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