Expectations & Prayers

Friday, July 4, 2014

Tomorrow we leave for Houston.  A day we've prayerfully anticipated.  Alli's Pulmonologist grounded her due to the significant risk of a pulmonary hypertension rebound.  Luckily, we learned from our recent beach trip to Florida, she handles long car rides very well.  Once John learned pulmo said she couldn't fly, he decided he would come along.  It's better for her health + the whole crew goes = a win/win

Someone recently asked me what my expectations were for Alli's stem cell treatment.  

My response...

None.

The friend was shocked.  I'm usually a pretty positive person, most especially in her treatments plans.  I claim positivity, or belief as I like to call it, as one of the reasons Alli is here today.  

But here's the deal.  I can't let me flesh go there this time.  

I've read the blogs.  I've connected with families who have seen amazing results with stem cell treatments in other countries.  I've committed thousands of hours to peer reviewed studies and research and believe wholeheartedly that this is where medicine is going.  That there is truly something there.  That in my lifetime, the science will be perfected enough, Cerebral Palsy (at least in its more severe forms) will be a thing of the past.  

I really want to think that this one treatment will kick start her brain.  I'm at least hopeful for that. 

But I'm protecting my heart.  There is a chance Alli is the placebo.  A fact we won't find out for an entire year. 

So I don't think there is pessimism or unbelief in my response.   

As a parent, I don't even want to consider a lifetime of disability and chronic disease for our child.  Give it to me Lord, but not my child.  So far, that hasn't been the hand dealt.  I know that in a blink of an eye, God can intervene and heal her brain damage. I know that.  I've seen His miraculous healing walk into a room and take my dying child and give her life.  A thousand times.  When medicine couldn't.  I believe in His healing more than I believe in anything else.on.the.planet.  However it comes, I'm certain that it will.  

And I would love nothing more than Alli to wake up next Tuesday and be freed from the debilitating effects of CP.  The effects that have her mind trapped.  Her voice trapped.  Her hands trapped.  Her body and all the normalcy of childhood held hostage.  

The absolute cry of my heart. 

My heart can't go there. 

But I can be hopeful....a word I've never liked using until now.  I can be hopeful that she is picked to receive her actual stem cells the first round.  I can be hopeful that she's not chosen as the placebo.  I can be hopeful we see positive results....No matter the intensity of the results, something is obviously better than nothing.  And I am hopeful of that.  All of it.

Our prayers for Alli: 
1) Health.  That her lungs and airways handle the ventilator.  This will be the longest she has been sedated and on the vent post NICU.  Her tonsilloadenoidectomy and MRI have been her only sedated and intubated post-NICU surgeries/procedures (roughly 2 hours each).  She didn't handle coming off the vent very well in either procedure.  For the particular procedure, she will be under for 4+ hours. 

2) Limited pain and no side effects.  If you are familiar with a bone marrow harvest, you know it is not a cake walk.  They are pretty painful.  It is a surgery, will be extremely painful, and there are always risks, most especially when you come to the table with a medical history like hers.   



3) That Alli is not chosen as the placebo.  We know someone has to be, we just hope it is not her. 

4) Response to the treatment.  We're praying specifically for her cognition (she still tests at a 9-12 month level), speech/communication, feeding, fine motor skills, tone in hands and feet, that this will stimulate natural brain repair, the creation of neurons, blood vessels, and neuron connections.  REGENERATION!   

5) However God leads you to pray specifically for her.  

Thank you dear friends and family for loving our girl like you do!   



"But forget all that--it is nothing compared to what I am going to do.  For I am about to do something new. See, I have already begun! Do you not see it? I will make a pathway through the wilderness. I will create rivers in the dry wasteland."  Isaiah 43:18-19


1 comment

  1. Oh wow, kudos to you for finding that balance between hopeful and not so hopeful that you set yourself up for a fall. I said a prayer and am hoping for the best for Alli and your family!

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