Tuesday, March 29, 2016

When the dust settles

One of the first things to occur following a storm is looking around and assessing the damage.  It is only after the rain has passed and the dust has settled that you can truly gain your bearings.  Though the experience of surveying the damage might be one of the most emotional experiences, it will immediately become clear what has been lost forever and with time what might eventually be fixed.  There will be tears of joy at what remains intact and is salvageable, but there will also be tears over the storm itself and the loss that is now present.  It is only after the dust settles that you realize regardless of where the road takes you, you will continue on the journey that G-d has planned for you equipped with new knowledge under your belt and a new sense of HOPE.

The thing about the aftermath of a personal storm is that it is only then that you are able to analyze every moment, every conversation, and every emotion.  It is only as you are replaying the experience in your mind, on repeat, that you fully accept the emotions that you were putting to the side at the time simply so you could survive the storm itself.  It is only after you are picking up the pieces of the situation that you can fully understand and come to terms with what just happened.  I am a firm believer of allowing myself to feel every emotion.  I think it only fair to give each emotion its’ “moment of glory” so to speak, so that I am able to heal and move on.  In this case, I am processing just how close we really were to losing the bear last week.

This roller coaster of CDKL5 continues to bring its’ highs and lows. We have been feeling like we have been at rock bottom of this ride for some time waiting for our time to climb steadily back up to the top.  For all of those times we thought it could not get worse, it did.  We were flying out of control with the wind in our faces, scared out of our minds, hoping the ride would slow down, hoping we could get a hold on the situation.  If I had to pinpoint the beginning of our decent it was the Topamax wean, followed by the Gtube consult, followed by the diagnosis of hypsarrhythmia, and culminating at the failed gtube surgery attempt which led to a rescheduled PEG tube placement that coincided with a high dose steroid treatment resulting in an infection that almost took our little bear away.

I knew something was not quite right two weeks ago, I am glad I stuck with my guns and pushed the boundaries of neurotic mother and concerned mother of a child who has special needs.  Those two egos tend to battle it out on a regular basis.  It is hard to figure out which of those are “right”.  I have decided that they are both equally important and I really do not care what level of ridiculousness I have to go in order to be heard, even if that means playing the “my dad is a doctor card, please speak to him”.  Drastic times call for drastic measures, and this momma bear is unashamed.  This little bear continues to teach me more about myself every day.  We are so grateful she is such a fighter and that she still has a purpose left in her physical body.  Even though there are times that the “King Solomon mother” part of me wants her pain and suffering to be over, the selfish part of me does not want her to go.  It is such an awful position to be in as a mother.  If I were someone else reading this, my response would be “I can’t even imagine what she is experiencing, and I don’t even want to”.  Being that I am the one in this predicament, my response is “I can’t even imagine what I am experiencing, and I don’t even want to”. 


It has been 3 days since the bear is back in our home.  She is back to being clobbered by her older siblings, back to being physically present in our daily lives.  It has been 3 days since this current nightmare turned into one of the best days of the last year. The perfect storm is clearing up, the winds are settling, and I am left assessing the situation.  One of the greatest parts of what follows after the dust settles, is the restored sense of HOPE that you feel knowing that no matter what, even if the ride is not how you planned, with G-d’s help (and some sangria), you will make it. 


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Friday, March 25, 2016

Waterfalls

I can remember back to the 90's when TLC's song "Waterfalls" came out.  I am pretty sure I had a cassette version of their album and had all night slumber parties singing and dancing along to that song as well as their many others.  I have been sitting here this morning thinking towards the future with Sonzee; her constantly changing medication schedule, overall health, and potential seizure control.  The lyrics of the song managed to find their way out of my mental storage.  It always amazes me how much randomness is stored in the recesses of my brain.  Even though this song was not written with Sonzee bear in mind, the lyrics ring so true to me.

Don't go chasing waterfalls
Please stick to the rivers and the lakes that you're used to
I know that you're gonna have it your way or nothing at all
But I think you're moving too fast
It continues to be extremely easy to get carried away in the extreme tidal wave that is CDKL5.  If my worry isn't directly related to seizure control then it is her overall development or health in general that leaves me with questions.  I am always trying to be one step ahead of the potential madness, always thinking in some way I will be able to outsmart it.  I don't know why I feel I am a match for a genetic anomaly.  Biology and science in general has NEVER been a strong suit of mine.  What I know about genetics has only been brought to my attention in the last year.  There is absolutely NOTHING I can do about her condition.  As a parent this has got to be one of the WORST things.  Knowing that no matter what you do, in this case, it won't ever be good enough.  It can leave you in a constant state of panic, a constant state of worry, and a continuous state of feeling out of control.

We are always trying to figure out what the best medical cocktail would be for Sonze.  It is a fine line to balance seizure control with quality of life.  We want to be aggressive to give her the best chance to be happy and develop as well as she can, but at the same time not put her into a medical coma or expose her to too many harsh side effects.  It is a constant state of weighing pros and cons.  It is a constant back and forth of wondering if what Sonzee's current state is, could actually be made better by a "simple tweak" or if we are only going to make things worse.

It can be rationalized that whatever change that is being fabricated in your head is the better one.  It is so easy to do the "if we do this, this will definitely make a difference in a positive manner because what we are currently doing isn't working".  Sometimes you can find yourself so caught up in "Fix it mode" that you can't see that what you have is actually really great. Only after you implement the change do you realize that not all changes are for the best.  Changes can lead to an unexpected and unwanted negative cascade of events that leaves you thinking, "what did we just do?"  I am not one to regret a decision, but regardless of regret, it is still an awful feeling when you think "maybe it wasn't really broken...maybe we shouldn't have attempted to fix it".  I know that in our situation we will always find ourselves faced with these types of situations.  It will be a constant battle within ourselves to figure out the appropriate time to "jump ship" on whatever course of action we are dealing with.  But, it is always good to have a gentle reminder to "not go chasing waterfalls."

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Tuesday, March 22, 2016

Brave

I am not quite sure what my thoughts are tonight.  It is definitely unclear where one ends and one begins.  This whole last week has been quite a blur.  I have been saying for some time that I knew Sonzee's toddler years were going to involve many hospitalizations.  I had an idea that she could very possibly come close to leaving us, but knowing deep down she would fight as hard as her little body could in order to stay.  I had no idea what the reality of these situations would entail.  Oh little Sonzee bear…it is so painful to watch her endure everything she has to.  I am not even sure how much a little body can tolerate, but I can tell you, this little girl is one strong little fighter.

I never fully understood what was meant when people called a sick child "brave".  I never had a sick child, so how could I?  This past year of Sonzee's life and especially the last week specifically has shed light on that phrase.  Since last Tuesday, she has had six IVs.  I have honestly lost track of the amount of sticks her little limbs and head have endured in order for those six IVs to be successful, not to mention how many additional blood draws she has had to have because her veins just shut down.  She has finally received "IV TEAM ONLY" status, which signals to every nurse not to touch her.  Her little veins clot so easily that each time she has an IV placed and they take the initial blood return for testing, the vein no longer gives any blood.  This results in more pokes and more bruises.  There is no location on her body untouched.  Even if the IV "works”, they start to agitate her around 24-36 hours after placement and then I have to ask for a new IV to be placed so she is no longer crying in pain.  It is truly heartbreaking to witness and not be able to do anything.


Thankfully, they started to take her to the treatment room for all of the madness; it will hopefully keep her less stressed when she is just hanging out in her crib.  I have that filled with toys and a drawing her "twin girl" biggest sister made for her, as well as blankets she is familiar with.  I am trying to make her days similar to how they are at home and as comfortable as possible.  It has been challenging trying to figure out the culprit to her infection and exactly what is bothering her.  Playing detective is definitely not easy, but the little bear is being a great sport.  I wish she did not have to suffer and go through all of this.  I definitely do not feel as brave or as strong as she is presenting, but she is keeping me in check, for her.  I am pretty sure after all of this is over and the dust settles I will have reached my breaking point, but for now, I will try to do her justice by being as strong and brave as she continues to be.  She is definitely one of the bravest little bears I know.



Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Thursday, March 17, 2016

It's a marathon...not a sprint

I am not a runner by any stretch of the imagination.  The only relationship I even have to the sport is through an old pair of Nike sneakers from high school and the Bumbleride twin-jogging stroller I purchased when we had our first two children.  It was on eBay and I just wanted a discounted stroller.  Running really is not my thing, but if I ever decide to participate in the sport, I am fairly certain I would prefer being a sprinter.  My personality is much more suited for being a sprinter opposed to being a marathon runner.  The finish line is closer, the goal seems more attainable, and the race itself is quick giving you immediate satisfaction and validation for your efforts.  Yes, I would much prefer to participate in sprints.

Sam has said from the beginning that dealing with CDKL5 and Sonzee is a marathon not a sprint.  He reminds me all the time of this statement.  I say the words aloud multiple times a week in hopes of them penetrating deep enough into my brain that I can change all my ways of thinking.  Yet, here I am trying to sprint my way through a marathon.  As I said previously, I am not a runner.  I do not know the first thing about marathon training.  I do know it requires a lot of preparation.  You cannot wake up the morning of the Boston Marathon and just decide to participate, I mean I suppose you could, but I can probably guarantee the outcome will not be desirable.  To run a marathon you need to have a lot of dedication, you need to have patience, strength, and endurance.  You have to be willing to spend months and years adding distance to your daily runs and putting up with all types of weather.  You cannot just become a marathon runner.

I have found that no matter how many times I remind myself that this is going to be a long haul type of event, I am still stuck in my “immediate fix it” type of ways.  This experience has been a HUGE test of my patience.  I have definitely made improvements in that department but wow do I have a long way to go.  I constantly want to do quick fixes for whatever discomfort Sonzee might be facing; unfortunately, there are no quick fixes.  There really are not even fixes.  Her seizures will come when they want, how they want, and in any form that they want.  Her body will get sick when it wants, how often it wants, and in whatever fashion it wants.  There are things I can do for her to provide comfort, but they seem to fall short in being permanent remedies. 

It has been exactly a year since I first stepped foot in the ER and said the words, “I am pretty sure my daughter is having seizures”.  I have now been in my training for 365 days.  I am definitely more knowledgeable than I was a year ago, but I do not have many more answers now to the same questions I have asked or wondered throughout the months.  These next couple of years are going to be difficult, I know this.  I am attempting to prepare myself, but I would much rather fast forward.  I keep saying, “Keep your eyes on the prize”, I do not even really know what that looks like.  I know it involves some semblance of seizure control, but really, I just want the bear to be happy.  I want her smile back and I want her cute little personality to shine through again.  I am having a tough time right now in this part of my training.  It feels like this is an insurmountable task, similar to if you ever asked me if I intended to climb Mt. Everest, Umm…No.


So, here I am in the midst of a marathon I was not prepared for and I am definitely more of a sprinter.

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Tuesday, March 15, 2016

A Bucket List

There is a sense of urgency that occurs when your child has a diagnosis that has an undetermined length of life expectancy.  It is really odd when you think about it, because essentially isn't that what we all have?  No one knows when it will be our last day here on earth, yet the majority of us continue with our daily life as if we have a full 100 years to complete our desires.  It is probably safe to say that unless you or a family member has been diagnosed with a terminal illness, you are not living your life as if you were dying.  Sure as you grow older you may realize life isn't going to last forever and so you go on more vacations, you tell people your true feelings, and you may do more of what makes you happy.  But why does it take living half of your life or having a less than desirable outcome to make you realize NOW is all you have?

I have been thinking about all of the things I have wished to do my whole life; travel the world, go on a zip-line, own two homes, (my list goes on) and it made me start to think about what I hope for Sonzee to complete in whatever time she has here on earth.  Of course with her disorder we really don't know how much time she has remaining, and while yes any day could be our last, for her, it might come a lot quicker than any of us are ready for.  I don't want to have any feelings of regret for her.  I don't want to wish that she did more.  So, I have decided that Sonzee needs to have a list of goals for her to start working on completing.  Luckily, for her three siblings, this means that they too will get to benefit.  It should not have taken until my fourth child, nor should it have required her to have a CDKL5 diagnosis for me to have my "aha moment", but here I am.  


I could google bucket lists all night long, but I would much rather that Sonzee have her storytellers to help her complete this task.  I would love you to reply to this post via comments, email, Facebook messages, etc. with what you think should be on Sonzee's bucket list.  There are no restrictions, no limitations; all suggestions are greatly appreciated.  We thank you so much for your support and I cannot wait to publish the outcome!

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Friday, March 11, 2016

It sucks

Here I am, again, finding myself writing the words "Sonzee has lost another CDKL5 sister".  Each of the girls that we have recently lost has affected me for different reasons.  It just goes to show how one person is capable of so much.  It is also a great representation that even though these girls share a similar genetic presentation, they are all unique and special individually.  Our most recent loss was of little 4 year old Dani, who while not "officially diagnosed" with CDKL5, presented with all of the same attributes as a child with CDKL5 and was awaiting a formal "acceptance letter" from results of her genetic testing.  

Her family had just moved to Phoenix and her mother and I had been in daily communication recently discussing providers and talking about the girls.  I was so excited about forming a friendship with another mother who has a daughter only a couple of years older than the bear that I could spend time with, who has been on a similar journey, who just plain "gets it".  I am still looking forward to what will become of our relationship, but I know at this point in time, her family has to work on developing their "new normal" without their precious Dani.

This just plain sucks.

Why on earth does anyone have to bury his or her child?  I will not ever understand it and I do not think I even want to.  I just know that despite the numbness I feel when I hear another child with CDKL5 has passed, there is an indescribable pain in my heart.  It is a pain that I am sure parents of a child with CDKL5 understand, but others might not.  I have said before how challenging it is to be in this position, trapped between the present and hopeful future.  It is challenging to keep hearing that these other precious children "are not Sonzee" and to rationalize the differences.  It is frustrating having to explain that even though I am hopeful for Sonzee's future, and even though, yes Sonzee is different, I am not naive enough to think we will be special enough to avoid this path.  I know some of you are thinking, "You don't know this is true", "Anything can happen to any of your children"...you are not incorrect in your thoughts, but whether you want to believe it or not...neither am I.  

This just plain sucks.

I do not hate CDKL5 because as another mother of a CDKL5 sister so accurately put it, it is part of our children.  It is what makes them who they are.  It is what makes Sonzee unique and special.  

However, it just plain sucks.    


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Monday, March 7, 2016

Epilepsy Blog Relay: Living with a child with epilepsy



This post is part of the Epilepsy Blog Relay™ which will run from March 1 through March 31. Follow along and add comments to posts that inspire you!

In 11 days, it will be a year since the words seizures and epilepsy weaved their way into my life.  In the beginning each time the word was mentioned and I looked at my one-month-old daughter, my heart sank, fresh tears filled my eyes, and panic set in.  The word itself could send me into a tizzy.  When the child life specialist came into the room at our local children's hospital, she asked me if I knew what the term "epilepsy" meant.  To be honest, I had heard the word throughout my life, but did not know much about it.  I definitely did not think about it, and I can assure you when I pictured my future, the words seizure, epilepsy, and infantile spasms were not part of it.  Like other times before and I am sure yet to come, the life I so carefully planned was altered and I along with our family embarked on our new normal.  A normal filled with epilepsy at its core.

When your child is diagnosed with epilepsy, so many questions fill your mind.  You immediately want to know what is causing the seizures, hoping the answer might bring you some relief.  You want to know if developmental milestones will be met and if so, will they be on time?  When you learn that your daughter has a genetic disorder as the cause of her seizures, that she will most likely never have seizure freedom, and that her development will be delayed, things can seem hopeless.  Everyday becomes a battle to hold onto hope that there will be a miracle, that there will be a cure, that your child will defeat the odds.  Hope becomes your lifeline, the word you turn to for comfort, the word that brings a smile to your face, the word that gives you something to cling to in times of defeat and despair.  

It has almost been a year since our first ER visit.  In that amount of time I have witnessed my baby girl seize between 1-10 times a day, sometimes those seizures involve 40 mini seizures in one episode.  Her episodes have been as short as 8 seconds and some upwards of 6 minutes.  Her body has stiffened, shaken, and contorted into positions that are challenging to describe.  Similar to any new experience, at first you are scared, nervous, and unsure, then as the days go by you realize "you've got this" and the fear is replaced with a sense of comfort because it is no longer foreign.  With experience comes understanding, with understanding comes knowledge, and with knowledge comes strength.  Things are easier to manage, easier to talk about, easier to explain.  I have gotten used to my daughter having seizures; it is part of our daily routine; similar to changing her diaper or giving her a bottle.  I cannot remember our life before we dealt with seizures and I try not to fantasize about a life without them.  

Living a life with epilepsy means taking daily medications.  It means living a life based on trial and error and uncertainty of whether the medications will work or not.  It means making diet adjustments and as a parent pushing your moral compass regarding potential therapeutic measures that are not federally approved.  One of the worst parts of having a child who experiences seizures is that I cannot relate to her experience.  I have no idea what a seizure feels like; she cannot tell me what she wants me to do for her right before, during, or afterward.  What is worse than watching her seize is wondering if I am comforting her the way she wants.  

When your child has epilepsy, you are always on the edge of your seat...waiting, unsure when the next seizure will occur.  You are always on high alert.  It is when you least expect it, when you finally start to relax that you can be sure one will strike.  Seizures are not events of convenience, they happen in the car, during sleep, while eating, or while lying around and playing.  We have our typical "seizure routine" that we follow when our daughter has a seizure, our children know it well.  It actually brings a smile to my face when our two year old daughter tells the baby "It's otay...You otay Dondee" (Translation: "It's okay, You are okay Sonzee").  It is one of those glorified parenting moments when you receive validation that you are doing something right.  Even despite the unfortunate circumstances that surround us, epilepsy has made a positive impact on all my children, my husband, and me.  

NEXT UP: 
Be sure to check out the next post tomorrow at http://livingwellwithepilepsy.com for more on Epilepsy Awareness. For the full schedule of bloggers visit livingwellwithepilepsy.com/epilepsy-blog-relay.  Be sure to check out the Epilepsy Blog Relay Thunderclap to raise epilepsy awareness. And don’t miss your chance to connect with bloggers on the #LivingWellChat on March 31 at 7PM ET.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Sunday, March 6, 2016

Sonzee becomes a "Tubie"

Lately I have been throwing out names of feeding tubes as if they are common household appliances.  It is pretty amazing how only a year ago none of these terms were part of my typical every day speech and now they have become part of my "professional jargon".  Sometimes I forget how little I used to know and how different life used to be.  I honestly do not think I ever saw a feeding tube in a person's stomach until Sonzee's birthday party when a friend of ours brought her daughter.  I honestly had not even google imaged what they looked like after Sonzee's initial consultation with the surgeon and I do not even know why.  

There are so many types of feeding tubes and various reasons why families might choose one over another, so for the sake of this post, I will explain the type of tube we are doing for Sonzee and explain our rationale for the choice.  Please know there is no right or wrong choice when it comes to choosing the type of tube a person uses, it is all about what works for the family and the situation.  The most important thing to remember is that any way you can get your child to meet his/her nutritional requirements is the BEST way.

From the start, I was very clear that I did not want something that would potentially interfere with Sonzee's desire to eat.  An NG tube goes up the nose and down the back of the throat and ends up in the stomach.  Many families may choose this route if the feeding tube is assumed temporary, if they just want to give a tube a "trial run" so to speak, or because they do not want their child to undergo a surgery.  I personally was against this option because the tube being placed against the back of Sonzee's throat could be such a nuisance to her that she may decide she would rather not eat by mouth.  The reason we are doing a feeding tube for Sonzee is not that her swallowing muscles are weak, nor is she on any food restrictions as far as thickness of liquids or textures of food.  It is because of these reasons; we immediately ruled out the NG tube and settled on a tube that goes directly into the stomach (gtube).  

Originally, Sonzee was scheduled to have a MIC-KEY button.  After speaking with many families, we settled on the MIC-KEY button due to its ease of use as well as the fact that it was inserted directly into her stomach.  The MIC-KEY button does not have any extensions hanging out of the stomach that can be pulled on, and it is easy to clean and easy to change at home.  The problem in Sonzee's case with the MIC-KEY button is that this procedure requires interior staples that with her high dosage of steroids could potentially have problems healing, and she would have a higher risk of developing a post-operative infection.  While her neurologist felt the steroids were not worth putting off until after we rescheduled her surgery we all agreed an NG tube would be our temporary fix.  I was not ecstatic over this decision, but whatever is best for Sonze.  

After multiple back and forth phone calls between the interventional radiology team and Sonzee's AMAZING pediatrician, we were advised that a PEG tube could be our temporary solution.  The PEG tube is similar to the MIC-KEY button in that it is directly placed into the stomach, but there is an extension that hangs out a couple of inches.  This procedure does not require staples, and will give the insertion site ample time to heal before changing to the MIC-KEY button.  We feel this will be a great solution, and we have been advised by multiple medical doctors that the high dose of steroids she is currently taking should not pose a problem for this surgery.  


Her surgery will be Thursday, March 10 at 8am.  I am a little nervous due to our last experience, but March 10 is an auspicious day as Sonzee's Bubbie celebrates her birthday, so it is already looking to be a positive experience.  Please keep the bear and the rest of us in your prayers this week and especially on Thursday morning.


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Thursday, March 3, 2016

When hope feels distant

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

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

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

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

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


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

Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers

Tuesday, March 1, 2016

Rolling with the punches

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

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

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

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

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

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


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


Mommy bloggers, Join me @ Top Mommy Blogs If you like what you just read please click to send a quick vote for me on Top Mommy Blogs- The best mommy blog directory featuring top mom bloggers