Wednesday, September 28, 2016

Disappointed but not surprised

I am disappointed, but not surprised.  I assumed it would only be a matter of time before her little seizure freedom vacay came to an abrupt end.  I wish it could have lasted 40 days.  I can only describe my feelings as similar to planning a vacation around a blizzard or a hurricane.  You hope and pray that you will make your flight and your trip will not be cancelled because you know at some point the weather will make everything close down.  In the back of your mind, you can still envision the fun that will ensue if you should be so lucky to make it to your final destination.  When it is time to be on your way you learn that your flight will be cancelled and they do not know when they can re-book you.  You are angry, sad, and extremely disappointed, though this was not shocking news, so you turn to plan B.

I wish we had a plan b.  I mean we do in a sense, we actually have a plan b, c, d, and e, but just like most plan B's they are not as good as the original plan and honestly, I just want my original plan back.  Oh wait, that plan has not been followed since 2/11/15, so I guess I will just suck it up and continue with the windy path that we are following.  I do not want to apologize for my bitterness, but I probably should.  I am just so sad and frustrated right now.  I wanted this seizure freedom to last longer, although I know deep down that is such a selfish request.  Plenty of children who have a CDKL5 mutation are not afforded 39 miraculous days of peace and tranquility.  I really am truly grateful for the time she had free of all of the fogginess in her little brain, and I can only pray this little setback will not turn back into the full-blown chaos it once was.

I can tolerate their return as long as they do not steal our little bear away.  I am willing to compromise as long as they are not relentless and unforgiving.  I know what they are capable of and I just pray they are in the mood to negotiate.  All of our potential plans are currently in a holding pattern as we figure out what the best move will be.  It is always a delicate balance between bringing out the nukes, the tanks or waiting and watching.  I also need some more time to wrap my head around the fact that our vacation has been cut short and we have not received our new itinerary.  

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Monday, September 26, 2016

Waiting room thoughts

Today I found myself in one those situations that my brain has not figured out exactly what to make of.  I finally took Sonzee in for her long overdue well visit.  She has been in many times since June for shots, sick visits, and sometimes just because I feel it has been too long since we have seen her pediatrician, but not necessarily for a "well visit".  We are so far behind on her well visits and vaccinations that the form listed this as her "15 month" well check.  Just so we are all on the same page this should have in fact been a delayed "18-month" visit because she is actually 19 months old.  

As I sat in the waiting room, to our left was a baby girl who looked like she was in for her 6-month well visit, and to our right was a brand new hot off the presses baby who was probably in her car seat for the second time since birth.  I looked back and forth between these two babies and of course at Sonzee who was repeatedly trying to remove her tube from her nose, again, for the 100th time.  Depending on which baby I looked at, different thoughts entered into my mind.  

As I looked at the 6 month old I had the biggest grin on my face because she was so cute trying to eat one of those pages from the "can't rip, can't be destroyed" paperback book collection that my children did managed to actually destroy.  She was so excited as she intently looked at the book trying to figure out a way to be successful in her various attempts to complete her mission.  My thoughts started to say, "Phew, at 6 months these parents would know, this baby does not have CDKL5".

To my right, this little baby girl sat snugly in her infant car seat.  She was so much smaller than the seat; it looked as if the seat was swallowing her up.  Her head tilted to the left and she would periodically open her eyes and look around.  She looked so sweet and so perfect.  As I looked at her all my mind could think was, "when Sonzee was that old, we had no idea".  I noticed her parents looking at Sonzee each time I readjusted her tube.  I am completely speculating, but I can bet that at least one of their thoughts wondered why Sonzee had the tube in her nose.  I know I have been guilty in the past of seeing a child and wondering about them and secretly fearful if my child would be in a similar situation.  (I am sure that is not at all surprising about me).  For these parents, if they had asked me, (although rare) this isn't even something I could reassure them wouldn't be the case at their daughter's age.

There was no part of me that felt envious or jealous of those babies.  There was no part of me that was saddened by our situation at all.  I know that means I have changed so much since our little bear’s diagnosis.  I honestly do not know what to make of my thoughts, if there is anything to make of them at all.  I hope the parents of both of those girls celebrate each and every little milestone they make as they grow and develop.  I hope and pray that neither of those babies have any type of genetic mutations in their bodies and they can grow up living happy and healthy lives.  I hope for Sonzee that she continues to bring a smile to my face with her sassy shenanigans, amazing wide mouth numerous tooth grin, and her cutesy personality.  But something I do wonder about, is if there will ever be a time that I will look at things without "pre or post diagnosis" thoughts.

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Friday, September 23, 2016


It is 3:00am and little bear and I are awake.  Lately this has become our middle of the night routine, although the time varies.  Tonight it has been since 2:19am that I heard her breathing change and she made a noise, the type that makes me second-guess her seizure freedom so I run to her crib.  False alarm, little bear is only participating in one of the other fun-filled side effects of having a CDKL5 mutation, sleep disturbances/all night parties.

I put on her red ladybug starlight figuring that since she is awake she might as well take full advantage and work on her vision (and hoping) this will keep her from wanting me.  The time passes and her breathing changes, I of course get up every time (reluctantly because I am scared each time will reveal that in fact she is seizing) and each time (thankfully) she is just chewing on her fingers or sucking her thumb.  Regardless of how many times this continues I cannot seem to shake away the worry and feeling from the pit of my stomach.

As usual in our house both of her sisters seem to be woven into her and of course it has turned into a full on party with little girls calling for us or wanting to cuddle.  (Thank g-d little man loves his sleep far too much to join in).  I have gotten all three back into their respective beds, but I know for sure I will not be back asleep anytime soon.  It is 3:11am, little bear has now kicked off her blankets, and she wants me to put them back on.  I tuck her in (again), give her head a rub, and a kiss, and turn off her ladybug light telling her it is sleepy time.  She literally chuckles at me, makes a little protest, but obliges.

Back in my bed I listen to her breathe.  I know no matter how content and quiet she is I honestly will not fall back asleep until she does.  As if sitting here awake will change whether she has a seizure or not.  I have decided that no matter how long this streak continues, the further in we get, the worse the heartache will be when it is over.  I have tried to create ways to protect my heart, but I know there is not anything I can do to cushion the potential blow.  It is 3:17am; she is not showing any signs of wanting to resume her slumber, despite her bodies attempt to let her know by yawning that maybe sleep would be a fantastic idea.

The worst part about her middle of the night shenanigans is my mind has nothing to do but run wild and free, and it is exhausted so you can only imagine the places it goes.  The silence is a conniving place, you would think it would bring about peace and contentment, but after almost an hour, I have still not recovered from the initial panic and fear her wake up brought me.  It is now 3:27am, every so often, she starts to talk or she gets ultra-excited and starts to kick her feet, I would love to know what she is thinking.  One thing is for sure it has nothing to do with going back to sleep.

Wednesday, September 21, 2016

A Year Ago: Monday: Drafted on 9/21/2015

I sat down to write a new blog post and saw that my first guest post was written a year ago today.  This was for "A regular day in" series.  It was a year ago but I don't have to reread my words to remember exactly how this day went, this was how many of Sonzee's days have gone in her life.  I look back on this and smile because in a sense we have come so far from where we were just one year ago today.  I will be sure to follow this one up with a recent view into our daily lives.

Monday: September 17, 2015

There is a low tune playing behind my head.  I reach back quickly to swipe the arrow across my iPhone so the alarm ringing won't wake Sonzee up; it is 2:55am, time for her Charlotte's Web Hemp Oil.  I hit the dim setting on the light behind the bed, and grab the bottle sitting on the pull out drawer in-between Sonzee's bed and myself.  Through blurry eyes I manage to shake the bottle, grab the dropper, and stumble awkwardly over to her.  I count out 4 drops...or I attempt to considering I can barely see straight and she is not so forthcoming about opening her mouth.  She turns her head from side to side in protest as I am sure I just interrupted what was finally a nice dream.  I watch her swallow (as I pray to G-d she won't get annoyed with me, wake up, and then want to be fed at this ungodly hour), count out another 3 drops (I hope).  I place the dropper back in the bottle, tighten the lid, hit the light switch, and back to sleep we go.

I hear a is 3:13am and it appears my attempts at quiet were futile and now it's time for a midnight snack.  I am really starting to develop negative feelings towards this better work some hardcore magic.  In a drunken stupor I carry the bear over to the rocking chair so my back doesn't protest while she eats.  Even our almost 7 year old cat knows the routine as she attempts to uncurl herself fast enough in hopes tonight I won't sit on her.  It's a near miss, but clear escape for her this time.  I hear the deep breaths of daughter #1, and low and behold she is sleeping next to hubby...AGAIN for the third night in a row.  I silently debate the pros and cons of this arrangement and decide I have no energy to wake either of them and besides she is only young once.  It is now 3:23am; let's try this sleep thing again.

The last thing I am aware of is the back of my eyelids when I hear the scream.  My body knows this scream like a lifelong feet hit the floor before my eyelids are lifted.  Her body is equivalent to the feeling of a dead hamster, yet I somehow manage to get her in a hugging position.  I swipe my phone; it is 4:18am.  I rock her and kiss her wondering if I burped her well enough an hour ago.  When it's finally over I see it is only 4:21am, good 3 minutes, it felt much longer.  Her body continues to tense, but her limbs are limp so I call for Sam who holds her and reassures me it is just the chills.  I hear daughter #2, maybe her body is silently woven to her sister because she makes a sleep whimper and puts herself back to sleep (thankfully).  

Sonzee and I cuddle under the blankets, and yes, it was just the chills as she is now back asleep and relaxed.  The damn cat is trying to cuddle as well...I have tried to shoo her 3 times already since the seizure began, can't she take the hint?!?! It is 4:37am; I place Sonya back into her bed and cover her.  She is so peaceful looking.  She shuffles a bit and I wonder if she'll need another snack.  It is 4:42am and I am actually contemplating this sleep thing again....
Sleeping after her 3am seizure
Again there is music in my ear; it is 6:55am and time for Keppra.  The syringe sits prefilled next to the Hemp Oil so I don't have to do more than roll out of bed to administer it.  I glance over my shoulder and see a sleeping Sam and daughter #1.  Normally by 6:00am little man would have been by the foot of our bed telling us why he does not want to get dressed for school, but of course, not today.  I tell my husband to move, and then drift off to sleep, even though I know I have to get up to pack lunches.  7:14am reads the clock; I encourage everyone to start moving.  Daughter #1 is turtling her way about her morning routine, and our dear son has started his morning protests...daughter #2 and Sonzee remain asleep, for now.  

I walk out to the kitchen and check the lunch menu, "Macaroni, grapes, and snacks"; thankfully the box of noodles can cook in 5 minutes since that is pretty much all the time I have.  18 minutes behind schedule, the kids are off to school.  Daughter #2 is ready in her gymnastics clothing and I finally start to get ready myself.  I throw a load of laundry into the wash, switch the wash load to the dryer and begin to fold the clothing that sat in the dryer overnight.  Around 8:20am I hear Sonzee start to whimper; it is her post seizure coma whimper, she is finally ready to eat after her episode from 5 hours ago.  I feed and change her, and my sister and nephew pop in to say good morning.  My phone has already rang twice since 8:00am, but I have not checked it.  I am packing Sonzee's swim stuff because today is aquatic therapy day.  I hit play on the voicemail assuming it is just the follow-up call to our OT evaluation last week, that I never had a chance to return on Friday, but instead it is the office calling to tell us Mr. Mike is sick, and there won't be therapy today. 

The tears fill my eyes as I realize she has not had PT since August, nor will she until October due to scheduling conflicts.  I feel like I am a failure.  I send Michelle, our movement lesson guru a FB message asking if she has any additional morning slots open, knowing she is booked, but hopeful for a cancellation.  Sonya still hasn't built up her energy from her earlier seizure and she is asleep on her play-mat.  I move her bed.  It is 9:28am, when it dawns on me that I hit snooze on her 8:55am Topamax alarm because I was on the phone, I HATE WHEN I DO THAT.  Thankfully it is within the hour window, so I go over to her and she takes it while she sleeps.

She of course wakes up and I feed her.  Then it’s back to work for her on her tummy in an attempt to work on her arms.  I bought a wedge off of amazon, it isn't what I anticipated, but it will work.  She can at least stretch her arms to try and bear some weight.  Daughter #2 is eating some yogurt and skittles (I know so healthy).  My alarm rings for her 10:55am Hemp Oil.  

Sonya doing tummy time
We get all packed up and head off to the chiropractor by 11:40am.  Sonzee gets adjusted and Dr. Danielle and I chat so we are there for about an hour or so.  Sonzee has a quick lunch and diaper changes occur.  Afterwards we head off to movement lesson, Mickey Mouse and the Three Musketeers is playing for dear daughter #2 while she eats her lunch.  We get to Michelle with a minute to spare before our 2pm lesson.  We discuss my most recent concerns regarding Sonya's questionable physical movements, I am not sure if they are sensory related, CDKL5 related, or just "baby do weird things movements".  I show her a video of Sonya holding her toe and sucking the pacifier while we were with Dr. Danielle!!!  
Sonzee getting adjusted with Dr. Danielle
We rush out of Movement Lesson and I mute the 2:55pm Keppra alarm.  I call Sam to tell him to meet us at gymnastics so we can do the child swap.   He meets me at 3:52pm; no way will we make it to dance 60 streets away in 8 minutes.  Daughter #1 changes quickly in the car, he hands me the requested Tylenol I texted him about earlier due to Sonzee's crankiness, and daughter #2 gets transferred out of my direct care.  

Daughter #1 and I share a little small talk and then she drifts off to sleep for five minutes.  Surprisingly we get to dance only 8 minutes late.  Of course it dawns on me as we are rushing out of the car that I AGAIN forgot to give Sonya another medication on time today.  This time her 2:55 Keppra dose will be an hour and 15 minutes late.  I yell at myself again.  I lug the car seat out of the car with Sonya's bag and daughter #1's dance bag.  Sonzee and I take up our usual spot on the floor outside dance class.

Sonzee in her carseat at dance
 Sonya decides she wants to eat again, so we alternate sides and then she chats up all the dance moms.  She always likes to talk to people when we go out, and it is so nice to hear her cute little noises.  We go upstairs for daughter #1’s second class and Sonzee can get some floor time in.  She does some rolling and ends up on her tummy.  At 6:00pm class is over, but daughter #1 enjoys taking her time, and I talk with people in the studio so we don't leave until 6:18pm.  We finally arrive home close to 6:45pm and Sonzee goes on her play-mat and gets the Tylenol I forgot to give her, daughter #2 and little man get some tickle time, and daughter #1 is asked 3 times to put her clothing in the hamper, change into her PJs and eat her dinner.  6:55pm the alarm rings for Sonya’s hemp oil, this time I only forget for 3 minutes before the panic of missing the dose sets in.  She eats again while I eat my luxurious dinner of chicken nuggets and french fries Sam threw into the oven for me.

I hand Sonzee off to Sam at 7:40pm and jump into the shower for some much needed alone time before he will head off to hockey and I'll be back to manning the post.  I sit down at the computer.  All kiddos are in their beds; it is 8:35pm. 

Then the scream.  For 3 minutes I hold Sonya tight as she convulses against me and whimpers.  The tears fill my eyes, anger fills my entire body, Taylor Swift plays in the background and I just picture Sonya "in a nice dress, staring at the sunset, red lips and rosy cheeks".  The alarm rings, it is 8:55pm.  I am back in reality.  Her last Topamax has been given for the night, her two dosages of Keppra are filled and ready to go, sitting next to them is her Charlotte's Web hemp oil; and I'll be heading off to have some of my “Wildest Dreams”.

CWHO, morning Keppra, night Keppra

Monday, September 19, 2016

30 days and 12 hours (9/18/16 at 9pm)

It has been 30 days and 12 hours since our little bear had a seizure (as of this post being written, and I hope by the time this publishes I do not have to make any corrections.)  I can still remember the exact way she looked, where we were, who else was present, and the emotions that flooded through me.  I have a feeling that no matter what length of time that may pass, the details of her past seizures will always be there in my mind and haunt me.  Every body movement, eye roll, and sound that she makes sends a jolt through me that takes my breath away.  I often wonder if that will ever subside.

She is doing absolutely fantastic in so many ways.  Her head control is the best it has been in her life.  People that do not often see her make comments on how healthy she looks and how big she has gotten.  While she does not look directly at people who walk up to her, if someone talks to her in an excited manner and they wait patiently, she will give them one of her signature smiles.  It does depend on her mood how big or small the grin is, but she loves to give them out.  She loves to be around people and to interact.  In the past when she was upset, she preferred to be left to herself, but yesterday I did my usual "try anyway" approach, and she actually fell asleep while we were cuddling in my bed.  A moment that may never occur again, but was photographed and etched into my mind forever.  How long will this last?

Others have asked me this question AND I cannot lie, I wonder the answer myself.  I also wonder if I actually want to know the answer.  There used to be a part of me that would say "yes", please tell me how much longer our Sonzee bear has of being free from the havoc of seizures.  I would rationalize that I would need to know so I could enjoy every second and truly cherish the moments.  If I was at a different point on this journey, my answer might not be the answer I am comfortable with right now.  However, I know what is different and I know why.  

Not so long ago I wrote a post about change and how the entire concept confused me in regards to what roll "change" had on me.  I look back at the past four months, I can see how I am different, and I can even tell you why.  I can tell you that during Sonzee's 28-day hospitalization at Phoenix Children's Hospital there were days I actually pictured walking out of the doors without her coming home.  The thoughts I had during some of those days are honestly too challenging to relive just yet, but I can tell you they did make a positive impact to the me of now.  So if you ask me now if I want to know when this dream will end, the answer is NO!  I can promise you that I am enjoying every moment to the fullest, and I am cherishing every typical and atypical Sonzee moment she has to offer.  Even the Type A part of me is quietly hushed in the corner knowing all too well that her opinion does not matter.  

Whatever amount of time we are afforded with our bear in general and as a bonus with her being seizure free we will take with gratitude and appreciation.  Despite the bated breath that each movement, eye roll, and sound she makes brings to me I will continue to be grateful for each minute that she is not in pain and that she is not seizing.  No matter what happens to her seizure control, no one can take away the past 30 days and 12 hours of pure peace and joy that we have all been fortunate enough to experience.

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Wednesday, September 14, 2016

Ryan House

In the beginning, once it becomes public knowledge that you have a child who requires extra attention, you are told the following phrase in many variations, "take time for yourself".  Friends, family, even the veteran special needs parents you have just befriended, essentially every person you talk to has this advice as if it were the most important bible passage ever to be referenced.  If you are like me (which I think many rookie special needs parents are) you nod your head in agreement, state that of course you will, and then you go back to doing the exact opposite of the recommendation.  Days, weeks, months, and maybe even in some cases, years go by before you realize that you really do need to ensure you take time for yourself.  Not just an hour in the evening or a quick run to the salon for a massage or mani/pedi.  Sure, those are great, but in all honesty, they are not going to leave you as refreshed, renewed, or roaring to go as they might have in the past.  You really need to take time for YOU.

As a special needs parent things are different.  Trust me; it is not an elite club that you should try to be a part of.  While qualifying for additional state services such as insurance, therapy services, nursing, respite, etc. might sound absolutely amazing to those who aren't part of this system, I can assure you (from personal experience), this is one of those clubs that whomever is in it will embrace their position, but they wouldn't wish it on their worst enemy.  The stress, worry, guilt, lack of sleep, constant daily battles with the above-mentioned perks, hospitalizations, ensuring the rest of the family doesn't fall apart, and essentially every other possible thing you can think of is enhanced tenfold and it makes functioning on a daily basis much more daunting.  It is not to say being a parent in general is not exhausting or full of crazy emotions and tasks, it is just, this is different.  (I can say that with certainty as I parented two 100% healthy children and one with a "mild" heart defect prior to the birth of Sonzee Bear).

I recently received a message from another mother of a special needs child.  I have used this mother's guidance and advice literally as my bible since Sonzee was diagnosed.  She has other children, she has experienced more than I have, she is a person to be trusted, let us just say, she knows her stuff.  What she told me has been repeating in my mind since I received the message.  She mentioned that I need to make sure I take time for myself to be the best mom I can be.  She said if she could do things differently from the start that would be an area of focus for her.  Respite.  This message could not have come at a more perfect time as I have been feeling drained and while things are at their calmest in terms of Sonzee, I have been essentially running a special  needs mom marathon since this little girl has been born.  I have referenced marathons before, they require a lot of preparation, preparation I did not have.  

Caring for Sonzee on a daily basis requires many alarms.  Alarms to give medication, alarms to refill her formula in the feeding bag, weekly doctor appointments, and therapies, reminders to refill medications, insurance phone calls, etc.  She is a lot of work.  I do not say this to earn sympathy or to complain, I say it as a blanket statement.  Special needs children require more.  Hiring a babysitter for children in general is not easy; you have to be extra diligent these days.  However, trying to find one you trust enough to not become frustrated with a nonverbal child who doesn't have control of his/her limbs, and has medical needs is no easy fete.  Sure if someone qualifies for nursing you might think their family has it "easier" because the medical portion is covered, but now you are trusting someone to give your child medications appropriately and that is never easy.  Our family has been extremely fortunate with our caregivers, they are practically family, however, they have lives as well.

Over the last month in various situations, the name Ryan House was mentioned.  It is a facility in Phoenix that provides respite to families with a child who has a life limiting diagnosis.  Respite comes in the form of a minimum of 24 hours up to 7 days at a time.  I have been hesitant to look into the benefits of the services they provide because of the guilt of leaving Sonzee with others.  While I worry other moms of special needs children will say they could never use this service themselves, I am starting to truly understand that if I want to function at my best not just for her, but also for all of our family, then I truly need some longer time respite.  They require an initial family stay of 24-48 hours so they learn how to care for Sonzee just as we would.  For future stays, the entire family is allowed to stay as well and the nursing staff will care for Sonzee while we can have a family-bonding day.  Even her beloved Miss Holly can stay there as well (Isn't that exciting Miss Holly??  Since this is the first time you are hearing of this.)  I just took the first step and we have a tour scheduled for tonight shortly after this post goes public.  I am nervous but eager to learn more about what the Ryan House has to offer.

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Monday, September 12, 2016

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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Thursday, September 8, 2016 can be worth it

I wrote on Tuesday that I feel like all I do these days is wait.  The worst part about waiting is the obvious part, because let's be honest who enjoys waiting for things? (Well I guess that does depend on what exactly is being waited on and if you happen to excel in the area of patience). For me (since we all know patience isn't exactly my thing) waiting just builds anticipation and potential hope and the outcome isn't always what I personally intended it to be.  However, It is always extra spectacular when all of the waiting I have done turns out to be beyond worth it!

As we continue counting Sonzee's amazing seizure free streak (she is currently 20 days and 7 hours in case you were wondering) we have been privy to witnessing some amazing accomplishments that I was unsure she would add to her personal list.  Her head control is amazing, she can sit supported (when she wants) for a large amount of time, she only arches her back when she wants to be "all done", she absolutely loves her sensory box, and my most favorite addition is she is able to have and enjoy an actual bathtime experience.

Had you asked me a couple of weeks ago I would have said "we need to really pursue a bathtime chair that reclines because she is definitely way too big for the infant tub she has been using (yes, we have been bathing her in the infant tub we have used for all the kids...yes she still fit...but not for too much longer). Last night I was so eager to get her in the tub. I was worried that my timing would be off and we wouldn't have a happy bear on or hands.  In between painting my oldests bedroom and getting the kids to sleep I decided it was the only time to perform my little experiment.  I took little bear and as I filled up the tub I placed the light up toys and bubbles in the water.  I placed her in her seat and held my breath.

Then the stars aligned.  Not only did her experience exceed my expectations, I was so appreciative that everything worked out beyond my wildest dreams.  There was nothing better than that 6 1/2 minutes where she focused on the toys, tried to grab them, and sat herself up in the chair!!  These are the moments that make the waiting bearable and WORTH EVERY CHALLENGING MOMENT UP TO THEM.

So now I dare myself to look forward to the moment Sonzee sits by herself without support because I know when that moment happens I better have a box of tissues nearby.

Tuesday, September 6, 2016


Waiting.  It seems to be a majority of what I am doing these days.  Waiting for appointments, waiting for offices to call me to schedule said appointments.  Waiting for tests then waiting on those results.  Waiting to start medications, waiting to wean medications.  Waiting to see the outcomes of all of the playing we do with her medications.  Waiting for her skills to emerge and hoping that none of them disappears.  Waiting is not my strong suit by any stretch of the imagination, but the absolute worst waiting of all...waiting for the damn seizures to return. 

I feel like Debbie downer sitting here waiting for the shoe to drop, but let us be honest and is bound to happen.  She has been spasm/seizure free for 18 days and 3 hours as of this posts composition.  This is by far her longest period of freedom since her last round of spasms that we treated with high dose steroids.  I have experienced this waiting game before.  It was as soon as I started to think we might have outsmarted the seizures that they rudely showed back up at our door, not welcomed.

It is challenging not to let the fear get the best of me, yet I know it does nothing good for anyone.  So while I am part of this awful waiting game, I try to enjoy and cherish every moment.  I try my best to balance between encouraging little bear to gain new skills while being skeptical that I might have pushed her too hard, which might trigger them back.  I try to video every smile and giggle so I have them documented and ready for the future when I have to watch them as reminders of what she is capable of while also viewing them to keep my hope.  I try to surround her with the things that make her most happy because this is the time she can enjoy them the most.  

I really dislike this part.  The part where I am most excited about how far she has come and so fearful that she will lose everything she has worked so hard to gain.  This for me is that part of the coaster where the tracks are hidden and it is uncertain which way the ride will continue.  Will we keep moving steady, take a slight climb, or drop 40 mph downward with little to no warning?  Regardless of the way this portion of the ride will end, one thing is for harness is pulled snugly against my chest.

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Friday, September 2, 2016

Are you done?

Ever since Sam and I married, we have been asked about having children.  First, it was "when do you want kids?”  If you know me at all, you know that I have wanted kids since I was a little girl, so that was an obvious answer.  The next question was "how many?”  I am unsure if Sam and I had a concrete answer at the beginning.  As a child I had always envision between four or six, because five is an odd number.  With each child, we added into our family we would stop and consider what changes an additional child would add to whatever our current situation was.  Then we were given Sonzee.

Prior to Sonzee, I honestly never really considered that we would have a special needs child.  Being in the field of speech language pathology, I was not even really fearful of having a child who might require additional attention, but then again I had never heard of CDKL5 prior to April 17, 2015.  

When I was pregnant with Sonzee, we thought for sure she was a boy.  We had two girls already and only one boy, so obviously this baby was a boy.  I spent an entire eight months envisioning a "girl’s room" and "boys room".  It only dawned on me a month before she was born that this baby could very well be a girl.  I nearly had a panic attack trying to figure out how we would be putting three girls into one bedroom.  (I suppose I should thank G-d for solving that problem).

When we were asked if we would have more children we would joke and say "fourth and final".  I wanted to put that on a sticker for my maternity pictures, but Sam said, "Don't do that, because what if we have another and then that child thinks he/she wasn't wanted".  (No, I am currently not expecting, but I suppose that was some decent foresight).

Prior to Sonzee being born I think I was undecided if I would "want" a fifth child, but I was fairly “certain" that we would be good with four kids.  Six is a nice solid family number, four is an even number of kids, and it would be the "perfect" family.  Now we have Sonzee and three other amazing children.  Yet when I am asked, "are you done?" my reply is not so straightforward.  "Undecided" is my typical response.  

I know I do not owe anyone an explanation as to why we would or would not want another child, but I often struggle with what people would think since we already have four kids and one is special needs.  Would our choice to have a fifth make people think negatively of us?  Shouldn't we just be happy with the kids we already have?  I struggle internally as well.  There are so many positives to having another child, but also so many unknowns.  

I personally do not worry about whether another child of ours would have a CDKL5 mutation, anything is possible, but it is not a hereditary genetic disorder in our case.  Could another child have a disability?  Sure, they could, but that would obviously be what was in the cards for us.  Are we crazy?  Well I would say yes since we have chosen to have four kids on separate occasions.  (Insert stick out the tongue face).

Usually I wonder about my older kiddos, but they have mentioned to us about wanting to have another sibling on multiple occasions.  Would Sam and I get a chance to be better "first time parents" in a sense?  (There would be nothing taken for granted that would be for sure).  What if Sonzee had a bad year the same time a new child was born?  So many questions to siphon through, so many answers we might never get.  Nevertheless, since everything often circles back to Sonzee, what I have been sitting here meddling with is maybe becoming a big sister is something we need to add to her adventure list?!

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