Through The Eyes of Jesus

Because He Lives

2012-03-02T10:44:00.000-08:00

Today would be Rachel's 27th birthday. She was our firstborn daughter.

I can celebrate today because my Savior Lives!

Barbara

Happy Birthday Jackie!

2012-03-01T20:32:00.000-08:00

Tonight we celebrated Jackie's birthday. Jackie is AJ's service dog in training. She is one year old and next week will graduate from her first formal obedience class. She and AJ have a lot of fun together (sometimes too much) and we wanted to share our celebration with you. AJ was still not feeling the best but he enjoyed eating a little bit of cake. Jackie had doggy peanut butter ice cream treats. She wasn't too sure what to think of the cake and candle (she actually hid under the couch for a while) but AJ had fun blowing the candle out.

Happy Birthday Jackie!

Barbara and AJ

Successful Dilatation

2012-03-01T12:04:00.000-08:00

AJ is home after a successful dilatation of his esophagus. I have not heard the specifics yet but was told the news was only good.

More good news came from his airway exam. His airway is considered to be almost a size 6 which is the same as an adult airway. This is very good news considering there was a day when his airway was the size of a coffee stir stick. His vocal cords showed some thickening which she thought is due to coughing and EB. This would be the reason for his hoarse voice. She is not concerned about it and we were told that we could go much longer between appointments. Here is the picture of his airway:

They took very good care of AJ and he appears to have come home no worse for the wear. He is sick with nausea and vomiting but it will get better as the day goes on. We are very thankful for the great medical care and for God's hand in caring for AJ.

Barbara and AJ

A time for grieving

2012-02-23T20:38:00.000-08:00

Tonight is a night for grieving. Please read Trisha's blog post. She flew to Washington this past month to adopt a sweet boy named Seth that had EB. We were all so excited but it did not end as we had expected.

Here is the story: Seth's Story

I pray the word of God will comfort every heart:

Revalation 21:3-5

And I heard a loud voice from the throne saying, "Behold, the dwelling place of God is with man. He will dwell with them, and they will be his people, and God himself will be with them as their God. He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.

Barbara

Good News

2012-02-22T12:40:00.000-08:00

I received a message this morning that AJ would be scheduled for his esophageal dilatation in mid April. I thought they must be crazy, he can't wait until April as his throat will completely close. I called the clinic back and as soon as the secretary answered she said, "I have a new date for you; It will be March 1st". I told her that I was glad they found a new date as I was wondering if we were going to have to travel to Cincinnati for the procedure. I am thankful that plans are moving forward and that I don't have to look at alternative arrangements.

AJ is enjoying the warmer weather. He loves to go for walks. We have a large stroller for him so that he can relax and go along for the ride rather than always driving his wheelchair. He usually falls asleep before we get back home. I am excited about spring even though I realize we might get a real Minnesota blizzard yet. We are looking at fencing our back yard this spring so that I don't have to be concerned about AJ or his dog, Jackie, running up to the road behind our home (it's pretty busy for being out on the edge of town). Any one put up a chain link fence before? I'm open to ideas and help.

Here is our back yard. The picture is taken from the road.

You can't really see it in the picture but one side has a fence so we need to finish the back and opposite side. My first step is to find out exactly where the property line is, then draw the plan up and purchase a permit.

I so can't wait for summer!

Barbara and AJ

EB Awareness Video

2012-02-21T22:29:00.000-08:00

Check out this video that was made by an amazing EB awareness supporter, Christie. AJ is one of the children in the video (first three pictures). We know many of the children in the video personally. Sadly some of them have already left their families here on earth. Please feel free to share the video with your family and friends.

Barbara and AJ

Thank You for Your Help!

2012-02-20T16:27:00.000-08:00

Hello Everyone,
I wanted to send you an update on our fundraising project that will send us to the EB conference. Our goal is $2620 and your donations have brought in $1,940. Thank you so much. We have made our reservations and are excited about the opportunity to attend. If anyone has questions about our trip, please feel free to ask; we are still accepting donations. They can be sent through PayPal or mailed to our home address.

AJ continues to do well considering his inability to eat. He continues to express his desire to get this "fixed". I called the doctor today and told her that I will be bugging her about getting his esophageal dilatation scheduled. This has been much too long of a wait.

We do have an appointment this week with the dermatologist. It is his major six month appointment where he will be seen without any bandages and they will photograph all of his wounds. He doesn't mind because no one really touches his skin. We give him a bath in the early morning and then he puts on clothing that looks like a newborns gown. His legs and feet zip into it so that he does not tear his skin. It is very soft and looks like a big bag that is zipped up the front. At the end of the appointment we bandage him right back up in the office.

Later in the day AJ will have a bone density scan. Kids with EB can have poor bone density and we hope to use the results of this scan to give us a baseline with which we can observe any future changes should he need treatment.

Thank you again for all of your prayer and financial support.

Barbara and AJ

Happy Valentines Day!

2012-02-14T18:31:00.000-08:00

AJ has had a good Valentines Day. He carefully wrote his name on his Valentines for his friends at school. He was so excited about his Scooby Doo Valentines. EB certainly has an impact on Valentines Day. It's not necessarily bad but it's different from my other children's experience. For AJ, it's not the candy that is the big deal on Valentines Day; It's the cool super hero on the Valentine.

AJ is really struggling with his throat (esophagus closing). He tells me many times a day that he is sick and he points to his throat. He is not eating much at all by mouth. Usually he will at least nibble on something; now he doesn't even try. (Thank God for G tubes) I can hear him "slurping" his saliva. I called the doctor and again they said they are working to get it set up. I told them it needs to be soon. So we are waiting for that call.

This past weekend we celebrated my parents

60th wedding anniversary.

Happy Anniversary Dad and Mom!

Hope you have enjoyed your Valentines Day.

We love because He first loved us.

I John 4:19 (English Standard Version)

Barbara

Four Years Ago Tonight

2012-02-04T20:31:00.000-08:00

Four Years ago tonight we brought our little AJ home. I remember leaving Minnesota in the middle of winter and heading down to Texas. My first stop was the Neonatal Intensive Care Unit. I will never forget walking in and seeing my little guy, for the first time, rocking in his swing. He was so precious. It was so odd to see the other families all huddled around their little babies and there sat AJ, swinging silently, alone in the silence. We learned that the families in the NICU had come together to purchase a musical mobile to place above AJ's crib. They recognized that he had no visitors and he did not even have a name; they called him, "Baby Boy". I am thankful for those that watched over AJ for the six weeks before we arrived. They showed him the love of God through their actions.

The lights in the NICU were always kept low in the unit so there was no sense of time (day or night). Time seemed to hold still while I was there. AJ's little eyes were so huge as they looked at me for the first time.

His body was wrapped in gauze and a feeding tube was taped to his face. He was covered in vaseline - even his face. He looked very content and I hated to disturb him but I couldn't wait to pick him up and hold him. I could hardly believe how blessed we were; He was ours.

I spent three days in the NICU taking a crash course on how to care for all of his special needs. I had the privilege of meeting his birth mother while I was there. Together we visited and rocked the little man. Together we chose his name; Alexander James Fischer. On Superbowl Sunday AJ and I flew home to Minnesota. Everyone was so excited to meet him.

It was then that our adventure with AJ and EB really began. Not only have we been blessed with AJ but we have been blessed to meet so many friends in the EB community. We have many things to be thankful for. Thank you Lord for blessing our family with AJ! We would all agree that our lives have been changed for the better.

Psalm 9:1-2 (English Standard Version)

I will give thanks to the Lord with my whole heart;

I will recount all of your wonderful deeds.

I will be glad and exult in you;

I will sing praise to your name, O Most High.

I hope you enjoyed the pictures. Thanks for following us on our journey.

Happy Gotcha Day AJ!

Barbara

Photo Op

2012-01-24T10:15:00.000-08:00

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

2012-01-22T19:13:00.000-08:00

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

2012-01-18T12:56:00.000-08:00

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!

2012-01-16T19:32:00.000-08:00

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

2012-01-14T15:40:00.000-08:00

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

2012-01-13T14:38:00.000-08:00

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

2012-01-12T14:59:00.000-08:00

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!

2012-01-05T18:00:00.000-08:00

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

2011-12-24T21:27:00.000-08:00

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

2011-11-19T11:12:00.000-08:00

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!

2011-11-15T22:18:00.000-08:00

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

2011-11-08T11:42:00.000-08:00

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

2011-11-07T11:13:00.000-08:00

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

2011-11-06T17:39:00.000-08:00

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

EB Awareness Week

2011-10-26T18:44:00.000-07:00

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,

Barbara

Welcome Home Jackie

2011-10-16T18:53:00.000-07:00

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.

Barbara

School begins!

2011-10-13T13:56:00.000-07:00

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.

Barbara

Summer is over; I can start blogging again!

2011-09-29T15:28:00.000-07:00

Hello Everyone,

I've had lots of emails and messages wondering if we are Ok. Yes, we are doing really well; we are adjusting to our new routine and I hope to find the time to blog again. Summer and blogging just don't seem compatible for me.

AJ had a really great summer. We were able to camp a lot and we all really enjoyed it. It was also great to have KJF and AWF home. Now they are off to college and we miss them but we are happy they are pursuing the gifts that God has given them.

Here are a few of our pictures from the summer:

Playing with friends

Visiting the fair

Eating corn on the cob (actually it should be called, "licking")

1st time riding a pony

Lots of time with family

1st time planking (If you don't know what it is, take a

look at AWF planking at the light house in Grand Marias)

Then watch KJF teach AJ (at a lower height)

Success!

Throwing rocks into the lake was a favorite of the summer.

Ready to go to school.

This picture is actually a bit sad as AJ was really ready to go to school and most of his siblings returned to school in September. Problem is that AJ's school is not ready to accept the medical advice of his dermatologist; in that he is safe to attend school and that he does not have a contagious disease. So we wait. It's been over three weeks and he is still waiting but they have requested another meeting so I consider that a good sign. We are being patient. We expect to work with this school district for a long time so it is not going to hurt to wait a bit longer. Now to help AJ understand the wait.

The great news about AJ's bath lift chair!

My back wasn't doing so great this past summer and it was so hard to lift AJ into and out of the bathtub. He was not willing to help in anyway - not even stand up. I think he was too afraid of getting hurt. Our physical therapist found Aj a motarized lift chair that lowers him into the bath water and then lifts him back out when he was done. We didn't even have to struggle through the insurance process as it was donated. What a blessing. God is good!

Medically it was a pretty good summer for AJ. He was really healthy and only once went on antibiotics and that was to make sure he did not get strep when his siblings had it. The year before strep really attacked his skin and he still has damage from it. We didn't want that to happen.

The end of the summer brought one medical problem that ended up being a blessing in disguise. We were on our way home from a camping trip and AJ's GJ tube was accidentally

pulled out. That is not good because it takes a trip to the hospital and AJ going under anesthesia to replace it. We decided to try a standard G tube to see if his stomach could handle the feeds. In the past, every time something went into his stomach he vomited it all up. That's why he was fed directly to his intestines. Well, three and a half weeks later and he is still being fed via his stomach. This is great. It's one less procedure for him and one less complication from the EB.

Thank you for following our journey. We are thankful for everyday we have with AJ. We know it is a gift from God. AJ has a little friend, Brian that is not doing so well and he could use your prayers.

Brian is the same age as AJ and has the same type of EB as AJ. His Mom is a real sweetheart and she could use your prayers too. Brian went into surgery a few weeks ago to have his esophagus dilated and some teeth pulled. Unknown to the doctors, his hemoglobin was as low as 3. (Kids with EB often have problems with iron absorption). Once Brian was put under anesthesia, he went into cardiac arrest as his iron was too low for his heart to keep pumping. The doctors did CPR for 30 minutes before they got his heart working. Brian suffered serious brain damage and is in a coma. He is slowly improving and will have a tracheotomy (a permanent breathing tube) soon. Please pray for his Mom, Carmen and Brian too.

But this I call to mind, and therefore I have hope;

The steadfast love of the Lord never ceases,

his mercies never come to an end;

they are new every morning; great is your faithfulness.

Lamentations 3:21-23 (English Standard Version)

Blessings,

Barbara

Missing but still in Action

2011-07-24T18:03:00.000-07:00

We've moved; we've gone to family camp and we have continued to deal with AJ's medical issues. Just too much to do and blog at the same time.

We are in our new home in Stewartville. What a blessing to own our home again (well actually two homes but that's not the long term plan). We started out right away with remodeling and adding a bedroom so that it will meet everyone's needs. AJ and AW share a room temporarily until AW's room is finished. You have to visualize it (sorry no pictures of the room). It really is a disaster. An 18 year old with his three year old brother having lots of fun sharing a room (I do think they both enjoy it - sort of - AJ is loving it and AW likes it) Go figure; In a matter of days, AJ was sleeping in to almost noon - just like his teenage brother - of course going to bed with an IPOD, watching a movie would have an impact - that got nixed and he is now getting up in the mornings but not as happy at night :(

AJ's new roomate

AJ with his bigger and better headphones!

We are really hoping his does not pick up his brother's

need for high tech electronics :)

We spent ten days at our church family camp. The kids just love it. It is our annual trip. AJ is now old enough to take part in the preschool classes. It was interesting to watch the reactions of the kids around him. Because we did not have the opportunity to explain to the 30+ some kids about his bandages, there were a lot of "frozen looks" - described as kids that walked up to AJ and just stood with their mouths gaping open. It was hard at first - then I took opportunities to start talking with the kids on an individual basis. Their responses started changing and soon it was, "the cool thing" to be AJ's friend. Come on, how many kids can eat through their mouth or switch to a tube so that they don't have to quit playing and yet still eat? I think I convinced more than a few kids that a feeding tube was something to desire. (I wonder how many kids went back to their parents and asked if they could have a tube too)? There was one little girl that showed such a heart of compassion. She asked why AJ had all the bandages and why he had owies? I explained to her that he gets hurt easily and the bandages cover his owies and protect his skin. The next day, as soon as class started she ran right over to AJ. She told him that she gets owies too and she showed him a new Band-Aid on her leg. Then she promptly took her place, proudly sitting by him. I can't say he had as warm a response as I did - she was a girl and he didn't necessarily want to sit that close to her - or maybe the Band-Aid just didn't impress him :)

Thankfully it wasn't until after camp that AJ's GJ tube fell out - Completely fell out - AJ came and brought it to me. The problem was that the hole that the tube fits through is getting loose and it fell out with the balloon still inflated. His skin was not doing a great job keeping the tube in it's correct position. We keep his abdomen completely bandaged but it just wasn't working well. His surgical team wondered if he would need a tube revision - I was open to the idea until I realized they meant - make a new hole and start over. I thought they could just tighten up the old one. Our great interventional radiology doctor took over and put in a new tube - it fits well and the problem seems fixed (for now). They are so good when they do a tube change - no IV, no intubation, just a mask to put him to sleep and they are in and out quick. They used laughing gas this time and AJ was really hysterical (funny) until he fell asleep.

The heat has been hard. AJ's skin really seems weaker this summer. I picked him up at camp and as my arm went around him (I had one hand under his bottom) I felt the skin on his back just slide and he screamed. Thankfully the damage was less than I expected but we realized that we need better ways to transfer him when he needs the extra help. We are going to make an appointment with physical therapy for some "transfer and lifting" classes.

I wish I had more pictures for this post but my kids borrowed the camera. One of AJ's highlights this summer was a pontoon boat ride. He just loved it. He really wanted to see a dolphin and Nemo. Neither of which will be found in a Minnesota lake but he had fun none the less.

We are so thankful for a great start to summer (Ok, it's more than half over but let's not go there) God has blessed AJ with lots of happy experiences that far overshadow his times of pain. I'll leave you with a Bible verse and a song that AJ and I have been singing. You might remember the old song,

"Praise Him, Praise Him, All ye little children,

God is Love, God is Love!

Praise Him, Praise Him, All ye little children,

God is Love, God is Love."

Aj really enjoys this song and it gives us both the
opportunity to Praise Him! If you don't recognize it,
you can hear it here: Praise Him Song

Psalm 28:7 The Lord is my Strength and my Shield; my heart trusts in, relies on, and confidently leans on Him, and I am helped; therefore My heart greatly rejoices, and with my song will I praise Him.

Thanks for following us on this journey.

Barbara

Happy Memorial Day and High School Graduation Day!

2011-05-30T17:03:00.000-07:00

The pictures say it all!

We started out our Memorial Day at a service in the Twin Cities and then to visit the graves of two of my uncles.

Then we had a picnic at the park and the kids played (swam) in the fountain.

We celebrated AW's graduation from high school.

We walked around the lake and then took a streetcar ride (AJ's version of a train).

We ended the day with a tour (compliments of Grandpa) of the lock and dam.

As one of my kids said (in sidewalk chalk):

For that we are thankful!

Barbara

Shoe Cobbler & Potty Trainer

2011-05-21T18:35:00.000-07:00

It's been a week of trying new things. I started out so frustrated over AJ's inability to wear shoes. I have purchased so many pairs of shoes for him - but none have worked out. He blisters over and over again on his feet. When he sees me coming with shoes he screams, "no, owie". I finally decided to sew him some shoes. I figured I couldn't be out much by trying; Wrong! Shoe materials are expensive. After I finished making them I decided they will work out better than others I have purchased. I have some tweaking to do but AJ likes them. They don't blister his feet and he can walk outside in something other than socks. I hope to try some more styles with lighter fabric that will keep his feet cooler. Here are his cute new shoes (Ok, I could have used a cuter fabric)

With his feet happy, I decided to go ahead and start potty training him. I'm not sure what happy feet have to do with potty training but I had one success so why not try another. I headed off to the store and guess what; Target did not have any boy's training pants. I wasn't about to be undone so I bought cute pink ones. I threatened the kids with the loss of food for the summer if they dared to tell AJ they were girl's underwear. (You know I wouldn't really do it but it got my point across). AJ has done great. He looked at the pink underwear a bit cautiously but he caught on quickly to potty training. Do I dare say we are over the hump? I hope so. Here is the underwear: Pink cupcakes

What else could a three year old boy ask for? Answer; The potty dance. We do it every time he - you know.... If you have not heard the potty dance - it's a keeper. We go to youtube and dance to it - you can watch it here:

AJ had lots of fun playing doctor in his new shoes and pink cupcake underwear.

Today we celebrated birthdays. AW turned eighteen.

EE turned Ten - double digit!

It's been a good week, one of rest and achievements!

Barbara

This world is not our home...

2011-05-09T15:15:00.000-07:00

Today our friend Amber left this world. As her Mom stated, "Amber's life has finally begun." Amber was 11 years old and had RDEB. We met her at the EB conference last year. Amber knew the Lord and her family has the assurance that she is with Jesus. Please pray for them as they adjust to life without her.

Philippians 3:20-21 (Today's New International Version, 2005)

But our citizenship is in heaven. And we eagerly await a Savior from there, the Lord Jesus Christ, who by the power that enables him to bring everything under his control, will transform our lowly bodies so that they will be

like his glorious body.

Goodbye Amber, but only for a time; we will meet again.

Barbara

Whom do we honor?

2011-05-08T13:59:00.000-07:00

Mother's Day always brings many mixed feelings at our home. Some of our children have had many mothers and it get confusing for them. Exactly whom do we honor? I personally choose to honor all of them.

Birth Mothers; Were it not for them I would not have had the opportunity to experience the joys and sorrows of parenting my adopted children. I know their birth mothers all lost a treasured child. Some may have not realized just how treasured their children were until they were gone.
Foster Mothers; They provided a safe home where my children could stay until a permanent home could be found.
Adoptive Mothers; They traveled to foreign lands to reach out and help an orphaned child. Their hope was for a, "happy ever after" ending and it just didn't work out that way. Today I choose to remember their loss as it ultimately became my blessing.

Today is a day I especially pray for AJ's birth mother. She holds a very dear place in my heart. She went against what most of society would do in a very difficult situation. She chose to continue with an unplanned pregnancy. She did not blame her unborn child for the wrong that had been done instead she allowed AJ to live. I know she suffered in silence; keeping her pregnancy a secret that is still hidden from all that know her. She expected to feel a sense of relief after his birth but instead was faced with AJ's diagnosis of EB and the knowledge that she was a carrier of the disorder. She is in our prayers that she would experience the fullness of the gospel in her life.

When people ask to pray for AJ, I often ask them instead to pray for his birth mother because:

Life with EB is possible with Christ.

Life without Christ is simply unbearable.

So thank you to all of the mothers in my children's lives. Your sacrifices made it possible for me to celebrate mothers day today.

I Samuel 1:27-28 (English Standard Version)

For this child I prayed and the Lord has granted me

my petition that I made to him. Therefore I have lent him to

the Lord. As long as he lives, he is lent to the Lord.

May we recognize that our children are gifts that belong to the Lord. May we willingly place them into his care.

Happy Mother's Day,

Barbara

David vs Goliath

2011-05-04T17:35:00.000-07:00

It seems that just as I finish one thing; another need arises. That has been the story of the month. I did get good news today. Last fall our daughter had major cuts to her disability services. This winter we had a judicial hearing to appeal those losses as we believed that the law had not been followed in assessing her need for services. We finally got word today that we won and services will be reinstated. We will now have two months of services and guess what - time to have her assessed again. We are very thankful for a decision in her favor. Then this afternoon we were threatened with with loss of services for another child. In typical government fashion, I was told, "You can always appeal". Easier said than done.

Some days I just want to enjoy my kids without always having to spend my energy fighting to keep their services in place. It may be school, insurance, county or state programs. I don't know what happened to the word, "service" It seems like many of the organizations that we work with make it their goal to reduce their clients services rather than work to meet the needs of the child. I understand money is short but cutting services that will result in higher costs down the road just doesn't make sense. Sometimes AJ's insurance gets the idea that they should limit his bandages to fifteen total a month. We use more than that in one day. I appeal and we remind them that a hospitalization resulting from an infection will cost more than the monthly bandages.

Since I have many people read this blog, in all fairness I have to state that AJ's school setting has gone beyond what is expected. I have been so impressed with their planning and provision.

For those of you with children with disabilities, you understand the constant battle to keep services in place for our kids. We always have to be on alert for threats to their well being. I'm not asking for extras; just enough to keep us going.

With that said I remind myself, rest in God, rest in God. They really are his battles and I need to go out there like David and fight Goliath but I am not responsible for bringing Goliath down, that's God's responsibility. It's hard to remember when situations get heated but it's the basis for our struggle.

1 Samuel 17:47 (English Standard Version)

That all this assembly may know that the LORD saves not with sword and spear. For the battle is the LORD’s, and he will give you into our hand.

I encourage you (as I repeat this to myself), if you are deep in the battle; stop, rest and pray. Get direction and remember that the battle is the Lords. We just need our marching orders. Like in the battle of Jericho; God's instruction brought about the victory.

Barbara

Easter with Family

2011-04-25T19:16:00.000-07:00

It was a beautiful day to celebrate the resurrection!

We started out the day with a sunrise church service

and then enjoyed the afternoon with family

We had an Easter Egg hunt and it seems J always ends up in a tree??

RJ and Scott enjoyed the sunshine

AJ offered help while waiting on the trampoline

Grandpa gave AJ some tips on finding his eggs.

The girls enjoyed dressing up.

It was good to have some of our kids (from out of town) here for the day.

AS and E are here visiting this week. Tonight we celebrated April Birthdays and are relaxing with some down time; something I don't do often.

What a great day!

Barbara

Happy Easter

2011-04-23T20:14:00.000-07:00

Happy Easter Everyone. What a privilege to celebrate the resurrection of Jesus. He is our hope and our Risen Savior.

I Peter 1:3-4

Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead, and into an inheritance that can never perish, spoil or fade. This inheritance is kept in heaven for you.

Barbara

Praying for Andria and her family

2011-04-06T10:51:00.000-07:00

Please pray for our friend Andria. She was AJ's night nurse for the first two years of his life. She faithfully sat up night after night, rocking him, administrating medication and keeping his oxygen stats where they needed to be.

It is with deep sadness that I share the news of the death of Andria's husband Karl. They were married less than nine months ago and he passed away suddenly at the age of 25. We are so saddened by Karl's passing and the loss of Andria's husband and father to her three children. Please pray for Andria, and her children.

II Corinthians 1:3

Praise be to the God and Father of our Lord Jesus Christ,

the Father of compassion and the God of all comfort.

Praying their hearts will be comforted.

Barbara

Death, Life and the Resurrection; Do we live like we believe it?

2011-04-02T19:53:00.000-07:00

Time flies - I've had health issues that took first priority over blogging but things are settling in to more of a "normal" routine. The kids have been off school this week for spring break and Monday they head back. AW got his college acceptance letter and I celebrated my 49th birthday. My kids made sure to let me know that I am old! I told them that I am only one day closer to heaven.

I've been busy planning our summer. We have made lots of camping reservations. I love to camp and so does everyone else. We sold our pop up camper and have purchased an expandable trailer with a bathroom and tub. Here is our camper:

We knew we could not continue camping and bathing AJ in a tub on the picnic table. Not only is it not the cleanest way to help his wounds but it was quite the sight for the neighboring campers. AJ and I will appreciate the privacy.

Thanks for praying for Melanie. She is no longer in critical condition but still has a long way to go. You can keep up with her progress by checking http://www.caringbridge.org/visit/melanie

I've asked myself a lot of questions when thinking about Melanie and how I would deal with AJ in a similar situation. I want to think I would handle it as my faith directs me but it's hard to imagine since I have not walked in those shoes.

If you have a child with a serious or terminal illness, have you wondered if you will know when to "let them go"? I would love to hear your thoughts if you feel like commenting. I know that this life does not have a strong hold on me and I look forward to life beyond. I wonder how AJ will feel? I know I want to raise him with the confidence that this life is not what we live for - instead we are living for eternity with our savior.

That brings up a difficult question. How far do we push medical science to keep our bodies alive? As a parent, how far do we push to keep our children alive when they live in daily suffering? I definitely don't believe in hastening their death and I know that I would always provide food and hydration but what else? When do we say no more and allow ourselves or our family members to move into the fullness of what God has prepared for us?

I Corinthians 2:9 (New International Version)

However, as it is written;

"What no eye has seen,

what no ear has heard,

and what no human mind has conceived"

the things God has prepared for those who love him.

I know I want AJ and all of my children to know about heaven and have anticipation for living there. Not that he will not be encouraged to live to the fullest here on earth but if our faith is real, shouldn't we focus on what is ahead? Do we want to take the notion that the world has - this life is it and we need to squeeze everything out of it that we can get because there is nothing more?

I know life is precious and I also know that God has set the number of days that we will live here.

Job 14:5 (New International Version)

A person's day are determined;

you have decreed the number of his months

and have set limits he cannot exceed.

I believe that suffering and blessing has a place in our lives. I want my life and my death to bring glory to the God I serve. I also want the same for AJ. I pray that I can be a mother that directs him to the cross and the hope in the resurrection. What a great thing to think about as Easter approaches. It's not about death, it's about His (Jesus) resurrection. He is risen and that makes all the difference for us. Now to live like that - not clinging to this world but instead with one foot already in the door of heaven.

John 11:25-26 (New International Version)

Jesus said to her, "I am the resurrection and the life.

The one who believes in me will live,

even though they die; and whoever lives by believing in me

will never die. Do you believe this?"

Barbara

Please pray for Melanie

2011-03-16T08:01:00.000-07:00

Please pray for Melanie and her family. She is very, very sick and she and her family need our prayers. Melanie is a friend of AJ's from our church. She has suffered from a serious physical disability since birth but through it all she has loved Jesus with a sweet and gentle heart. Right now she is in the PICU and and you can read about her journey here Melanie

Barbara

I've been singing this song and praying for her this morning.

I Know Whom I Have Believed

I know not why God's wondrous grace

to me He hath made known,

Nor why, unworthy, Christ in love redeemed me for His own.

I know not how this saving faith to me He did impart,

nor how believing in His Word wrought peace within my heart.

I know not how the Spirit moves, convincing men of sin,

Revealing Jesus thro' the Word, creating faith in Him.

I know not when my Lord may come, at night or noonday fair,

Nor if I'll walk the vale with Him, or meet Him in the air.

Chorus:

But 'I know whom I have believed,

And am persuaded that He is able

To keep that which I've committed

Unto Him against that day.'

Happy Birthday Rachael!

2011-03-04T07:17:00.000-08:00

This week was Rachel's birthday. I really enjoyed thinking about her and I tried to spread the enjoyment to the whole week and not just March 2nd, the day of her birth. Rachael was our firstborn and would be twenty six years old this week. She died shortly before she was born as the result of a serious kidney disorder. We learned earlier in her pregnancy that she would not live long past her birth. I can now look back at her short life with pleasure and peace. At the time she was born it seemed like I would never see the situation through the eyes of anything but pain. Each day that has passed I have treasured the words of scripture that hold so true. I can't wait to see her and have time with her again.

I Thessalonians 4:13-18 (New International Version 1984)

Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have not hope. We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever. Therefore encourage each other with these words.

What joy to look back on her life and into the future, "through the eyes of Jesus".

Be encouraged,

Barbara

He's Growing Up

2011-02-28T07:18:00.000-08:00

Aj learned a new skill - crib jumping! It's been easier to just keep him in a crib all this time as he has been connected to an airway monitor and a feeding pump - at least until - he learned to jump over the side while still connected to his pump. I really don't want an emergency trip to repair a hole in his stomach or to have the tube replaced so it was time to find him a bed.

Some of you know that I am a Craigslist shopper. We went in search of a bed and found a fire truck toddler bed.

I didn't even know they made cute beds like this. Now to take down the zoo theme on the walls! Anyone in need of a nursery zoo theme?

A special thanks to KJ who picked up the bed for us. It gave us a good excuse to travel to the Twin Cities for a visit. The girls, AJ and I made it a day trip and took KJ along to the Mall of America. We had lots of fun as we spent most of the time on rides. (For those of you that don't know me - I hate shopping more than anything).

I found AJ his summer shoes. We knew that many kids with EB wear Crocs. Since AJ's feet were getting too hot in slippers I ordered a pair online. He loves them. I did have to stretch them out some - I used a hair dryer to heat the material and then stretched it. Considering he has his feet pretty heavily wrapped, I'm so glad they fit.

They look cuter on his feet than in this picture. He adjusted to them quickly but does seem to trip some so it will take some getting used to. I don't think it's that they are too big but instead they seem to stick to the kitchen floor (yes, my floor is clean).

Thanks to all of those that called or emailed about RR. We are working on finding a permanent placement for him. Right now a longer term hospital setting is being considered - just to get him better stabilized. At this point we just keep moving forward, waiting for his care team to make a decision.

2 Peter 1:3 (New International Reader's Version)

God's power has given us everything we need to lead a godly life. All of that has come to us because we know the One who chose us. He chose us because of his own glory and goodness.

Have a blessed week. I'm hoping for Sunshine.

Barbara

The End with a New Beginning

2011-02-20T22:49:00.000-08:00

I know I should be in bed but it's been an eventful day. I feel like I just finished a very long book and I am ready to begin a new one tomorrow. With that comes a sense of loss and hope for a new beginning. Enough of my vague and probably rambling sentences - on to the details!

RR was hospitalized tonight. Unfortunately not before the kids witnessed a violent end to the evening. Thankfully everyone is ok physically but it could have ended differently. We knew this could happen. We knew that RR would be very difficult to stabilize after having to remove him from the medication that has reduced his violence and kept it at bay for the past five years.

I can say with peace and a strong sense of conviction that this was the last time RR will live at home and be able to victimize his family members. It's the last time the kids will watch the ugly events unfold and fear for their safety and ours. It's been a lot of years and a lot of work but our part in "hands on parenting" of RR is coming to an end. We will continue to be family and continue to love him but it won't look the same. It is with a sense of sadness for all of us and a sense of peace knowing that it's time to be done. Done with the anger and the violence. It's probably long past due but the time is right.

We have many things to be thankful for tonight. Things could have ended much more seriously. I'm thankful for the Rochester police department that responded in the time they did, in the middle of a snow storm. I'm thankful for Scott, who walked in the door at the last possible second as I don't think I could have held things off any longer. I'm thankful for the 911 operator that stayed on the line for what seemed like an eternity. I'm thankful that AJ was taking a nap and missed all the excitement. I'm thankful for the fact that RR got a bed in the hospital unit as it was the last one available in a 75 mile radius. I'm thankful the kids are asleep knowing they are safe. I'm thankful tomorrow we are able to spend the day together and work through the events of this day. I'm thankful it's done, finished. For this I am confident; We have loved RR well, we have parented RR well. We have shown him Jesus.

There are many that have helped us over the years with RR. You know who you are. You have provided many roles; respite provider, personal care assistant, crisis worker and friend. You helped and listened even when you may have thought we were crazy to continue. I am thankful for all of you. You were so important in helping RR and in helping our family. We could have never done it without you. I am so thankful for you and hope you know that what an important role you played. It allowed RR to live for nine years with a family that loved him. Some days I never thought we would make it that far but we did; together. I hope you can know, with us, that the time has come for a different setting for RR. Not a different family as we will always be that, but a different environment, one that can provide the level of safety he requires.

Ecclesiastes 3:1-14 (Today’s New International Version, ©2005)

There is a time for everything, and a season for every activity under the heavens:

a time to be born and a time to die,

a time to plant and a time to uproot,

a time to kill and a time to heal,

a time to tear down and a time to build,

a time to weep and a time to laugh,

a time to mourn and a time to dance,

a time to scatter stones and a time to gather them,

a time to embrace and a time to refrain,

a time to search and a time to give up,

a time to keep and a time to throw away,

a time to tear and a time to mend,

a time to be silent and a time to speak,

a time to love and a time to hate,

a time for war and a time for peace.

What do workers gain from their toil? I have seen the burden God has laid on the human race. He has made everything beautiful in its time. He has also set eternity in the human heart; yet no one can fathom what God has done from beginning to end. I know that there is nothing better for people than to be happy and to do good while they live. That each of them may eat and drink, and find satisfaction in all their toil—this is the gift of God. I know that everything God does will endure forever; nothing can be added to it and nothing taken from it. God does it so that people will fear him.

I'm heading to bed with no regrets.

Goodnight,

Barbara

Happy Valentines Day!

2011-02-14T18:16:00.001-08:00

It's been a good day with all of the kids. RR was discharged from the hospital last Friday. He was there twenty eight days. It's been interesting as it's like having a different child at home. Psych medication can change so much. Right now he talks constantly and very fast. He doesn't' really have a conversation with us; instead he sounds like he is announcing information - it's a start. Time will tell if the new medication is a good match for him.

For those of you wondering; We found AJ does not like French fries. We took him to Mickey D's and made a big deal of it - he tasted one and spit it out. He didn't quit trying though. He spied my apple pie and found he LOVES apple pie. Now every time we run an errand he keeps asking for apple pie - Pretty please (Thanks KJ for teaching him that :)

Aj has had a hard time with gagging and vomiting since his procedure. I am not really sure why but it most likely has something to do with the position of his GJ tube or his reverse motility. His food keeps coming up into his stomach and out his mouth. I'm trying to give it more time. We see the pediatrician on Friday though I don't expect her to know a lot about it. I'll call the GI doctor if it doesn't get better soon. We are getting some food into him so I don't feel like it's an emergency. The pain clinic called today and they wrote AJ a prescription for Ativan. I don't have any immediate plans to use it but the next time his wounds are especially bad and he has a lot of anxiety before his bath, we are going to try it.

AJ took "Toy Story" Valentines to school today. He had lots of fun and came home asking for more candy! I guess he is making up for what he couldn't eat at Christmas. He is still pretty careful and only eats small bites of things. Scott bought me a bouquet of balloons and AJ was determined that they were for him. He kept saying, "mine" and did not want me to touch them.

Here he is with MY balloons.

Happy Valentines Day!

I John 4:19 (New International Version)

We love because he first loved us.

Barbara

So Thankful...

2011-02-03T12:22:00.000-08:00

Psalm 69:30 (English Standard Version)

I will praise the name of God with a song;

I will magnify him with thanksgiving.

Our hearts are filled with Thanksgiving. We are back home! The procedure went extremely well and we were allowed to leave the hospital (this does not happen very often - Mayo usually likes to keep us as long as possible).

(sorry the picture is not the greatest quality - the hospital gave it to him as a gift)

AJ's airway looked very good. The largynamalacia is back (floppy larynx) but it is not serious enough to treat at this point. If or when it becomes a problem he is a great candidate for another airway revision - he has already had one done and his doctor believed it would work again if necessary - great news - any way to avoid a tracheostomy I'll take.

The interventional radiology doctor was so very pleased with AJ's dilatation. He said AJ's esophagus went from having two hour glass like blockages to a nice open area. He really enjoyed working with AJ and asked that we specifically request that he be involved in any future interventions. Three of the physicians present had worked with AJ before. It's so great to have a team that loves to work with AJ.

AJ did so great. I have to credit the peace of God in his little life. He went back to the operating room without a tear. He laid down on the table while they prepped him, he let them place the mask on his face and went to sleep holding my hands. Even his IV access was great. It has been terrible in the past but they got it in without any difficulty.

AJ's most painful part was the intubation. His mouth is filled with blood blisters from the damage. While in the recovery room he asked me to take a needle and start breaking them. Putting a needle in his mouth is not the highlight of my day but it brings him real quick relief. He is not allowed anything to drink or eat until tomorrow and he is not very happy about that. He is asking for McDonalds - probably because we told him they would fix his throat and that he would be able to eat a french fry - something he has never been able to do.

The procedure did bring out the need for additional OT services to keep his mouth nice and open. It opens substantially less than it used to. This will become a problem in the future as the smaller the opening; the harder it is to intubate him for any procedure. The doctor felt he had strictures holding it closed. I had noticed that to get a toothbrush in his mouth is difficult as he opens just wide enough to get a really small brush between his teeth.

Thank you for all your prayers. We are indeed blessed.

Barbara

Counting down the days

2011-01-31T09:38:00.000-08:00

Thursday is the day for AJ's esophageal dilatation. They will also take a good look at his airway. I am expecting good results since he has not been having any difficulties breathing. Last week we met with the dermatologist. She was concerned about his increasing wounds but was happy that we are making headway with the terrible itching.

Tomorrow we see the OT to look into suggestions for bathing him. He is outgrowing his little tub and putting him in the bath and having to unwrap him there is really difficult. He seems to manage to tear up his skin faster that we can get it to heal. We've been resorting to bathing on the kitchen counter. It adds to the difficulty of the whole process but it saves our backs. For you EB families that read this; I would love to hear more about what you have found that works well.

RR is still in the hospital so we have been busy running back and forth. He really had a tough time getting off of some of his medications. They have started a new mood stabilizer and he is starting to show signs of improvement. For those of you that have had experience with a manic phase of bi-polar; you know how tough it can get when it is out of control - he has had pretty classic symptoms. He spent quite a few days thinking he was President Obama's cousin. Then he crashed and slept for a long time. Yesterday he called and said it was "Jonah" I was talking to. I hope he can find humor in this when it is over :) I don't know when he will be discharged. He is not stable yet but things are moving in the right direction.

It is so quiet at our home. My sister and her boys have moved on to their new home and we are really missing them. AJ cried this morning that his cousins were not here. He ran so much with them that his little feet blistered on the bottoms. This morning he alternated crying between his feet hurting and the boys being gone. I told him we will have to visit them this spring (I'm sure he has no idea what that means but it got him to stop crying for a bit).

AJ will have to spend time playing with his penguins!

Thanks for remembering AJ in your prayers on Thursday. I'm also praying that RR's hospital discharge and AJ's hospitalization don't conflict. I'm looking forward to AJ being able to eat again. I'll also admit that I am at a loss as to how to prepare for RR's return home. We've had many rocky roads with RR in the past and new medications will change many of the dynamics of his behavior.

I am at peace. God has been so good to us and his grace has carried us through many good and difficult times. I know it will be there in the future too; Future grace!

Oh how I look forward to that day of redemption. Don't lose sight of what is ahead!

Romans 8:22-23 (New International Reader's Version)

We know that all that God created has been groaning.

It is in pain as if it were giving birth to a child.

The created world continues to groan even now.

And that's not all.

We have the Holy Spirit as the promise of future blessing.

But we also groan inside ourselves

as we look forward to the time when

God will adopt us as full members of his family.

Then he will give us everything he has for us.

He will raise our bodies and give glory to them.

I'll post again after AJ's procedure.

Barbara

Before the temperature drops

2011-01-17T13:59:00.000-08:00

I'm enjoying calmer days at home. RR is safe in the hospital and happy to be there. He usually derives a sense of safety knowing he can not hurt himself or others when in a psychiatric unit. They have just started to lower one medication and it seems like it will take forever if they are really going to remove all his medications and start over. There has been some disagreement between the doctors on the value of that. This is the first time he has ever been hospitalized close to home. (Thank you God for bringing us to Rochester) We used to have to drive two plus hours just to visit him.

AJ is starting his quarterly doctor's appointments this week. We try to see most of the specialists at least quarterly. He will see the cornea specialist and they will dilate his eyes to check for any damage. EB can cause blisters and abrasions in the eye that can be very painful. AJ has not had regular problems with this and for that we are especially thankful.

AJ will also see his pain team. I am going to ask them about an anti anxiety drug to give him before bandage changes. He holds onto his bandages so tight when we try to remove them. He will take a swing at you if you are not careful. The anticipation for him seems worse than the actual pain. Last night he was almost asleep before we were able to finish up bandages changes. I found it interesting that he was too tired to fight and I was able to break a blister on his chest and drain it without any fussing. He would not have let me do that quietly had he been awake.

He does have a very raw foot. It looks bad and he is very sensitive to anyone going near it. It doesn't seem to slow him down much but I'm hoping it starts to heal soon.

The kids have been outside playing in the snow. The temps are nice today (25 degrees is nice for January in MN). Tomorrow is the big freeze with 5 degrees being the high. Tomorrow is also back to school day as they all have the day off today.

Dad and AJ

AJ in his sled (Thanks Emily for the soft, sweet hat)

AJ's cousin AS on our backyard play fort

AJ and AS play in the snow

Thanks for following us on our journey. I'm anticipating a good week.

Barbara

A good hospital stay?

2011-01-14T19:07:00.000-08:00

Sorry for the delay in writing. I've been busy to say the least.

RR was hospitalized today. His physical symptoms are too serious for his doctors to ignore any longer. He has diabetes insipidus (a kidney problem) and a tumor on his pituitary gland. We are not sure what problem is causing his symptoms, or if both are. Add to that some pretty hefty psychiatric meds and it's a recipe for more questions without answers. The doctors are going to take away all of his medications and start over. The problem with doing that, is that he becomes violent and psychotic without his meds. RR remembers well those difficult days and is concerned about what the future days will bring. He is in a good place and they are working hard to meet his physical and psychological needs. It appears that he may be inpatient for a while. This will not be a quick fix but it would be a blessing to have some answers.

AJ's esophageal plan has changed back and forth. This past week Mayo told me that they wanted AJ to fly to Cincinnati as his airway issues complicate the procedure. (Cincinnati is where the large EB clinic is located) I started working on the details when his GI doctor called and said they had a meeting of everyone involved and worked out the problems. They are confident they can safely do the procedure here at Mayo and he is scheduled to be admitted as an inpatient on February 3rd. This is good news for which we are thankful.

Our home is extra busy as my sister and her two boys are staying with us for a few weeks. AJ is having lots and lots of fun. KJ was here for a week and she always makes AJ's life a little crazy :)

Thanks for your prayers. RR really needs them. It's hard to start doing major medication changes but his body needs help and the hospital is the best place for him right now.

My prayer for RR is taken from the verses below; Lord it is good to sing your praises, how pleasant and fitting to praise you! Heal RR's heart and bind up his wounds.

Psalm 147:1-3 (New International Version)

Praise the Lord.

How good it is to sing praises to our God,

how pleasant and fitting to praise him!

The Lord builds up Jerusalem:

he gathers the exiles of Israel.

He heals the brokenhearted

and binds up their wounds.

Thanks for reading. I hope that whatever your comes your way, that you can experience the peace of God and the blessing of his goodness in your life. He truly is good and my heart overflows in thankfulness to him.

Barbara

First Day of School

2011-01-07T08:33:00.000-08:00

Aj had his first day of school. He started out pretty upset and was not happy that I was not going with him. The school staff were great and it wasn't long that he was taking part and enjoying himself.

He will go twice a week for two and a half hours each time. It's a great little group of kids and I think he will really enjoy himself. After he returned home (tired but with a smile on his face) he said that he cried at school and wanted Dad. (Of course he wanted Dad. Dad wasn't the one forced him to go) He also said he wanted to go back again because he had fun. The confusing part was that he said that he had coffee and that it was hot. Not sure what that was about but I'm sure he will have many stories to tell.

Here are his first day of school pictures. He was determined not to show his face as he was very upset with me for sending him :)

On a medical note, we had our visit with AJ's airway doctor and she stated that she personally will be in the operating room to look at his airway and then intubate him for the esophageal dilatation. We are just waiting for the date. I am thankful for Dr T. She will get a very good look at his airway and she will do a great job with his intubation. She takes very special care of AJ.

Today is our 27th wedding anniversary. We are off to celebrate; should be a great weekend. Hope yours is too.

Barbara

Support, Support, Support

2010-12-29T09:13:00.000-08:00

I Peter 3:8 (Amplified Bible)

Finally, all of you should be of one and the same mind, united in spirit, sympathizing with one another, loving each other as brethren of one household, compassionate and courteous, tenderhearted and humble.

There can not be enough said about getting support when raising children with disabilities. Everyone in the family needs it: the child with the disability, the parents, the siblings, the caregivers, everyone.

The obstacle with EB is that most people have never heard of it and have no idea what it is like to live with it. For children with a psychiatric disorder, many may have heard of the diagnosis but unless you have personally lived with someone that suffers from it, few really understand what it is like parent a child with the disorder.

Having moved to a huge medical community in the last year, we immediately benefited from the good medical care available. Developing a local support system that understands the demands placed upon us is taking more time. I've found that most people are supportive when they recognize we are caring for a child with a physical disorder. They may think we are a bit crazy to have voluntarily decided to do it (adoption) but none the less they view it as an Ok thing.

On the opposite end of the spectrum is the response to caring for children with psychiatric disorders. We have found this to be a very different experience. It is often the family that is blamed for many of the children's behaviors that are (in reality) a direct symptom of their medical condition. I can go from one department in a major medical clinic where I am seen as a gifted saint for caring for a child with EB, to another department that questions every parenting skill that I have. The huge swing in treatment can be very frustrating.

I understand that treating a child with a physical disease such as EB means finding a medical procedure that will alleviate the pain and suffering. Many of the interventions may not work but there are interventions to try and the medical community derives a sense of "treatment" because they are actively doing something. In dealing with a mental health disorder, medication will play a part but behavioral interventions become the primary key. This brings into play a whole host of ideas and every practitioner has their own set. To further complicate this, outcomes are very difficult to measure as there are few clear physical indicators. If clear progress is not seen, it is far too easy for the medical provider to find fault with the family.

I spoke with a friend this past week that is working really hard to parent her mentally challenged child without focusing all her time defending her parenting. The practitioners that work with her child are quick to find fault with the parent because the practitioner's interventions were not successful. How confusing from the way we treat a patient that is suffering from pain (such as in EB). In treating pain, if the medication does not alleviate the suffering, we look to another medication or another form of treatment to bring relief. How can it be that in treating a child with a mental health disability, when the first line of treatment does not bring quick results, the family is questioned to be at fault? How does that help treat the child's disorder and how does that support the family?

I find myself advocating for those families that suffer in silence due to their adverse treatment resulting from caring for children with psychotic disorders. Some of those families will simply quit treatment until a medical emergency pushes them back into the system again. This is so frustrating and painful to watch. These families need our support. They need someone to "hear" what they are saying. They need to be treated with respect.

If you know someone today that is caring for a child with a disability; tell them that you will pray for them and then follow through and pray. Listen to their story even if you can't relate. Ask them if there is anything that you can do to help lighten their load or surprise them by doing something special for them. Realize that the need may not be time away from their child but rather encouragement and support so that they can joyfully continue their care giving.

On the AJ care giving front;

Aj has struggled with reverse motility of his feeds coming back up through his intestines, his stomach and vomiting them up. We have had to slow his feeds down to the point that he is on his pump 24 hours a day. This is not something that we want to do long term. We will see the airway specialist on Monday the 3rd and hopefully learn more about the plans for his esophageal dilatation. His yeast infection seems to come and go but he is a pretty happy boy. He is scheduled to start preschool on Wednesday the 5th. He will go two mornings a week. He has a new Buzz Lightyear backpack that he is excited to use. The older kids taught him how to tell time :) They ask him what time it is and he proceeds to look at his empty wrist and respond, "Six o'clock." This morning he work and up and said he was going to the doctor today at six o'clock!

We have had a great Christmas with extra family here. It's a treat to have our older children around. Here are some of my favorite photos:

Enjoy the last of 2010 as we anticipate a blessed 2011.

Barbara

Our Christmas Letter to You

2010-12-19T15:33:00.000-08:00

Merry Christmas! Since most of you might not see our Christmas letter, I thought I would post it for you.

It’s been a busy year at our home (I guess that is the norm for us). Here are the many things we are thankful for:

We moved into Rochester and are very happy living close to all of our activities. We have a large home (not as large as our home in Alexandria but big enough to meet our needs).

AS and E were married in January. It was the most incredible wedding in the Sierra Nevada Mountains. (I guess you could say we added a family member and we didn’t even have to adopt again) They are living in California and we are so happy for them.

KJ is in her second year at Bethlehem College and Seminary. She had the privilege of traveling to South Africa this fall for a major evangelism conference.

SS is doing well and living in Alexandria. We are thankful for the many friends and supports that he has there.

AW is in his second year at the local community college and will graduate from high school this next June. He is planning on attending North Central College in the Twin Cities next fall. (He will be studying mass communications through media; can you guess by the picture he gave me to include?

All of the kids are in public school this year. JR attends school in Stewartville (10^th grade).

RR (10^th grade), RJ (7^th grade) and EE (4^th grade) are all in different Rochester schools. KJ (6^th grade) and KM (6^th grade) are in Minnesota Virtual Academy (online public school from home). You wouldn’t believe what conference and special education meetings are like with eight students and seven schools.

Aj starts preschool in January. Rochester is known for its great medical care and we have definitely benefited from it. AJ’s care has become more complex but we are in the best place to meet his needs.

We have found a church in Rochester and are thankful for the friendships we are building.

After a major medical work up; Scott was given the go ahead to return to work. We are thankful that even in a tough economy; he was offered a job at an assistive living facility. He will be working in the recreation and physical activity department.

Our kids with exceptional needs are benefiting from a county that has generously provided programs and services to help meet those needs; for that we are grateful. RM has moved to a faith based residential facility in Idaho.

We wish she was not so far away but we are so happy to know that her needs are well met. JN’s situation has not changed a lot from last year but I guess that’s a part having raised a family with some members having exceptional needs. We live with the adage that, “No news is good news.

We still stay active with camping in the summer and the YMCA in the winter. We went to family camp this summer and Scott took the girls to a Dad’s and daughter’s retreat this fall.

If you should end up in Rochester this next year, please let us know as we would love to have you for a visit.

Merry Christmas,
Barbara

Blessed or Cursed

2010-12-16T14:43:00.000-08:00

There are many families struggling with serious health problems. Both in the EB community and out. As I listen to what they talk about; I realize that there is a lot of confusion about why God intervenes when he does.

I can think of a family that I especially care about. They have trusted God with a deep heartfelt faith and yet things are not turning out like they had hoped and prayed for. I pray for them that they will experience God's grace deeply, each and everyday. It is not a time for them to throw away their faith but instead a time to dig deeper in the trenches. As Christians we need to stand close and support those that continue day after day with seemingly little improvement.

It is especially painful for me when I hear of a family that is celebrating the improvement in their child's health but then attribute that improvement to something they have done to please God. Some will attribute it to their great devotion to God. Some to a faith that is so great that in no way could their petition to God not be granted. Others may attribute it to the way they have devoted themselves to their loved ones care. How could God not hear them and heal their child?

When I hear these statements; I want to shout that it does not work that way. Faith is not an equation. Our children's healing is not dependent on the good that we have done or how much we love our heavenly father. Now you may think that I respond this way because AJ has not experienced a great physical healing. The truth is that I am so at peace over what God is doing in AJ's life. I know that God is using AJ and his EB to make known the good works of our Heavenly Father. What higher calling can any of us have?

As He passed along, He noticed a man blind from his birth.

His disciples asked Him, Rabbi, who sinned,

this man or his parents, that he should be born blind?

Jesus answered, It was not that this man

or his parents sinned, but he was born blind

in order that the workings of God

should be manifested (displayed and illustrated) in him.

John 9:1-3 (Amplified Bible)

The struggle I write about today is derived from the deep pain that I feel for those families that suffer unnecessary hurt over false sentiments. How is a family to react when they have given all to their child? They have trusted God with their child's life and their child dies or sometimes even worse; their child's suffering increases. It is for those families that I write today. If you are one of those families and you read these words; know that God is still with you, he has not abandoned you. Please be encouraged by these words; not mine, but those of our heavenly father.

God does not work the way our minds reason or think the way we expect him to;

Think about what God has done.

Who can make straight what he has made crooked?

When times are good, be happy.

But when times are bad, here's something to think about.

God has made bad times. He has also made good times.

So a man can't find out anything about what's ahead of him.

In my meaningless life here's what I've seen.

I've seen a godly man dying even though he is godly.

And I've seen a sinful man living a long time

even though he is sinful.

Ecclesiastes 7:13-15 (New International Reader's Version)

****************

The Lord said to him, "Who makes a man able to talk?

Who makes him unable to hear or speak?

Who makes him able to see? Who makes him blind?

It is I, the Lord.

Exodus 4:11 (New International Reader's Version)

****************

"My thoughts are not like your thoughts.

And your ways are not like my ways,"

announces the Lord.

Isaiah 55:8

Be encouraged because a better day is coming.

Strengthen the hands of those who are weak.

Help those whose knees give way.

Say to those whose hearts are afraid,

Be strong, Do not fear.Your God will come.

He will pay your enemies back. He will come to save you.

Then the eyes of those who are blind will be opened.

The ears of those who can't hear will be unplugged

Those who can't walk will leap like a deer.

and those who can't speak will shout with joy.

Water will pour out in dry places.

Streams will flow in the desert.

The burning sand will become a pool of water.

The thirsty ground will become bubbling springs.

In the places where wild dogs once lay down,

tall grass and papyrus will grow.

A wide road will go through the land.

It will be called The Way of Holiness.

Only those those who are pure and clean can travel on it.

Only those who lead a holy life can use it.

Evil and foolish people can't walk on it.

No lions will use it. No wild animals will be on it.

None of them will be there.

Only people who have been set free will walk on it.

Those the Lord has saved will return to their land.

They will sing as they enter the city of Zion.

Joy that lasts forever

will be like beautiful crowns on their heads.

They will be filled with gladness and joy.

Sorrow and sighing will be gone.

Isaiah 35:3-11 (New International Reader's Version)

I want to share a song with you. I've heard it many times and it is another example of my hearts cry. The song is entitled, No Matter What.

May God bless you on your journey. May your hearts cry be:

I don't want anything on earth besides you.

My body and my heart may grow weak.

God you give me strength to my heart.

You are everything I will ever need.

Psalm 73:25-27

Barbara

Happy Birthday

2010-12-15T20:49:00.000-08:00

It's AJ's third birthday. What a blessing he is to so many people. We pray a special blessing on his birth Mom that made many sacrifices to bring him into this world.

AJ ate small amounts of frosting off of his cake and visited his new preschool that he will be starting in January. It was a good day for him.

Happy Birthday to SS also. Twenty one years filled with adventure. We are so glad you are a part of our family. God has truly blessed us.

Children are a blessing from the Lord

Barbara

We have lots to celebrate

2010-12-14T15:14:00.000-08:00

Praise be to the Lord God, the God of Israel,

who alone does marvelous deeds.

Praise be to his glorious name forever;

may the whole earth be filled with his glory.

Amen and Amen.

Psalm 72:18-19 (New International Version)

Great news at our home. Scott was hired (today) by an assisted living facility to provide activities and recreational programming. This is what he went to school for many years ago. It's been quite a while since he has worked outside of our home and we are all very excited.

Change, change, change, but it's all good.

Today is RJ's 13th birthday. Tomorrow is AJ's 3rd birthday and SS's 21st birthday so we have lots of celebrating to do.

Barbara

Back Home

2010-12-13T10:39:00.000-08:00

We are back home from the hospital (sooner than expected) as AJ did not have the procedure. It got really complicated and the doctors on his team felt they were not prepared to safely treat him. I am so thankful when this happens as I don't want anyone doing anything to his little body without having the confidence that they have adequately prepared. It's not our first time that we have been sent home for this reason - but this time we don't have a four hour drive back to our house.This is another reason why we moved to be closer to his medical providers and it was another day that I could rejoice.

I'll try to explain the complications (for those of you dealing with EB, you already know most of this). We realized that AJ needs to be intubated (a tube down his airway) in order to have the procedure. His strictures are in his upper esophagus and they need to put barium into his throat in order for the radiologist to see and open his esophagus. Since he will be under anesthesia he will not be able to swallow the barium, instead they will have to put in in via a large syringe. This is very close to his airway and there is a large risk that he will aspirate the barium into his lungs unless he is intubated. His airway will be protected if he is intubated - a pretty big deal.

Problem with AJ is that he has tracheomalacia (floppy upper airway) and last time he was intubated he could not be successfully extubated (tube taken out). He airway swelled, he could not breath on his own and he spent a few days on a ventilator; coming very close having a tracheostomy (a permanent airway opened in his trachea). Intubating a person with EB has a lot of risks even without trachamalygia.

The GI doctor tried to reach his airway doctor to discuss starting steroids and to see if the procedure could even be attempted today. Then we learned his airway doctor is out of the country. That was the final answer. We were not going to do a (somewhat elective) procedure without everyone on the team available. In another twist, they decided that they would also replace his G-J tube while he was under for this procedure. I understood their reasoning but they do not carry AJ's size tube and if it was replaced, we would have to return in two weeks, to go under anesthesia to have it replaced again.

One thing we discussed was planning to do the procedure and add to the list of things we want to accomplish. We would really like to look at his vocal cords and upper airway while under anesthesia. In the past he has had serious airway issues and we would like to have a good look to see if his airway is any further compromised. We would also like to know if his vocal cords are showing any additional signs of fusion. When we were in the otolaryngology (ear, nose, throat) office they put a scope down and were able to get a partial look. His last appointment showed some fusion and we would like to have a more accurate picture - perfect time while under anesthesia.

Lots of problems; Lots of reasons to wait; Lots of things to be thankful for. Aj was very happy to say goodbye and he is home, happily sleeping in his bed.

Thanks for your prayers, it's sweet to see how they were answered.

Barbara

Fun at the Christmas Sock Hop

2010-12-10T19:59:00.000-08:00

Tonight we relaxed and went to the YMCA Christmas Sock Hop. Tomorrow we expect to be snowed in (A massive winter storm is coming) It was a good way to get some exercise and have some fun as a family.

Dad and AJ at the craft table

KM dancing with Dad

The Girls and Santa

KM and KJ dancing

Dancing to YMCA; JR and Santa

AJ very excited about the frosting on his cookie

(even if he couldn't eat it)

The kids love dancing

(except maybe for RJ but JR is working on him)

Monday is the Day

2010-12-09T18:15:00.000-08:00

We just got word that Monday morning at 7:30 is set for AJ's esophageal dilatation. Thanks for your prayers.

Barbara

It's a Great Day

2010-12-09T14:24:00.000-08:00

Isn't it nice when things go well? Today was one of those days. We met the esophageal specialist and what a blessing; she understood and had worked with RDEB at Stanford in California. She knew more about EB than I did and I can't say that about most of AJ's physicians.

Dr G was more than ready to do the procedure and actually suggested that we do it today or tomorrow. We are not ready to jump that quickly (it means an overnight stay in the hospital) as I need to plan for the care of the other kids at home. We are shooting for early next week - Monday or Tuesday. She will be able to thread the balloon through his GJ tube and up into his esophagus. She will inflate the balloon at the stricture and gently force the esophagus to open up. She actually believes that he has two blockages and they will check with barium to make sure that everything is open before she removes the balloon. She said the actual opening takes about two minutes - but the prep for the procedure is longer. If his stricture is really tight, it is possible that she would only open it part way and go back in three weeks later - this would be safer than stressing his esophagus and risking a tear.

More good news; it will be done in Interventional Radiology and that is where he goes every six months for his GJ tube replacement. They know him well and are learning to properly care for his special needs. We are pleased and blessed.

AJ's 3rd Birthday is December 15th and if all goes as planned; he will eat ice cream again! Yes!

Last night he was awake in the middle of the night and choking on his saliva. We are so glad this will be taken care of and that it can be done locally (verses traveling to Cincinnati) since he will most likely need the procedure done every 3 months to a year. We decided that each time he is scheduled to have his GJ tube replacement (every six months) we will first check to see how his esophagus is doing and if he needs a dilatation; we will do them at the same time.

Thanks so much for your prayers. I will update again when I learn the date of the procedure.

Psalm 73:28 (New International Version, 2010)

But as for me, it is good to be near God.

I have made the Sovereign Lord my refuge;

I will tell of all your deeds.

Barbara

He Doesn't Change

2010-12-08T22:23:00.000-08:00

It's been a busy week and I've been slow to post. Not because I have little to say - rather I have had lots to do.

Little KJ celebrated her 11th birthday; she's not so little any more. We were able to attend the Guthrie Theatre, the Macy's Christmas Exhibit and the Hollidazzle Parade.

On the disability front: It seems that each time I get a handle on the many issues that disabilities bring into our lives; the issues change.

Just when I find something that starts clearing up AJ's yeast problem - Surprise - the next day it doesn't help at all. I am thankful that God has blessed me with a creative mind and friends that help me look for solutions outside the box of my limited thinking.

There are days that RR's medical challenges seem to be under control - Then Surprise - his needs change almost overnight. Last week we heard that RR's tests came back inconclusive. Then the next day we were told that they found a cyst on his brain. Now we are told that it may have been there for quite a while and we are waiting for the scans from the last MRI. I'm at peace just waiting. I can't do the emotional roller coaster of responding to every medical change. I just need to take it a day at a time (or better said a medical event at a time) and let God handle the results.

Scott's medical tests came back very encouraging and he received the go ahead to return to work. We are thankful for the good things that God is doing and yet wonder what God's purpose was in the years of debilitating health problems. I'm good with trusting God because I know He can be trusted - He doesn't change even when everything else does.

Numbers 23:19 (Contemporary English Version)

God is no mere human!

He doesn't tell lies

or change his mind.

God always keeps his promises.

EE and KM are struggling with the trauma they experienced early in their lives. It impacts their learning, their social interactions and their behavior. The challenges are daily but God's grace is sufficient. So many of the children have needs that only God knows the answers to. Their moods and emotions can change minute by minute and I'm so glad He doesn't change.

What a blessing to know that we don't control all the events around us. What a greater blessing to know that our God does.

Isaiah 46:9-10 (New International Reader's Version)

Remember what happened in the past.

Think about what took place long ago.

I am God. There is no other God.

I am God. There is no one like me.

Before something even happens,

I announce how it will end.

In fact, from times long ago

I announced what was still to come.

I say, "My plan will succeed.

I will do anything I want to do"

This week is another busy week. RR has additional medical appointments; though we really don't expect any major answers this soon. AJ will see the esophageal expert tomorrow to discuss his needed dilatation. We have removed his bandages around his upper chest and neck area in an attempt to dry his skin out and to prevent the yeast from having a moist environment to live in. This has reduced his pain significantly but he loses some of the protection that his bandages offer. He is not happy without his bandages but today was the first day in a long time that he did not cry out in pain and he did not require any pain medication. Two big things to be thankful for. Hopefully I will have some news to update after our appointments.

I'll leave you with a picture of him feeling much better - albeit looking a bit worse.

Barbara

God's good plan for disability

2010-11-28T12:44:00.000-08:00

It's been a fun few days. What a blessing to have KJ home from college. AJ has lots of crazy fun with her.

I had two interesting experiences this weekend. Both very different and both reminding me of God's good plan for disability.
1st experience: I heard an able bodied person say to another, "He is such a miserable person; you know he has been crippled and in a wheelchair since a young age". Wow, that statement struck me hard. Here was AJ, another young boy and an older man all sitting nearby in their wheelchairs. Were they miserable or bound for that? Does a disability ensure misery?
2nd experience; AJ wanted to watch an older man drive his wheelchair into his custom accessible van. The man was paralyzed and in a power chair like AJ's. It was pretty cool to see what technology offers and how the doors would open, the lift come down and then all back closed again. After the doors were closed and we were ready to leave, we noticed the bumper sticker on the back of the van. It said,

"Breaking my neck

Screwed my head on straight"

Psalm 119:71

Now who of the two men really understood God's plan for disability. Yes, the second! The man with the disability knew that God planned his disability for good. He understood God's word and was blessed by it. The first viewed disability as a source of misery. This is a common misconception of many because we do not look at it through the eyes and understanding of Jesus.

Psalm 119:71 (English Standard Version)

It is good for me that I was afflicted,

that I might learn your statutes.

Living a life separated from Jesus Christ is a sure way to misery. You can have health, riches and all that life has to offer and be the most miserable person. All of us need Christ to find joy amidst adversity.

On another note. Aj's esophagus is so narrow that he can not eat much at all. He has to spit everything back out. We are planning on calling the doctor tomorrow and talk about the plan for him. Today KJ, JR, AJ and I went out for breakfast. He could not even swallow a tiny, tiny piece of scrambled eggs. But...he did find something he could eat and he was so happy with it.

Can you guess the food?

Ummm, this is good

Why didn't you tell me about this before?

I can't believe it's butter!

Whipped butter to be exact. KJ was so grossed out. Hey, he was enjoying something that must have tasted good and it melted down his throat.

Have a great day,

Barbara

Thanksgiving and God’s Character

2010-11-24T09:40:00.000-08:00

Happy Thanksgiving Everyone!

I was thinking back to the days when my children would think of something that we were thankful for in association with the letters of the word Thanksgiving. It’s a simple game but it was one way of focusing on thankfulness rather than on our selfish desires.

As I thought about the things that I was thankful for this year, I was drawn to look deeper at the character of God, our heavenly father. Were it not for Him, I would have nothing to be thankful for. Here is my personal list of attributes that proclaim God as glorious.

T God is Truth

Psalm 119:160 (English Standard Version)

The sum of your word is truth,

and every one of your righteous rules endures forever

H God is Honest

Deuteronomy 32:4

(New International Reader's Version)
  He is the Rock. His works are perfect.
      All of his ways are right.
   He is faithful. He doesn't do anything wrong.
      He is honest and fair.

A God is Amazing

Revelation 15:3 (English Standard Version)

And they sing the song of Moses, the servant of God,

and the song of the Lamb, saying,
"Great and amazing are your deeds,
O Lord God the Almighty!
Just and true are your ways,
O King of the nations!

N God is Near

Psalm 34:18 (New American Standard Bible)

The LORD is near to the brokenhearted
And saves those who are crushed in spirit.

K God is Kind

Psalm 145:17 (Contemporary English Version)

Our LORD, everything you do

is kind and thoughtful

S God is a Shield

Psalm 91:4 (New International Reader's Version)

He will cover you with his wings.

Under the feathers of his wings you will find safety.
He is faithful. He will keep you safe like a shield or a tower.

G God is Good

Deuteronomy 32:4 (New International Version)

He is the Rock, his works are perfect,
and all his ways are just.
A faithful God who does no wrong,
upright and just is he.

I God’s is Immanuel (God is with us)

Matthew 1:23 (New International Version)

“The virgin will conceive and give birth to a son,

and they will call him Immanuel (which means “God with us”).

V God is Victorious

Habakkuk 3:18 (Amplified Bible)

Yet I will rejoice in the Lord;

I will exult in the victorious God of my salvation!

I God Does the Impossible

Luke 1:37 (New International Reader's Version)

Nothing is impossible with God.

N God's Love is Never Failing

Psalm 6:4 (New International Reader's Version

Lord, turn to me and help me.

Save me. Your love never fails.

G God is Gracious

Psalm 86:15 (English Standard Version)

But you, O Lord, are a God merciful and gracious,

slow to anger and abounding in steadfast love and faithfulness.

What better way to celebrate Thanksgiving than to focus our eyes on the awesome character of our God!

I’ll close with some silly bandaging pictures of AJ – don’t worry, his head is fine – he just wanted to have some fun.

Happy Thanksgiving,

Barbara

Yeast…not the baking kind

2010-11-20T16:41:00.000-08:00

AJ has a yeast infection on his skin. It’s his second in a few months. In reality, he probably never got over his last one. Every time we get close to him he smells like sour dough bread. I was never a big fan of sourdough bread but I’m less of a fan now. He continues with his bath everyday and we add salt to lessen the sting of the water on his open wounds. That may sound strange but it turns the water into saline solution. We also add vinegar to help with the infections. I need some ph strips to check the acidity of the water but have not found them in our local stores. If we can get the ph in the best possible range, it will work the best to help kill his infections. Thanks to Casey’s parents for the suggestion of a medication to use. We have started it and progress is being made. Here is a picture of AJ in his little bathtub.

This is after the screaming and arching his back in fear that the water will hurt. We have lots of toys and games but he is just not going to willingly step into that water. AJ is not a big talker but this week he has been big into using the words medicine and bandages. He wants pain relief and he wants to get his bandages back on quickly. Please pray for a quick and complete healing of the yeast infection.

What a blessing to know that God will meet AJ’s needs. We do not need to be anxious about his infection but instead we will make our request known to God.

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.

We have so much to be thankful for. God really is good!

Barbara

Weary and Finding Rest in Our Creator

2010-11-12T20:35:00.000-08:00

I’ll start with an update on some of our family. It’s not just AJ that takes medical center stage each week.

RR now has a firm diagnosis of Diabetes Insipidus. His kidneys are unable to conserve water as they perform their function of filtering blood. We still do not know what is causing the DI. He will have an MRI this week and we will wait a few months to learn the results of his genetic testing. He has started medication to help with the symptoms and we are hopeful for good results.

Scott has also undergone additional testing for serious health issues. He will have more tests done this week and we may have a firm diagnosis next Friday. I really don’t know what the impact of that will be, but we keep taking it a day at a time. I will post more when I know something.

We were excited to learn that there is an esophageal specialist at the local Mayo Clinic that has done dilatations on children with EB. It is really good news and an appointment is in the works. His G-J tube is still leaking but we have slowed down his feeds and that keeps more of his food in his intestines rather than running out the “leak” in his stomach. This puts him on his pump with a back pack of liquid food strapped to him for more than 20 hours a day but if it works without more surgical intervention – we will take it for now.

I picked up a book at the library this week. It is about caregiving. I figured I do enough caregiving that something might pertain to me. I was pleasantly surprised to find that the author was a Christian and he shared his experiences from a spiritual perspective.

2 Corinthians 12:10 (English Standard Version)

For the sake of Christ, then I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong.

Most Christians will agree with this verse – at least until our lives are really touched by pain and suffering. What it really means is that we give up our desire to exercise our control, our power and our choices. Each day caregiving, illness and disability brings changes and surprises. Caregiving specifically forces us to change the way we do things without any thought for ourselves. I will not run from what God has set before me but rather joyfully embrace what he is doing.

Philippians 2:3-5 (English Standard Version)

Do nothing from rivalry or conceit, but in humility count others more significant than yourselves. Let each of you look not only to his own interests, but also to the interests of others. Have this mind among yourselves, which is yours in Christ Jesus

You see; we are not the only ones to set something aside for the good of others.

Philippians 2:6-8 (New International Reader's Version)
In his very nature he was God. But he did not think that being equal with God was something he should hold on to. Instead, he made himself nothing. He took on the very nature of a servant. He was made in human form. He appeared as a man. He came down to the lowest level. He obeyed God completely, even though it led to his death. In fact, he died on a cross.

I’ve been slow to post this week as this really has been a time of waiting and resting. We are trusting God for his provision regardless of the future medical diagnosis that are given. God already knows and he has set the way before us. It is His yoke that I choose to carry and not my own.

Matthew 11:28-30 (New American Standard Bible)

Come to Me, all who are weary and heavy-laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and humble in heart, and you will find rest for your souls. For My yoke is easy and My burden is light.

I’ll close with a song that my daughter KJ shared with me this past week. Check it out.

As long as you are glorified by Mark Altrogge

Oh how I want ALL that God has for me. Let HIS Glory be displayed.

Barbara

Until we meet again...

2010-11-05T20:31:00.000-07:00

We just received word that little Elle’s journey with EB ended in the arms of Jesus. Elle had junctional EB, a form that is extremely fatal in the first year of life. She was at the University of Minnesota Hospital to take part in an experimental bone marrow transplant. She died from complications related to the transplant. Please pray for her family. It was just a few weeks ago that Bella also died from transplant complications. I cannot imagine the grief that their families carry in their hearts. Please pray for both them.

I will close with scripture that reminds us that God is the breath of our being.

Job 12:7-10 (New International Reader's Version)
But ask the animals what God does.
      They will teach you.
   Or ask the birds of the air.
      They will tell you.
  Or speak to the earth. It will teach you.
      Or let the fish of the ocean educate you.
  Are there any of those creatures that don't know
      what the powerful hand of the Lord has done?
  He holds the life of every creature in his hand.
      He controls the breath of every human being.

And that the number of our days is decided by him.

Job 14:5 (Contemporary English Version)

Our time on earth is brief;

the number of our days

is already decided by you.

Yet we are not alone, left abandoned. He alone is our comforter.

2 Corinthians 1:3-5 (New Living Translation)

All praise to God, the Father of our Lord Jesus Christ. God is our merciful Father and the source of all comfort. He comforts us in all our troubles so that we can comfort others. When they are troubled, we will be able to give them the same comfort God has given us. For the more we suffer for Christ, the more God will shower us with his comfort through Christ.

Goodnight,

Barbara

It's not me; It's Him.

2010-11-04T20:11:00.000-07:00

I love my kids and I love caring for them but I have grown tired of the saintly comments that well intentioned people share with me. I know they mean well but I am not a saint or super Mom, as some refer to me. Here is solid evidence of who I am:

I Timothy 1:16a (The Message) states, "Here's a word you can take to heart and depend on: Jesus Christ came into the world to save sinners. I'm proof - Public Sinner Number One - of someone who could never have made it apart from sheer mercy."

I have often been asked, "How do you do it? Caring for all those kids and dealing with AJ's physical needs on a daily basis?" The answer, "I don't." (read on)

Galatians 2:20 (New International Version) states, "I have been crucified with Christ and I no longer live, but Christ lives in me. The life I now live in the body, I live by faith in the Son of God, who loved me and gave himself for me."

Were it not for the life of Christ that lives in me; I could never do this. I could not love my kids with the unconditional love that Christ shows. I could not provide the care and devotion that they so desperately need.

Do I get tired? Yes!

Last week we had more than fifteen medical appointments.
My kids attend seven different schools and most all of them have special education plans that we are in the middle of “tweaking”.
AJ had his tube replacement, for which we are grateful that it went well. He still has some leakage but we are working on that.
My husband is struggling with some of his own physical problems and has started the process of multiple medical appointments looking for an answer.

Oh…so tired and weak, but…I stay on my feet and keep my sanity only by staying strong in Christ. It’s His strength, delivered by grace which gets me and the rest of my family through. The credit goes to Him.

2 Corinthians 12:9 (New International Reader's Version) encourages me by stating, "But he said to me, "My grace is all you need. My power is strongest when you are weak."

So I am very happy to brag about how weak I am. I want and need Christ's power to rest on me.

It's a new week...

AJ had a esophageal study done this week and we learned that his esophagus has a blockage, narrowing it to 3mm. This is not unusual in RDEB and we will be praying and watching to see when intervention is necessary. Eventually he will need a balloon dilatation where they intubate him and guide a deflated balloon into the area – inflate the balloon and open the area up. AJ does not have a good history of intubation so we are not excited about the prospect. The procedure also carries a risk of tearing his esophagus. For now, we will wait.
We also received word that AJ’s iron level is dropping again. Kids with RDEB often lose the ability to absorb nutrients due to scarring in their intestines. We will increase his iron again, with the hopes that he can maintain his level a bit longer this time.
Our son, RR, has had his own share of medical interventions this week. He has struggled for years with very unusual physical symptoms that no physician has ever found a cause for. This week his sodium was found to be extremely elevated which has resulted in a visit to a kidney specialist and tomorrow, an endocrinologist. In January, he will see a neurologist. After all of these visits and tests, we would be blessed to finally have a diagnosis and a plan for his care or treatment. Again, we will wait.

Thank you for your prayers and encouragement. Thank you also for recognizing me for who I really am; A sinner, saved by grace and now alive in Christ. May all the praise and glory go to Him.

Barbara

God Created Butterflies

2010-10-26T19:34:00.000-07:00

EB children are referred to as butterfly children because the fragility of the butterfly’s wings is much like the skin of a child with EB. The butterfly is also a beautiful creation. When I look at AJ as a butterfly child, I can’t miss his wounds and fragile skin but I also enjoy seeing the beautiful child that God created. Society looks so much on outward appearances but there is so much more to be seen.

Psalm 139:13-16 (New Living Translation) states,
You made all the delicate, inner parts of my body
      and knit me together in my mother’s womb.
Thank you for making me so wonderfully complex!
      Your workmanship is marvelous—how well I know it.
You watched me as I was being formed in utter seclusion,
      as I was woven together in the dark of the womb.
You saw me before I was born.
      Every day of my life was recorded in your book.
   Every moment was laid out
      before a single day had passed.

I believe God created AJ and sculpted him exactly the way He intended; EB included. After AJ was born a geneticist searched for the, “defect” responsible for AJ’s type of EB and he found what he was looking for. It is considered a defect in Type VII Collagen. That’s why AJ was given the diagnosis of RDEB. Different types of EB have different causes. I encourage you to consider that God had a plan and purpose in creating AJ with that missing Collagen. It wasn’t a mistake or some quirk in his development. I believe the Bible directs that God is our creator and it is only in Him that we live.

Acts 17:28 (New International Version) states, "For in him we live and move and have our being." As some of your own poets have said, "We are his offspring."

What a privilege to be the offspring of the Living God; created in His image.

I hope you will join me in my search of God’s word to bring encouragement and truth into our lives. I welcome your comments and questions. Tonight is an early to bed night as AJ will have his G-J tube replaced tomorrow. We are praying for a smooth tube change with as little damage to his skin as possible.

Barbara