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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Rolling with the punches

Life is all about rolling with the punches.  Lately, punches are exactly what have been coming at us.  Sam and I were so nervous about Sonzee's g-tube procedure that when things went South on Friday we felt like we had lost our abilities to breathe.  We had been back and forth with our decision to get the gtube all week long.  I honestly almost cancelled it two times during that week alone.  I have been comparing the experience with a flight cancellation.  When you miss your plane or your flight is cancelled and you are placed on another, there is that brief moment where you might find yourself wondering, "which one of these flights is going to crash?”  Maybe you are not as neurotic as I am, but I have definitely had that thought when my flight plans have changed.  The thought that both Sam and I wondered was, "Is this G-d's way of saying we shouldn't be getting a gtube for Sonzee?"  Did we just dodge a bullet or is it more of the message, "Now isn't the time".

One of the twists of our weekend in the hospital was that we finally got Sonzee to have her EEG that we have been essentially begging for since she weaned from Topamax.  I am pretty sure her epileptologist was holding off giving the Ketogenic diet more of a chance to do its thing prior to looking at her brain's background.  We all had an idea that she had hypsarrhythmia, I had sent some videos of her most recent spasm episodes over to her doctor last week, and it was decided on Thursday that following the surgery, she would have an EEG, and then after the surgery site was healed she would most likely be starting the prednisolone.  Either way, this road was going to be traveled.  The order just threw us off our game.  

I have been emailing with her epileptologist since Sunday and as soon as the bear is over her little cold, she will be starting 40mg a day of prednisolone for two weeks.  After the two weeks, she will have a repeat EEG and if the hypsarrhythmia is gone, she will begin a four week wean.  If there is still hypsarrhythmia then she will continue another two weeks at 60mg of prednisolone a day and then have the four week wean.  Our team has decided it is more imperative that we treat the hypsarrhythmia at this point vs waiting until after a gtube has been placed and healed.  Due to the dose of the prednisolone, we are unable to do the gtube simultaneously with the prednisolone as her immune system will be depressed and healing would be challenging.  We are working on scheduling an NG tube placement for the duration of the steroid treatment, and then we will reschedule the gtube placement afterwards.

She will remain on the ketogenic diet; we just will not be as concerned about her ketone levels needing to be high.  We will also be receiving some stage one food recipes so we hope it will help with the anticipated bear-like appetite, as well as administering her steroids.  I am sure the punches will continue to roll in as we deal with some of the ugly potential side effects of the high dose of steroids.  

Sam and I are at peace with our teams decision.  We feel that we have done our best with all of the medical decisions we have made for the bear along the way, and even though we were unable to "outsmart" the hypsarrhythmia, we gave it our all.  Some things in life are just unavoidable no matter how much you try your best.  

We are praying that she only has to complete this treatment once, and that we will successfully rid her of these ugly spasms.  We are praying that she will have as few side effects as possible from the treatment.  We are praying that she will have a honeymoon period from all of her seizures during or after the treatment.  We are praying that this experience will turn out to be one that we praise and would do all over again if we were asked.

Thank you all for your unwavering support and love, and thank you for helping us continue to roll with the punches.

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