Happy Easter

I hope everyone had a wonderful Easter.  

We were so blessed to attend church 

and worship our risen Savior.  

In the afternoon we had lunch with family

 and our traditional Easter egg hunt.  

AW brought home friends from college. 

 It was great to have them here to share in the celebration.  

I Corinthians 15:20-24

Christ really has been raised from the dead.  

He is the first of all those who will rise.  

Death came because of what a man did.  

Rising from the dead also comes because of what a man did.  

Because of Adam, all people die.  

So because of Christ, all will be made alive.  

But here is the order of events.  

Christ is the first of those who rise from the dead.  

When he comes back, those who belong to him will be raised.  

Then the end will come.  

Christ will destroy all rule, authority and power. 

He will hand over the kingdom to God the Father.  

The resurrection is a reality.  

If it were not true, our faith would be futile and all hope gone.

He is risen, He is risen indeed!

Barbara

Doctor, doctor

Dear Dr,

Today was our first appointment with you, our new urologist. AJ is always excited to meet his new doctors and it would have been nice if you had talked to him.  He kept talking to you but you seemed too preoccupied to listen.  I know it is hard to have a medical conversation when a four year old is continually trying to talk but had you taken the time to answer him, he would have quieted down.  You are a PEDIATRIC urologist; you must be used to children in your office.

I will admit that I was not thrilled that you had never heard of AJ's disorder.  It didn't build any confidence in me when you read his chart and kept trying to say Epidermolysis Bullosa but instead it came out, "Ep...i...deeeer...mlsis   Bu...ll....usa". I had hoped you would have read the chart prior to us coming but I do understand you are busy.

I really do Ok if a doctor states that they don't know about EB but are willing to learn.  I wish you had said that. Making a plan for AJ's care when you don't have any idea what medical problems EB causes; seems foolish. I wish you had asked questions.  You appeared surprised when I told you that we were not following your thrown together plan and we were not doing the tests you suggested.  What did you expect?  You still were ignoring AJ, who at this time was yelling, "Pee, Pee" louder and louder.  He wanted to tell you his troubles.  I had told him we were coming to visit a doctor that wanted to help.

You are the urology specialist but I am AJ's EB specialist. Today I have more confidence in the nameless residents that we would meet in the emergency room should AJ have a sudden urethra blockage. We have a long way to go in our medical working relationship.

We were in your office less than three to four minutes and suddenly you were finished.  You stated you were prepared to treat AJ appropriately should he have any emergent,serious, urology complication.  It's too bad I feel less prepared after meeting you.  I only hope you remember AJ and have an interest in reading about EB.

Dr, I'm glad to be back home.  Away from your office where you appear more of a threat to AJ's medical well being rather than a member of his care team.  I am thankful that AJ does not need a medical intervention today.  I am also thankful that I have met other doctors that appeared arrogant upon their first meeting AJ and then later studied his disorder and apologized for their unwillingness to listen to us. I still have hope for you.

Don't worry about AJ (though I have no idea why you would).  He is still happy.  Your lack of words with him did not mess with his day.  He even enjoyed the wait in your large waiting room. He especially enjoyed asking (loudly) if the men that walked up to the registration desk had problems with their "Pee Pee's" too.  When we left your office the nurses were extremely surprised that our appointment was over so quickly.  They gave AJ lots of dinosaur toys and stickers.  They knew that "Pediatric" means Kids!

Until we meet again (hopefully not for a long time)

Barbara and AJ

Looking Back at God's Provision

AJ's day went well.  His pain has decreased and we visited with the pediatrician today.  She agreed that he shows signs of a partially blocked urethra.  It could be blistering or strictures.  We hope it continues to get better on it's own. We are scheduled to see the pediatric urologist in two weeks. We would like to be prepared for any problems that might arise in the future.

AJ's foot is infected tonight.  It blistered last night into a blister that encased half of his foot.  We drained it and he soaked in a tub with vinegar.  I hoped that would take care of it but tonight the blister re-inflated and he has a lot of drainage and pain.  We treated it and he is going to sleep now.  Hopefully he will feel better in the morning.

Today I celebrated my 50th birthday.  It was a good day. Looking back I can see so much of God's planning and care in the details of my life.  I am so thankful for what He has done and I look forward to what He has in store for the future. Of this I can be sure...

Romans 8:38-40  (English Standard Version)

For I am sure that neither death nor life, nor angels nor rulers, nor things present, nor things to come, nor powers, 

nor height nor depth, nor anything else in all creation, 

will be able to separate us from the love of God 

in Christ Jesus our Lord.

Thank you so much for all of your prayers.  Tonight, as I type, KJ is struggling and very sick from a new medication she started.  We have stopped the medication and hopefully her pain will resolve and she will get some sleep.

I'll end with a picture of AJ and his Dad.  They both received matching sweatshirts from Scott's place of employment.  AJ was so excited to look like his Dad.

Barbara

 

Nice while it lasted

Normal was nice while it lasted.

Please pray for AJ as he is showing signs of his urethra closing. We have an appointment with the pediatrician tomorrow. If his symptoms worsen tonight we will head into the emergency room.

I will update later.

Thanks,

Barbara and AJ

Normal is a good thing!

We are feeling "normal" lately.  No big medical crisis and lots of fun activities with nice weather to match.  Here are the pics of what we have been doing.

We have a new teenager in the family. 

Congrats KM on turning 13!.  

She had a swim party that everyone loved, 

AJ is Up the Slide...

...And Down

No, he didn't go down standing up.

I was helping him get down without any more bumps 

so I took the picture late. 

Jackie spends her afternoons waiting

 for AJ to come home from school.  

She lays on the couch where she can watch 

out the window for his bus.  

These next pictures are especially posted 

for AJ's older sister, KJ and his older brother AF

Hint, hint...

AJ is trying out many different ways to wear his hat...

So that he picks the best one...

to wear to a Twins game...

Please, Please Please take me?  

I look so cute; come on, you cant resist my silly face!

This last picture shows the beautiful 

weather we have been having.

We seem to have jumped from winter 

to summer and missed spring.

The kids have been outside at every opportunity.

This is JR using her artistic ability on our cul-de-sac.

She and her friends from high school worked on it for a couple of days.  

We have the best looking street in town.  

For those wondering, 

Yes, I did teach her not to play in the street;

I guess art follows different rules.

We are thankful for the quiet times to rest 

and focus on our heavenly father.  

Philippians 4:8-10

Finally, brothers; whatever is true, whatever is honorable, 

whatever is just,whatever is pure, whatever is lovely, 

whatever is commendable, if there is any excellence, 

if there is anything worthy of praise, think about these things.

What you have learned and received 

and heard and seen in me, practice these

things, and the God of peace will be with you.

Barbara  

Blessed to be Leaving

We are getting discharged. I've had about all the TV I can handle - AJ could keep on watching but he is eager to escape too!

It was determined that the dilatation was too aggressive and that his esophagus and maybe even his stomach sustained too much damage.  He is going on Carafate.  That should coat his stomach (and esophagus) if I can get him to swallow it rather than putting it in his g-tube).  His bleeding has slowed down and when we check his stomach contents; it is mostly old blood.  The Carafate should protect and allow him to heal.

It's supposed to be almost 60 degrees today so we are planning on going home and walking to the park.

Thanks for your prayers and assistance.

Psalm 118:24

This is the day that the Lord has made; 

let us rejoice and be glad in it.  

Barbara and AJ

Back in the Hospital

Just a quick note to update you.  AJ is back in the hospital with internal bleeding.  They have ruled out his upper throat area so it appears that the bleeding is coming from his esophagus (which was dilated last Thursday).  Tomorrow we will discuss doing an endoscopy.  It carries the risk of causing more damage to his throat so for now we just wait.

Thanks for your prayers.  AJ is resting comfortably and I hope to sleep as well as possible on a bed in his room.

Barbara