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)

Success!

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

Ready to go to school.  

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

The great news about AJ's bath lift chair!

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

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

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

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

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

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

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

The steadfast love of the Lord never ceases,

his mercies never come to an end;

they are new every morning; great is your faithfulness.

Lamentations 3:21-23 (English Standard Version)

Blessings,

Barbara

Missing but still in Action

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

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

AJ's new roomate

AJ with his bigger and better headphones!  

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

need for high tech electronics :)

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

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

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

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

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

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

 God is Love, God is Love!  

Praise Him, Praise Him, All ye little children, 

God is Love, God is Love."

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

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

Thanks for following us on this journey.

Barbara

Happy Memorial Day and High School Graduation Day!

The pictures say it all!

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

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

We celebrated AW's graduation from high school.

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

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

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

For that we are thankful!

Barbara

Shoe Cobbler & Potty Trainer

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

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

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

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

Today we celebrated birthdays.  AW turned eighteen.

EE turned Ten - double digit!

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

Barbara

This world is not our home...

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

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

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

like his glorious body.

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

Barbara

Whom do we honor?

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

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

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

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

Life with EB is possible with Christ.  

Life without Christ is simply unbearable.

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

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

For this child I prayed and the Lord has granted me 

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

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

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

Happy Mother's Day,

Barbara

David vs Goliath

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


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


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


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


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

1 Samuel 17:47 (English Standard Version)

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

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

Barbara