Friday, July 29, 2016


One of the scariest parts of being a mom of a special needs kiddo is having to rely on your gut for just about everything.  Relying on your gut is not always easy because as I have shared previously, many times the feeling you think is your gut talking to you, is actually your doubt and fears.  It can be challenging at times to decipher one from the other and usually time is not on your side.  So as always, when you find yourself at the fork in the road with the hourglass empty, you give the steering wheel a slight nudge in one direction, you hold your breath and you pray.

However, one of the most rewarding parts of being a mom of a special needs kiddo is when you realize that maybe the feelings of doubt and fear that you think are clouding your judgement, really aren't fears and doubt, but actually your mommy instincts doing what they do best...guiding you.  When you reached that fork and you decided to turn left instead of right and you see that maybe, just maybe you made the correct choice in your daily "pick your adventure" series.  That my friend is what I would call validation.

It is at this time on your scenic route that you sit back and enjoy the ride, not because whatever decision you made resulted in what you as a parent want for your child, but rather because you realize that you are not completely failing.  You realize that maybe you are capable of more than you are giving yourself credit for.  You realize that maybe you are cut out for this heavy honor you have been given.  After all, according to any text book you should not even be on the path you chose, but you somehow, by some grace of G-d were able to determine that this was the exact place you needed to be.  For that reason alone, you deserve just a moment of applause.  We all know that the next crossroad is lurking around the corner waiting for you, and it will appear all too quickly and all too unexpectedly, and you cannot be nonchalantly basking in the sunlight or you just might miss your turn. 

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Wednesday, July 27, 2016


I knew I would find myself here again.  The place where only the 5-character string of CDKL5 can take me.  Sitting here with a pit lodged in my stomach and the tears in waiting.  I have been here before, yet every time I take a break and come back...I am always amazed at how new and fresh the sting is.  It almost feels like it is the first time all over again.  The same feelings flood through me; panic, sadness, anger, emptiness, hopelessness, anxiousness...etc.  I honestly would think that by now I would have developed some personal coping mechanism so I could avoid these days, guess I am not as talented as I had hoped.

Her seizures continue to get worse.  The fact that her epileptologist is amazing and reassured me that what we are seeing are not Infantile Spasms again, is doing NOTHING to comfort me.  I am praying this is not one of those times that my gut is going to win.  I am hoping that it is just the unknown that has me on edge.  I am begging G-d that this WILL be the time I am finally incorrect with my feelings.  It is eventually bound to happen; people cannot bat 1000 forever...or really at all.  I really want to be wrong, but I know something isn't the way it should be.  Yet being wrong would not do much to comfort me either, because either way she is seizing more than I would like.  Why has no one found a cure?

She has a seizure disorder, I GET IT.  I do not want her medicated to oblivion because she has a SEIZURE DISORDER.  Seizures are part of her and I am OK with that, because I know it is a complete crapshoot to get any form of control for her.  I am not even asking for complete control, but just some relief.  A chance for her to at least live a little, to get something out of her days, to simply relax.  Because her days right now...well they just cannot continue this way.  She sleeps, she seizes, she sleeps some more.  Thankfully she has the feeding tube so I have one less stress to harp on, but why is she seizing?  What am I missing?       

I knew toddler years would be a living hell, and not because of the "terrible twos", or "threenager" experiences.  Oh how I would give anything for her to be extra sassy and dramatic in a much less scary manner, I promise I wouldn't take it for granted and I would soak everything all in.  To be honest, I am just praying she makes it out of this stage alive, and in this case, those words are to be taken literally.  There has to be something I can do.  After all, isn't this my job as a mom?  I am supposed to be her protector and keep her safe.  I can tell you one thing, CDKL5 brings on an entirely new meaning for the term "parenting fail", and it is not one that ends with "hahaha".  I know that all I can do is my best, and I know I am doing just that, but finding myself up against a beast of a challenge such as CDKL5, well that does not hold an ounce of water.  

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Monday, July 25, 2016

Dear seizures

Dear seizures, 

I have been penning this letter for some time, waiting for the moment that I had enough courage to express accurately my dislike, anger, and overall hatred for you.  I hope this note reaches you when you least expect it, when you are relaxing from your long day of atrocious hard work, after you are finally settling in to rest and you are completely unaware of what is about to come at you.  I hope you are shaken to the core and completely sucker punched; you know, similar to what you do daily to my 17-month-old daughter and ALL of the children that suffer from the sudden abnormal electrical activity you love to share.

You are simply unrelenting as we, the defenders, play a delicate game of "walk the tight rope", balancing between medicating enough to maybe put you at bay and keeping our daughter's essence alive.  You have taken so much already from our daughter that your continued presence simply sickens me.  Each second of every episode that you infiltrate my daughter's beautiful body is another second I spend loathing your mere existence.  Today, alone, that was approximately 900 seconds.  That is 15 minutes of my life I spent feeling utterly helpless, fighting back tears with my heart torn into pieces watching as you took over the body of a helpless child.  It is so beyond frustrating and challenging to find the accurate words to express to you the complete and utter disdain I have for you.  I wish you were tangible so I could find you and give you the reciprocity you so deserve.  

I wish there was a magic potion I could find that would make you vanish from this world so no other parent, caregiver, sibling, or person in general has to witness what I do on a daily basis.  Most importantly, I wish there was a remedy mainly so no person has to succumb to the negative power you possess.  Too many parents have watched you take pieces of their children away from them far too often.  Too many parents have watched you literally suck the life out of their child.  Too many parents have you to thank for the disabilities their children experience and the daily struggles they endure.  Too much heartache and too many tears have been wasted because of you!

What I want you to know is that despite all the negativity you represent, and all the hurdles you place in my way my mission will remain constant and I WILL NEVER QUIT.

I will never give up the fight for a cure to stop your electrical misfiring.  You should spend each moment in constant fear that TODAY will be your LAST seizure.  You should live in a constant state of panic and worry that you will be obsolete from existence and that your damage will NEVER continue.  You should never get to the point that you feel you are a match to every drug manufactured, because my daughter and every other child and person who deals with you on a daily basis is far more resilient.  Most importantly, what you should remember is that every person you are attacking has a momma bear on the defense, and so my friend, you are the one whose days are numbered.

Good luck, 

From a fierce unrelenting momma bear warrior whose life mission is to eradicate you

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Wednesday, July 20, 2016

Do not fear the tube

Every time we make a decision, we wonder if said decision will result in a positive outcome.  There have been so many times along this journey that the decisions have resulted in a domino game effect with literally no end in sight.  Along the way we have almost become numb to the negative outcomes, I say almost, because even though we say we are numb, we are simultaneously saddened and frustrated with the choice that led to the undesired outcome.  Despite the fact that even though I can assure and reassure myself "we made the best decision with the information that was presented at the time" it never quite seems to soften the blow.  However, there are definitely rare times throughout this adventure that we happened to make a decision that 100% was unarguably the best decision ever. 

Usually the results of our choices do not present themselves immediately because in the land of CDKL5 you can be assured that the term patience will hold an entirely new meaning.  Then one day something will occur and it will dawn on you that "yes indeed that was the best decision ever".  The decision for us to give Sonzee a feeding tube was never one we entered into lightly.  In summary, after months of little bear not gaining adequate weight we had a consultation for a feeding tube to be placed in her stomach.  Prior to her surgery she had a negative reaction to IV fluids that were ran too quickly and almost killed her.  During that hospitalization, she was diagnosed with an abnormal background on her EEG and Infantile Spasms that resulted in high dose steroids and so the surgery was postponed.  After many days of back and forth between many medical professionals, it was decided that Sonzee should have a PEG tube placed.  After the PEG tube was placed, we were uncertain if this was actually the best decision for the bear.  She was not gaining weight, she was having severe reflux, increasing irritability, and difficulty with not vomiting up everything she consumed.  Finally, in May we hit our breaking point and she was hospitalized for a month resulting in us leaving with an intestinal feeding tube (NJ tube).  

Sonzee has been discharged from the hospital for one month and 17 days.  She has grown at least 2 inches and has gained at least 4 pounds.  Finally, our little bear is getting adequate nutrition and she is beginning to thrive in so many areas.  I look back on my concerns regarding this feeding tube adventure and fear was ranked high, followed closely by wondering if a tube would even help or how this would negatively impact her quality of life.  So many parents have asked me if we think we made the right decision in pursuing a feeding tube for Sonzee, and I used to waver in my replies.  If you ask me today how we feel about Sonzee not eating by mouth and having all of her nutrients be given solely through a feeding tube, we will answer "Undeniably the BEST decision we have made.  Do NOT fear the tube."

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Monday, July 18, 2016

What's wrong with her?

They warn you to brace yourself; to be sure you are ready for that dreaded moment.  The moment that will come out of the blue, unexpected and will catch you completely off guard.  The one where you are simply just being a typical mom and then the innocent question presents itself.  "What's wrong with her"?  If you have a child with special needs, you might have even prepared a script for when this moment might occur.  Odds are even if you did, you will forget it when the time comes anyway and in some instances that might not be the worst thing.  What is not always shared is that sometimes this question will actually evoke a feeling inside you not of anger nor of sadness, but actually of pride and happiness.

There we were at a playground on Saturday afternoon.  Two seven-year-old girls playing with Sonzee's older sister walked over to the stroller.  They looked at little bear and they said, "What's wrong with her?" as they pointed to the feeding tube coming out from her nose.  A look of curiosity and confusion filled their faces.  I did not feel the punch in the gut that I would have expected.  I did not panic, and I did not want to crawl inside a cave.  I wanted to celebrate.  I wanted to educate.  I wanted to explain as much as they wanted to know.

What courage it took these girls to ask and not point, stare, and walk away.  They were so interested in what I told them, they continued to ask questions.  They looked at her and said "Hi", of course, Sonzee did not give a bright-toothed grin, nor did she even acknowledge they were there.  "How old is she?", "17 months"...Does she talk?”  ..."no, she can't", I still turned to Sonzee and I said, "Say hi Sonzee"...."How does she say hi if she can't talk?”  ...I am still figuring a good answer for that question and it has been 2 days.  I explained her feeding tube in the best way possible so that two young girls who probably have never thought about their anatomy involving the digestion of food could understand.  They walked away satisfied with my replies.  I felt relief at how the exchange occurred.  I felt excited they cared enough to ask questions.

I anticipated a moment like this to leave me choking back tears and feeling discouraged.  Instead, I found myself beaming with pride and happiness that Sonzee mattered.  There are so many times that I am asked, "How old is she?”  I reply "17 months"....silence follows.  I often wonder if I lied and said she was 7 months would people then reply, "Oh she is so cute", "Look at her little rolls", "She is just so yummy".  I can see the discomfort on the faces of many when they walk over and see the tube in her nose.  I know they want to know why.  I so wish they would ask.  I will continue to brace myself for the day that a question rubs me the wrong way, but celebrate the opportunity to educate another person.

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Friday, July 15, 2016

CDKL5 Phases of Seizure Activity 101 (Version 2)

It has been awhile since I have posted about the types of seizure activity that children who have a CDKL5 mutation may have.  There might be other types of seizures and some children with a CDKL5 mutation may not experience every and/or all types listed below.  This should be used as more of a guide of what type of activity may occur.  As mentioned in a previous post CDKL5 Genetics 101, a mutation on the CDKL5 gene causes negative repercussions within the brain.  Along with severe/profound developmental delays is of course the most visible "side effect"; seizures.   

Before I begin the "CDKL5 seizure guide", I will introduce you to some common epilepsy terms.
  1. EEG: Electroencephalogram: a test that measures and records electrical activity of the brain
  2. Abnormal EEG: When there are changes to the normal pattern of brain activity
  3. Hypsarrhythmia: is an abnormal pattern on the EEG occurring in-between seizure activity, frequently encountered in an infant diagnosed with infantile spasms
  4. Infantile Spasms: Clusters of short spasms that last several seconds and chaotic brain wave patterns on the EEG
  5. Tonic seizure: tone increases and arms/legs stiffen and straighten
  6. Clonic seizure: repeated shaking of the body
  7. Refractory epilepsy: seizures that are not controlled with anti-epilepsy medications
The "CDKL5 seizure guide" can be broken down into three phases. Early Epilepsy, Epileptic Encephalopathy, Late Multifocal and Myoclonic Epilepsy; Phase 1, Phase 2, and Phase 3 respectively. 

Phase 1
  • Brief seizures beginning between 1-10 weeks old
    • these seizures are less than 1 minute long
    • can occur frequently
      • approximately 2-5 a day
  • The background of the EEG is normal in majority of cases except when a seizure is occurring
 “Typical" Development for a child with CDKL5 mutation at this time
    • poor eye contact
    • low muscle tone
Phase 2
  • Infantile spasms 
  • Brief tonic seizures
  • Hypsarrythmia
 “Typical" Development for a child with CDKL5 mutation at this time
    • profound mental delays
    • low muscle tone
    • no language or visual interaction
    • no developmental progress
Phase 3
  • Severe refractory epilepsy even with the use of anti-epileptic medications
  • varied types of seizures 
 “Typical" Development for a child with CDKL5 mutation at this time
  • profound mental delays
  • low muscle tone
  • no language or visual interaction
  • slow developmental progress
** It is unclear if every child with a CDKL5 mutation will follow the course mentioned in this post...this is based off of recent studies done on seizures and children with CDKL5 mutations.


Where is Sonya on her epilepsy journey?

We feel that currently Sonzee is inbetween Phase 2-3.  She finished treatment for Infantile Spasms (IS) back in April.  Since then she has not had any visible spasms and her background came back with no hypsarryhthmia during our last EEG we feel she is out of Phase 2.  However, IS and hypsarrhythmia can come back at any point until she is 2 years old.  After she turns 2 if she would continue to demonstrate spasms and have the hypsarrhythmia background it would then be referred to as Lennox Gasteux Syndrome.  Right now she has mainly tonic/clonic seizures, where her body will stiffen and then shake or have random movements.  They can last upwards of 5 minutes at a time.

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Wednesday, July 13, 2016

Dear parents of special needs kiddos

Dear parents of special needs kiddos, 

You just saw that picture of a child younger than yours achieving a milestone you dream of your child reaching.  Your heart is mixed, filled with excitement and joy for this special child but heavy for your own.  Your mind fills with a multitude of thoughts; the most prominent is the one where you begin to question your efforts as a parent.  You ask yourself, "Am I doing enough?" the doubt fogs your mind and you can no longer see clearly.

Let me reassure you, YOU are doing enough.

You are at home with your child wanting to help him/her improve, but you have no formal training in any specific therapy.  You question what you are doing and wonder if what you are doing is exactly what you were shown by his/her therapist.  You wish there were a class you could take to make you any and all types of therapists as soon as possible.  You ask yourself, "Am I doing enough?" the doubt fogs your mind and you can no longer see clearly.

Let me reassure you, YOU are doing enough.

You are not a trained medical professional yet you are required to become an expert in various domains.  You rely on neurologists, cardiologists, ophthalmologists, surgeons, nephrologists, orthopedists, GI doctors, etc. as guidance to make life-altering decisions for your child that YOU and YOUR family will be living the consequences of.  You ask yourself, "Am I doing enough?" the doubt fogs your mind and you can no longer see clearly.

Let me reassure you, YOU are doing enough.

You have other children or are pregnant with another child and you feel that they might be suffering because you can't be everything to everyone all the time.  You may have a significant other or a spouse and you wish you had more time to devote to their needs.  Your friendships are changing and you are left feeling alone.  You ask yourself, "Am I doing enough?" the doubt fogs your mind and you can no longer see clearly.

Let me reassure you, YOU are doing enough.

Your life is consumed with all things related to your special child.  You feel guilty.  You hardly sleep anymore.  You are merely a shell of your former self.  You don't remember the last time you went a day without saying the name of your child's diagnosis, if you know it, or his/her list of symptoms if you don't.  You ask yourself, "Am I doing enough?" the doubt fogs your mind and you can no longer see clearly.   

Let me reassure you, YOU are doing enough.  

It is because of YOU that your child is able to do the skills that he or she has already mastered.  It is because of YOU that your child will accomplish the goals you have only dreamed of him or her achieving.  It is YOU who works with your child hours on end when the therapists aren't around.  It is YOU who has mastered medical jargon you had no idea existed a short while ago.  It is YOU who are an exceptional parent, spouse, significant other, caregiver, and friend for being able to juggle all of the balls that have been thrown at you.  

There may be days along this journey that are dark and gloomy and fill your mind with doubts.  The clarity of your journey will not always be crystal clear in form.  However, take it from another special needs parent, No one is perfect, No one can do it better, and YOU my friend are doing enough. 

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Monday, July 11, 2016

What to do...

Sometimes I feel like I am stuck in the movie Groundhog Day with Bill Murray, reliving the same situations and having to answer the same questions and hoping if we do it correctly we can wake up to a new beginning.  Well, today Sonzee is 17 months old and after 16 months of making decisions, we clearly haven't picked the magic solution because here we find ourselves again with the pro and con list out weighing our options and figuring out the best course of action in terms of the best medication for the bear.

Sonzee's seizures are picking up.  We are up to about two to three a day.  They are lasting around 3-5 minutes.  We still debate on administering her rescue medication for a multitude of reasons that would probably be better off saving for its own post.  Afterwards she sometimes sleeps it off and then is in better spirits when she wakes up.  The seizures aren't currently interfering too much with her every day activities so we have just been riding this out, hoping they go away on their own.  (To this, I would insert the emoji who is contemplating things with the hand up to its face because I really should know better by now).  I have figured out that Sonzee knows when a seizure is on the way (we assume she gets an aura) because she has a distinct whimper that occurs anywhere from 5-15 minutes prior and always goes away once the seizure comes.  I wish I were as good at pinpointing the triggers.

So here we are again, with things coming full circle and us left to decide what to do.  Our antiepileptic drug options are down to two out of eleven.  Neither of which Sam or I really want to try, but they are the best of "all evils".  One medication Lamotrigine (Lamictal) (you can read all the fun this drug brings here), takes approximately 4 months to reach a therapeutic dose and can have a side effect of a deadly rash, BUT if the drug works, it is supposedly amazing.  The other option is Vigabitrin (Sabril), which can cause blindness.  Both of the side effects mentioned are extremely rare, and with close monitoring, can be caught early on.  Then again, the odds of Sonzee being born with a mutation on her CDKL5 gene were also rare.  Both of these drugs have been/are being taken by at least one other child with CDKL5 who have not had a negative reaction.

We know Keppra does absolutely nothing for little bear, and there is really no reason to keep her on something that isn't helping, but with the side effect of irritability, so benign in comparison, it is really scary to make a switch.  What if we just let her go medication free?  Well Sam was a huge advocate of this before she started to have seizures again, and me, well the though of her being without any type of seizure medication is extremely scary and something that I am unable to handle psychologically.  The one thing we both agree on currently is that she does need some sort of medication, one that won't impact her personality (too much) or hinder her development.  We could rely solely on the CBD oil, but that would need to show us a little bit more control for us to put all our eggs in that basket.

I wish there was a blinking sign indicating "THIS IS THE BEST CHOICE".  I wish there would be a sign indicating an answer that would not leave my stomach in knots and the thoughts in my mind running in circles.  However, what I have learned is that will never be the case, so we will just have to "make the best decision based on the information we are given".  Fantastic.

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Friday, July 8, 2016

Every storm...

8:51pm, 7:11am, 8:07pm, 5:44pm, 9:06pm, 11:06am, 1:13pm, 11:10am the times over the past five days that I remembered to use the seizure tracker to keep a record of the seizures little bear has had.  I wish I could say that after watching her seize over the past 16 months that it has somehow gotten easier.  That it doesn't make me want to cry watching during or now, afterwards, while she sleeps because the last one was 5 minutes long causing the app alarm to ring to tell us it was time to administer her rescue medication.  I wish there was actually some meaning behind my words when I say, "they don't even phase me anymore", because honestly they still break and take a piece of my heart every.  Single.  Time.

No remote location, no amount of beautiful scenery, no amount of positivity can take the sting away from watching your baby seize while you watch helplessly.  Random thoughts running through your mind.  When is this going to end?  Should I have ignored Sam and brought her suction machine anyway?  How long until we should give her the rescue medication?  Why is the CBD oil stored in the refrigerator and not next to me?  Is this one causing brain damage?  Why are her hands and feet turning red and clammy?  Why is it still happening?  Is she she going to stop?  

The fear, the anxiety, the extreme panic that occurs each and every time is probably enough to qualify me for a prescription of diastat (rescue drug) myself.  It takes me much longer than little bear to recover, to that I say Thank you G-d.  It has been over three hours and she is most likely out for the night; thankfully not awake reliving the experience, or in any more pain, (we gave her Motrin when she was whimpering and restless afterwards).  Me, well I sit here switching between Taylor Swift and Gary Allan, again exhausted beyond belief and blurred vision, sipping a glass of wine and holding back the tears that will eventually find their way onto my pillow.

It is the nights like tonight that I HATE the strength that I supposedly have.  The strength that leaves me feeling angry and sends me straight into the land of Why?  (For the record, I hate entering this land)  "Why Sonze?", "Why our family?", and the one I feel most guilty of, "Why me?"  Aren't other families that can handle this better, more gracefully, with more faith, who are actually strong and don't ask why?  Aren't there others who are better equipped to deal with this?  Oh, how I wish there was a way to take a little bit of the pain and all of these feelings and bottle them up into a glass bottle to be corked, buried, and NEVER opened.

My ability to keep on pushing through right now is in part to the lyrics in Gary Allan's "Every Storm"...

 Just put your feet up to the edge, put your face in the wind And when you fall back down, keep on rememberin' 
Every storm runs, runs out of rain Just like every dark night turns into day Every heartache will fade away Just like every storm runs, runs out of rain 
It's gonna run out of pain It's gonna run out of sting It's gonna leave you alone It's gonna set you free

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Wednesday, July 6, 2016

Closer than yesterday

I have always been my own worst enemy when it comes to expectations I have set for myself.  I can be hard on myself for getting easily frustrated with the kids, not being as well put together as other mother's, not being able to do everything that I have set forth on my agenda for the day.  There are plenty of days that I stare into space for a good majority and then find myself upset that I did not take advantage of the time I could have spent doing other things, maybe "more" necessary things.  I am sure there are people who tell me that I did the best I could for the day in question.

If you are a part of our Facebook family then you probably have seen the pictures of Sonzee bear working hard on her physical skills.  I cannot speak for her, but I can guess that if she could use her words, she would tell me how frustrated she is with herself for not being able to bear weight on her arms and knees.  I think she might express disappointment within herself for not having met the age appropriate milestones that have passed by.  If she could talk and she did tell me that, it would be beyond heartbreaking.  I know how hard she is working, I know that even though it may not appear obvious to the casual onlooker, each day she is achieving little Sonzee-Stones.  

I have been speaking with others who are feeling as if their life is not all wrapped up neatly in the perfect box with the perfect bow.  Things in their life are a little off kilter and they are not sure how to regain their focus.  They have conveyed their fears and their anxiety, and admitted they are just so unsure about the direction their life is going.  They have doubts about employment, mothering, and their day to day actions. 

It can be so easy to be bogged down by the hustle and bustle of everyday life that we do not really see the bigger picture.  It is not every day that we typically sit in a moment of reflection and really realize all each of us has endured over the years causing us to make certain decisions.  We all have personal challenges and difficulties we must overcome and little by little every day we all do just that.  Every day is a new day and a chance for us to start fresh but not to forget how hard we have worked to be where we are at this exact moment.  I think this is one of those quotes that need to be turned into a magnet and placed in the kitchen, because...

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Monday, July 4, 2016

Summer changes

It has been a week since our adventure on the east coast began.  The fantasy of this experience has been building up in my mind for about 2 years and more so since we paid the deposit on the town house rental back in February.  When Sonzee landed herself inpatient in May, we quickly realized that our planned summer of tranquility and family bonding might not occur in the way imagined.  As June approached at an insanely fast rate, this trip felt slightly out of reach.  Similar to a person reaching out their hand, but they are just a fingertip shy of being grabbed.  Thankfully, in this case we were able to get a grip at the last minute.

I am not naive enough to think that by flying multiple time zones away that Sonzee's challenges and our predicament will simply vanish.  I know no matter where we go or where we are that things will not drastically change.  Sonzee is not going to have a functional CDKL5 gene just because we are in a calming and cooler climate.  Yet, somehow the fresh air, the ability to take multiple outdoor walks, the chance for her to swing and go to an outdoor park in the middle of summer are making this journey a gazillion times better.  

The fresh air of the Catskills is doing wonders for all of us as a family, I especially.  The kids are able to run wild and free outdoors.  They walk to their friends and play in a grassy field with other children and I am able to fight my urge to be the helicopter mother.  The pace is ironically slow for us being in New York.  There is only camp drop off and pick up besides Sonzee's medication alarms that provide an actual schedule.  I have been able to spend more quality time with Sonzee's siblings, my patience is slowly growing, the weights and pressures of everyday are slowly lifting.  I am so glad this summer dream was able to become a reality, and I look forward to making many more memories this summer and in years to come.  Sometimes changing your environment can actually change your perspective in more ways than can even imagine. 

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Friday, July 1, 2016

It's worth it

From the beginning of Sonzee's journey, Sam and I have been opened to pretty much any type of treatment that someone can present to us.  Even if there is only one person that the treatment has helped, we will give it a go to see if we can help our little bear.  We got a medical marijuana card early on in our journey for Sonze just in case we ever wanted to use more than hemp based cbd oil.  We were not sure we were ever going to "need" the card, but figured it would be best if we had it on hand.  

Back when Sonze was about 7 months, we started with the more well known Charlotte's Web brand and moved on from there when we felt that it was not the best fit for Sonze.  We then went on to try two more hemp based CBD oils.  Both of them came highly recommended, both of them have significantly helped at least one other child with a CDKL5 diagnosis with either seizures, cognitive abilities, or both.  Sadly, for Sonze, none of these seemed to do anything for her.  

After Sonzee's most recent hospitalization, we were left in the middle of a minefield if you will in terms of anti-epileptic medication choices.  It is really a hard place to be when you find yourself staring into the unknown unsure of what type of seizures your child will be up against, the frequency, the intensity and/or the duration; unsure of which drug will actually work.  Is there even one?  Sonzee finished steroids for her Infantile Spasms and hypsarrhythmia back in April, we weaned her Keppra finally in May, and it was just Depakote by itself to hold down the fort.  We were never sure if the Depakote was working for Sonze because her seizures had not really been visible since the steroids.  She had the occasional fragmented spasms indicated by her eye movement, but nothing else that was obvious.  After her blood transfusion eliminated the use of Depakote, we went back to Keppra out of sheer panic.  Neither Sam nor I ever felt it had any sort of control for her and she was always agitated and grumpy on it.  Since this was given to her when she was 3 months old, it was difficult to decipher what was Sonze and what were drug-induced behaviors.  After we weaned her, she was definitely happier, but Sam and I could not (still cannot) agree on the next step drug for her, so as a compromise and "holding drug" we went back to the Keppra.  It is tough to make these choices; I will leave it at that.

We agreed to help her mood and possibly cognitive capabilities we would go ahead and try CBD again.  In the back of my mind, I thought maybe it could help with her seizures, but honestly, it is really draining to put that high of an expectation on something that has already failed her multiple times in the past.  Instead of going back to one of the hemp based CBD brands we had in the fridge, we decided to take a drive to the local dispensary in our area and speak to those who are more knowledgeable.  We settled on a local grown blend and we were sent on our way.  

We started to give Sonzee the oil a little over 3 weeks ago.  Her seizures are back to what they were when she was about 5 months, once every 24-48 hours and lasting around the 2-minute mark give or take 30 seconds.  You might be feeling a bit let down at these words, but let me explain to you the wonder of this little green plant.  Three days ago about a minute and half into her seizure I decided I would see what would happen if I gave her CBD oil during her seizure.  By one minute 46 seconds, she had taken 2 drops and by two minutes and 10 seconds, her seizure was complete.  Was it the oil?  Was it just that her seizure was over anyway?  I am unsure.  Yesterday, her seizure began and at 30 seconds, I grabbed the oil, by 1 minute the seizure ended.  Today, her seizure started, I grabbed the oil, and the seizure stopped.  


The whole topic may be controversial, and people may lend their judgment to us for giving our child this oil, but honestly, I DON'T CARE.  If this oil takes away even 1 second of her suffering, I am on board and it is 100% WORTH it!

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