Happy 5th Birthday Corrinne

Dear Corrinne, 

Today is such a special day, it is your 5th birthday.  So many of Sonzee's friends have turned 5 since she has passed, but for some reason, today, your birthday is the one hitting me the hardest.  Maybe it is because you were the only friend we had come share in her mock 5th birthday party?  Maybe it is because of the parallels in yours and Sonzee's journey?  Maybe it is because I haven't let myself fully grieve over Sonzee never officially turning 5 and I was so afraid for your family that they would end up like us and today would be happening in a completely different manner?  Maybe it is because I personally feel so invested in you turning 5 that I am a mixture of relieved, ecstatic, and beyond grateful that you have made it to this milestone?  Maybe it is because I know that you being at Bear Pines somehow means Sonzee is celebrating with you and it feels like life is coming full circle?

You are such a special girl to so many.  We have been so blessed to have you and your family in our lives for 4ish years.  Your mother is one of the few people in this world that I can and have shared my darkest fears and feelings with and who has been there to help me feel almost normal the last 7.5 months.  She is for sure your fiercest advocate and a primary reason you are able to celebrate in all of your glory the amazingness that is today.  Sonzee was so blessed to have met you in FBC's Friday group, it was because of your story that we finally took a tour at Ryan House.  You and Sonzee shared a knack of making your (same) GI doctor experience firsts with your insane dysmotility...but you, my friend, continue to just travel along with a divalicious smile, painted nails, beautiful sassiness, and a requirement to travel with a mini fridge.

I am just so thankful that you honored us by accepting the invitation to Bear Pines for your special day. I hope it is your best birthday ever, I don't doubt for a second that you will be and have been spoiled beyond comprehension, and rightly so.  I hope you know how much your life has mattered to ours.  On your 5th birthday, we wish you a year of few hospitalizations, no new diagnoses, calmness, health, happiness, and amazing memories to be made with your friends and family.

   

Love, 

Sonzee's Family

Dear Sonzee (3)

Dear Sonzee,

Today marks 4 years since we first met.  Besides your sister who we planned to meet really early, you came into this world earlier than we had psychologically planned for.  Your father had me convinced you were going to be another boy and with my history of being wrong 100%, I didn't even argue.  I  even stupidly went so far as to think, "we will have the perfect family; two boys, and two girls".  Honestly, I did not even entertain the possibility you would be a girl until two weeks prior to your actual arrival, I had a mini panic attack wondering how three girls would share one bedroom, but then reminded myself there was "no way" you were going to be a girl.  Bubbie was the only one who knew, but she kept that a well-kept secret and made you your baby blanket with a matching hat and bow.  She bought all of the items I had flagged in the "if baby Z is a girl" Etsy store.  In hindsight, I would have picked a different color yarn for your blanket and spent more time carefully choosing outfits and bows.

Nothing about your arrival was expected or planned.  By the time I was in triage and you were born it was a whopping 40 minutes and your doctor couldn't get there quick enough, he missed the entire thing, and two nurses argued over who was going to catch you, while you decided you weren't waiting for either and the next thing I knew I had you in my arms.  I knew from the first moment "something wasn't right".  To be honest, the nagging pit in my stomach anxious feeling has never left over the last 4 years, it just becomes muffled every once and a while.  The constant worrying, panic, tear-filled moments over what is best for you have never left either, and none of it has gotten any easier.

I have shared in your three older siblings celebrating this milestone and the achievements that have brought you to today are ones they thankfully have never had to endure and I apologize that you must.  I am so sorry you are celebrating today being carried from various pieces of equipment by your father, myself, and nurse Karen.  I am so sorry that we might accidentally place your body in a position that could ultimately lead to another fracture for you.  I am so sorry you are unable to run excitedly out of your room to see your gifts on the counter.  I am so sorry that your gifts have to be signs, pillow cases, pacifiers, pacifier clips, and clothing versus the latest trending four-year-old hot commodity.  I am sorry we will not be celebrating you with a party of your favorite characters, and I am so incredibly sorry I have no idea who they might even be.

I am sorry you have spent 6+ weeks total since September 16 sleeping in a bed on the eighth floor of Phoenix Children's Hospital, and it breaks my heart that undoubtedly you will spend many more during this upcoming year.  I am sorry that you have spent so many minutes this past week seizing and in pain or sleeping due to those seizures.  I wish my prayers and begging would have at some point over these past four years changed any of what you endure on a daily basis.  I am sorry that our love for you has not changed any of how your story has unfolded or will continue to do so.  I wish and pray that we could do something more for you.

My dear Sonzee bear I hope you know if it had ever been up to me alone, I would have done whatever was asked of me to ensure this was NOT the lottery you would win.  I hope you know how much your siblings love you and pray for you to not have to deal with the sad parts of having a CDKL5 mutation.  I hope you know that we all live for your smile and moments of happiness and contentedness.  I hope you know that we treasure every moment you share with us and while not the ideal lessons of parenthood I would have asked for, I thank you for them all. 

And so as you turn 4 and enter into your next year, my wish for you is that this is your best year ahead.  One that will be filled with your fewest seizures and least hospitalizations.  Your most smiles and endless moments of laughter.  A year that you will feel less pain and suffer less.  I pray that this year we solve more problems while creating fewer (or no) new ones and that you will only experience positive gains.  I hope you will cry fewer tears and that your bones will strengthen, and that you will continue with more sassy days.  I hope that your personality continues to shine through and that we learn to help you to communicate so we are better able to be there for you in the capacity that you actually want and need. What I really want to give you for your 4th birthday is a cure to this madness, but since that is not a possibility what I am offering to you is an unFOURgettable year ahead. 

Love always,
Ema

One minute 45 seconds

Lately I have been really struggling with my beliefs and the concept of hope in general.  I do my very best to try and be optimistic but the "real me" is more of a realist, which tends to come across as "Debbie downer".  I can own that about myself, and honestly, I do not feel like I am in a place to jump ship on the "perceived negativity" at this current juncture, because it is safer for me to be closer to the bottom.  When I find myself in one of these lull periods, it is as if I am more receptive to the shimmer of hope that might actually exist.  

In the middle of the night between Monday and Tuesday morning I had what will always remain one of the top 5 moments between Sonzee and myself.  As I went to start her back on her 20 hours of continuous intestinal feeds I turned my phone flashlight on and caught a smirking faced Sonzee looking over at me.  My immediate reaction was a huge smile and of course to begin recording this magic moment.  I honestly do not remember the last time I have felt her portray such giddiness and happiness outwardly, not to mention an actual "dialogue", my heart was literally exploding.  It was near one minute and 45 seconds where my 3-year-old acted like a 3-year-old.  One minute and 45 seconds so genuinely appreciated and not taken for granted that even typing this brings tears to my eyes.

Many minutes, hours, and days spent with Sonzee are surrounded by question marks.  Is she happy?  What is she saying?  Does she understand?  How can we help her?  Is she in pain?  Why are the simple things in life so challenging for her?  Those are just preliminary; my list is far more lengthy and complex.  I often feel like I am drowning with hefty decision making and uncertain repercussions.  Then randomly out of nowhere I am truly given a gift from G-d, as if he knows this is exactly what I am needing.  This one minute and 45 seconds was chicken soup for my soul and will certainly keep me company as we continue through this next phase of uncertainty along this special needs journey.  

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The evolving role of Mother's Day

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

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

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

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

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

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"Normal"

I was on the brink of needing to cork the good ole' wine bottle prior to getting the older kids into their beds last night when Sonzee was asleep during the prescheduled live video feed of her getting her glasses.  For a good while I was on the verge of tears because "why can't just one thing go the way I planned it".  I sat in the corner of our couch and stared into my phone sending sad faces emojis and negative words to a close friend.  Then I took a cute picture of her peacefully sleeping and made a post to let her story tellers know the live video would be postponed.

After some time went by I looked over at her mat and I saw her eyes were blinking..."YES! She is awake, live feed of glasses is on!"  I am pretty sure I said that aloud as well in my head.  Part of me ecstatic, the other part slightly nervous.  This is the Sonze we are talking about, if she isn't in the mood, well than we might as well stick to regular evening programming because this could get ugly really really fast!

I had spent a good portion of the afternoon thinking about what would be the best position for her to be in, what toys would be best for her "first time seeing" and reminding myself multiple times that this could very well be "disappointing" in terms of her reaction so I shouldn't get my hopes up too high. When it was time to start the live feed I was beyond nervous.  Talking to groups of people isn't exactly my favorite thing AND I had not planned on being in the video, so I apologize about the clothing malfunctions (oops!).

Besides the video itself being more amazing than my wildest dreams could ever have envisioned, when I look back on how the evenings events went I actually am pretty excited about something that I never considered.  I had been down in the dumps about little bear falling asleep, I was a bit nervous when she started to cry when we made our first attempt at getting the glasses on her face, but the fact that it played out the way it did made me smile because it really is normal to have a 21 month old do everything she did!  

What 21 month old naps when you want him/her to? What 21 month old "cooperates"? What 21 month old wants a band around his/her head? (So many people mentioned this was a problem for their child and I merely shrugged it off thinking how Sonzee isn't fazed like typical kids). What 21 month old is happy 24/7?  While there is plenty that is different about Sonzee and all of her same aged peers...just this once it was nice to realize everything she did was just "normal."

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363 Days

As I sat down to write my post I could not remember the topic that I had been planning on sharing.  That happens more often than not these days with the lack of sleep I am getting and the usual typical mommy brain.  So I looked back a year to see where my mind was and I came across a post titled who is she?  Similar to the other "I wonder if we are making the best decision" posts, I was worried that we were the ones preventing her personality from coming out because of the side effects of the medications she was taking.  I was worried about the harm all of her medications were causing her.

September 9. 2015

"If one of the side effects of keppra weren't irritability, would she be a baby with a constant toothless grin?!  If it weren't for topamax would she be a bit quicker cognitively?!  How much of the Sonzee bear that we know and love is actually Sonya?!  How much of her are we missing out on?!"

While I think it is "safe" to say that we won't ever be able to differentiate whether all of her personality is due to a specific drug she is currently taking, a long lasting side effect from one she is no longer taking, or if she is acting just as a non-medicated Sonzee bear would, I have so much to say to the me from one year ago.  Sonzee is practically on a non-therapeutic dose of Keppra as we continue to wean her slowly.  At her highest dose over the past 17 months, she was on three times the amount she is currently taking.  She is on Sabril and RSHO hemp oil and is experiencing the best seizure control of her life (poo poo poo, chamsa chamsa, knock on wood, and every other possible superstitious saying from every culture) at 23 days 13 hours and 15 minutes (as of the writing of this post).  She is the happiest little girl, with the most beautiful and amazing open-mouthed tooth filled smile.  She attempts to giggle and makes a Sonzee exclusive little laugh.  She plays with her feet and interacts with everyone.  She loves to be silly and her personality is shining.  She has been off Topamax for 6 months and immediately we saw her cognitive abilities enhance with the elimination of that drug.  HOWEVER, 100% of the Sonzee bear that we have known and loved IS ACTUALLY THE SONZEE BEAR.  

All of the medical choices we make on this journey we obviously make for her, so she can be the best little bear that her little body allows her to be.  Every smile, every laugh, every milestone she achieves is due to her being her no matter what medication she is on, no matter what obstacle that drug puts in her way and no matter how amazing it helps to make her.  Every tear, every setback, and every hurdle she has to overcome and reattempt are all because of who she is.  I want my old self to know that we were not missing out on anything that she had not shown us because at that specific time, that was not who our little bear was. 

There will come a time when I know this post will serve me well.  I hope that when I reread the words I am writing I am taken back to this specific moment in time.  The time when our days were filled with less tears of sadness and more tears of joy.  The time when we started to meet our little bear like we would any typical 19-month-old child of ours.  The time when we celebrated every little tiny moment of positive outcome as if it was going to be the last, but hung to the hope that it would not be.  The time when we worried that our days such as this could very well be numbered, but we would rather experience them this way regardless.

It has been 363 days (give or take) since I wondered who my fourth child was.  I wondered who she could be without the assistance of an anti-epileptic drug, yet would never allow myself to give the okay of letting her not take one.  Today, I am celebrating who our little Sonzee bear is DUE to the seizure control she has been blessed with while also on a drug that I once worried would take so much of her away.  To that, all I have to say is what a difference a year can make.

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Eighteen Months

My dearest Sonzee Bear, 

I do not even know how to begin this letter to you.  As I sit here the rain is pounding on the skylight, you and your siblings are sleeping, and your father is out at ice hockey.  I have so many emotions running through me right now I do not even know where to begin.  This has been a prominent occurrence during the past 18 months of your life.  I find myself constantly straddling two worlds simultaneously, the one where I am fighting back the tears because of sadness, and the one where I am fighting back the tears because of happiness.  One thing seems for certain, there are always tears.

In one more hour it will be exactly 18 months since I first ignored the signs that you would be making your debut 2 weeks prior to your due date.  A day after the day your father joked that you would be arriving.  In true Sonzee fashion, you had your own agenda planned.  Luckily, for the both of us, you did not make me wait long once you decided it was time.  In just 8 hours, it will be 18 months since I first held you in my arms.  18 months since you made us a family of six, a family of four girls and two boys.  18 months since our lives became part of a storm, similar to the one that is going on outside.  So much has changed since those first moments, yet so much has remained the same.

Since your arrival I have received many new titles; a mom of 4 beautiful children, a NICU mom, a mom of a child with epilepsy, a mom of a child with a CDKL5 mutation, a mom of a special needs child.  I embrace my positions with a smile, but sometimes they mask the pain that I feel for your suffering.  While I am thankful that we are celebrating this momentous occasion with you in our presence, it pains me exponentially that undoubtedly you will have at least one seizure today and you will struggle to communicate your wants and needs.  This day of celebration is clouded with the fact that you will be in pain in some form or another and just like every day for the past 18 months, there is nothing I can do for you to make it go away.

I have been waiting in anticipation for this day as I did with your siblings.  You of course have a specific outfit that was purchased with your personality in mind.  I had distant dreams of the accomplishments you might have achieved, but thankfully, I always keep the backdrop blurry so that you never feel like you have let us down.  I push you like I do your siblings, and while there are days that I am frustrated with the situation, I want you to know that you could never disappoint me.  I am just so thankful for your current capabilities and your consistent determination.  

These last 18 months have been so hard on me for a multitude of reasons, one of them being the constant worry that I am not honoring your wishes.  I just want you to live the life that makes you the most happy.  I sometimes wonder if that is just letting you lay on the green mat so you can roll off it 100 times while you secretly enjoy making me walk over to place you back on it.  You have such a strong fighting warrior spirit, which has become evident; as we have watched, you hover over the fine line of life and death far too many times for my liking.   

While there is no guarantee for anyone, celebrating birthday moments like this is bittersweet to me, as I live in constant fear that it will be the last.  So I apologize now (not really) for the insane amount of pictures and poses I will undoubtedly be making you participate in.  18 months is a date I was uncertain we would even reach with you a couple of months ago and yet it snuck up on me so quickly.  These last 18 months have been one big contradiction; I cannot believe how a year and a half has flown by and dragged on all at the same time. 

Thank you my little bear for helping me work on my patience, and for giving me strength I did not know existed.  Thank you for helping me find my voice and making me a better parent.  Thank you for helping me unlock a hidden desire and passion of writing, that without you would never have come to fruition.  Thank you for brightening my day with your crooked adorable wide mouth smile (when you are in the mood to do one).  Thank you for allowing me to hear your sweet little voice and even your not so sweet and loud cries.  Thank you for being a great teacher and student to your siblings who love you so so very much.  Most importantly, thank you for being YOU.

I hope and pray that these next days, weeks, months, and years of your life will be filled with more joys and accomplishments than seizures, pain, and sadness.  I wish for you many more "ema made" celebrations so we can see your cuteness as you are forced to wear ridiculous customized outfits that bring me so much joy and happiness.  I hope you have an idea of how much you are loved by us all.  

Moreover, thank you for the past 18 months.

Love always, forever and a day, 
Ema

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Moments

There have been plenty of moments along this journey that have left my face hurt from the amount of smiling that has occurred.  Genuine happy smiles brought about from being an extremely proud mom.  The times that definitely involve me grabbing Sonzee, squeezing her so tightly, and planting hundreds of thousands of kisses on her yummy yummy cheeks in a celebratory manner.  These types of moments are thrown in sporadically, and sometimes if we are lucky, they can last longer than a blink of the eye.  I like to think of these times as G-d's way of saying..."Hang on Randi, I haven't forgotten about Sonzee".  No matter how utterly incredible these moments are there are challenges that coincide with these types of moments.  

On the positive side they are a blessing in their impeccable timing, typically occurring around the more challenging times.  The times when I feel we are at the bottom of the coaster.  The times when I feel a little lost and insecure about her development.  The times I feel like she is only child with CDKL5 not accomplishing any goals.  These moments serve as a necessary pick-me-up granting me motivation and inspiration to tackle what is next along this pebbled path.  I cherish these moments in a manner that as usual for me, is difficult to articulate.  I feel almost swollen with joy and pride.  These times essentially wipe the slate clean and mark a new beginning for Sonzee's story.  

Then there is the dreaded negative side.  The side that most people do not want to admit exists, but we all know does.  A horrible effect of these moments is that they are also a huge slap in the face.  They are a stark reminder that even with the most optimistic parenting in the world, a life with CDKL5 can realistically only bring moments of euphoria.  It is a reminder that these joyous moments are unfortunately not our normal.  They are rare enough that they have taught me to actually appreciate them in a manner I never knew was possible just a year ago.  These moments represent that at any moment the elated cloud 9 unbelievably happy; heart stirring, overwhelming, spine tingling moment can simply be popped like a latex balloon (my least favorite and most feared item).

While there is something to be said for living in the moment, it is definitely not always rainbows and butterflies.  In the past year, I have really learned to understand what it truly means to "live in the moment".  All you really have is a single moment to feel whatever emotion is present, because in a split second it is gone; the moment is gone, the thoughts you have are gone, and the feeling you are experiencing is gone.  The easiest part of "living in the moment" is saying the phrase.  The more difficult part of "living in the moment" is carrying out the action.  The most arduous part, that I am still struggling to master, is truly embracing the moment without fearing what is to come following the moments end.  

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Small victories

I often joke that Sonzee's pediatrician's office should create a standing appointment on either Monday or Friday of each week at 12 noon, because the last couple of weeks we have taken the noon spot on one of those days.  To say I speak with her pediatrician at least once a week would be conservative, as she so graciously answers my text messages multiple times throughout the week in order to try to keep Sonzee out of the potentially germ infested office.  As I have previously stated, we have an amazing pediatrician (it is okay to be envious).  Last week when the little bear started to act a little off the first thing I did was take her to her pediatrician on Monday.  

We decided that minus Sonzee's low-grade fever and little cough, that it was safe for her to ride out whatever cold she had without the aid of antibiotics.  Her chest sounded perfectly clear, she was tolerating her feeds well, and her older sister had a runny nose so we assumed it was just par for the course.  I left the office with the directions to keep an eye on her and to be in touch if necessary.  Every night for the past couple of months Sonzee has slept attached to a pulse oximeter that measures both her oxygen saturation levels and her heartrate.  Let's be honest, my neurotic self has wanted one of these handy little devices since I became a mother, so it was a small jackpot when I was finally able to score one for baby #4.  Once we got one, it was time to commence an attempt at a decent night sleep.  My lack of sleep since we got this was now no longer due to my fear of her stopping to breath in the middle of the night.

On Tuesday night, every couple of minutes the alarm would ring when Sonzee's oxygen level dipped below 90.  It was honestly getting frustrating hearing the alarm ring when it was only for 10 seconds or so and then it would pop right back up.  I ended up changing the settings to only alert me if the levels fell below 89 because that was the number it consistently was falling to.  On Wednesday morning I texted her pediatrician and asked her at what point I should put the oxygen on Sonzee.  I gave her an update on how things were and we were both still not concerned about how the bear was doing.  It was not until Wednesday night when Sam and I started to think that maybe things were headed in an unwanted direction.

It was around 1:30am Thursday morning when I realized I was not going to get any sleep because the alarm was constantly ringing.  How my dear husband sleeps through that sound is something I will never understand.  This time I watched the clock as time seemed to stand still because not only were the numbers in the low to mid 80s, but they remained there between 5-10 minutes each time they dropped.  Per her pediatricians directions, if the numbers were in the 80s for a significant amount of time (5-10 minutes) it was time to place the bear on oxygen.  It was at this time I yelled at Sam to wake up and told him that I thought it was time we hook her up to the oxygen.  I was not quite sure how to use the machine because when it was dropped off I had just gotten home from the hospital and my attention span for learning about an oxygen machine was nonexistent.  Sam got it set up and then we were all able to get some sleep.

By Thursday morning, her cough sounded awful and we attempted to turn off the oxygen, but her levels dropped immediately.  I panicked on the inside thinking that our Passover holiday was for sure going to be spent as a split family, with myself and Sonze at the hospital and Sam and the other kids at our friends' as previously planned.  I spoke with her pediatrician to fill her in on the situation and we came up with a game plan.  Sonzee started antibiotics and we continued with the oxygen.  

I have to admit that in the recesses of my brain I was fearful that this was going to be the cold that started her never-ending requirement of full time oxygen.  I kept that thought locked far away so it would not be one of those self-fulfilled prophecies.  Sonzee did look adorable even with the cannula in her nose, but I was not "prepared" for this to be her new every day look.  Sure, I became pretty swift with my maneuvering around with both her oxygen and her feeding tube bag while on the go, but this was not something I anticipated when she first showed signs of being sick.  We slowly began to lower her oxygen levels on Saturday.  When she was awake, she was able to go short periods without requiring any oxygen to be given.  I slowly started to breathe.  By the middle of the night on Sunday, she was removing the cannula in her sleep and was really aggravated that I was continuously putting it back in her nose.  I finally gave in and figured I would see what happened if I turned it almost completely off.  Sure enough, her oxygen level remained above 95, so I turned it off.  By Sunday afternoon, I was even able to say my previous fear aloud, as I realized my little bear prevailed yet again, and she was not going to require the oxygen 24/7...at least not now.

This little girl is definitely a force to be reckoned with.  She is a grizzly, polar, and brown bear all rolled into one Sonzee Bear package (complete with an adorable outfit and of course a matching bow).  She fights each little battle with such determination.  She is so strong and deserves such praise when she comes out victorious.  This cold could have easily sent us packing our bags to the hospital; the outcome could have been completely different.  Today we celebrate the small victory of being able to treat a cold at home.  We celebrate that we were and are able to continue to celebrate the Passover holiday as a family, all together, and in a home.  Today we celebrate another win for the home team.

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Sonzee Bear turns ONE

Beginning around the time Sonzee turned 10 months it really set in that she most likely would not be sitting by her first birthday.  From the day of her first seizure and when we later learned she would most likely have developmental delays, I still held onto the hope and vision of her sitting in her high chair with a cupcake in front her.  I pictured her like all of my other children hesitantly reaching out to touch the frosting and then taking a taste making a huge mess on her face.  I have loved the pictures of the messy smash cakes that I have of her siblings, I wanted to add to that collection.  As the day quickly approached, I knew it was not necessary to purchase a mat to place under the high chair.  I knew she would not be participating in this "coming of age" event, at least not for this birthday.  

Her birthday celebration was a perfect day in the sense that our closest friends and family surrounded us.  Sonzee participated in her favorite event of sleeping, and I suppose she had a right to celebrate her birthday in that fashion.  She had the most spasm episodes in the past week of course all throughout the day and that of course was disappointing to say the least.  I wish she did not have to suffer all the time.  I was distracted by everyone in attendance so I did not have a chance to get emotional about everything that was not going the way I had envisioned.  To be honest, the only time I almost cried in front of everyone was when I brought out the cupcakes and everyone began to eat them, but we had not even sang "Happy Birthday".  At the same moment, I looked over at the bear and she was peacefully asleep.  I was hit with a mixed bag of emotions all at once.

The little bear decided to grace us with her presence shortly after.  We ended up being able to take a picture of Sam and me holding her as I held her special cupcake.  There are no cutesy pictures of her diving into the cake with carelessness.  There are no pictures of her all smiley or crawling around in a mixture of cake batter and pink/white frosting.  On the positive side, that is not something that NEEDS to happen with every first birthday, it is just something that I like to have happen.  I can focus on the fact that she enjoyed her special day the way she loves to spend her days.  I have pictures of her cuddling with various people.  I have pictures of her looking beautiful in her birthday outfit.  If I am honest with you, even focusing on the positive still has me left with an empty feeling in my stomach and some tears in my eyes.  However, I still have hope that on her second birthday, she will be sitting on the ground and able to smash into a cake for me to take a million pictures, and I have a whole 365 days to picture this momentous occasion.

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One Week

A lot can happen in just one week.  For Sonzee, one week is the amount of time she spent in the NICU after she was born.  It is the length of her first hospital stay the first time she was admitted for what I was certain were seizures.  A week is the length of time that goes by when we add up and tally the events of her seizure log.  A week is the amount of time that is left before my baby is no longer considered "a baby" in terms of her age.  In just one week, I will put my baby to bed and she will wake up "a toddler".  I am so torn with my emotions.  

On the one hand, I am so excited to celebrate HER and her birthday.  I cannot wait to celebrate ALL that she has overcome in the previous year of her life.  I am looking forward to the new year ahead and all that is in store for her specific cognitive, emotional, and social development.  I am so overly excited that we have her here to celebrate this day with us.  These are the facts that I try to focus on, that I try to repeat in my mind as her first birthday continues to creep closer, because there is the other hand.

On the other hand, her birthday is a reminder of the milestones she has not yet accomplished.  It is an unfriendly reminder that the goals that we created for her are still not mastered.  My soon to be toddler is unable to sit unassisted, and truthfully, even assisted she has difficulty.  My almost one year old does not have any words to communicate her wants or needs.  My soon to be one year old cannot hold her head up while she is on her tummy for more than a couple of seconds and she cannot crawl.  When she wakes up on her birthday, she will still look like a tiny 6-month-old, but she will be ONE.

In many of the ways, the blank canvas of her year to come is no different from any other child's, but in many ways, it is.  I am fearful of the year that lies ahead.  I dread the awkward looks and uncomfortable situations that will follow after people ask me her age.  I am scared for the new medical experiences we are going to be facing.  I am nervous about her first surgery and if it will be her only one.  I am petrified for what is in store for her seizure activity and all of the other things I do not even know are to come.  

At the same time, I am anxious to see if the ketogenic diet and RSHO control her seizures enough for us to wean off her remaining pharmaceutical.  I am optimistic that this year will be amazing for her growth in all areas.  I am excited at the potential of meeting our baby girl who is trapped inside her body.  I am eager to see if this year will be the year we can check off some of her milestones.  

In one week, I will decorate our bedroom door, where Sonzee sleeps, as I do for all of my children on their birthdays.  I will place a sticker on her onesie that says "12 months" and take a picture of her in front of the chalkboard sign in our playroom.  In one week, I will sing happy birthday and give her a keto-fied cupcake for her to taste.  In just one week, I will give her a present that she will hopefully find interesting and enjoy.  In one week, family will fly into town to celebrate a year that has gone by that was unlike any other our family has experienced.  We will gather around the Bear and celebrate all that she has accomplished in 12 months of life, and look forward to all that she will accomplish in the year to come.  In one week there will be a lot of smiles as we celebrate this joyous and momentous occasion, but truth be told, at the same time, there will also be a decent amount of tears.

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