Friday, December 28, 2012

Happy Thanksgiving, Happy Birthday, Merry Christmas and (almost) Happy New Year

Wow am I behind.  Here are some pictures to get you caught up.

At Thanksgiving we traveled to Colorado to visit
 Aaron and Emily. We had a great time.

We have been busy with birthdays; 
AJ turned 5
Kim turned 13 
Roman turned 15 
Julia turned 18 
Sahr turned 23 
and Joel turned 30

Have I forgotten anyone?

AJ celebrated his birthday and Icing Smiles 
generously made a Robot Cake for him.  
A special thanks to them.   

5 years old!  Wow!

Kim on her birthday.

Andy and Katie home from college

Christmas was filled with a lot of activities, 
crazy and quiet times with family.

Katie and AJ

Andy and Katie on the piano

Andy and AJ

Opening some gifts on Christmas Eve (the two girls look like something scary is going to jump out of the box!)


On Christmas Eve, AJ sprinkled 
magic reindeer dust on the snow 
so that Santa could find our house

I will share one little story; on Christmas morning AJ looked very sad.  It was time to open gifts and he didn't want to do it.  We asked him what was wrong.  He stated that Christmas was going to be over after he opened gifts and that Katie had told him that she would be going back to college after Christmas.  He didn't want her to leave so he figured that if he didn't open gifts, Katie would stay.  We had to explain to him that she was not leaving that day.  He could open his gifts and she would still spend the week with us.

Christmas morning

Andy shows AJ how to really get excited

Katie gives Andy "the look"



AJ has loved his time playing in the snow with Katie.  He was especially excited to find Spider Man boots that did not hurt his feet and that blinked lights with every step.  

Aj has been fairly healthy.  He had a few infections that needed treating with antibiotics but he has done well.  He has had some issues with his heart and we are doing some extra testing to see if or what the problem might be.  It seems to be something that comes and goes but Mayo has caught the problem twice now, so we will look a little harder to make sure he is doing Ok.  He had a lot of tests in early December and he shows some difficulty with absorbing all of his nutrition (common with EB) but otherwise he has had an excellent year. We counted four hospitalizations this year.  Not bad but hoping we can do better in 2013.

Thank you to all of those that checked in to see how we were doing.  We are so thankful for all that God has provided for us.  We have so many special people in our lives: family, friends, church family, medical and school community.   Thank you for being a part of AJ's journey.  We are especially thankful for the gift of Jesus and all that He means to us.  Without Him, this journey would only be filled with pain.


Friday, November 16, 2012

I'm Just a Scaredy Cat! But Jesus is My Superhero!

I would like to share with you my thoughts and the meditations of my heart that originate from God's word.

God has a plan for those that are born with a disability and those that become disabled in this life.  God's word tells me that God plans for and allows disabilities.

Exodus 4:11
Then the Lord said to him, "Who has made man's mouth?  
Who makes him mute, or deaf, or seeing, or blind?  
Is it not I, the Lord?

Disability brings intense suffering.  It can be hard to understand how God can design something that brings such suffering.  I do know that God has an understanding and mind that is not like ours.  We are finite, he is infinite in his understanding.

Isaiah 55:8
"My thoughts are not like your thoughts.  
And your ways are not like my ways," announces the Lord.  

Epidermolysis Bullosa is just one of many physical and mental conditions that results in intense suffering. Why would God do this?  Why would he allow such suffering?  We can get some insight from the following scriptures.

John 9:1-3
As Jesus went along, he saw a man who was blind.  He had been blind since he was born.  Jesus disciples asked him, "Rabbi, who sinned?  Was this man born blind because he sinned?  Or did his parents sin?"  "It isn't because this man sinned," said Jesus.  "It isn't because his parents sinned.  This happened so that God's work 
could be shown in his life." 

How can this be?  Isn't suffering the result of sin?  Yes, Suffering is the result of sin!  Without sin there would be no suffering.  Jesus is not saying here that suffering is not the cause of sin.  We live in a world that is filled with sin.  When sin entered the world: suffering  and death entered. 

Romans 5:12
Therefore, just as sin entered the world through one man, and death through sin, 
and in this way death came to all people, because all sinned.

In John 9:1-3, Jesus is saying that specific sins do not cause specific disabilities.  There was no, one person, to blame for this man's blindness.  Sin does cause disability (and death, as seen in Romans 5:12) but Jesus went on to answer even more than just the question of the root cause.  He tells us the purpose of this man's blindness.  He states, "This happened so that God's work could be shown in his life." 

How can this be accomplished?  How can God's work be shown in the lives of those with disabilities.  I believe in two ways.  First in divine healing.  I do believe that God can heal those that are sick and suffering.  If we finish reading the remaining part of the story, told in the book of John, we will see how Jesus heals the blind man.  

John 9:4-7
As long as it is day, we must do the works of him who sent me.  Night is coming, when no one can work.  While I am in the world, I am the light of the world."  After saying this, he spit on the ground, made some mud with the saliva, and put it on the man's eyes.  "Go," he told him, "wash in the Pool of Siloam."  So the man went and washed, 
and came home seeing.  

Jesus divinely healed the man.  He showed the greatness and power that only God holds.  If you continue to read in John 9, you will see that the religious leaders did not want to acknowledge that Jesus healed the man.  They tried to claim that he was never blind to begin with; that this was a different man.  After the man's parents arrived and confirmed that this indeed was their son that was born blind, the religious leaders demanded to know how he was made to see.  The man then correctly gives the glory to God. 

John 9: 33 
 "If this man had not come from God, he could do nothing."

God divinely healed this man and I believe He still can heal today.  While Jesus walked this earth, there are many accounts of his healing the sick.  Often the Bible states that he healed ALL of them.
Matthew 4:24
News about him spread all over Syria.  People brought to him all who were ill with different kinds of sicknesses.  Some were suffering great pain.  Others were controlled by demons.  Some were shaking wildly.  Others couldn't move at all.  And Jesus healed all of them. 

I will admit that we don't see these types of healing anymore.  Something bigger than physical healing is soon to happen in Jesus ministry.  He hints at it in the following verses.  

John 9:4-5
"While it is still day, we must do the work of the 
One who sent me.  
Night is coming. Then no one can work.  
While I am in the world, I am the light of the world." 

We have seen Jesus's goodness in physical and mental healing but now He shows his goodness in an even greater way.  You see after he healed those that were sick, Jesus took on the ultimate suffering through his death.  Not only did he die a physical death on a cross, but he took upon him, the sins of the world and all of the suffering that came with that sin.  

2 Corinthians 5:21
Christ didn't have any sin.  
But God made him become sin for us.  
So we can be made right with God 
because of what Christ has done for us. 

Don't miss this.  This is so important.  Christ did this for us so that we can be made right with God.  We no longer have to be ashamed or guilt ridden.  Christ paid the price for our sin.  He did it with his own life. Our sinless God, became sin so that we would not have to suffer!  What?  Suffering has not ended!  You are correct.  Suffering has not ended but it will...

Revelation 21:4
"He will wipe every tear from their eyes, and there will be no more death or sorrow or crying or pain.  All these thing are gone forever."

Remember, the purpose of suffering is to show how great our God is; his works, his awesomeness  his power and his strength.  We have seen how this was shown in divine healing but now, it can be shown in our lives regardless of the level of pain we are experiencing.  One way is in our expression of our hope for the future:

Romans 8:23-25
We believers also groan, even though we have the Holy Spirit within us as a foretaste of future glory, for we long for our bodies to be released from sin and suffering.  We, too, wait with eager hope for the day when God will give us our full rights as his adopted children, including the new bodies he has promised us.  We were given this hope when we were saved.  (If we already have something, we don't need to hope for it.  But if we look forward to something we don't yet have, we must wait patiently and confidently.)

There is another example of God's work shown in the lives of the disabled and suffering.  It is when the physical and emotional pain of the disability strengthens to the point of consuming us, but we are not consumed.  How?  Even in the most horrific pain, Christ is there and he provides the strength and ability to endure the pain.  

2 Corinthisans 12:9 
My grace is sufficient for you, 
for my power is made perfect in weakness.  

God may not show his power by healing but he does provide the ability for us to endure and to walk through the pain.  His power is what is made known when we are weak.  His works are made known in our suffering.  

To quote AJ, "I am just a Scaredy Cat but Jesus is my Superhero."  His statement may seem insignificant in the face of your pain today but for AJ it's a child like faith where he finds God's strength in his weakness.  

Thanks for listening and may God give you the eyes to see his works that you may accept his death and suffering, finding His strength in your pain today.

2 Corinthians 4:17-18
For our present troubles are small and won't last very long.  Yest they produce for us a glory that vastly outweighs them and will last forever!  So we don't look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen.  For the things we see now will soon be gone, but the things we cannot see will last forever.  


Saturday, October 27, 2012


We are home!  AJ was discharged late Thursday.  He had a hard time adjusting at first but is now pretty happy to be back in his own space.  Thanks to those that brought him surprises.  He was especially excited to see his siblings, Katie and Andy, as they drove down from the cities for a visit.

Last night he started talking more.  He doesn't want to open his mouth often because he lost the skin off of his lips during the procedure.  They keep trying to heal shut so we put lots of Vaseline on them.  I know they hurt when he pulls them apart but he has to keep doing it.  He brought me his pain scale picture and showed me that his pain level had come down significantly.  He had a big smile on his face.  We are still giving pain medication every four hours and he is on an antibiotic.

I am so thankful that he is this far past the actual surgery. Please keep praying that his oral tissues heal without any strictures.  We won't know for a while if he will have any problems with this.  He has started to eat a few things that are very soft and in very small amounts.  This is a time to be especially thankful for his gtube as it allows us to keep him well fed and hydrated.  He can get all of his pain medication without having to force him to swallow anything.  

Thanks again.  Your support is so appreciated.

We give thanks to God always for all of you, constantly mentioning you in our prayers, remembering before our God and Father you work of faith and labor of love and steadfastness of hope in our Lord Jesus Christ.

I Thessalonians 1:2,3 (ESV)

Barbara and AJ

Thursday, October 25, 2012

Star War Legos

The weather is dreary and I read in the news that it may change to snow and 20 degree wind chills.  Ugh.  What a nice morning it is; inside that is.  AJ is talking and feeling better.  We even got a smile.

Last evening Scott came to visit and AJ showed him a little card that said he wanted to play.  (Prior to surgery, we had made up cards with pictures so that he could tell us what he needed/wanted)  Problem was we could not figure out what he wanted to play with.  We guessed and guessed until it looked like a game of charades.  Finally, out of exasperation, AJ spoke.  I did not expect this on his day of surgery.  We had a terrible time making it out and he had to repeat it multiple times.  "Star War Legos, he blurted out!"  We did not expect that request and we didn't have any for him.  I had forgotten that the last time he was in the hospital Scott had surprised him with a small little star wars lego set.  Apparently he had not forgotten and was expecting it again.  The hospital searched for legos and eventually found some but no star wars lego people.  Oh well, it was so good to hear him talk.

AJ's bleeding has completely stopped and the resident doctor thinks we will go home today.  We need his ENT to see him before we can actually leave and that usually means much later in the day.  We are happy for the good news.  His doctor said we will not know, for up to three months, if he avoids the more serious complication of nasopharyngeal stenosis (I'm not even going to bother to explain unless it becomes something we later deal with).  We will take it a day at a time and keep trusting God for the grace he provides new each day.

Thanks so much for praying for AJ and a special thanks to all those that offered to help with the important details of our other family members.

It is a good day!

Sing and make music from your heart to the Lord, always giving thanks to God the Father for everything, in the name of our Lord Jesus Christ.
Ephesians 5-19-20

Barbara and AJ

Wednesday, October 24, 2012

Out of surgery

AJ is out of surgery.  His airway looked good in the scope.  He did have some extra bleeding but she said he had a lot of blood blisters in his mouth and throat before starting the procedure.  We are in the PICU and they will watch to make sure he does not have an airway problem.  He is miserable.  I just want the next 48 hours to fly by.

Thanks for your prayers.


In Surgery

AJ is in surgery now.  I am very much at peace about this.  They have finished the bronchoscopy where they check his airway for EB damage and they are starting the tonsils and adenoids.


Wednesday, October 17, 2012

Surgery Next Week

Hello Everyone,
Sorry for the absence but we have just been enjoying each day with AJ healthy.  It has been a good month with many fun days.  AJ has been free from infection, his gtube site looks great and he is happy.  His feet are pretty sore and he has resorted to wearing large socks instead of shoes but if that makes him comfortable we are fine with it.

Today we met with the ENT doctor.  We love her.  She takes such good care of AJ and she has experience with kids with EB.  After talking with her we have decided to have AJ's tonsils removed.  They are very large and are causing sleep apnea.  Having a small airway to begin with, the tonsils only make breathing more difficult. He has had strep throat and infections that have attacked his skin and caused permanent wounds.  We would likely prevent this from happening again. Having this surgery now will be easier on him than waiting until he is older.

Ok, now you hear what I keep telling myself as to why we have made this decision.  I know we need to do this but I don't want to put AJ through it.  It's very hard and I am dragging myself to this point.  I am praying for a smooth procedure but his doctor has clearly laid out the risks.  Because AJ's body scars so easily and openings want to close (think esophagus, airway, intestines, urethra  etc) his throat closing shut is a major risk.  His ENT said it is the worst problem that could be faced.  When there are raw areas the tendency is for them to adhere together.  She said it would be three months post surgery before we will be assured that the risk has passed.  If the area should scar together, AJ would require a tracheotomy.  That is hard.  We have been to that point before and AJ pulled through.  I don't like that looming over us again.  I know I can handle the cares for a trach but I know how hard it would be on AJ's tender heart and emotions. So...we will lay it at God's feet where it belongs.

As a secondary procedure she may take AJ's adenoids out but she will determine the risk of doing so once she has removed the tonsils.  She will also do an endoscopy of his airway to determine any damage due to his EB.

Next Wednesday, October 24th is the surgery date.  He will stay in the pediatric intensive care unit after the procedure.  I don't know how long he will be in the hospital.  I am hoping for no more than three days but I know to be prepared for more. We so covet your prayers.  I know God is present and working in AJ's life.  I can trust God with his plans for AJ.

On a different note, I am struggling with where to have my other children stay while I am gone.  I have three "almost" teen girls that I home school and I need to find a place for them to go or someone to come to my home.  Please pray that it will all work out without too much of an ordeal.

Thank you again for reading our blog and for caring so much for AJ.


Sunday, September 16, 2012

Aliens or Angels

We are home.  AJ is happy but tired.  

Today at the hospital, the operating rooms were super busy as they had a large number of serious trauma patients.  AJ's doctor finally decided to use a procedure room in the pediatric intensive care unit.  They would not be able to use gas to put him to sleep but instead would use conscious sedation.  The medication would take care of the pain, cause AJ to be very relaxed and would also leave him with no memory of the event as it causes amnesia.  They took him in and tried to get an IV and were unsuccessful.  Then they used a medication to relax him and followed up with two injections to really knock him out.  The doctor said it may cause hallucinations.  We waited...waited and AJ just kept looking at us.  So they doubled all of the meds.  Then AJ began staring at me with huge eyes and kept repeating over and over, "Mama?  Mama?  He must have said my name a hundred times.  When they did the procedure to open his stoma he screamed in terrible pain and shouted at the doctors to leave him alone and that he wanted to go home.  Poor guy.  When it was over he continued to look at me, repeating, "Mama?  Mama?  Then he fell asleep.

I was so thankful that he would not remember it.  When he woke up he asked where we were and why.  I told him that he had to have his g-tube replaced and that we were in the hospital.  He was good with that and was even more excited when he heard we were going home.

On the way home AJ asked where I was when he told the doctors to leave him alone and that he wanted to go home. (Clearly he remembered some of this)  I told him I stayed with him the entire time.  He said, "No, I didn't see you but I saw an alien and it had five eyes and two mouths"  He said he watched the doctors working on his tube and it hurt really bad.  The Alien stayed the whole time watching him.  AJ thought that was pretty cool because the Alien looked like me.  He had an alien for a Mom!

Now you have to realize that some kids see angels when they are sick.  Maybe they are real sometimes and maybe other times they are hallucinations.  AJ loves aliens.  An angel would not have been a big deal.  So...God is good all the time...either he made me into an Alien creature just long enough to get AJ through his procedure or he provided some great medications so that AJ could have a great hallucination.  Either way; AJ loved it.  All is good.


Peacefully Sleeping

AJ's tube is in place and he is sleeping so peacefully.  It was not an easy procedure and it involved more than double the medication it normally took to sedate him.  It will take him a while to sleep this off.  They want us to stay another night but I am hoping we can go home.

 He kept asking me, "Please Momma, I want to go home"  Soon we will little man, soon we will!

Thanks for praying,

Barbara and AJ

In the hospital

Sorry for the long delay.  We have been very busy in fun ways but right now AJ is in the hospital.  He was having a great time with his sister, Katie, when he fell and pulled out his G-tube.  His tube is very difficult to replace and we could not get it in.  We went to a local hospital in Minneapolis since we were not near our home.  The doctors were unwilling to do anything and they made AJ wait four hours before agreeing to help put his tube back in.  As expected and as I had warned them many times, his tube site had closed.  We are back down at Mayo as he spent the night waiting to go to the OR this morning.  Due to the lack of fluids he is constipated (also not a surprise) and is vomiting (happens with constipation).  Hopefully he will get to the OR soon so that he can get his medication to get his intestines moving.  Patience is the key.  He is watching movies but not feeling well at all.  Thanks for your prayers for AJ.  Hopefully I can update soon with some good news.  AJ is much happier to be back at Mayo and so am I!

Monday, August 6, 2012

EB Conference

We had a wonderful time at the EB conference in Florida and we would like to share with you our adventures.  

Please ignore all the formatting errors in this post.  I am trying to post a lot of pictures and the site doesn't want to work correctly.  It's late and I'm not going to fight it.  

We were able to fly to Orlando, thanks to the fact that airline prices dropped to the point that it was very close to the cost of driving.  AJ loves to fly and loves turbulence even more (me not so much).

The conference was held at the 
Gaylord Palms Convention Center.

We had a very nice room overlooking one of the large interior
 climate controlled areas.

This is the daytime view from our balcony. 

This is the evening view

AJ can show you that they even had live alligators!

The conference went beyond our expectations.  DEBRA had top researchers and medical specialists.  We heard about protein and gene replacement therapies that will soon begin human trials.  They had sessions on EB related surgeries, eye involvement, bone and anemia problems.  We had the opportunity to talk with a Ear, Nose, Throat specialist that recommended that AJ have his tonsils out.  We really didn’t want to have that information, but in the long range picture we understand why it would be a good idea.  We also came home with the much needed information on new bandage technology to help with healing AJ’s wounds that he has had since birth.  Debra provided some of our meals and allowed us time to talk with and encourage other families living with EB.This is Katie at the conference table.  She and Kim were a great help in allowing me to attend the conference while they entertained  AJ.

AJ was able to spend time with other children with EB.  
His first comment that he made when seeing another child in bandages was,
 “Hey, he looks like me!”

The hotel brought in Disney Characters to meet the families.  
Here is AJ and Kim with Shrek and Fiona.

Each night AJ loved to swim in the splash pool.  It started with a Disney splash party with the Madagascar characters.  The pool had a huge media screen and after the party they played a Disney Movie.  AJ loved sitting in the water while watching a movie.  


One of the conference sponsors provided us with an evening trip to Planet Hollywood for dinner.  
After dinner we were treated to, “ La Nouba”  with Cirque du Soleil.  It was an incredible show and a great ending to the conference.

After the conference we took AJ to Disney World to meet Mickey Mouse.  This is something he had been talking about for six months.  What we did not expect was to meet ALL of the Disney Characters.  Shortly after we arrived, the Disney Staff invited AJ to a private, “meet and greet”.  Needless to say, AJ was overwhelmed.  

After the Character meeting AJ went on the rides.  
(Wow did he enjoy them)  

Disney was very kind to AJ.  They shortened his wait for rides so that he did not have to spend a lot of time in the heat.  Between the air conditioned areas and his cooling vest he did very well.  In fact he just kept going and going.  Our last stop at Disney was to say goodbye to Mickey Mouse.

Our next stop was a visit to Rick and Martha’s home.  Their daughter, Emily is married to our son Aaron.  We spent a great day with them.  We visited Tarpoon Springs and we enjoyed some shopping before taking a boat ride into the Gulf of Mexico.  The boat stopped on an island and we went out in search of shells. 

After an evening of swimming, visiting and a good night’s sleep, the time came to say goodbye and head back to Minnesota.  We left Rick and Martha’s home and drove down to Clearwater Beach.  Kim and Katie took a quick walk on the beach while AJ and I visited the pharmacy.  

AJ struggled with extreme car sickness and we went out in search of medication.  It turned out to be a very good decision that we flew to Florida instead of traveling by car.  Especially now that it is apparent that he has a serious skin infection.  I doubt we would have made it home without visiting or staying in a strange hospital.

 Katie wanted to make a quick stop at Chick-fil-A. 
By then AJ was feeling better and he enjoyed some time in the play area.

 Thanks to many of you that donated funds to make our trip possible.  We all enjoyed the conference immensely.  AJ had the opportunity to experience Disney World and thanks to the Glombs we were able to experience another part of Florida.
Barbara and AJ  T