Friday, April 11, 2014

every day

Every day I think about Deacon and what his future holds.  Every day I read something about Duchenne Muscular Dystrophy. Every day I cry or am on the verge of tears.  Every day I ask God why.

My husband said it best a few days ago while we were watching another boys story with DMD.  He said that we watch someone else's story be told. We watch them suffer and grieve. We pray for them always and in some cases help support them.  But now it is us. This is our reality. All of the stories that we are reading about little boys with DMD.  That is our story.  Our son will die.  We will be the parents trying to figure out how to go on without one of their children.  Trying to teach our other children how to be brave in a tragic situation and to let God's love shine through us in our darkest hours.  This is hard.  

Every day I hug this sweet little boy. Every day I thank God for him. Every day I am reminded that we don't have many more days.


   

Thursday, April 3, 2014

the call came

Finally on Tuesday, the call came in that the neurologist had received the DNA test results.  We were able to get in on Wednesday morning.  48 days after hearing the words "I think Deacon needs to be tested for Muscular Dystrophy" the results did confirm that our sweet boy has Duchennes Muscular Dystrophy.  His is a deletion of Exome 19.

Right now he is too young for any clinical trials and there aren't any clinical trials being processed for his deletion.  So we wait. We wait for him to turn 7. We wait for more trials to be developed and started.

We do have several things that we can do and are doing for him now to keep him strong.  That is the goal is to keep him active and walking and as strong as he can be.  Stretching, night splints, physical therapy and medicine will help us do this.  He is such an active little guy that he will be his own physical therapy for a while.  Climbing on the play equipment at school is a great way for him to keep his muscles going.

This will continue to be a place for me to journal and to get my emotions out.  All we can do right now is pray that a cure will be found before it is too late for Deacon.  We appreciate your prayers.

                                                                         My Boys

Saturday, March 22, 2014

not the timing we wanted

When we visited with the neurologist, she said that the dan blood test would take 2-3 weeks. What she didn't tell us is that we needed to pay for the blood test before the lab would start working on it.  So we were a good week in before we paid.  When Ryan talked to the lab people, a timeline was not given so we were under the assumption that we would still hear something in 2-3 weeks.

Well, being the inpatient person that I am, we were 1 day away from 3 weeks.  We were about to leave for Spring Break so I called to see if the doctor had heard anything.  Her nurse said no but she would call and heck.  I heard back from the nurse and she said that the results would not be ready until March 28th.  That was a good 2 weeks later than we had expected.

At first I though maybe the lab was backed up. Then I thought that maybe something was wrong with the blood work or maybe they weren't able to figure out what MD Deacon has.  So I called the lab myself.  I talked to the nicest person. I explained our situation and she said she would figure it out!  When she came back on the line, she said that payment wasn't made until February 27th so it would be up to 4 weeks after that.  She then told us that payment had to be made before the lab would start the testing.  Huh, that would have been great to know when we were at the doctor's office. We would have made calling a little bit more of a priority.

Lesson learned… ask if payment needs to be made before whatever test will be run!  All of the other medical things we have done, we get a bill in the mail afterward.  Oh well.  We are just 6 days away from hearing something.

Monday, March 10, 2014

more from her

I went in prepared with a list full of questions for the neurologist.  I went through them one by one and she answered them all. Diet, exercise, medicine, growing, physical therapy, school, cognitive abilities are just some of the things that we had wondered about.

We also asked the hard question. Is the life expectancy that we had read online really true.  Well, this she wasn't sure about.  They have recently started treating kids with Muscular Dystrophy with steroids.  All of studies that were done that have been published to determine the life expectancy were done before steroid treatment began. So, she doesn't know really.  I would love to hear that the life expectancy will change.  I would be so grateful to know that my boy would live past his teenage years.


Sunday, March 9, 2014

She was great

We visited the neurologist just 6 days after hearing the words "I think we need to have Deacon tested for Muscular Dystrophy."  It feels like those days took forever but 6 days really isn't that long.  We headed to OKC and nervously waited to go back to the doctor's office.

It didn't take long before we were visiting with her.  She was kind and knowledgeable. She asked us about Deacon's story and I told all that I could.  She asked us why we were there, we shared what the physical therapist had said.  She asked us what we had noticed since we had been home, we told her.  She had Deacon do a few things like get up off the floor, walk, run, squeeze her fingers, all pretty basic.

Then she said that she agreed with us.  She does think that Deacon has Muscular Dystrophy and she thinks he has Duchenne (about 70%).  She did say that she was surprised with how strong he was.  She said that with his CK levels being so high, she did not expect him to be so mobile.  That leaves 30% that she is not sure what kind of Muscular Dystrophy he has.

So we did a blood test. This test will scan his DNA and see what exactly his genes look like and what exactly is wrong.  This test will take 2-3 weeks to get back.  As of today, it has been 2 weeks and 3 days.  Hopefully, we will hear in the next few days what is wrong with our sweet boy.


Thursday, March 6, 2014

levels

We went to the hospital on Monday late morning to get a CK blood test. This blood test measures the Creatine Kinase level.  Creatine Kinase is an enzyme that is released by the muscles after they are broken down.  Everyone has CK in their blood because everyone has normal muscle breakdown each day BUT normal people can rebuild their muscles.  So after much screaming that could be heard by my older children in the waiting room, Deacon's blood was taken and off it went to the lab.

The call came on Monday afternoon.  What seemed to be so many hours later ended up being around 4.  Our pediatrician said that Deacon's CK levels were at 38,000.  Normal level is 75-230.  She would refer us to a Neurologist immediately so that we could see what the next steps were.

We knew then that for sure something was wrong with Dea.  We knew that it was probably Duchenne Muscular Dystrophy.  Duchenne Muscular Dystrophy only affects boys. Most boys are diagnosed around ages 3-6.  Most boys are in a wheelchair sometime around ages 9-12. Most boys won't live past their late teens/early 20s.  Talk about a punch in the gut.

But Deacon had gotten so much stronger in the year plus he has been home.  He is doing things now that he could physically when we first got him.  He can ride his bike. He is so active.

So the next step is the neurologist.

Sunday, March 2, 2014

Today has been a hard day. I made it through worship without crying.  Our church songs speak so much to me.  I feel the songs down deep and tears fill my eyes on a regular basis.   I was proud that I didn't cry today, little did I know what was to come.

Our church is going through 1 Peter.  Today's message was changed up due to the bad weather and a particularly heavy topic of husband and wives was pushed back to next Sunday.  So today, our pastor discussed Peter in John 21. It feels like the message was focused on me.

"…do you love me more than these?" Jesus said "Yes, Lord, " Peter replied "you know I love you."  Jim discussed how easy it is to say "of course I love you Jesus" when life is easy and everything is fine.  But then something unexpected happens.  Pain is real and it transforms your perspective so violently.  So today as I sat and listened, I thought to myself, how many times I have said, "of course, I love you Lord" and carried on because everything is fine. Life is fine. Life is good.  Family is good. Kids are healthy. Marriage is good.  Food is on our table.  We have a roof over our head.  God, of course, I love you.

Then life hits you in the face.  Tears start to fall.  Pain invades my thoughts and fills my heart with such sadness.  I question God to why this has to happen.  Why must we go through this? Why must Deacon suffer and die before we think he should?  God, of course, I love you. But now my faith will take on a different meaning.  My faith is more real in the fact that I can't understand why God would choose to do this to our family, our church, our community.  But He has to have a reason.  God has to have a reason right?

God I look to You, I won’t be overwhelmed 
Give me vision to see things like You do 
God I look to You, You’re where my help comes from 
Give me wisdom; You know just what to do 

I am overwhelmed. I do want to see so that I can understand. I can't fix this. I can't fix my son.  There is  no treatment or surgery that can make him better.   He will die much sooner than we ever thought. He won't get to do most things healthy kids get to do.  I won't be overwhelmed.   God, of course, I love you.  But I am overwhelmed.  Tears fall.