Searching

After April 16, 2015, I never anticipated that we would ever have a question again as to the "cause" of Sonzee's symptoms.  That was the day we were given a summary for her life.  It was the reason for her uncontrollable seizures, her "eyes doing weird things", her cortical vision impairment, and all of her developmental delays.  8 months later it was the reason for her failure to thrive, for the need to get a g-tube, for her to start the ketogenic diet, and for the hypsarrhythmia found in her EEG background. 13 months from that original April date it was the reason for why her stomach just stopped working and why she needed TPN for the first time.  Despite always searching for various answers for her different presentations of GI issues and never needing to search further for the reasons behind her atrocious seizures, CDKL5 has always been our answer...

Until it wasn't.

In September after Sonzee received her personal gait trainer and began to practice more weight bearing we learned she had 5 fractures all in various stages of healing.  I considered every possible cause, but ultimately CDKL5 received the blame.  There are a handful of kiddos who have a CDKL5 diagnosis who also require extensive bone monitoring and supplements, so like her severe presentation of GI issues, I just considered her to have been impacted more in the area of her bone health.  Honestly, besides blaming the formula she is on, it makes perfect sense to place the burden of this on CDKL5.  She is non-ambulatory, she has severe seizures, and she has osteopenia, of course, it could be CDKL5.  Not one of her doctors felt there was any other explanation, so I let it go.

It wasn't until her most recent fracture within the last two weeks and multiple private messages from followers that a voice of doubt began to get louder in my mind.  It doesn't make sense, (my guess is) 95% of kiddos diagnosed with CDKL5 are non-ambulatory, the majority are non-weight bearing, the same percentage if not more have atrocious seizures, it just doesn't make sense!  How did she get a compression fracture when she cannot even sit? How did she get a buckle fracture in her right ankle when she hasn't even put AFO's on in months?  What caused all of her fractures in September?  These are small fractures, they do not require any casting or surgery.  I decided to call the CDKL5 clinic and ask for orthopedics and endocrinology to consult when we go in 2 weeks.  I was told that they will consult with orthopedics, but this is not a CDKL5 issue and they recommend further testing.  I immediately emailed Sonzee's geneticist and explained the situation, who after hearing CDKL5 clinic recommended the testing said she had no problem starting with the sequencing panel for brittle bones.

In 2015 when genetic testing was offered to "find the cause of Sonzee's seizures", I didn't understand what that truly meant.  I have always been thankful that we didn't have to spend years of her life wondering "why" she was the way she was, but I feel like it has prevented us from seeing clearly.  I don't know how I am supposed to be feeling right now, but it is a mixture of hope for a clear cut answer, of sadness over what that answer is likely to reveal, and fear over what it will mean for her.  The days before we were told CDKL5 I said I needed an answer, and as long as we had one I could deal with it.  I feel like I am at that point again...I need an answer and we will deal with whatever it is.

"As long as one keeps searching, the answers come"-Joan Baez

Life isn't...

I can't seem to shake the words Sonzee's GI doctor said to us during one of our visits over the past year when we were debating putting her on gut rest.  The words keep taunting me, popping up during every diaper change, every time we put the thermometer into her ear, every time we pick her up and carry her, during every transition, every time we get her dressed, and really every time she moves.  During and for at least 1-5 minutes after each and every one of those previously mentioned activities she screams out loud and cries hysterically while her body trembles and shakes. 

"I don't know if it will help, because her body will find something else to interpret as pain".

I keep telling myself but for two weeks she was perfectly happy.  It was only after we did the infusion for her bones that the proverbial avalanche started.  The one that we still cannot seem to get to the bottom of.  Was it just a trigger?  Will the pain eventually dissipate?  Did we just divert the pain but not really solve anything?  Is this just a small bump in the road on the path to recovery, or is this going to be her new norm?  Did we not only lose the happy bear we were so beyond excited to meet and get to know but instead make things worse for her?  Did we just spend 22 days inpatient for nothing?  Did we introduce a vessel of potential bacteria that could kill her for nothing? 

How much longer will this last?  Why does every good intention end with a huge lump in the back of my throat and tears in my eyes?  Why does she always have to suffer at our expense?  I want to just fall to my knees and scream, we are just trying to help her, WHY??? why is it another thing?! Why can't she be given a break?!?  Just once I would like a decision we make on her behalf to actually help her and not cause a secondary backlash.  Was it the solution to the gut pain?  Was this going to occur despite the "GI pain distraction/elimination" no matter when we did the bone infusion? If not the bone infusion would it have been something else? 

Sadly, I have played this game before.  We have been here so many times I only wish I was numb to it.  I know that we won't ever receive any answers to any of the above questions.  We will simply have to let time give us some cryptic answer that won't be straightforward and will likely only come from us having to make another educated guess.  Life isn't always perfect.  Life isn't always easy, and life certainly does not always make sense.

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Wrong

Yesterday was a big day in our house as we celebrated Sonzee's baby brother's first birthday (officially it is Wednesday, although I am still in denial how that much time has flown by already), and her biggest brother had his final championship game for ice hockey (that we did not anticipate his team qualifying for).  It was a jam packed day, but filled will the typical chaos that comes with life of multiple kids; except for the fact that overshadowing it all was that Sonzee has been sick since Friday with the medically complex version of a common cold and she spent the entire weekend in her room, missing it all.

The saddest part was not even the fact that she was missing from the festivities or that she won't be in any of the pictures from the day, or that she spent the entire weekend rotating pain/fever medications and having constant seizures (which is not her typical "sick routine").  The saddest and worst part of the entire situation was that, I have come to expect this in our life.  The disappointment and sting was not as strong as it once was.  This has happened so many times, it is now part of our typical.  I was just beyond thankful this was one of the Sunday's she happened to have her nurse, so she could stay home and in her room to rest quietly and neither Sam or myself had to miss out on the festivities.  Despite the normalcy of the situation lies still a blanket of guilt.

Guilt that it is okay for us to go on our day without her present.  Guilt that we are used to it.  Guilt that there was relief in having her nurse care for her.  Guilt that life continued to go on without her being there with us in the same room.  Guilt that I didn't cry over the situation.  Guilt that it was better for her to spend the day in her room and not with the rest of us.  Guilt that this is her life.  Guilt that there is nothing we can really do to help her.  There is just so much guilt.

I was partially proud of myself for not letting the situation get the best of me, but partially upset that I didn't.  It continues to be a common recurrence, especially as she gets older and each time I am unsure what reaction is right.  I know nothing about our life is really normal, so there is "not really a right"...but it all seems to wrong.

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Preparations...continued...

I sat down to write this post last night after the word "preparation" kept running through my mind.  I knew it would be the perfect title for what I anticipated writing, but I also felt like I had used the word before as another blog post title.  Funny enough that only a couple of months after I began blogging in 2015 my first post about preparations was written, and 3 years and 4 months later this post rings eerily true and similar as we embark on another path of uncertainty.

It is a weird experience to keep repeating similar but completely different situations.  The groundhog day effect aura lingers but each challenge, each discussion, and each decision is ultimately independently determined despite the influence of the past.  I find it fascinating that no matter how many times we go around this merry-go-round I am no better off prepared to make any of these life altering decisions.

Every day this week I have been playing out the best case scenario of what could come in my mind.  I am partially proud of myself for (apparently) still having some hope and faith I was not aware I had, and partially annoyed with myself for even attempting to think that things could actually work out in reality how they are in my dreams.  I do not have the stomach to even consider the worst case of these decisions because it is just too much for me to even process.  Too loaded.  Too much guilt.

I just keep telling myself that we are doing what she needs.  We are making our choices based on what we feel is best for her overall quality of life and well being.  We are making our choices with HER best interest at heart, and so to quote myself, "[I] have to trust myself and my knowledge, and pray that I have enough of a foundation to get it right."


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Anticipation

Last Thursday I wrote a message to one of Sonzee's doctors after we had finished the last of two important appointments we had last week.  Every time my hospital app sent me a notification I was hoping it was her, but each time it was not.  I don't know what kept me from sending her a follow up message to check if she received the first one, but I just did not.  Maybe it was that I knew she would be handling things behind the scenes and eventually get back to me, or maybe it was because I didn't really want to hear what she was going to say.  Either way I let things go.

This morning Sam handed me the phone and it was Sonzee's doctor's nurse.  I knew it was her before she told me it was her just by her voice when she said "hello".  I listened to everything she said but despite my participation in the conversation my mind was 100 miles away attempting to process everything that is coming our way.  I do not know if it is even anything I will fully be able to process until I get to play the "hindsight" card 6 months from now.  If I let myself start to accept these feelings I immediately get sick, so I have been doing my best to just push it all away.  I honestly do not know if that is smart, and irregardless it is working less and less.

I spent half of my day yesterday either successful with my endeavor to ignore my emotions and the other half warding off the anxiety attacks that kept occurring.  I know change is inevitable when it comes to potentially improving Sonzee's quality of life, but the risks that accompany the potential for success are sometimes scary to justify, yet necessary to face.  If only that crystal ball could give us a sneak peak at the future and allow us a cheat at knowing how things will unfold.  I know that is not how this whole game of life works, but oh how I wish it were.

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Recovery

It has been one week and a day and a half since we have been back home.  It seems that every time this chapter repeats, the recovery is always different and becomes more difficult.  I wish I knew why.  Maybe because the reasons behind the initial admission are rarely ever the same.  Maybe it is because the situation, and life surrounded with the complexities of CDKL5 in general effects every family member in a different way.  Maybe it is just because we are all exhausted from everything that is constantly thrown our way.  I can throw out my guesses from now until I am blue in the face, but odds are the reason will just be added to my never ending list of things I won't ever understand and lengthy list of "we won't ever know why".

These situations literally drain the life out of my body and take me weeks, really months, to truthfully be back to okay, or whatever okay has even become over the last 3 years and 7.5 months.  It is usually just enough time for another floor to be pulled out from under us so we can start sliding down into the dark CDKL5 abyss.  This past week after my rock bottom moment Sam reminded me that if I am feeling overwhelmed then odds are everyone in the house is feeling it too because this life is not normal.  It is true, nothing about any of the situations we find ourselves in when it comes to Sonzee and her life is normal.  None of them are fair and none of them do or ever will make any semblance of sense.

Yet here we are again playing the same game but with different specifics.  The all too familiar chaos that unearths another consideration, another complication, another source of suffering for Sonzee, and another bout of muddy clarity for the rest of us.  I wish I really knew what all of these hospitalizations and inconsistent crazy home life was doing for Sonzee's siblings.  I wish I really knew and was able to truly understand what Sonzee's perspective and overall desires over everything were.  Are we still making the correct decisions and are they the ones she really wants?  Most importantly, will we ever truly know the truth to that last one and what would we do if she disagreed?

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Chasing

She’s out on the corner trying to catch a glimpse
Nothing’s making sense
She’s been chasing an answer
A sign lost in the abyss, this Metropolis

It has been a little over 2 years since we first and last dealt with Sonzee's GI issues.  We have never really gotten a clear answer as to what is going on besides CDKL5, and the bandaids we have used always seem to fall off.  It has never sat well with me, but after searching in and out of state and with multiple professionals, "You are doing amazing with making the best out of a less than ideal situation" has always been how we have ended nearly every discussion on the topic.  Maybe that phrase is supposed to make me feel better over what little bit I feel we have been able to do to comfort her?  Maybe it is supposed to make me actually believe we have and are doing everything we can for her?  Maybe.

Here we are two years later, no better off, but not for any lack of trying.  If only that made our current situation any different.  We will be having another care conference, and for some reason I feel the same way I did on March 15, 2015 before I realized we were going to live a real-life nightmare.  Finding myself completely caught off guard despite knowing deep in my gut what the situation is.  No idea what I expect to happen but knowing something must happen.  Praying I am wrong while hoping the situation will just fix itself all on its own despite history proving repeatedly that will not be the case.  There is a heavy rock sitting in the pit of my stomach leaving me unsure what best/right choice will lift it and wondering about unanswerable questions.

I will never understand why our Sonzee must suffer the way she does.  I will never stop praying for the suffering to end, despite where that leaves me on this journey.  I will continue to tell myself and attempt to believe there is some real significant meaningful purpose behind all that she has to endure and hope one day it will be visibly revealed and that the bitterness inside me has not eaten me alive by that point.  

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But then...

More times than I care to recount in the past 3 years I have made a "prayer request" post for one of our CDKL5 siblings or their family as they were in the hospital, on hospice, or already passed.  The topic no one wants to openly discuss but that every parent who has a child with CDKL5 tucks into the recesses of their mind.  Maybe we can rationalize that these posts are rare.  Maybe we can pretend that because there are much older children who are diagnosed with CDKL5, this won't "happen to us".  Maybe, because this time it wasn't us, we can pray for a multitude of reasons and go back to our reality.  Maybe when we wake up the post will have been a "false alarm" and we can all breathe a sigh of relief.

While there is a numbness that begins to creep into your body after making so many of these types of posts and losing so many of our beautiful children, there are always pieces of your heart that will never be put back together.  A portion that breaks because this child has been "adopted" into your family, and you have most likely been following his or her journey and witnessed his or her struggles and accomplishments along the way.  A portion that breaks because you have most likely stood in this position before with another family and you have an idea of how this is going to unfold and you know a parent is about to part of the group that you still cannot understand even exists and never want any part of.

While your heart is broken for this family, the reality is that your heart is also broken for yourself.  You cannot possibly imagine your child's journey following in the same manner, even if you could imagine it, you do not ever want to.  You cannot fathom how this family is going to make it through this, because it is incomprehensible how you would.  Other families will tell you that you cannot dwell on it, that you cannot live life fearful of this occurring, to an extent I think that is accurate, but then the reality sets in.

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Wonder

Last night we went to a BBQ for dinner.  Our friends have so many toys and a huge backyard playground, so it was about 5 seconds after we arrived that the kids disappeared.  The weather was actually perfect for Arizona conditions, which meant we were going to eat outside.  "Perfect" still means too hot for Sonzee until the sun sets, so we parked her wheelchair in front of the screen door so she could be with us from the air conditioned house, and we sat at the table right outside.  The children were running around, her baby brother was being passed back and forth between Sam and myself, and she was happily playing with her hands in her chair.

3 years in and I am beyond the daydream of seeing Sonzee playing with her siblings by the swing set or running around.  My mind knows better than to even go into that zone, but my heart, well that does not always get the memo.  I sat at the table having a fantastic time talking, laughing, smiling, and truly enjoying myself, but part of me was with Sonzee wondering what she was thinking.  Was she really happy sitting in front of the screen? Did she want to be running around with her siblings?  Was she really content?  Does the heat really bother her?

I hate that so many times she is physically with us, but we are not completely present with her.  We are unable to cross over into her world, or be privy to any of her thoughts.  Even though we walk over to her, give her a kiss every time we walk by, and say "hey Sonzee, how's it going?", I feel like we are neglecting her.  I can't help but wonder if what we do is okay, or if she wishes it were different, that we were different with her.  As soon as the sun was out of a direct hit, Sam brought her outside and let her enjoy the breeze.  She loves sitting in the breeze, and so there she sat playing with her hands, looking as if she couldn't be happier.  Yet, I kept glancing over wondering if she could be.

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Inner conflict

I have been staring at an empty blog page for close to 2 hours.  I have so many things going through my mind and emotions traveling through my body.  My inner dialogue is about as organized as my diaper bag, and to lend some insight, I just took out an extra outfit for Sonzee's baby brother that was a size "Newborn"...he will be 5 months in less than a week.  For some reason, the impact of CDKL5 is all of a sudden just hitting me hard, and I cannot escape it. 

While the more rationale part of my brain tells me “You cannot live like this.”, the other parts are not strong enough to win that argument.  The trauma caused by this diagnosis has planted its roots deep into my psyche, making things feel impossible.  I try not to live in the fear of the potential of losing Sonzee on a daily basis, telling myself that “the length of life is not certain for any of my children”.  I am trying to convince myself that Sonzee’s baby brother is going to be a typically developing child, and that when my children have “minor aches and pains”, they are just minor, that they “will not be the worst case”.

I cannot decide if I am spending more of my time panicked about the potential “worst cases” or trying to thwart those thoughts?  Each day I wake up and for a split second I feel calm and at inner peace.  Then the panic fills my chest as if I just breathed it in, and then it finds a nice cozy spot inside and just sits.  I cannot breathe it out, I cannot make it go away.  Every moment from that point on is spent trying to tell myself that what I feel is not healthy and that I need to not focus on these things.  I can only try to take deep breaths, ignore the heaviness, and pray for it to go away. 

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The other side

I cannot remember exactly where my mindset was in October of 2015 but being a rookie on this journey I can guess I was in a more optimistic position.  I had witnessed fewer seizures, experienced fewer moments of overall defeat for Sonzee, not fully addressed her diagnosis of her being Failure to Thrive and had not done her first medication wean.  I had thoughts about wishing things would be better for Sonya, whatever that meant in my mind at the time, but then wrote a post about being content with where things were personally, because you just never know what the alternatives really are, even when from the outside others situations appear more ideal.  

There is honestly NO ideal way to have a CDKL5 mutation.  No mutation is "better" than another, they are all essentially awful and unwanted, and each child presents with unique strengths and challenges.  There is not one parent of a child diagnosed with CDKL5 (that I know of), who prayed for their child to have a mutation in their CDKL5 gene and present with whatever skill sets and or medical complexities they do because of that mutation.  Some children with CDKL5 do walk, some do crawl, some can sit, some have a limited vocabulary but are able to communicate verbally, some have behavioral difficulties, some have respiratory issues, obviously the majority if not all, have the seizure component, but there are no two kiddos who are exactly alike.  Every child who has a CDKL5 diagnosis and their family experience heart aching, gut wrenching struggles, yet I am sitting here wishing Sonzee did not have the specific challenges she has.

Why do her struggles have to be what they are?  Why couldn't she be one of the more mobile children with fewer GI and motility issues?  Why couldn't she be one of the miracle stories where CBD worked?  Why couldn't she be one of those kiddos that thrived when her seizures have been momentarily controlled?  What would it be like in our house if she showed negative behaviors such as wreaking havoc on the playroom and eating non-food items?  Why can't she tolerate the amount of food she NEEDS to survive?  I know handpicking the way CDKL5 could affect her would not be a better idea, and knowing my luck, I would probably not do her any better justice, but I wish I could have an alternative version of her story playing out next to me for me to see what it would be like if she did not have the specific set of challenges she was given.  Yet 2 years and 5 months after my optimistic approach at turning lemons into lemonade, knowing that "the grass is always greener on the other side" is not always the case, I can't help but wish so deeply that she had "the other side".   

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What if it's not?

During this past pregnancy (as well as all the others) when people would ask me "do you know what you are having?" or "is the baby a boy or a girl?", it was typically followed with, "just as long as it is healthy".  I would nod my head in agreement because what else are you supposed to say?  It could get awkward really quickly if the next words spoken were, "What if the baby is not?".  Yet honestly, what if it's not?  I have been wondering to myself recently what exactly does a person mean when they say those words.  I can assume each person who makes the comment has a different reason as to why they have said those words, but really, what do they mean?

Me personally after having a child who ended up under the category of "what if the baby is not healthy", I can tell you I am not offended by the phrase itself; but during this last pregnancy the words took on a new meaning.  I am not ashamed to admit that I said "as long as he is healthy" aloud to anyone who asked me the gender question.  I know in a way that not every mother does what it means when your child falls under the other category.  I have lived in a hospital, my house is filled with medical supplies and equipment, my children excitedly yell "Sonzee's hospital" every time we drive by Phoenix children's hospital, I have watched her endure too many medical procedures, and I have had to play the "what happens if Sonzee doesn't make it this time" scenario in my head more times than I can count.  While some experiences of parenting are worth repeating, these are not ones I was begging to do with another child.

No one asks for "unhealthy", but sometimes that is just the card that gets played.  I promise I do not love Sonzee any differently than I do any of my children, but I also would never want to watch another child suffer like she must.  It is already too much to have to wonder what her thoughts are in regards to having to endure what she must on a daily basis.  Having to carry the burden of literally making life and/or death decisions on her behalf is often times just too much to handle.  When strangers would say "as long as the baby is healthy" my mind would of course turn to Sonzee.  Her almost three years has been filled with a mixture of joyous occasions and challenges, tears and some smiles, fear and hope, and missed milestones and completed inchstones.  It has been a roller coaster of emotions and events all along the way...and still I wonder when someone says "as long as the baby is healthy" what if the baby is not?

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...unsure

For the past couple of months we have been slowly weaning Sonzee from one of her medications in between increasing a new one.  The one we are weaning is the highly addictive benzodiazapine medication, Clobazam (also known as Onfi).  It was one of those medications on the "I would never give my child that medicine ever" list, but then life happened.  She has been on the medication since August and while she thankfully never experienced any of the severe respiratory distress issues that she could have, her seizures sadly never abated either.  Instead of waiting for her new medication to be at the highest therapeutic dose to wean her more consistently, it was decided after her most recent palliative care visit in December that we would focus on only weaning the onfi and not increasing the new medication. 

About 2 weeks ago we noticed Sonzee started to act more lethargic and just not quite herself.  We thought maybe it was effects from the wean so we held off on her wean for a week.  We waited to see if she was getting sick.  We attributed it to any possible excuse we could fathom, nothing gave us clarity yet nothing was improving either.  After this weekend we decided to contact her doctor and get some lab work, surely that would shine some light onto the situation.  The results came back with nothing significantly out of normal ranges, we have no better insight into what could possibly be going on in her little body. 

I used to think that we could be on top of the situation, one step ahead of any potential danger zone, but I am slowly coming to terms with the fact that maybe that really is not possible.  I hate sitting here feeling less in control of a situation I didn't have any control over to begin with.  No leads to go off of, no place to look at next...just forced to sit and wait for her to look and act healthier but not knowing if that is the direction things will go. 

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A new form of guilt....

Within the next 2 weeks or so our little bear is going to become a big sister.  I am eager and excited about this new addition to our family, yet I have not even packed my bag.  (Full disclosure, I packed for Sonzee while in labor and running out the door).  I really am looking forward to everything that comes with having a newborn baby, but despite the typical massive amount of pregnancy hormones circulating within my body,  there is a cloud of guilt and sadness hanging over me.  I do not want to assume everyone who follows Sonya's Story understands the needs of a child like our dear Sonzee bear.  I do not want to assume everyone knows how much care she requires.  I try not to mention the sleepless nights encountered due to her constant alarming pulse oximeter letting me know her heartrate has skyrocketted (or on some occasions her oxygen has plumetted) and she is having another seizure.  She is dependent on every level.  She is unable to be left alone, she has to be buckled into swings and bouncers at all times.  She is unable to be placed on the ground in a seated position "for just one minute" so something can be grabbed.  She is unable to feed herself, and in fact in her case, her food bypasses her stomach and goes directly into her intestines so she doesn't eat in the typical fashion.  Her tube feedings are prepared in advanced and placed in the fridge and refilled periodically throughout the day and the night due to a continuous 20 hour a day feed.   She requires medications, patching, and various position changes throughout the day on top of the daily needs of a child.  Her needs are that of a newborn baby, in all ways, literally.   

It was decided shortly after we found out I was pregnant that we would need extra help around baby's arrival.  When you have a Sonzee bear, you can't rely on family to take care of her needs, it wouldn't be fair with everything they have going on.  Thankfully here in Phoenix we have a place I have mentioned previously called, The Ryan House, where you can send your child if he/she is diagnosed with a "life limiting" journey.  They give you 28 days a year where you can send your child and he/she can be surrounded by nurses and volunteers in a loving/caring environment who will give your child the 24 hour care required to provide some respite to families.  Since they fill up quickly, back in May I called up and booked Sonzee for the last week of November, a weekend at home, and then the first week of December.  We had our phone call with the head nurse Wednesday, we updated her medication list, and we are now down to her first check-in in just 10 days, and my heart is breaking.

I realize my limitations of being able to care for 3 typical older children, a Sonzee, and a newborn baby simultaneously in the first couple of weeks.  I know deep down this is the best place for her to ensure she receives the care she deserves and requires and all of our other children do as well.  We are able to take her in and out of the Ryan House as long as she returns to sleep.  Her nurses are able to be with her on their regular schedules.  She is literally in the building next to the hospital I will be delivering the baby at.  There is really nothing negative about the setup, except the amount of guilt I feel over having to place one of my children outside of my house to welcome a new one.  I am not the only person to have a special needs child, other children, and be welcoming a new baby...I feel like I should be able to handle it all.

For 2 years and 8 months my older children have made sacrifices because of their sister.  They have had to endure experiences no children should ever have to, and they have done it with amazing stride.  They had no choice, none of us had any choice when it came to Sonzee's diagnosis, and I have not stopped feeling an immence amount of guilt because of it all.  Yet as the days get closer to welcoming this new little person, I am scared of how it will all play out.  This is different because Sam and I made a choice to have another child despite having a Sonzee and 3 other children and with it comes a whole new form of guilt.


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This, too, shall pass

It is 3:23am and little bear finished her seizure about 5 minutes ago.  She is back up to the 4ml dose of Zonisamide we attempted to give her last week while in the hospital.  We are trying to give this drug a chance, get her to a therapeutic level and then judge, but my gut says to jump ship.  I know part of that feeling is out of fear and the complete loss of control we have found ourselves in.  The other part of me believes whether it is now or a month from now, Zonisamide is not going to be her saving grace.

So here we are, here she is in this situation, and here I am back to my middle of the night posts and waking up to alarms and seizures.  I am angry and sad.  This is NOT what I want for my two-year-old, this is NO way to live, this HAS to stop.  But how?  Where is the magic?  Where is the cure?

I am doing my best to not play the "what if" game, to not analyze our decisions with a microscope.  I am telling myself that this would have been the outcome regardless of stopping Sabril, that this was all in the plan because we are in the dreaded toddler years of CDKL5.  That we are not responsible for her current situation.  I do not know if this is 100% true, but I also do not know that it is not.  I know I should try and be open minded.  As her doctor reminded me last week, we are running out of options, so I really want (need) this medication to work.

I am so beyond broken for little bear.  This is absolutely horrific to experience as a parent.  I am hopeful that we will eventually get her seizures under some sort of control, until then, the message I received in my bath bomb before bed is going to be what I make my brain focus on every time I close my eyes.

Uncertainty...

It has taken about two weeks and endless hours of multiple people's lives (that no one will get back), but we are finally going to be able to give Sonzee her first dose of her new seizure medication, Zonisamide tonight.  While we try not to do too many changes at once, it is always inevitable that certain things will overlap and in this case it is all medication based, so hopefully things won't go completely wonky.

In a sense the comical insurance ordeal played out in our favor as it gave us time to do a slower wean of her Sabril and as of yesterday she was given her last dose of gabapentin.  I am unsure when the build up of these drugs will fully be out of her system, or for Sabril to be at the current dosing level, but these times are always a bit nerve wracking for us.  The gabapentin we are 100% sure did nothing for her in any area so I am just looking forward to seeing what, if any, side effects she might have been having that we didn't really notice but are now will no longer be bothering her (i.e. Dizziness, blurred vision, headaches, etc.).  As far as Sabril goes, it is not an effective treatment for her current seizure type (I call it the seizure variety platter as it displays itself in various forms over a 5-7 minute time period), but we are unsure if it is still keeping the nasty spasms at bay and responsible for her EEG background being clean.  To say we are petrified about being off that medication is quite an understatement, but we also do not want her on more than two seizure medications at a time and keppra is effective at keeping another form of her seizures away, so it is what it is.  

It is always trial and error, and sadly it is Sonzee who has to be the house Guinea pig.  At this point I am eager to see how she reacts to the zonisamide and am hopeful it will treat her current seizure activity.  I just pray (as usual) that the changes we are making just make tiny ripples in the water, that we don't rock the boat too much, and most importantly that is does not capsize.

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