Wednesday, December 29, 2010

Support, Support, Support

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.


Sunday, December 19, 2010

Our Christmas Letter to You

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 (10th grade). 

RR (10th grade), RJ (7th grade)   and EE (4th grade) are all in different Rochester schools.  KJ (6th grade) and KM (6th 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,

Thursday, December 16, 2010

Blessed or Cursed

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


Wednesday, December 15, 2010

Happy Birthday

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


Tuesday, December 14, 2010

We have lots to celebrate

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.


Monday, December 13, 2010

Back Home

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.


Friday, December 10, 2010

Fun at the Christmas Sock Hop

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)

Thursday, December 9, 2010

Monday is the Day

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


It's a Great Day

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.