus.  Please continue to pray for Courtney and all of Tripp's family.

What a great promise we have in Christ.

I Thessalonians 4:13-18

But we do not want you to be uninformed, brothers,

 about those who are asleep, 

that you may not grieve as others do who have no hope.  

For since we believe that Jesus died and rose again, 

even so, through Jesus, 

God will bring with him those who have fallen asleep.

  For this we declare to you by a word from the Lord,

 that we who are alive, 

who are left until the coming of the Lord 

will not precede those who have fallen asleep. 

For the Lord himself will descend from heaven

 with a cry of command,

 with the voice of an archangel,

 and with the sound of the trumpet of God.

  And the dead in Christ will rise first.

  Then we who are alive, who are left,

 will be caught up together with them in the clouds

 to meet the Lord in the air,

 and so we will always be with the Lord.

  Therefore encourage one another with these words.

Thank you so much for praying,

Barbara

Wednesday testing

AJ goes in next Wednesday for a barium swallow test.  His vomiting has increased and we think it might be related to strictures in his esophagus.  His last dilatation was February 2011.  His GI doctor wanted to just go ahead and schedule the dilatation but I don't want to do something without knowing for sure that strictures are the problem.  I'm hoping he does ok swallowing the stuff (ick).    If he needs the dilatation the ENT dr will assist as she is the only one that can intubate him safely.  He has a really bad cold right now and I am hoping that his chronic cough does not blister his throat too much. He has missed a few days of school due to his cold.

This is what he spends his time doing

 (Thanks Grandma and Grandpa for the fun)

Please keep praying for Tripp and Courtney.  They have requested prayers for peace.

You keep him in perfect peace 

whose mind is stayed on you, 

because he trusts in you.  

Trust in the Lord forever 

for the Lord God is an everlasting rock.

Isaiah 26:3-4 (ESV)

Thanks,

Barbara

Please pray

Please pray for our EB friend Tripp and his Mom, Courtney. He doesn't have a lot of time left on this earth and he is ready to see Jesus.
You can read their story here:  "EB"ing a Mommy

Thanks,  Barbara

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