Thursday, March 3, 2016

When hope feels distant

We knew this day would happen.  We had hoped and prayed that by some long shot miracle Sonzee would be part of the 50% of kids with CDKL5 who did not have infantile spasms or hypsarrhythmia.  We also hoped and prayed that she would have her honeymoon period from seizures, even if only for a couple of months...maybe there is still a chance of that occurring, but yet here we are.

The order has been placed for an in home pulse ox machine and blood pressure monitor.  If Aetna stops being ridiculous they will be delivered today.  I have separated and labeled a weekly pillbox with 10 additional pills to add to her daily medications.  I have received food recipes so we can give the bear her steroids with some flavor and still maintain some semblance of ketosis.  I so wish right now that she had the Gtube to make this easier for her.  She dislikes taking her crushed up Keppra by mouth as it is.  I have taken steroids before myself...this is going to be a challenge.  I can only hope her NG tube will be placed sooner rather than later.  That will be most helpful for the middle of the night servings.

I am feeling the hope I once clung to slowly slip away.  The hope of her meeting milestones, the hope of her experiencing seizure freedom, the hope of things not being so complicated...all the various types of hope...almost gone...it’s becoming almost impossible to see clearly.  Every time I think it is just a little hurdle we have to jump over it ends up feeling more like an attempt to climb up a 100 foot smooth solid wall.  

I feel so betrayed by the optimistic thoughts I had in my fantasyland.  The daydreams I let my mind wonder into.  I am mad that I let myself even consider that this course would be avoidable.  We really were so naïve thinking that Sonze being (one of) the youngest diagnosed children with CDKL5 would somehow make things better for her.  All the good it has done; she is no better off than those who did not have a diagnosis when they were her age.  It is still treatment by trial and error.  No one has a cure and I am still just as unsure of her future and clueless about her prognosis as others are.

I am experiencing a plethora of emotions.  While at peace with our decision, I still consider this treatment a horrendous option that we must try to attempt to try to gain some control for her.  The combination of all of my feelings within me does not even make sense to me to be honest.  I feel so perturbed, so distraught, so numb, so nervous, and even a little gitty.  I am drained and just plain exhausted.  I want to say I have hope that this treatment will work...but there are enough kids who have CDKL5 who were unsuccessfully treated, that I feel that would be unfair to do to myself.  It is tough to maintain the balance between realistic expectations and remaining hopeful, eager, optimistic.  


I do not know how many more bouts of disappointment I can handle.  This girl needs a break.  If I am honest, I need her to have a break.  Watching her have these spasms has taken its toll, and while my hope may be dwindling, I will keep my faith in g-d that he knows it is time for us to experience a miracle...even if it is brief.  Even if it's only purpose is to restore my spirits and give me back the tiniest sliver of hope...because without a restoration of hope, continuing on this journey will be damn near impossible.

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