Saturday, December 31, 2016

2016

As I sit here with just two hours remaining in 2016 I am left wondering (yet again) how another year has flown by so quickly.  I swear each year the days must shave off a minute or two at a time because I remember writing my 2015 post like it was yesterday.  Another chapter of Sonya's Story is coming to a close as a new one is just beginning.  Similar to last year, as I sit here reflecting on the months that have passed I am unsure what to make of it all.  The year of 2016 has left me with memories to cherish and ones I wish would not be etched into my mind as if it was stone.  2016 brought about many new introductions, emotions, and experiences as we continue to navigate through the world of special needs.  It was also a year of tremendous loss for our CDKL5 family, and maybe 2017 will not bring the same nightmares to any of our families.

2016 was a year of learning the ins and outs of the gastrointestinal system.  In addition to Sonzee's battle with seizures, she spent the majority of this past year simply trying to maintain nourishment and battle being failure to thrive.  We learned about alternative methods of feeding such as Total Parenteral Nutrition (TPN), a Gastrostomy tube (G-tube), and a Nasojejunal tube (NJ) all of which would ultimately save Sonzee's life and maintain it.  2016 brought about the labels of gastroparesis and small bowl bacterial overgrowth, which now have her on daily antibiotics to restore the good gut bacteria.

For seizures 2016 brought about hypsarrythmia (an abnormal interictal pattern, consisting of high amplitude and irregular waves and spikes in a background of chaotic and disorganized activity seen on electroencephalogram) and infantile spasms, resulting in 2 months of a high dose steroid treatment and side effects that were horrific and some she will likely never outgrow.  2016 introduced us to various formulas and diets and brought about a brief stint on the ketogenic diet, which we learned, was not beneficial to combating her seizures.  Thankfully, after multiple medication and various medical marijuana trials, we found Sonzee's magic seizure combo (for now) of Sabril and RSHO hemp oil.  She continues to remain seizure free 71 days 8 hours and 26 minutes.

In 2016, Sonzee encountered her most hospital admissions (6 times) and longest lengths of stays at a hospital (28 days), countless bouts of viruses, colds, and infections, and longest consecutive time spent on antibiotics.  Sonzee spent too many hours in pain and uncomfortable for me to want to remember.  Overall 2016 was not a healthy year for Sonze.

2016 was the year Sonzee's CVI (cortical vision impairment) improved from a 2/10 to 6/10, and she received her first pair of glasses.  While there are no huge developmental milestones for little bear, her core strength has improved tremendously and the bottoms of her feet have some resistance when they are pushed against.  She continues to roll in both directions and she is able to grasp hanging objects and hit them.  With the gains she has made this year there is no saying where she will be in the year to come.


As 2016 comes to a close, I am left with immense gratitude that Sonzee is able to physically welcome 2017 with us, because there are too many mothers tonight not afforded this opportunity.  To all of those whom I know, my heart is thinking of you and your baby's tonight.  2016 is not a year I wish to repeat, but as I sit here tonight, I am filled with a renewed sense of strength and hope for where 2017 will take us and I look forward to this chapter of Sonya's Story and hope you come along with us. 


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Wednesday, December 28, 2016

It is what it is...for now

It's been 22.5 months since Sonzee started us on this unique journey of ours. It didn't start out as a special needs lifestyle, just as a "sick child" journey, but quickly turned into one.  Along the way my relationships with others have changed and I assume they will continuously.  Having a special needs child does that.  It pretty much takes the life you were living and thought you would live and exchanges it for something...different.

It is a weird place I have found myself in.  I want to have friends who have typical children in my life, but some days I don't want to see all of the "normal" parenting issues.  On some days it takes a special amount of strength to be empathetic to a friend who only has typical children.  It's also challenging to maintain relationships with others who don't have a medically complex kid because no matter what they just don't understand our position.  

On the other hand, it is suffocating to live in the land of medically complex.  There are only so many times my brain can process a child's death or the detrimental way a common cold can impact a child with complex needs.  I cannot be sane if all I am exposed to are the negative realities of sick children.  Yet these moms are the only ones who do get it on all levels.  We may not have children with the same conditions, but we all understand life in a different way than prior to what we live now.

I continue to see my Facebook feed fill up with brand new healthy babies, I am so happy for my friends, but I also wonder "why us?"and "What would our life look like had Sonzee been born without the mutation?"  I am not jealous in the sense that I wish Sonzee wasn't Sonzee, but I do have days of resentment.  Maybe that makes me a bad person?  Maybe over time that will change?  For now I guess, it is what it is.


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Sunday, December 25, 2016

Aha moment

As Sonzee continues to get older we encounter new experiences in a special needs world that we honestly never gave much thought to prior.  Sure I've seen handicapped restrooms and of course the parking spaces.  I never personally considered these to be "conveniences" to those who need them, but there are times now that I definitely consider them a perk.  A consolation prize if you will.  The thing is that while there are these "prizes" there are the obstacles I never once considered.  

We boarded our flight to Florida this morning and I recently realized that we could take advantage of the pre-boarding option with Sonze.  The added benefit of her medical supplies not counting as a bag would have been spectacular except that we flew southwest, so all of our bags flew free regardless.  Nevertheless, I consider that in the future to be a definite plus.  The flight was actually amazing, all children earned gold stars and Sonzee played in her seat and occasionally took little naps, a perfect traveler in my book.  During the flight I decided to change Sonzee's diaper and so feeding bag and all, we made our way to the back of the plane.

There is one restroom that has an infant changing table..."table" is honestly being kind as its really a 16 x 20 plastic fold out tray.  While Sonzee has grown, it's one of those times I am actually thankful for her "Failure to thrive" diagnoses.  In the small confined space is when it dawns on me, "what do we do when she's bigger?"  I step out of the restroom and ask the 3 flight attendants in the rear my question, "My daughter has special needs, what do I do when she isn't able to fit on the changing table?  Are we not able to fly anymore?" (There was no sarcasm in that last part) All of them gave me puzzled expressions while admitting it was a great question, but they honestly couldn't give me a straight answer.  One suggested the floor, while the other said "maybe in a row".  My next question, "is it even allowed to change a child in the seat?".  The conversation ended with I should call southwest, but that it was a great question. Yay?!?

Sometime later one of the flight attendants came to me and gave me phone numbers for the disability department.  I am honestly preparing myself for them to tell me that at a certain point changing a diaper mid flight will no longer be an option for us so we should consider smaller flights or connections.  It's during these more "aha moments" that no perk of this life is actually a perk.  It's all just heartbreaking.  It isn't even about the fact that she won't be potty trained for a decade or if for her at all.  It is just a reminder of all of the challenges she and therefore we will face as she continues to get older.  The realization of what it truly means to always have a baby.  The fear, heartbreak, and multitude of emotions that accompany this realization are just a lot to take in.  So for now we will enjoy this trip to Florida and take the future as it comes, but for sure in baby steps.

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Wednesday, December 21, 2016

Tough times...

It's another one of the times while on this journey that I don't dare think "it can't get worse", but rather wonder what exactly it will look like this time.  Whenever the incessant crying begins things always go down hill and rather quickly.  Maybe it is because I am grappling for something to hold onto that makes the fall feel that much quicker or maybe it is just that my patience and ability to cope at this point has evaporated even faster.  This. Is. Hard.  (Yes, I did just write one word sentences)  I never assumed that it would be easy, but I didn't really understand this version of hard.  Sadly, there is a mom reading this with a tear in her eyes thinking..."you have no idea".

This is such a painful journey.  It hurts on a physical and emotional level like nothing else and sadly there is no outcome that could change that.  I cherish the days that are good and result in Sonzee smiles and giggles, just as much as I loathe the ones spent on hours long crying sprees.  It is beyond horrific to have to see her be in such agony.  The worst part is there really is nothing we can do...we are doing everything we can, it is just that nothing is good enough, nothing works for any acceptable amount of time.  I dislike that everything with CDKL5 is trial and error, I want the "tried and true", the "sure thing".  Why doesn't that exist?

I would say "I don't know how much more of this we could all take", but I know that we will take it for as long as we have to and for as long as this is the best it can get.  I just really really hope that a happier alternative will emerge sooner rather than later.


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Monday, December 19, 2016

Blur of a week

This last week has been a complete blur. Whenever Sonzee has an intensive week of therapy the intensity isn't just during the sessions.  She has two sessions a day for five days and they are 45 minutes each, with two hours inbetween the first and second.  The sessions themselves take place in a home that is about 32 miles from our home.  We are lucky to have close friends near the area so I usually pop over inbetween and she is gracious enough to host Sonzee's older sister for a play date with her son on Tuesdays each time.  With the rest of the usual weekly insanity of kids schedules and Sonzee's appointments my ability to have a fully functioning brain at the end of the day is a tall order.  Therefore writing blog posts during those weeks are extremely challenging.  It takes me time to recoupe from intensive weeks, so much so that I can't even figure out what my thoughts are this week.  

There is so much going on with Sonzee that I am tackling each thing individually as if her life is a checklist.  This week she has multiple X-rays to check on a colon marker study that will determine the amount of time it takes for her body to process food.  She consumed 24 little round markers this morning and we will check on Wednesday to see if there are 6 or more remaining. Of course she has been screaming the majority of the time since she has eaten them and she has spit up twice.  I didn't see any markers come out though, so hopefully they stay in.  It has been four hours, I am holding my breath as this is the time in the past that her stomach decides to rid itself of its contents.  It was only an ounce at most of sweet potatoes, so I am crossing my fingers.

We have another two weeks or so for us to decide what we are going to do with switching her NJ tube (nose to intestine) to a GJ tube (stomach and intestine tube).  The pro of switching are that there will be no tube on her face and she already has the G portion, so adding in the J "shouldn't be difficult". The cons list is a bit longer.  Her current NJ tube is an 8French, which means it is very small.  The GJ tube size will be 14French at the smallest size.  With this size the opening between her stomach and intestines (pylorus) will be close to twice the size it currently is opened, which means there is a higher chance of her intestinal feeds backing up into her stomach and causing her to be in pain or to continuously vomit.  We won't know until we try, but once we do, there really is no going back.



In addition to the "typical" cdkl5 dealings we are leaving for Florida for a week and so I am trying to make sure all gifts and supplies are packed and actually remembered.  I am even packing in advance (whoah I know!).  Luckily Florida is still in the US so even if I happen to forget something we should be able to get it relatively easily.  "Lastly", I am also starting to sort through my emotions on little bear turning two in less than 2 months...but I think I am just going to put that on hold for a bit and focus on the next couple of days because my brain is only capable of so much.

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Wednesday, December 14, 2016

CBD and the DEA

As of today the DEA "has made CBD oil a little more federally illegal..." by clarifying and "reinforcing their original position that cannabis extracts, including CBD oil are all considered schedule 1 substances."  While we live in a state that allows for the use of medical marijuana with the  proper licensure and the CBD oil that Sonya uses is a hemp based CBD that imports it's seed and stock from Europe and this clarification might not impact is, it does for many of other children using whole plant products produced in the US. 

Prior to the birth of Sonzee, Sam and I watched a documentary on a marijuana based epilepsy treatment developed by the Stanley brothers in Colorado for a little girl named Charlotte who suffered from 300+ seizures daily due to Dravet syndrome.  I remember watching the documentary and feeling heart broken for the family.  


After Sonya developed seizures and the pharmaceuticals couldn't put up even a decent fight, Sam and I immediately discussed medical marijuana as an option.  Her first neurologist was less than helpful, we decided it didn't matter.  We received support from family and friends.  We didn't need either, but it was appreciated as it made us feel less dirty.  I often wonder why some people might question our parenting choices of using a marijuana or hemp based cbd medicine but don't mind that her FDA approved meds come with huge red stickers with the words HAZARDOUS written on them.

What I would love to ask a person against cbd products for children is simply, are you a parent?  If you are a parent, what wouldn't you do for your child?  If you don't have a medically involved child this next question could be a challenge, but I want you to put yourself in the place of a desperate parent.  YOU have to watch your child suffer, YOU have followed all of the doctors recommendations, and YOU are told that there is NOTHING else they have to offer you.  Are you going to tell me honestly that your religious or whatever values you hold to would keep you from HELPING your child?? 

I would never wish a sick child on anyone, but I do wish there was more empathy amongst our lawmakers.

Please share this post to help spread awareness!

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Monday, December 12, 2016

Less than a year ago...

Less than a year ago I read a post on a fellow CDKL5 child's facebook support page that made my heart race and panic set in.  It was the night that Harper's mom Penny wrote that Harper was sick and that she was in the PICU.  I was so beside myself I didn't know what else to do other than write.  It was the only way I knew how to get my thoughts organized and the only way I felt like I could help because others read my blog posts and that would mean more prayers would be sent up.

At this moment I honestly feel like copying and pasting the first four paragraphs of that post.  I have no better way of expressing my thoughts right now.  Again, I find myself empty and broken.  There is yet again another child with CDKL5 being transferred to the children's hospital, in fact this time it is actually Sonzee's children's hospital.  It started as a fever and what we know is that Sonzee's CDKL5 sister, Lily, is very sick.  My brain is again clouded but this time more so with confusion.  How does a "simple" cold/fever become complex in a matter of minutes.  Why do our girls hide things so well?

I have my usual assortment of emotions; fear, panic, and sadness ranking among the top.  The shock component has sadly dissipated after living 20 months of life with a child who has a CDKL5 mutation.  Tonight my heart is breaking specifically for Lily and her family.  Lily's mom Kim was the first CDKL5 mom who I met in person.  She came to PCH during one of Sonzee's first hospitalizations shortly after her diagnosis.  She sat with Sam and I for a long time.  She is one of the sweetest and selfless people I have ever met.

Again I feel helpless and all I can do is pray for a miracle and hope to reach enough people who will do the same.  CDKL5 does not just take away the ability for our children to do daily tasks; it causes many tears and breaks an unnecessary amount of hearts far too often.  

Please pray for Lily and her family tonight.  Please pray that she can overcome this sickness and that my follow up post(s) will only be good news moving forward.  Please pray for the CDKL5 community tonight as we rally around our CDKL5 daughter and sister, Lily, as well as her family.


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Thursday, December 8, 2016

Tears

A mom posted a picture in the CDKL5 parent support group last night of when her daughter was born with a caption referring to how she wishes she could go back to that time when she did not know about seizures or about what bumps her family might face.  The majority of the replies that I saw agreed with her statement and pictures of beautiful babies filled the thread along with the amount of time the families experienced their individual "ignorant bliss".  I thought for a while about whether I should add a picture of Sonzee, wondering if the reply I was about to give is what others wanted to read, but in the end, I went for it.

After I pressed send on my reply I sat there for a little, reread each comment, and liked all of the adorable baby pictures, and then I could not help it when the tears overtook my eyes.  I never had moments of ignorant bliss.  My older children never got to see Sonzee in a basket next to my bed while we all oogled and ogled over a brand new baby sister.  They never got to take turns holding her while they sat on my bed.  They never got to wear their personalized shirts as I had envisioned while we all gathered around for a hospital family photo.  I cried about that then and almost 22 months later, I am crying about it now.  

The first time her oldest siblings met her it was one on one.  They only allowed two people at a time by her bedside.  They each stood on chairs while petting her head because they were afraid of the tubes and wires.  After visiting her twice, they became sick so they stayed at home.  I spent the majority of her first week getting to know her, but not seeing her siblings.  The challenges for us started right away.  


I always knew something was off a bit when it came to Sonzee.  She would randomly scream and then soothe herself during those 2 weeks we found ourselves at home after she was discharged from the NICU.  Her eyes made questionable movements, she did not have a consistent social smile, and she did not make much eye contact.  She would do little shakes here and there and I would mention to Sam that I thought she was having seizures.  When I look back at her beginning yes I have tears, but they aren't because of how great the times were before the storm hit, they are simply because nothing about how her life has gone the way I planned or dreamed about for my littlest baby girl.

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Wednesday, December 7, 2016

Blurred Boundaries

With my three older children I visit their respective pediatricians one to three times a year and once a year my son has a routine cardiologist appointment.  There has never been an issue with either of them (thankfully) that couldn't be handled by the after hours on call doctor or couldn't wait for regular office hours.  I do not have e-mail access nor private phone numbers for them, but that is okay because I do not need this type of special access.  Then there is the Sonze.  I have emails, cell phone numbers, direct office lines, etc to all of her practitioners.  As a daughter of a medical doctor, I do my best to respect that all of her doctors have families and lives outside of their offices, but as a mother of a medically complex child I find myself worrying that I am crossing the line.

I realize I have this access because I am trusted to not abuse the honor and I really do my best not to, but sometimes I wonder if my emails of "urgency" are overstepping the privileges I have been given.  I wonder if I am being too annoying.  I worry that when my email pops up in their inbox at all hours of the day that they roll their eyes or think about "kicking me off of the team".  It is another dilemma I find myself in learning how to maneuver through this special needs parenting world.

Yet here I am at home with little bear and she is in pain.  Pain that I know is related to her GI discomforts, but yet we don't know why it is occurring.  Her crying ebbs and flows, and she has moments of smiles and joy and then immediately they turn to screams of pain.  The screaming can last four hours on end and the only thing I can do is send an email or a text begging for help.  They always offer suggestions and a plan, and I am appreciative her team ALWAYS replies no matter the day or time, I just hope I am not overstepping any boundaries.


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Monday, December 5, 2016

Battles

It is Monday afternoon and I am exhausted.  It was yet again another sleepless night with little bear and her constant screams of pain.  It is beyond frustrating that whatever remedy we find for her works only temporarily.  Her GI doctor has called in another antibiotic that helps with balancing out the bacteria in her gut and her palliative care doctor has told us to go ahead and increase her Gabapentin for the pain.  The GI and neurological systems are so tightly woven that in Sonzee's case the slightest bit of GI movement sends her nerve endings into a tizzy.  I was so naive to think that if we could only control her seizures that her life would be smoother sailing.

Her life is a series of battles.  Every time I think we have tackled one successfully, another one begins.  There is no time to celebrate and there is nothing it seems that we can do to prevent them from happening.  All of these battles keep continuing back to back and we are running out of supplies, I am running out of energy, and my sanity is on the verge of nonexistence having to listen to screaming and crying for hours on end each day.  It is taxing to keep living like this.  I honestly do not know how little bear does it, how do any of these children do it?

I remember when seizures were our biggest fear and threat.  When I thought nothing could possibly be worse than watching her have multiple ones a day.  I was wrong.  What is worse than watching her have constant seizures is having her be miserable screaming in pain for the majority of the day and night.  It is far worse having her cry and me not being able to do anything for her but just listen.  I cannot fix this.  I won't ever be able to fix this.  All of these battles, and there is no chance of ever winning the war.


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Friday, December 2, 2016

Off the sidelines

I follow a lot of stories of children who have terminal illnesses, developmental disabilities, chromosomal abnormalities, rare genetic disorders, etc.  I try not to become too involved because living a similar life as some of the families can make it challenging for me to separate our life from theirs.  It can be suffocating to see a child dying from a similar disorder as Sonze, and it can be equally challenging to see a child who has been affected far less than her.  So for my sanity, I try to at a minimum show support and pop in because I do genuinely care about each child, but I don't get too involved.

A common theme among all of us special needs parents is the overall feeling of helplessness.  There is nothing I have experienced in my lifetime as unbearable as watching your child suffer but not being able to do anything about it.  You literally have to sit by and watch.  I remember when my first child began to walk and she ran into walls, when she went to the park and I was afraid she would fall.  The feeling is the same,  you know you have to let them learn on their own, but your first instinct is just in and "save" them.  It's similar but much worse when you are watching your child suffer from pain, when you watch your child have seizures, when you watch them deteriorate before your eyes, and I don't want to imagine, but can only assume as you watch your child slowly slip away, and not be able to do anything to stop any of the above.



One of my main purposes of Sonya's Story is to raise awareness.  I hope that all of you understand the reasons behind when I or another parent of a "rare" or sick child asks for donations, asks for you to buy/wear apparel, or bombards you to with pictures or stories explaining their child's condition and overall progress.  For me, it is a way to feel like I am doing my part to not just stand by and watch.  I hope you can put yourselves in my/our position and TRULY KNOW that YOU would be doing the exact same thing.  During this holiday season you might begin to see more campaigns to help support rare disorders or to help a child in need.  You might be asked to support more causes financially or to share posts and information.  This is one way of how we as parents cope with the helplessness.  It is the way we hope to bring awareness and maybe it will bring us a cure.  It is the way we feel like we might actually be doing more than just sitting on the sidelines.  

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Sonzee's Slideshow