Thursday, October 19, 2017

Memories

Tuesday was the first time in a long time that I waited for Sam to get home from an activity with Sonzee's sister, so I could take little bear over to the ER.  It had been so long, but the motions were so routine it was as if this was part of our daily schedule.  The same wave of feelings crashed over me, which was basically a contradiction in and of itself; a slow motion out of body experience of not wanting to go, paired with the rush of having to get there before the stranger somewhere else in the Valley who was inevitably racing to beat me, so we could both "beat the rush".  I have learned over the past 2 years and 8 months that it doesn't matter how long it has been since we have been to an ER, stayed in patient, gone for a routine appointment, the emotions and memories within won't ever go away.

You can literally see the top lights of the children's hospital from our street as you pull out of the driveway.  The drive itself is at most 10 minutes covering 4.9 miles.  Our house backs up to the freeway, so it only involves the street lights to get on and off, other than that it is a straight drive, 4 exits.  There is no thinking involved, except for the thoughts that inevitably push their way to the front of my mind.  The thoughts that bring the cloud of tears that I spend a good majority of my time pretending don't exist.  The thoughts that tear at my heart and remind me that our life won't ever resemble typical.  

It was how I scarfed down dinner and three children gave us both hugs and kisses goodnight, while one asked in a blunt manner if Sonzee would be coming home.  How none of them were phased by this event.  How I got to the second set of lights prior to turning into the hospital and I had a complete breakdown of fear wondering how this was going to work with a brand-new baby in just a few more weeks.  All these thoughts compounded with the worry of whether going was the best decision and what could possibly be causing one of her first fevers that wouldn't settle even with alternating Tylenol and Motrin.  


It was a bombardment of thoughts that wouldn't let up, the ones that don't give you a second to catch your breath, the ones that are far enough away on a daily basis that you don't feel their constant weight sitting on your chest, thankfully because it allows you to breathe.  In a simple moment you realize they never really went away, they were just hidden in a compartment to keep you sane and functioning.  It doesn't matter how much time passes or how "good things may be going", they are there like a swift punch to the gut to bring you back to the reality of the special needs life you are part of, the one that no matter what, you won't ever be able to escape.


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Monday, October 9, 2017

Simplicity

On Sunday we take our older children (with Sonzee in tow) to their weekly swim classes.  During their session in the baby pool to the right of the "big kid pool" is the class for babies 2 months to 6 months old.  Little babies that are getting acquainted with the water while bonding with their mom or dad, or both.  Sonzee participated in this class when she was that age.  I have distinct memories of her sleeping the entire half an hour due to having a seizure before entering the pool.  The other parents would all smile and comment about how cute it was that she was able to sleep the entire time, they never knew why.  I enjoyed that class because it was a time when Sonzee was "the same".  It was a time that I could pretend that she was not developmentally behind.  It was a time that her seizures, CDKL5, and our lives were essentially a secret to outsiders.

Today as I was helping Sonzee's twin girl get dressed, I was standing right next to the baby pool.  I could not help but stare at each baby and his/her individual experience.  There were 5 boys and 1 girl in the class.  Mostly dads were present and they all appeared to be on the younger side of the age range.  The mom or dad was taking a cup with holes at the bottom and letting the water fall over each baby's head.  I took note of all the reactions present; surprise, eyes closed with a squirm, and some pure delight.  I could not help but smile.  It has taken me 8 months to feel ready to blog openly that Sonzee is going to become a big sister in the next 6-8 weeks.  I have had so many experiences along this journey that I have wanted to put to paper, but it was not until today when that first baby in the pool gave such a huge smile as his reaction to the water over his head that I knew I could do it.


Chalk it up to fear of opinions, fear of something going wrong, fear of comments, fear in general, or maybe it is just the uncertainty of how our family dynamic is about to change adding another child into the mix.  Whatever the reason, I could not bring myself to "admit" that our world, Sonzee's world is going to change and deep down I know it will be for the best but on the surface, there is an immense amount of fear of the unknown.  What I have missed most about having an atypical child is the simplicity that a typical baby brings.  Yes, there are sleepless nights, there is the typical parent worry, there is the typical unknown, there are the typical challenges a new baby brings to a family, yet after having a Sonzee there is an appreciation for the simplicity that I am praying to occur with this baby.  Fear is deeply etched into this hope of everything working out the way I am so anticipating.  Sometimes the fear is so suffocating it is paralyzing, not that this baby will have CDKL5 (yes, we checked the best we could for those of you whom I know are curious) but of every other rare situation that could possibly occur.  Once you enter the world of rare you realize how not so rare it is.  However, in the recesses of my mind and heart is just pure faith that this baby is exactly what our family needs to pull us all together and keep us grounded in a manner of simplicity I am ready to appreciate in a completely new manner, all thanks to Sonzee.  

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Tuesday, October 3, 2017

Clarity

Since Sonzee's CDKL5 diagnosis I have always done my best to make sure that she is looked at as "Sonzee", as an individual, as a person first before the 5-character string that sits "quietly" next to her name on every document that I fill out for her.  To be honest when a doctor uses CDKL5 as their reasoning behind whatever symptom or situation we find ourselves in, it infuriates me to no end.  I have at times considered it to be an excuse, a way for them to place a "blame" on something because they probably do not have a reason themselves as to why she is enduring so much difficulty.  

While I have always felt that her medical team has always held her best interest at heart, there have been so many instances that I felt frustrated with them, thinking that they "just didn't get it".  After all, my rationale was that despite caring for her medically, how could they possibly feel the same way about her as myself and Sam.  After all, they have so many patients, they have so many other priorities, they do not have the time to figure her out.  The situations we find ourselves in with her have taken me on one huge never-ending roller coaster of emotions and it seems around this time of year I tend to have an epiphany and continue to travel on this lengthy journey of grief.

There is usually a situation that occurs that brings the epiphany to light and this year it was our trip to the Children's Hospital of Philadelphia.  We went specifically for Gastrointestinal (GI) motility testing.  Of course, the doctors were aware of her seizures and her overall diagnosis of CDKL5, but I "strategically" did not request a neurological consult while there because I wanted us to just discuss her motility.  I did not want the "blame" to be on CDKL5, I wanted to be told something else was responsible for her situation.  I wanted to know that there was a chance that she could maybe, someday, be a bit more "typical" and tolerate food into her stomach.  Dare I say it, I wanted some "hope".

When we left Philadelphia, that is exactly what we left with, hope for the future, hope for her feeding, and hope for her to be gastrointestinally typical.  I held in my hand an extensive list of potential trials and suggestions and with uncertainty, but "hope", Sam and I walked into her Dr's office this past Friday.  We sat and discussed all of the options, we came up with "the perfect game plan", we spent a ridiculous long time asking questions and listening to what our doctor's thoughts on everything were.  These test results gave us information we never had before, a "reason" behind her issues, and simultaneously the infamous "aha moment" filled my mind as I listened to Sam's final question and heard the answer.  

"Just so we can sleep at night. (Well to be honest I have been sleeping fine), but so we can sleep at night, what these test results show is that her dysmotility was not the result of anything we did?  It was not due to us giving her steroids? It was not due to us having the g-tube placed? There was nothing we could have done to prevent this from happening?"

"No, no, nothing you could have done, this was happening regardless, even before you realized it.  This is just the result of her and the effects of CDKL5".  At that moment I realized how much Sonzee's doctor has been on our side this entire time.  It is so easy to be blind when you are living in the trenches, there is limited visibility when you live in this life.  You pick a team that will hopefully eventually help you to see through the forest.  Just as our doctor left to write out the recommendations and send us on our way I looked at Sam and asked him the question we used to never agree on.  

He went into the hallway and saw Sonzee's doctor standing by her desk and began asking her more questions, the questions that yielded the answers we needed to hear, but did not know to ask.  The answers that proved to us that our doctor was always looking out for Sonzee, but she was also supporting us on this journey.  On our quest to separate Sonzee from CDKL5 we are the ones who forgot to consider the "bigger picture".  No, CDKL5 does not define her.  Yes, despite CDKL5 she can make valuable gains.  But despite only being a 5-character string, the complications set forth from a genetic mutation such as CDKL5 create limitations that will always be present and unavoidable.  No matter what our hearts might yearn for, the specific and individual mutation makes our little bear who she is, and it is the reason she is rare, she is special, and she is HER.



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Tuesday, September 12, 2017

Muddy water....

Image result for quote expectations lead to confusion
When Sonzee was first diagnosed with epilepsy and then shortly after with CDKL5, I would only bring up CDKL5 as the reasoning behind her daily seizure activity if asked, but would just tell inquiring minds that she had epilepsy.  As we added more diagnoses to her file she morphed into what I would begin to refer to as a "medically complex" child.  It was easier for me to summarize her to others with two words vs going into the extensive list of specific difficulties she presents with.  I never really considered that even within the land of medically complex she could be even more complex than any of her diagnoses summarized.  


We flew 2,344 miles from our home to have motility testing ran to help us treat her better.  In my mind, I assumed the results would match up with her symptoms and various GI diagnoses, and they would confirm that her stomach could not tolerate food.  I assumed we might be given different ways to manage her symptoms, but that at the very least her body would perform in the same manner it has for us each and every time we have tried to reboot her system and use her stomach.  Yet here we are and so far every single test is coming back normal.  Do not get me wrong, this is great in terms that her stomach is emptying appropriately, and we have specific evidence she has bad reflux, but it is also extremely disheartening because we do not seem to have a straight forward clear answer as to why she cannot tolerate being fed through her stomach daily. 

I suppose that is an answer, it shows there is no physical reason as to why she cannot tolerate foods.  It shows that theoretically, with time, we could transition some if not all her feeds back to her stomach.  It shows there might be potential for her to be fed by her mouth versus a feeding tube (given she does not aspirate).  However, it leaves us having to sift through the neurological component that is CDKL5.  It means that despite my best efforts to not use CDKL5 as the reason for everything Sonzee related, it seems to be the "only" answer to why that we have left.   

Since she was born I have always been on the search to uncover the cause behind her symptoms.  Maybe that is what all parents do when they are handed their unexpected present of a medically complex child.  In our case we found our overall why and it is known as CDKL5.  Maybe it is just me, but I used to think and say that if I knew the reason behind the "why" that I would be okay, that it was all I needed to know.   Maybe there is just no pleasing me, but I feel there SHOULD be an actual answer to why, other than CDKL5, because all I have learned in 2.5 years is that CDKL5 does not give us any answers and it certainly is not an answer in and of itself.  Then again, maybe there will never be actual answers and I should just stop searching... 



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Wednesday, August 23, 2017

Never

In parenting in general I have always tried to avoid using the words "I will never".  I figured eventually I would most likely become a hypocrite because how could I say "never" when the whole experience was something I had never taken part in and therefore knew nothing about to make such a hefty accusation.  I knew in the back of my mind how I wanted certain things to play out, but then life happens and you just never know what choices you thought you would "never" choose.  

The opposite has been the case when it comes to specific anti-seizure medications.  Once you get thrown into the world of seizures and spasms, and various drug names you quickly get a clever idea of the drugs that you would not want to spill on the floor due to the hazards much less put into your child's body.  From the beginning Sam and I were adamant "we would never" give Sonzee the drug Clobozam, also known as Onfi.  It is a "big gun" anti-epileptic medication, known as a sedative and classified as a controlled substance.  The warnings for this drug are printed in bold on Onfi's very own website.
                    
               WARNING: RISKS FROM CONCOMITANT USE WITH OPIODS
See Medication Guide and full Prescribing Information for complete information.
ONFI is a benzodiazepine medicine. Benzodiazepines can cause severe drowsiness, breathing problems (respiratory depression), coma, and death when taken with opioid medicines.


I find that we are at an impossible crossroads.  I cannot in good faith let my child seize multiple times a day for 10+ minutes each time.  She cannot keep sleeping and seizing.  On the other hand, our only choice is a drug that could literally kill her with respiratory issues and/or make her sleep all day long.  As usual the question of "quality of life" presents itself in a more pronounced manner.  She does not have much quality these days with her seizing schedule.  We are at the point where we must take the chance.  We must play Russian roulette with our 2-year-old and we must pray we will not regret going back on our never.

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Tuesday, August 22, 2017

Playtime Interrupted

Oldest: "Ema can I play with Sonzee in my room?" 
Me: "Yes, just be careful when you push her in the chair not to get her wires tangled"
Oldest: "Come on choupers, let's go"
(Some time goes by)
Oldest coming to me: "Ema, Sonzee is having a seizure, why does she always have a seizure when she is having fun?  I was reading her a book and she was smiling and all happy and then she had a seizure again...it's not fair"
---

Our oldest was just 5 years old when Sonzee was born.  An innocent, light brown haired, blue eyed, loving, caring, full of personality, dancing, playing around, typical big sister who has always loved to dote on her siblings and had to learn at the age of 5 what a seizure looked like in a newborn baby.  At 5 years old, she was wise beyond her years, but still a bit too young to fully understand or grasp all of what CDKL5 meant for her youngest sister.  Sam and I have tried over the past 2.5 years as hard as possible to protect her little mind and heart, answer her questions, give her only necessary information, and essentially trying our best to support her innocence a little longer.  However, our little girl is becoming older, smarter, and now at the age of 7.5 she understands more, hears more, knows more, feels more, and hurts more. 

I am not quite sure what hurts me most about Sonzee's seizures during her sibling playtime, the list is so long.  I hate that it disrupts a happy moment occurring between them all.  I hate that she has seizures in general and they occur so often that this conversation happens at least once a day.  I hate that our oldest must experience at 7.5 what I do now at 33.  I hate the sound of defeat our oldest has in terms of her play session being cut short due to the seizure "because Sonzee was having so much fun".  I hate that my only answer is "I know it stinks you guys were all having so much fun".  I hate that our 7.5-year-old rebuttals with "why does it ALWAYS have to happen".  I wish my reply could include more substance than "I don't know, it is such a bummer".  It ALL hurts.  It ALL breaks my heart.   


The silver lining comes at the end of the seizure, when I relocate Sonzee to her bed to rest and her oldest sister asks if she can finish reading to her in her room.  Our oldest and I have one of our typical sevenager disagreements because she wants to show Sonzee the pictures and cannot reach her crib, and I assure her it is ok, Sonzee will just listen because she is too tired at this point to look at the pictures anyway. I leave the room to two sisters, the 7.5-year-old reading to the 2.5-year-old and can almost for a split second forget the events that preceded and the fact that one of them has intractable epilepsy.  I will replay the events in my mind and will pray that tomorrow's playtime will go differently, but first I will memorize this image...because this gives cushion to the pain.  This love that our oldest has for her "twin-girl" is something that brings tears to my eyes.  She has her own twin size bed, with a memory foam mattress (that I personally think is extremely comfortable), but instead insists on sleeping on a toddler bed in Sonzee's room.  This brings me a wave of comfort even if it is just a ripple.






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Wednesday, August 16, 2017

Spectrum

It has been four days since our CDKL5 family lost another precious little soul.  A sweet 2 year 10-month-old little boy who was just 4 months older than Sonzee.  The pain is a mixture of heartbreak for his family tinged with fear for my own.  Within those four days another CDKL5 2-year-old learned how to take her first independent steps.  My heart filled with joy for all she has accomplished and immense amount of hope for her journey, but simultaneously breaks for what Sonzee might never do.  My heart and mind both torn at the fact that I should be less selfish about my feelings toward other CDKL5 children’s' advancements and just be grateful it's not my turn to be planning a funeral. 

This incurable disorder is just devastating on every imaginable level possible.  The spectrum is so wide and confusing.  We all want to grasp onto hope with the term representing various parts.  We hope our children do not constantly seize, we hope our children gain milestones, we hope our children are happy, we hope our children do not suffer, we hope our children do not catch a common cold that sends them into the hospital and has them clinging onto their lives, and most importantly we hope and pray our time to bury our child does not come today.

I spend every moment trying to keep Sonzee's life expectancy in perspective.  I try not to focus on the "what if" and "when".  I do not let those aspects consume my life, but the thoughts are never distant from my mind.  I know plenty will say "I shouldn't think that way", even other parents of children with CDKL5, but I will not convince myself otherwise when I know how unforgiving these toddler years can be, when I have witnessed Sonzee teeter on the delicate rope between life and death, and when I watch her seizures increase in both length and intensity right before my eyes.  It works the same with her Sonzee-stone achievements, I try not to focus on the "what if" and "When" but just let her do what her body is capable of, trying to truly believe when I say that I am content with where she is at.  


Daily we have new CDKL5 family members added to our group.  Having your child affected by a disorder with such a spectrum is cruel and unfair.  A parent posts a picture a picture of their 14-month-old standing and some say it "gives them hope", while I do my best to not compare an apple to an orange.  No one wants to have their child "more severely impacted", but someone must fill those shoes.  It is just the luck of the draw when it comes to CDKL5 and the role it plays and while we could not have won a bigger jackpot having Sonzee as part of our family, we could not have fathomed how difficult and painful her journey was going to be. 

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Wednesday, August 2, 2017

Sometimes it's just easier

We are spending this week at Hershey Park.  We've done this before when Sonzee was a year younger, and I could justify her constant position of being in a stroller because she actually was "a baby".  It didn't phase me that she wasn't going on the "no infant in arms" rides because she was an infant.  She wasn't impressed last year with the few rides she could go on, the merry go round, train, and the monarail, but we took her on them irregardless because I insisted we treat her like everyone else.  Fast forward a year, knowing her personality better, and respecting her desires and we decided to not even attempt to take her out of her wheelchair.  

Sam and I have a routine of waiting in line with the kids to go on rides and then he takes on the children who want to go that have met the height requirements one at a time.  It's not ideal but we are clearly outnumbered by children so it is what is, and we don't factor Sonzee "as the reason" we wait.  With my parents here this year it makes it easier, but due to various ride restrictions Sam is the sole adult participant for this trip. There are some rides the kids wanted to go on  but that would involve taking Sonzee out of her wheelchair and having her be held in my arms and to be honest would result in a miserable time for everyone in addition to her, so we told the big kids we would take them later because Sonzee would be retiring to the room early.  As my oldest repeatedly said "even though we love her, sometimes it is just easier to not have Sonzee."

"It is easier", after I agreed with her and said the words, the tears swelled in my eyes (thank you $5 sunglasses from Marshalls for hiding this small fact) and I had to choke back the feeling of crying from my chest.  It is a honest truth that certain aspects of our life are "easier" without one of our children, and that is the worst feeling in the world and utterly breaks my heart.  I can't believe I have to say those words much less think them, and I really can't even fathom that it is actually a fact.

It doesn't phase her siblings that we tell them on multiple occasions "we can't because of Sonzee".  They don't have tantrums or get visibly upset over the "excuse".  They are very "go with the flow" type of children, but I am sure it must be frustrating to constantly hear us tell them they can't because of Sonzee.  It warmed my heart to hear my oldest say "we love Sonzee but", but I dislike immensely that there is even a "but" to follow.  She isn't wrong either, it is easier at times without their sister, I just wish that wasn't the case.

Sunday, July 30, 2017

Sensitive emotions

I can clearly remember how Sonzee was 2 years ago when she was close 5.5 months old.  Her diagnoses of CDKL5 known to us already for a little over 3 months.  She had been enrolled into therapies for 4.5 months at that point.  Her seizures were finally under some semblance of control, only happening every other day.  I remember being upset with that form of control.  I remember despite knowing the odds of her sitting, walking, talking, and/or being functional I was filled with so much hope because she was so young.  I remember distinct conversations with her physical therapist where we would both say that "Sonzee will...." and "She is so young....".  I remember feeling like maybe, just maybe, she would be the outlier to the (extremely few) journal articles written that gave the statistics about children with CDKL5.  

I can clearly remember 14 months ago when Sonzee was 15 months old.  Her life hanging in the balance as she spent a month in the hospital with it unknown to us whether she would be leaving the same doors we brought her through in our arms.  Her amazing therapists came and sat there encouraging her along the way.  She was swollen from medications, TPN, and additional fluids.  She had transfusions of blood and various other items to balance her metabolic panel, and developed an allergic reaction to the one seizure medication that at the time she appeared to be responding to.  Her seizures were at bay, but her physical development was far worse due to her failing body.  I remember feeling utterly helpless and wondered if it was going to be our turn to join those who had lost their CDKL5 children.

The years have passed and our attempts to help Sonzee live her best life possible have not gone the way I personally have intended.  Despite the relentless seizures and the awful GI system she was blessed with, we have not ever stopped her therapies.  Her therapists sit in our home whether Sonzee is an active participant for the hours they are scheduled.  They reschedule when Sonzee is having a difficult day and they do their best to help her have the best quality of life possible.  I will never say that the diagnosis of CDKL5 defines who the essence of Sonzee is, BUT I will loudly announce that it plays a crucial crucial role in her body's ability to achieve skills and perform "simple" tasks.  


Last night was one of those times where I felt like such a failure despite all the therapeutic efforts we have tried with Sonzee.  I truly believe that the words that led to my feelings were not intended to cut me like a knife.  I will lend it to me being super sensitive, but I am going to embrace the pain they caused regardless.  No Sonzee does not sit, she does not even want to be held upright at times.  She is wheelchair bound, and this is not changing any time soon.  Her physical abilities do not have anything to do with her personality so I do not let her lack of development negatively affect me.  It is probably irrational of me to be the slightest bit disappointed with myself over her development when just yesterday over an 11-hour period she endured 3 seizures and slept 9 of those hours.  There was no time to squeeze in any attempt at physical therapy.  I will take a guess that her day today will be similar, but she will be up for the challenge in true Sonzee fashion.  She is her absolute best even with the CDKL5 mutation she was allotted and I will continue to tell myself I am also.

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Monday, July 17, 2017

Disappointment...again

For the past two summers I have created a list of "attempted goals" in my mind that I wish for Sonzee to achieve.  I always tell myself to be realistic, but to be honest, this is the one time of the year I actually feel extremely optimistic that during these four weeks there is no reason why she cannot progress leaps and bounds when there is nothing else to do but work with her.  Then the summer begins and the hours of each day pass by, the days turn into weeks, and I am left realizing that my fantasy of Sonzee gaining substantial ground is just that, a fantasy.

The scenery has changed, the environment is different, but the effect of CDKL5 is and always will be the same.  The seizures perform their daily havoc, actually, they are pretty much the only skill that she seems to make advances with.  Just 5 weeks ago she was having small little questionable moments, and now twice a day on average she has undeniable episodes.  I do not know when I will truly realize that we are not ever going to beat the seizures.  There is no magic potion to wave them away, and deep down I really do know this.

Her jumper is hanging in the doorway here in our townhouse and her stander sits by the wall.  Both have been used twice.  The Upsee has spent the entire time hanging in a bag on the laundry room door, my desire for us to walk together for 5 minutes a day has yet to be met.  Her bike sits by the fireplace next to a basket of toys she has zero desire to play with despite the various attempts her siblings and I make to get her interested.  Essentially, nothing has changed except my feelings of defeat are far more pronounced. 


It is the moments like these that I realize that even though I thought I had lost my hope with her, it was there, hidden away in a small space in my heart and mind, hoping to prove the majority of my heart and mind wrong.  In the end, all it does is leave a pain in my heart, a fog in my mind and it solidifies why it is I really dislike everything that surrounds the word "hope". 

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Tuesday, July 4, 2017

Becoming accustomed...

Whenever Sonzee goes through months of multiple daily seizures I do get numb to them.  Some of them bother me more than others, but overall "I am used to them".  I feel like when I say that to people I genuinely believe it.  Seizure are part of all the amazing offerings of CDKL5, well really it is more than that, THEY are the essence of CDKL5 at its core.  However, it is not until Sonzee experiences a break in her seizures and they return that I realize how much I was fooled into thinking I was/am used to them.  I guess I was not aware of just how talented my brain has gotten in constantly shielding me.  

I have watched this little girl seize since she was a newborn.  I have seen her body move in ways that are just not normal.  I have seen so many several types of seizures that my descriptions typically involve some morbid explanation that leave some of her doctors uncomfortable, but they at least understand what her body is doing based off my words.  I always try to accompany my descriptions with a video, but it is obvious that even the professionals find it uncomfortable to watch.  Which makes me realize just how not okay this situation is, no matter what my brain tries to convince me of.


There should not be any parent who must "get used to" witnessing seizure activity in their child.  This should NOT be an effect of a disorder.  My brain should not have to find a way to cope with this.  It just should NOT be.  I do not think I will ever understand why the hallmark of a CDKL5 mutation must be the most volatile atrocious experience you can possibly watch your child go through.  My brain clearly has limitations with its capability of comprehension in this department.  I guess I will just have to give it a couple more days and I will be back to the state of numbness that I get accustomed to and prefer.


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Monday, June 26, 2017

Creativity and Epilepsy: Educating Children Who Witness Seizures

This post is part of the Epilepsy Blog Relay which will run from June 1 through June 30. Follow along and add comments to posts that inspire you!

Seeing a seizure no matter how many times they occur and no matter the age of the bystander, can be extremely traumatic depending on the type of seizure a person may be experiencing.  It is a delicate situation to tend to the person who is experiencing the epileptic event as well as comfort those who are witnessing everything unfold, especially when there are children involved.  As a parent, when you have a child with epilepsy who has young siblings you have to be very creative in how you handle all things related to seizures.  This includes conversations regarding seizures as well as when/if it comes to watching the episodes themselves.  

Being that Sonya began having seizures within one month of her life, they were less noticeable to others, however, Sonya is 5 years, 3.5 years, and 21 months younger than her older siblings, which means they were extremely young the first time they were exposed to seeing a seizure.  At the beginning they honestly did not notice one was occurring, but eventually as the seizures got longer and more intense, her siblings became more aware.  As parents, Sam and I did not want to scare our older children, but it was important they be aware of what a seizure looked like so if necessary they could inform us if they saw it occurring first.  For example, Sonya's car seat faced our then 5-year-olds and so while driving she would occasionally tell us "Sonzee is having a seizure".  There have been false reports, however, more often than not, the reporting is accurate and a huge help in beginning to comfort Sonya, both verbally, and for her sister who sits right beside her, physically.

There have been times when the seizures are just too overwhelming for us to want our older children to be around, regardless of how helpful they can be, and so we have to be creative in how we distract them.  Sonya went through a time when she required oxygen during the end of her seizures and for some time following the episode.  When she would begin her seizure typically another person (unless we were alone) would go and grab her oxygen and begin too hook it up to her.  For the majority of the time we were able to distract our older children by having them go and play in another room or go have a dance party, but once or twice our oldest would stop in her tracks and look at us placing the oxygen cannula on Sonya and ask if she was going to be alright.  We could tell she was scared and so we explained that Sonya was having a seizure and it was alright, but that sometimes extra air is needed to help people breathe.

Children in general can "make light" of many situations, and this includes seizures.  They can see someone making funny, weird, awkward, dramatic, and fast movements with their bodies and can think this is something to imitate.  At a young age it was extremely important for us to emphasize to our children that seizures are never anything to be made fun of and what is occurring to a person who having one is not pleasant, is not funny, is not weird, is not comfortable, and is by no means a joke.  It is also extremely important to balance sharing this information with young children in a manner that does not scare them, but does emphasize this is a high magnitude situation that should never involve laughing.

While Sam nor I are perfect in the ways we have chosen to be creative with our older children in regards to educating them on seizures, here are some ways we found helpful with our older children and their exposure to epilepsy.  We are not expressing that every parent should follow these ideas nor is every parent going to want their child to see a seizure, however in a lot of family situations it is simply impossible to prevent a child from witnessing a seizure, so it is always better to be as prepared as possible.

1. Talk and explain to a child who is watching the seizure what is happening to the person experiencing a seizure-reassure them that even though it looks extremely scary the person is going to be alright
2. Answer questions that a child may ask regarding watching the seizure
3. In general keep the lines of communication open between the child watching the seizure and the adult supervising
4. Be aware of the child who is watching a person have a seizure-are they are uncomfortable? are they scared? do they need to be distracted?
5. If another adult is present have them take other children in another room in a calm manner asking them to show them where an item is, or to go read a book, or have a dance party
6. Have older children help time a seizure or feel like they are helping you or the person having a seizure
7. The priority is on the person seizing, however, if seizures are routine and the person is stable, make sure to remain calm (always good regardless) and try not to scare the other children who are around


NEXT UP: Be sure to check out the next post tomorrow by Sarah Collard at livingwellwithepilepsy.com for more on epilepsy awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com.

Don’t miss your chance to connect with bloggers on the #LivingWellChat on June 30 at 7PM ET.

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Sunday, June 25, 2017

....life with CDKL5

It has been 13 days since my last blog post.  It is not that I have not wanted to write anything, it is more I just do not feel like I have anything new and/or worthwhile to share.  Things are what they are.  Neither great, nor bad, just what they are.  I suppose overall that is a good thing, but it does not support writing a blog post.  I feel like in the two years I have been blogging, I have already written about most of the same topics that are now on my mind.  The same things happen repeatedly.  There is not much new in the world of CDKL5 and how it has affected Sonzee, and so I feel like I have no new insights to share.  

Life with CDKL5 for me is a life on repeat.  There is the same heartache of CDKL5 sibling losses, lack of milestones achieved, and obstacles to overcome.  There is the same amount of joy felt for the Sonzee-stones accomplished and wishes for her future.  There is honestly a little less emphasis placed on hope, but that is probably due to me being a pessimistic/realist in general and not so much due to the events of the last two years.  Although the past two years have definitely stolen some positivity from my general outlook and beaten me to the core.  Sonzee's health is stable and so we are thankful for that, but that does not hide the pain she experiences daily or the seizures/spasms that come and go as they please.  


I have been spending a good majority of my time these past couple of weeks living in the land of denial and excuse making in terms of Sonzee's seizures and pain.  To be honest, sometimes that place is a comforting place to be.  I will probably do as I usually do when I enter this zone and hide out here until I enter the good old panic mode of desperation that this will inevitably lead to.  Until then I will just carry on, praying things remain calm while we are in New York, and praying for the families who have children with CDKL5 who are in the hospital, just being discharged, or who sadly just gained their wings...because this is life with CDKL5.

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Monday, June 12, 2017

Becoming aware


I prefer to do positive style posts because that is how it's best for me to deal with all things CDKL5.  The past week and a half I have spent each morning deciding which fact I would be sharing about life with CDKL5.  My goal is always trying to balance shedding light on some of our hardships while also putting a semi positive spin.  However, almost two weeks into this CDKL5 awareness month and it's safe to say it makes me more aware of just how tough life with CDKL5 is.

Over the weekend I wanted to share a fun fact or two about CDKL5.  I wanted to capture little bear completing some challenging task that requires her a bit more effort, or her sitting and being happy/content like a lot of other children with CDKL5 mutations.  I just wanted to share a picture of her adorable little smile, or maybe even capture a laugh...but none of those things happened.  So I skipped posting.  It's one thing to go on with our days experiencing each one of them as they come, but it's another to realize that things aren't so great.  I guess I don't give it much thought as a whole, but wanting to write a post makes me have to "accept" what exactly is going on.  

Sadly a typical day for Sonzee begins around 6:30am with her crying.  It takes Sam and I multiple guesses and attempts to calm her before she calms for a bit either in her bouncer, chair, or with some cuddles.  The calmness only last temporarily and then she's back to her cries and screams.  The rest of the day is a gamble of how much she will cry or be miserable.  The majority of days she spends clearly uncomfortable and so we spend the majority of our time trying to figure out what she is telling us so we can fix it.  We usually fail miserably and eventually we give up.  We change her position all day, give her cuddles, the kids attempt to play with her and entertain her- it's usually a major fail.  Eventually it's bedtime and thankfully she sleeps at night or occupies herself quietly in her crib.  Then we get to experience our own real life Groundhog Day on repeat...every day.

It's been challenging to adequately represent CDKL5 for Sonzee and be respectful of what I would think she would want me sharing as far as pictures and her day goes.  I guess this is the whole part of spreading awareness.  Letting others know they aren't alone if their child who has a CDKL5 mutation isn't always smiling and happy and reminding me that it's okay to be angry about the fact that this is the life of our two year old.

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Tuesday, June 6, 2017

Pause

In approximately 12 days we leave the oven we call Phoenix and head east for the summer.  I am pretty sure the timing couldn't be any better as I am beyond ready for a break.  It is different than needing a Starbucks run or getting a manicure or pedicure.  It isn't the same as wanting to go away from the kids for a night or two.  No matter what we would just be relocating to different scenery, we can't really escape the life we are living, and to be honest I don't want that either.  The way I look at our summer break is that we get to press the pause button.

I am ready to spend two months with limited distractions from the kids.  No (planned) doctors appointments, no therapy appointments, no waiting on hold to nag a distributor because we have been waiting a ridiculous amount of time to receive an item that we were assured we were getting weeks earlier.  I am ready to not have to sync calendars and organize a schedule.  I am ready to not have to wonder what creative rejection Aetna will send us in the mail for an item they have been covering for months on end, but randomly decided they just aren't in the mood to cover it any longer.  I am ready for an actual real life distraction.

I am ready to reconnect with those friends who I follow on facebook and see their adorable family pictures, but whom there wasn't enough time to actually talk to over the past 10ish moths. I am excited to see how our decision (okay, it was really just mine) to drive this year with four children seven and under pans out (this really should be some fantastic fun (sarcasm and honesty included).  I am ready to be surrounded by greenery, mountains, and farms that are tucked away from the hustle and bustle.  I am ready to not have time commitments other than times to drop off and pick the kids up from camp (which Sonzee and I can walk to to achieve and hopefully be on time too).

The last 10 months have been tiring, chaotic, daunting, and waring.  I am ready to get some renewed strength, some umph, and refill my energy tank to full to make it through the 10 months that will follow our homecoming in August.  I am so grateful that we are able to relocate for the summer and get away because I am so beyond ready to hit pause.


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Friday, May 26, 2017

Never ending with GI....

If you have been following Sonzee’s journey for a while now then you are probably aware that her biggest battle has always been her gastrointestinal system.  Since she was six months old she has battled with gaining weight and from trying to solve that issue we found ourselves on a downward spiral in the land of GI.  We started by having a gtube placed, thinking that would solve the problem, but we all know that did nothing to help.  From that point onward it has been a constant battle of trying to keep her health and keep her comfortable, lately, both I feel we are failing with.

When she hit rock bottom last May we had no choice but to start her on TPN (Total parenteral nutrition: Intravenous feeding that provides patients with all the fluid and the essential nutrients they need when they are unable to tolerate anything into their stomach/gut).  We transitioned from TPN to intestinal feeds that went through an NJ (naso-jejunum-from her nose into her intestines).  A lot of people assumed her tube in her nose was going into her stomach, but it was actually bypassing her stomach and going into the 2nd part of her intestines.  The thought or hope (if you will) was that her stomach would miraculously turn back on and we could get her off the intestinal feeds.  A year later and this has proven to not be the case (I am honestly not the least bit surprised).  When she was finally big enough, we had the NJ removed and they added in an extension to her stomach tube, which is what she has now, and it is a GJ tube (goes to both stomach and intestine).  We only use her intestinal port except to open the stomach side to let out excessive air in the hopes it will make her more comfortable.

She has had various tests performed on her GI system, besides showing she has extremely slow motility (movement of her stomach and intestines as far as processing food and moving it through the system), they all always come back “normal”.  She has spent most her days over the last year miserable, in pain, and uncomfortable from her feeds.  We cannot turn them off because she needs to keep hydration, we cannot run them any slower because she needs to keep hydration.  We are stuck, grid locked by the way her body interprets typical bodily functions such as gas, digestion, and bowel movements.  She was diagnosed back in November with visceral hyperalgesia, which is the term used to describe the experience of pain within the inner organs (viscera) at a level that is more intense than normal.  A diagnosis that gets her nowhere but to take another medication that does nothing to relieve her symptoms. 


I have reached my breaking point with these GI issues.  Her doctors tell me they have done everything they can do.  I agree that they have tested plenty, but I do not agree that there is not some option out there that would be a better answer for her.  We have an appointment with her palliative care doctor next week because her quality of life is far more important to me than the quantity.  She CANNOT be this miserable any longer.  It is beyond disheartening to watch her suffer daily.  There must be some solution besides “dealing with it” and another medication that only appears to be a solution but in reality, does nothing long term.  I am hanging onto a small thin thread of hope that we will reach some sort of resolve next week, whatever it may be…but let me tell you, after the past two years it’s really challenging to believe we will find a winning solution.

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Tuesday, May 23, 2017

Missed out moments

For those of you who I know personally and were able to view Sonzee's (as of 8 hours and 59 minutes ago) now four year old sister slather lotion all over herself and her bedroom, I hope it provided you a decent bedtime laugh.  For those of you who were unable to view the video, it went something like this.  I went to get a t-shirt out of Sonzee's sister's dresser and noticed she was not in her bed, but instead there was a lotion container extremely messy along with her pillow, sheets, and blanket.  I summoned for her and she came back into the bedroom from the hall bathroom, which I had just walked by, but somehow missed seeing her.  I asked her why lotion was all over bed, and then I noticed it was all over her body, her clothing, her hair, the floor in footsteps...it was EVERYWHERE.  The only thing I did besides ask her what she was doing was call for Sam to come to her room.

While she burst into tears explaining she was extremely itchy all over her body (she has bad eczema) she noticed Sam and I were "holding back" our laughter and so she calmed down.  We of course had to document this moment to look back on as the years pass by as her final hoo-ra of an event as a three year old, and so we recorded the outcome of lathering her body in Eucerin cream to combat her itchiness.  The video goes onto to show her telling Sam it was in fact me who put the lotion all over her and then she gave her signature "get out of jail free card" grin indicating that maybe that really was not the case, but never fully admitting it was in fact her who placed the lotion on her body and the contents of her bedroom.  The video ends with her saying next time she will ask for me or Sam to come and put the lotion on.

After giving her another shower, changing her sheets, and rubbing the lotion off of her furniture and the floor I became a bit sad thinking about the fact that Sonzee won't be able to pull off these types of shenanigans.  These are the moments that unfortunately don't permit themselves in the special needs world, at least not the one Sonzee is in.  Even if she has the desire to do so, she lacks the motor planning and actual physical capabilities of pulling off such a fete.  She is unable to climb out of her crib, grab a lotion container, sit back on her bed and attempt to relieve her itchiness or whatever else a toddler is thinking in their mind.  She cannot rip out pages of a book, get construction paper and attempt to write her own book using the spine of the original.  She cannot sneak into the kitchen grab candy and "drop itself into the stomach without tasting it".  These are just childhood achievements she won't ever get to participate in.

It is moments like this one that are bitter sweet.  Maybe I only appreciate the joy, creativity, and overall fantastic humor of these events because we have a Sonzee.  There was honestly no getting mad or even annoyed, there was definitely an element of surprise and shock, but I was more in awe of her desire to handle the situation on her own and choosing to do so in that manner.  One of my most commonly thought and uttered parenting phrase is "what were you thinking?" and my favorite part is hearing each of my children's replies. However, without their specific replies the event in and of itself is usually momentous and does not require an explanation, so it just sucks we won't get these types of moments with Sonzee.

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Wednesday, May 17, 2017

Keeping the faith....



Lately I have been really struggling with the whole concept of having faith.  It is hard for me to keep hope and be optimistic when I feel surrounded by not only Sonzee, but other little children trying to battle incurable disorders and diseases.  I realize it is during these types of times that I should feel the magnetic pull to G-d to place my fears, frustrations, and questions on him...but for some reason, I just cannot.  I am unsure if it is because I secretly believe I have some sort of control of how anything in my life is supposed to go and "having faith" admits that I am relying on something other than myself, or am I afraid that having faith puts me in a vulnerable position to be extremely disappointed with the outcome?  

The biggest challenge with my ability to keep faith is that I feel like for the past two years I have been relying on my faith to get me through and I continuously feel "let down".  Maybe that is not necessarily fair considering how many times in the past two years Sonzee has scarcely made it out of various situations; but truthfully, it just feels like it prolongs the war and has not really gotten us completely out of the trenches.  I do not even believe being told we are "in the all clear" is at all possible with a diagnosis like CDKL5, but it just continuously feels like we are being lifted up to crash back down.  Am I feeling this solely because my faith is wavering?  


When we have been faced with situations I try to look, focus, and believe in what the best-case scenario might turn out to be...and the majority (if not every time) that is never how our reality turns out.  It becomes an arduous task to continuously set myself up for the potential disappointment, which to be honest in our case is typically not potential but actually, more likely.  If there is a "rare" complication/side effect, you can bet money that it has Sonzee's name on it; complications that are even rare to other children who have CDKL5 mutations.  27 months of watching my baby girl suffer has drained a lot of my faith and I am desperately trying to not lose it all, but every day it is becoming increasingly difficult. 

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Sunday, May 14, 2017

The evolving role of Mother's Day

From the time I was a little girl I have wanted to be a mom.  I couldn't wait to grow up, get married, and have a baby of my own.  When Sam and I first got married I (naively) thought that it would happen just as I had dreamt.  The first 9 months of our marriage turned out differently than I anticipated as month after month I cried never seeing one positive pregnancy test.  In May 2009 when Mother's Day came around I was so overwhelmingly excited for my friends who had been or would shortly be blessed with their new titles of mom, but equally heartbroken it wasn't my turn.  Sam bought me my first Mother's Day card with words of encouragement, but my heart was shattered.  Within weeks of that "first" Mother's Day I found out that my dream would be coming true.

In 2010 I was beyond fortunate to celebrate Mother's Day as a mom of a beautiful baby girl, my dream finally complete.  In 2011, I was not only a mom to Laeya, but I was pregnant with our second child.  I was so beyond excited to celebrate that day, but my heart broke for those who were still struggling to build their families.  I felt so fortunate to be where I was.  By 2014 I would celebrate Mother's Day as a mom of three, and by 2015, a mom of four.  The day always amazing,  but that year was my first time with the title of "special needs mom".  At the time that specific title was new and had little meaning to me, but as the years continue on the uniqueness of that title plays a bigger role.

By the end of the summer of 2016 Sam and I were surprised when we found out we were expecting baby #5.  We were surrounded by fear and uncertainty rather than the typical burst of excitement.  We were scared and unsure. What if the baby wasn't typical? What if the baby had special needs?  What would people think that we were chancing fate?  By the beginning of October those fears were unnecessary as we didn't see or hear a heartbeat, we experienced our first miscarriage.  We were both "at peace" not being faced with needing to make challenging testing decisions or playing the "what would we do if" game, and we felt thankful that G-d intervened how he felt necessary.

Today is Mother's Day 2017.  I am so honored to celebrate being a mom to four amazing children I have been fortunate to meet, yet today is the first day my heart hurts in a different way.  Based on my previous pregnancy experiences and my due dates, I would be holding or about to be holding baby #5.  I wonder if my son would have a brother or if he would still be the prince of the castle.  I wonder how I would manage being a mom to Sonzee and a baby, and I wonder how amazing it would be for Laeya to be the biggest sister of four.  I think about how fortunate I am that today I can snuggle my four awesome children because there are so many beautiful mom's I know who are unable to do that, but today is the first day I have given this topic enough thought to be sad the number isn't five.

Mother's Day to me isn't about being spoiled or wanting to be appreciated more than any other day.  It isn't about what gifts I get or if Sam was able to get to the store last minute to pick me up a card (that I honestly could live without).  For me, Mother's Day is about honoring what it is to be a mom and learning how to adapt to the various titles, curve balls, and ever changing roles that come with being a mother.  Today is one of those reminders of how mothering can be done in so many different and beautiful ways.  So if you are a pregnant mom, a mom to a child you didn't birth, or one you had to or have to share with someone else, a physically living child, a healthy child, a sick child, a child you never got to hold in your arms, or to a child you are no longer able to hold in your arms, today and every day you should be honored to be a mother, and I wish you the happiest of Mother's Days.

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Thursday, May 11, 2017

it will be...

I feel like there used to be a time when I could undoubtedly say to someone "things will be fine".  I do not remember second guessing the words or ever really giving it an extra thought of whether the outcome would actually be "fine", because of course it would be.  Everything works out...until it does not, and then you realize saying "everything will be fine" may not actually set a person at ease, because no, things may not be.  There used to be a time that my neurotic parenting fears were based off reading blogs of parents going through horrific battles, or having a friend of a friend experience something rare and challenging with their child.  Then one day, two years ago I am the one who began blogging.

I wish I could back to a time when my fears were completely irrational instead of them being because I am parenting a medically complex child who has changed the way I parent all my children.  I wish I could go back to a time when my brain would interpret ailments for what they were instead of everything turning into a code red/worst case scenario.  I wish I had not let this life get me so jaded.  I know there is always hope for the best, but I struggle believing the outcome will be "fine". 

It is a hard place to be stuck in between wanting to believe "things will be fine", reality, and things actually turning out to be fine.  I find myself holding back telling others things will work out and then I wonder if that is helpful or not.  I know people have to have hope, but I feel like it isn't my place to reassure someone when I honestly do not know...will things be fine?


I do believe everything will be the way it is meant to be, but no, I do not always feel things will always be fine.  I do however believe no matter what it is, you will be able to handle it.

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Friday, May 5, 2017

No longer a baby...

We got up and went to the airport yesterday like we have done many times with Sonzee in tow.  We even managed to get there early (yes, even we are capable of doing that on occasion- we just try not to make a habit of it).  We got through security in our usual amount of time with the typical pat-down and analysis of all the supplies we bring for her.  TSA at Phoenix Sky Harbor is always amazing to deal with and we never have any problems, things just take time.  The truth is, no matter how prepared we are, how accommodating everyone is, or how smoothly the process goes, traeveling with a medically complex child is still extremely hard.

Yesterday was the first time we flew with Sonzee in her convertible carseat, in the past she has been in the infant carseat, so of course, there will be a new learning curve.  We were the third in line for preboarding (Sam and the kids came with us) and we were the reason the plane was four minutes late departing.  I will let that sink in with you for a bit.  It took us the entire time of the boarding process to get her carseat installed correctly and we ended up having to forward face her because the distance between the seats would not allow for the proper recline with her seat facing rear.  Yes, Sonzee's one famous skill is her head/neck control, but it is nowhere near what a typical two year old's ability is or should be.  No matter the various supports I tried, her poor neck was flopping forward.  This was not ideal.

When we finally got her situated, the plane pulled back from the gate.  During the chaos of boarding, the pilot (who actually helped carry our bags onto the plane) placed Sonzee's medical bag in the overhead bin while we organized to make things easier and I never had a chance to grab her VNS magnets in all the chaos.  Naturally, it made sense that during our exact pull back from the gate she would have a seizure and her magnets would be out of my reach.  Again, thankful for being with amazing care, we pressed the call button and the flight attendant more than happily grabbed her magnets and checked up on us multiple times within the 6 minutes it took for us to get to the runway to ask if we were okay to take off.

Thank G-d for the amazing staff at Southwest who never once said anything negative, did anything to insinuate we had to rush and were overwhelmingly supportive during our entire experience.  Like I mentioned previously, this all helps, but the fact is this traveling gig is not what pleasant dreams are made of.  We have medical bags complete with essentially a portable hospital; a pulse oximeter, portable oxygen concentrator, feeding pump and supplies, medications and supplemental supplies that go along with her VNS, not to mention the various other supplies that come with having a toddler who is essentially still a baby.

I guess I had not really considered that traveling on a plane as she got older would be significantly more challenging.  Even with her being in the 2% for weight and height I didn't even bother changing her in the small little fold out table in the bathroom because she is too long.  I think the reality is setting in that we are no longer traveling with a baby, we are traveling with a child who has special needs.


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Monday, May 1, 2017

It's been busy

Life is busy.  It isn't busy in a bad way, just the typical chaos of having a family of six and the school year winding down, doctors appointments, extracurruicular activities, and getting ready to head to Florida in a couple of days for a family event.  I try to do posts two to three times a week, but each time I opened the screen to write something over the past week, I ended up just staring blankly at the screen.  So much going on, yet nothing I really want to write about.

We are traveling again on Thursday this week and we have (thankfully) chosen to fly Southwest.  I am not really that worried as our typical experiences with them have been nothing but amazingly accomodating and the one small glitch we had was not with any member of the airline, but just disgruntled passengers.  So I am hoping to report only good things.  This will be her first time flying with her VNS, and I am slightly excited to show them her little card.  We have never had issues going through security with her feeding tube connected or with her supplies, so again, I am not worried, but it is always a little anxiety filled leading up to the actual experience.

We have an official start date for the construction we have been planning for the past two years.  We begin demolition a week from today and it will probably be 4-6 months until everything is completed.  I am extremely excited to be getting a garage so that will make getting Sonzee in and out of the house much easier.  We are also giving her her own room in our master bedroom which will be great for everyone.  It sometimes doesn't really process in my mind that we have a two year old toddler sleeping in a crib right next to our bed.  While we have decorated her small little corner with her name on the wall, and she has almost an equal amount of furniture in our room as us, I am sure she will appreciate her own space.  The best part of her new room is that it is literally a wall seperating her from us, but it won't add any additional time in getting to her quickly.

The other main event that I have slowly been getting ready for is our trip to New York for the summer.  It will be nice to not be home during the invasive portions of our construction, and it will also be an amazing retreat for us.  I am really hoping Sonzee's tube issues have been sorted out prior to us leaving because the nearest children's hospital will be 2 hours away and I would  prefer not to get on an email correspondence basis with any doctors there.  We were extremely lucky to have an encounter last summer with a doctor who works at the pediatrician's office, so hopefully if she requires anything at all, it will be the basic lab work and quick/easy fixes.

Seizures unfrotunately have not improved, but we are hoping once we start to amp up her VNS on Wednesday that will change.  We are also going to be weaning her of her medication, as the VNS will take the place of hopefully preventing status epilepticus, it is a fancy term for saying a nonstop seizure state.  If you click on the link you will notice more recently they term "status" as a seizure lasting longer than 5 minutes, and Sonzee's always last 5 minutes so we are basically concerned about one that might not stop after a rescue medication was administered.  There is no way to prevent it, nor do they really know what causes it, but it is definitely more common in patients like Sonzee who have uncontrolled epilepsy, so we like to keep her "armed" in a sense with at least seizure fighting modality.  We would just prefer to not have the side effects of these medications that are clearly not helping her seizures at all.

I will hopefully post a blog or two more this week.  Thank you all for keeping up with Sonya's Story.  I am happy to report that we will be sending off our contribution to UCSan Diego to help store Harper's cells within the month.  It feels amazing to have raised $5,000 to go towards this cause.  Thank you to everyone who has donated so far.  If you haven't checked out the awesome perks, please be sure to visit: Sonya's Story: Feeding Harper's Cell Line.

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Tuesday, April 25, 2017

Reminders

When you find yourself living a life with a special needs child, things that were once "unimaginable" become part of your daily routine, so much so, that your typical does not seem so atypical...to you.  Then almost randomly you have these "aha moments" where you realize just how not normal your life, your family's life and your child's life has become.  For me one of those series of "aha moments" came while preparing for and during our in-home district nursing evaluation to see if Sonzee qualified for nursing respite vs standard respite.  

It is not that I am at all shocked or surprised she qualified for the nursing part of respite.  I am more slapped into reality over the fact that her seizure log from January 25 includes 124 seizures and those are not counting the ones that happened while she was in the PEMU or in the last 16 hours.  It also does not include an exact count of spasms/multiple seizures that can happen during a 5-7-minute event, it is simply representing the number of episodes she has had in the past 3 months.  The fact that this is our normal, our "no big deal" does not faze me daily.  We do not bother with rescue medications because they will not do anything positive for her long term, they will only make her dependent, so our "comfort" is 15-21 minutes a day of her seizing.  I honestly do not even process that the seizures themselves could render lifeless, it is as if the entire concept of what a seizure actually is has fallen on deaf ears.  I am pretty sure this would be a proper time to insert the confused emoji face.

I think about the children and families of CDKL5 children who have lost their lives often, but I do not let it consume me or I would be unable to function.  Then suddenly, the news spreads that another child's body just could not compete with the challenges of a CDKL5 mutation and it becomes all too close to home.  The distance of that reality is no longer so far away and the weight of what Sonzee is dealing with on a daily basis is thrust into the spotlight.  Living with a CDKL5 mutation is not just dealing with developmental delays and seizures, these children are literally fighting just to survive daily.  I guess I forgot that?


I do not know what is the "safer" way of living this sort of life.  For me it has always been best to keep the fear and reality in the distance but aware that we are not immune, however, on the days these reminders float in it takes a lot of strength to remember to breathe.   


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