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

Greetings,
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!)

Esther

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"

Kadi

Kim

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.

Barbara

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.  

Barbara

Home

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

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

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.

Barbara

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.

Barbara

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.

Barbara