Saturday, December 24, 2011

Merry Christmas

Merry Christmas Everyone,

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

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

He really enjoyed his racing "Cars"

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

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

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

For our 1st snowfall AJ and Dad built "Frosty"  
Too bad the weather warmed up and AJ woke up one morning to Frosty's puddle.

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

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

Merry Christmas, 


Saturday, November 19, 2011

Infection returns

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


Tuesday, November 15, 2011

Scripture to Encourage You!

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

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

Be encouraged.


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 

Tuesday, November 8, 2011

Discharge Day

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

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

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

2 Corinthians 2:14
Thanks be to God, who in Christ always leads us 
in triumphal procession, and through us spreads 
the fragrance of the knowledge of him everywhere.

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

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




Monday, November 7, 2011

Staying longer

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

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

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

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


Barbara and AJ

Sunday, November 6, 2011

In The Hospital

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

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

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

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

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


Barbara and AJ

Wednesday, October 26, 2011

EB Awareness Week

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,


Sunday, October 16, 2011

Welcome Home Jackie

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.


Thursday, October 13, 2011

School begins!

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.  


Thursday, September 29, 2011

Summer is over; I can start blogging again!

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)


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)



Sunday, July 24, 2011

Missing but still in Action

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.


Monday, May 30, 2011

Happy Memorial Day and High School Graduation Day!

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!


Saturday, May 21, 2011

Shoe Cobbler & Potty Trainer

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!