1000 words

They say a picture is worth a thousand words.  That was the very first thought that popped into my mind when I received the email from Shutterfly that Sonya's school pictures were ready to be viewed.  I had spent the last week in anticipation of seeing hers since her older siblings all received theirs already.  I quickly opened the email and then paused.  Or maybe it wasn't so much a pause as I got smacked so hard in the face I had to pull myself together.  Maybe it hit so hard because things are completely all over the place in our house this week?  Maybe it hit so hard because I am a firm believer in never doing retakes because whatever occurs during the picture is the reality of life in that specific moment?  Maybe it hit so hard because I initially had forgotten about what actually occurred on picture day in the first place and after a quick moment I was jarred back into reality.

I debated between this two-piece outfit and its fraternal twin whose shirt was a dark shade of greenish blue.  I had been voting on the darker shirt but was vetoed by others who felt the mustardy yellow was brighter and better suited for picture day.  I obliged.  I picked out 2 glitter ponytail bows and let nurse Paige do her thing (clearly she is always on point as evidenced in the image below). The morning of picture day I told Sonzee numerous times "your pictures are in the morning, please wait and seize after".  When I dropped her at school a little after 9am I gave her a kiss and reminded her again to just hold off until after her pictures, and then got back into the car.  Within 8 minutes I received a text that said "Ugh. For real. Pics are at 1030".  Nurse Paige mentioned they were going to try and fit her in at a different time after she woke up, and I replied: "ok, if not it's the life of Sonze".  They waited, put on a horse and pony show-pompoms and all and nurse Paige said: "she is just sort of blah". 

A month later and I forgot.  I forgot how much I dislike CDKL5 and I forgot how her mutation causes issues in every. single. domain.  I forgot that I don't exaggerate when I say "she seizes all the time".  I forgot that no matter what medication we put her on it won't take away the negative effects her frameshift mutation causes.  I forgot that she gets absolutely no say in how her body treats her and how much she has to always endure.  I forgot that even though a picture says 1000 words, Sonzee cannot say one and we won't ever know what she must have felt like after she endured one of the literally (conservatively averaged) 5,000th seizure she endured before being placed in this chair.

When?

I feel like this April, in general, hit me like a ton of bricks.  Deep down I know the reason is that we have been on this journey for 4 long years and even though each minute brings on something slightly different, the meat and potatoes are always the same.  It is the same race for a cure, the same challenge to find seizure control, and the same tight rope walking of managing a nonverbal 4-year-olds quality of life. The years seem to go by, the medicines and equipment change here and there, but the routine of it all stays the same.

Honestly, it is quite daunting.

It seems we are always trying to find the perfectly shaped bandaid to cover whatever difficulty Sonzee is facing, yet each time I feel like we are living out a real life version of one of those arcade games where you have to hit the chipmunk as it pops out of the hole with the rubber mallet.  Each time we manage to get one chipmunk back down underground, sure enough, the next one is popping up.  Sometimes I am quick enough to smack the chipmunk head on, a good portion of the time I maybe nick the side, but the majority of the time I am completely off the mark as I hover wondering which of the holes the chipmunk will emerge from.

Last night while dinner was warming in the oven, I was finishing up with TPN preparation, my sister and her family were hanging out waiting for the rest of my family to come over for dinner, and Sonzee was in her ppod, when she started having a 19 min and 50-second seizure.  That was not her first seizure of the day either, however, it was her longest by 5 minutes.  I stood next to her videotaping for the 10 minutes the seizure tracker app allows me to record, sent an email asking them to consider expanding the length of videos that can be saved on the server, and waited next to her until the entire 19 minutes and 50 seconds had passed.  Then, as if this is normal, because it is our normal life continued with getting her washed down and dressed for her TPN connection, yet as usual, I was left wondering what kind of life is this for a child, why does she have to endure this, and when is enough, enough?

A "new year"

This past Monday and Tuesday we celebrated Rosh Hashana (the Jewish New Year).  On Monday morning Sam and I debated whether we would be bringing Sonzee to the synagogue in order to hear the shofar (blowing of the ram's horn).  In general I am usually the one that is in favor of bringing her along to family events, while Sam tends to play devils advocate and suggest that Sonzee would much rather not walk .3 tenths of a mile in 105 degrees and sit in a loudish room, "stuck in her chair".  On most occasions she will be in pain, just have had a seizure, or present in some other manner that will make me side with Sam, but on Monday morning, I simply did not care.

Her first seizure of the morning was at 7:57am, seizure number two came a little after 9am, Sam was holding strong with his opinion, but I am more stubborn, and after all this is Rosh Hashana, SHE IS GOING WITH US.  Sam left with the older kids, and I put her baby brother for a nap while she was sleeping the seizure off.  A little after 11 her brother woke up and I was getting everything into the stroller and I told myself I was going to check her one more time to see if she was awake, and if not, I would leave her home.  G-d threw me a bone, she was just waking up, so I told her nurse to get her up because she was coming with us to synagogue, and off we went.

Seizure number three happened in the back of the synagogue, but she was there, she got to hear the shofar sound, and she received the (Cohen Gadol blessing) priestly blessing while she slept in her wheelchair.  We were going to be eating lunch at friends and we decided she and her nurse would come with us and hang out there versus going home.  It was on big seizure four of the day (within 6 hours from her first) that she was given her loading dose of keppra and snuggled on the couch with her nurse.  What a way to welcome a new year...good thing the secular calendar has another celebration in 3.5 months that we can hit refresh for.

I will admit her presence with us all day was 100% selfishly directed, but is it too much to want some normalcy?   As Sam left with the older kids yesterday, he said "see you at 11:30", I yelled back, "no you won't".  He said "You have to hear the shofar", "So does Sonzee", I retorted.  I will admit that I threw myself a toddler tantrum and refused to go to synagogue because "If Sonzee was not going, neither was I".  I was angry, to be honest, I still am.  While she had fewer seizures today, (thanks 3200mg of Keppra, VNS, and Fycompa for doing what you're designed to do?) I am still a bit bitter.  I just hope Monday is not going to indicative of what is in store for her year to come, but I suppose if it is, it isn't anything we aren't used to. 

Mommy bloggers, Join me @ Top Mommy Blogs

It's not fair

On Sunday morning I placed Sonzee's little brother on his tummy for a little workout.  Full disclosure, I don't do it as much as I did for his older siblings, but honestly with (what we perceive as) a fully intact set of genetics, I am not overly worried about his neck muscles or a flat head.  I videoed close to a minute of him holding his head up while Sonzee was nearby rolling from side to side.  I was so excited he held it for so long and then equally as excited that I didn't cry because my almost 3-year-old has never been able to hold her head while on her tummy for more than 10-15 seconds, and those 10-15 seconds require an immense amount of effort.  

I (stupidly) decided to watch videos of Sonzee when she was around the same age as her brother.  I know how much she works to attempt basic skills, but it literally broke my heart in half to see her struggle video after video to even try and lift her head for a second to turn it.  As I watched a couple of videos I was immediately transported back to the exact day they were taped, mixed with emotions of relief we had a diagnosis of epilepsy and fear of the unknown.  It must be some kind of protective mechanism of my brain, but I honestly forgot about these videos, and I swear in my mind she could at some point hold her head up and that she lost that skill.  I liked my reality better.  

It makes me so angry that everything is an uphill battle for her.  It makes me angry her life will not ever get easier.  The basic skill of holding up her head, which just happens as part of typical development within weeks of being born without any effort for a typical child, my almost 3-year-old cannot do, and it is not due to lack of trying.  In fact, those videos were worse to re-watch now knowing her diagnosis was more than epilepsy.  The days they were created it was impossible for me to know just how hard her struggles would become.  I feel like I did such a disservice to her making her work so hard and inevitably it not being enough.  A repetitive theme woven throughout every aspect of her life.

My heart is so full and simultaneously heavy these days.  There is so much joy with Sonzee's baby brother, yet so much aching from the cards she was handed.  We spend our time focusing on the positives and pushing out the negatives of life with CDKL5, but honestly, a life with CDKL5 is just not fair.

Mommy bloggers, Join me @ Top Mommy Blogs

Disappointment...again

For the past two summers I have created a list of "attempted goals" in my mind that I wish for Sonzee to achieve.  I always tell myself to be realistic, but to be honest, this is the one time of the year I actually feel extremely optimistic that during these four weeks there is no reason why she cannot progress leaps and bounds when there is nothing else to do but work with her.  Then the summer begins and the hours of each day pass by, the days turn into weeks, and I am left realizing that my fantasy of Sonzee gaining substantial ground is just that, a fantasy.

The scenery has changed, the environment is different, but the effect of CDKL5 is and always will be the same.  The seizures perform their daily havoc, actually, they are pretty much the only skill that she seems to make advances with.  Just 5 weeks ago she was having small little questionable moments, and now twice a day on average she has undeniable episodes.  I do not know when I will truly realize that we are not ever going to beat the seizures.  There is no magic potion to wave them away, and deep down I really do know this.

Her jumper is hanging in the doorway here in our townhouse and her stander sits by the wall.  Both have been used twice.  The Upsee has spent the entire time hanging in a bag on the laundry room door, my desire for us to walk together for 5 minutes a day has yet to be met.  Her bike sits by the fireplace next to a basket of toys she has zero desire to play with despite the various attempts her siblings and I make to get her interested.  Essentially, nothing has changed except my feelings of defeat are far more pronounced. 

It is the moments like these that I realize that even though I thought I had lost my hope with her, it was there, hidden away in a small space in my heart and mind, hoping to prove the majority of my heart and mind wrong.  In the end, all it does is leave a pain in my heart, a fog in my mind and it solidifies why it is I really dislike everything that surrounds the word "hope". 

Mommy bloggers, Join me @ Top Mommy Blogs

Becoming accustomed...

Whenever Sonzee goes through months of multiple daily seizures I do get numb to them.  Some of them bother me more than others, but overall "I am used to them".  I feel like when I say that to people I genuinely believe it.  Seizure are part of all the amazing offerings of CDKL5, well really it is more than that, THEY are the essence of CDKL5 at its core.  However, it is not until Sonzee experiences a break in her seizures and they return that I realize how much I was fooled into thinking I was/am used to them.  I guess I was not aware of just how talented my brain has gotten in constantly shielding me.  

I have watched this little girl seize since she was a newborn.  I have seen her body move in ways that are just not normal.  I have seen so many several types of seizures that my descriptions typically involve some morbid explanation that leave some of her doctors uncomfortable, but they at least understand what her body is doing based off my words.  I always try to accompany my descriptions with a video, but it is obvious that even the professionals find it uncomfortable to watch.  Which makes me realize just how not okay this situation is, no matter what my brain tries to convince me of.

There should not be any parent who must "get used to" witnessing seizure activity in their child.  This should NOT be an effect of a disorder.  My brain should not have to find a way to cope with this.  It just should NOT be.  I do not think I will ever understand why the hallmark of a CDKL5 mutation must be the most volatile atrocious experience you can possibly watch your child go through.  My brain clearly has limitations with its capability of comprehension in this department.  I guess I will just have to give it a couple more days and I will be back to the state of numbness that I get accustomed to and prefer.

Mommy bloggers, Join me @ Top Mommy Blogs

10 days

Today marks 10 days until the 2 year anniversary of CDKL5 Diagnosis Day.  I am blown away at the mere fact that it has been TWO entire years since we first learned about CDKL5.  I do not know if it is more surprising to myself that we will have survived two full years of this unexpected journey or that it is still just as hard to make it through each day.  If I had been asked on that day where I would see myself or Sonzee at this point, I know I would not have been correct with my reply.  While I was filled with fears of the future, I could not have fathomed any of the experiences we have endured over the past two years.  It is practically impossible to even guess how this journey will play out unless you are actually living it.

Two years.  Approximately 730 days since I sat in a small office at the PCH Northwest valley specialty and outpatient center, and was handed a piece of paper that "explained" why Sonzee was having seizures, but not telling us how to stop them.  We were given a reason for her (soon to be) delays, her cortical vision impairment, her (soon to be) gastrointestinal issues, but again no way to prevent them, stop them, or help them from occurring.  We were given a string of characters that essentially sums up the cause of her challenges, but does nothing else to help us help her.  In 10 days, it will be two years, and we are no better off than we were on the day before we were told her results were in.  Yet here we are "celebrating" two years since her "diagnosis day".

I have always felt relieved that there was never someone or something to hold responsible for Sonzee's CDKL5 mutation, it helps to remove a lot of the anger.  However, I think one of the best things that come from this anniversary is that I can spend the days leading up to it, and the day of, releasing what bits of anger, hatred, and utter dismay for CDKL5 I have, so I can move on and then go back to dealing with this life.  I remember in the 24 hours from the time we knew results came back positive for a cause to Sonzee's seizures I felt it did not matter what we were told because "at least we would know", "at least we would have an answer".  Now as I sit here looking back over the last two years and to the future that lies ahead, I must ask myself, were we/are we really any better off having an answer?

Mommy bloggers, Join me @ Top Mommy Blogs

Tears

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

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

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

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

Mommy bloggers, Join me @ Top Mommy Blogs

Deja Vu'

Pretty much since I started blogging I have followed a similar routine when it comes time to write my posts.  For the most part, I wait until all of the kids are in bed, I pour myself a glass of wine (or two), and I open YouTube so I can listen to the same song on repeat.  I am unsure if it is because of the message of the song, the notes of the music, or the actual lyrics, but what is a guarantee are the tears that flow on cue when I press play.  I guess that is why this has become the perfect therapeutic outlet for me.

The last month or so has been another tough one over here at Sonya's Story, especially for me.  There has been this lingering feeling of deja vu', I can feel it in my bones.  It is an eerie feeling; I know that we have traveled this path before.  One of Sonzee's biggest battles is with her GI system.  In May, she spent 28 days in the hospital and four days prior to me showing up at the ER frustrated out of my mind I wrote this post.  I am about at the exact same level of frustration, maybe even more because I have lived through that hell once already; I do not want to do it again.  I am just as sad as I am frustrated because I am fearful of my gut.  My gut has said since her labs in August that things are not what they appear.

I am so incredibly broken on the inside because I really do not know if there is anything we can do for her.  This has to be the absolute worst feeling to have as a parent.  I have been in touch with her team daily and/or weekly depending on their involvement, we are trying everything we can, but we do not even know what is really going on inside her complicated little body.  I know she is miserable.  I know she is frustrated we cannot figure out what she is telling us.  I know we are doing our best, but I also know our best just is not good enough, again. 

We are back at the drawing board, we are going to run labs, we are going to see results, but there still might not be anything we can do for her.  My feeling (and biggest fear) is that her intestines are following in the same path as her stomach.  I wish we knew what made her stomach stop working so we could figure out why it is happening to her intestines.  I am feeling like we are headed for a really steep drop on this coaster and I just hope my harness is on tight enough for this one.

Mommy bloggers, Join me @ Top Mommy Blogs

Angry/Sad

I am in one of my negative phases of being a special needs mom.  I am sad that my child is constantly in pain and suffering, I am angry because it is my child this happened to.  I know there are others in the same boat and I know you get it.  I know this is just par for the course and that I am not experiencing anything ultra special, but I HATE IT.  I hate that I cannot just be living a regular mundane boring life where my biggest concern is how many hours my children will spend in after school activities.  I miss the days of normalcy we once had and I miss that I cannot even think of one of those "huge issues" I used to think was huge because now it has become insignificant.  I miss the days where a decision did not directly relate to Sonzee's quality or length of life.

It breaks my heart that a cold/virus that a typical resilient child bounces back from overnight will take my little girl approximately 6 weeks to get back to her baseline.  I hate that waiting that long does not grant guarantees.  I am so angry she has to suffer all the time.  There is nothing that is easy for her, nothing that comes free.  After we meet with a specialist, she is sent home with eight lines of home care instructions where three are for pain medications, three are to try to determine the cause, and two are simply to keep doing what we are doing with her.  

It is absolutely draining as a parent to constantly feel like you failure because you cannot make things right, there is no way to fix any of this.  There is no doctor that has an answer, there is no child with CDKL5 who has been given a cure, and there is NOTHING that we can do but treat whatever issue arises with our best hand of cards...and pray it is enough.

Mommy bloggers, Join me @ Top Mommy Blogs

Not Today.

Sometimes life just sucks.  There are times when it's not humanly possible to actually be fine with how things are going.  So many times I say, "things happen for a reason", "G-d only gives you what you can handle", and other motivational phrases that I don't always believe in or agree with.  Maybe if I say them enough when things are status quo, I might do better when things really suck?!  I'm guessing I didn't rehearse them very well because today, there is no reason I find justifiable for everything going on in my life and I really find G-d testing my abilities in my trusting of his faith in me. It's all a load of BS.

This week sucks.

If I have a good honest pity party right now I can look back on the past year and a half and also say confidently...things have sucked.  I really do try to find the good in all of this tangled up mess I have found myself in, but I don't want to today.  I want to just scream, shout, and cry.  I don't want wine, I don't want food, I just want to walk around with tears streaming down my face and no makeup on. I want to just be angry.  Maybe then I can sort out my feelings?!?

I don't want to look at any bright sides or be told things will work themselves out...my daughter has a rare genetic mutation with a cure no where in sight...NO IT WONT EVER BE ALL RIGHT!!!  I will get over my funk, once I am no longer seething over the fact that we have been home from the hospital for less than 10 hours and her tube is out of her nose...AGAIN.  Maybe I will do better when she no longer has to rely on her intestines to process food because her stomach is incapable of doing the job it was designed to do.  Maybe things will settle down when my 20 month old is capable of sitting, something a 6 month old does without much effort.  Maybe if I ever heard what her voice sounded like saying "Ema", "Aba", or one of her siblings names, then maybe I would have some faith that things might be ok.

I get it, this is what is in the cards for our family.  I know, I know, "I am strong and capable of dealing with it".  I get it, "I am so inspiring", and "if any family could handle it, it would be us"...yes, I hear all the motivational speeches and sometimes I even believe it, but you know what...today is NOT The day.

Mommy bloggers, Join me @ Top Mommy Blogs

Dear seizures

Dear seizures, 

I have been penning this letter for some time, waiting for the moment that I had enough courage to express accurately my dislike, anger, and overall hatred for you.  I hope this note reaches you when you least expect it, when you are relaxing from your long day of atrocious hard work, after you are finally settling in to rest and you are completely unaware of what is about to come at you.  I hope you are shaken to the core and completely sucker punched; you know, similar to what you do daily to my 17-month-old daughter and ALL of the children that suffer from the sudden abnormal electrical activity you love to share.

You are simply unrelenting as we, the defenders, play a delicate game of "walk the tight rope", balancing between medicating enough to maybe put you at bay and keeping our daughter's essence alive.  You have taken so much already from our daughter that your continued presence simply sickens me.  Each second of every episode that you infiltrate my daughter's beautiful body is another second I spend loathing your mere existence.  Today, alone, that was approximately 900 seconds.  That is 15 minutes of my life I spent feeling utterly helpless, fighting back tears with my heart torn into pieces watching as you took over the body of a helpless child.  It is so beyond frustrating and challenging to find the accurate words to express to you the complete and utter disdain I have for you.  I wish you were tangible so I could find you and give you the reciprocity you so deserve.  

I wish there was a magic potion I could find that would make you vanish from this world so no other parent, caregiver, sibling, or person in general has to witness what I do on a daily basis.  Most importantly, I wish there was a remedy mainly so no person has to succumb to the negative power you possess.  Too many parents have watched you take pieces of their children away from them far too often.  Too many parents have watched you literally suck the life out of their child.  Too many parents have you to thank for the disabilities their children experience and the daily struggles they endure.  Too much heartache and too many tears have been wasted because of you!

What I want you to know is that despite all the negativity you represent, and all the hurdles you place in my way my mission will remain constant and I WILL NEVER QUIT.

I will never give up the fight for a cure to stop your electrical misfiring.  You should spend each moment in constant fear that TODAY will be your LAST seizure.  You should live in a constant state of panic and worry that you will be obsolete from existence and that your damage will NEVER continue.  You should never get to the point that you feel you are a match to every drug manufactured, because my daughter and every other child and person who deals with you on a daily basis is far more resilient.  Most importantly, what you should remember is that every person you are attacking has a momma bear on the defense, and so my friend, you are the one whose days are numbered.

Good luck, 

From a fierce unrelenting momma bear warrior whose life mission is to eradicate you

Mommy bloggers, Join me @ Top Mommy Blogs

Anger

I have always been aware that this journey would follow a similar pattern to that of a grieving cycle.  I understand that the stages of grief can become blurry and that at one-second there can be feelings of acceptance and then snap, the feelings can quickly change to feelings of sadness.  Throughout the last 15 months, I have allowed myself to feel depressed; I have attempted to control the situation by thinking if I was better or changed my ways than maybe a different outcome would occur.  I have “come to terms” with all of the various courses of treatment we have had to try, as well as allowed myself to face the realities of the potential possibilities.  I have allowed myself to enter into the fantasyland of denial, because let us be honest, it is much more fun to dance among the stars.  What I have tried my hardest to do during these past 15 months is to place my anger on the backburner. 

I have had many a conversation with myself (you know you all do that too) rationalizing that getting angry does not serve a purpose, that it won’t change things and it is just a waste of my time and energy.  If I allow myself to be angry, that would indicate there is a person or thing to be held accountable.  (Sometimes I think it would be so much easier if that were the case).  I can justify why being angry is useless, why it will just make me bitter and well, obviously even angrier.  I can list hundreds of reasons why I should not feel angry, but what is becoming increasingly difficult is actually buying into my own logic.

The worst thing about giving into being angry is that I am even angrier with myself for doing so.  At least when I am in denial I can enjoy the moment while I daydream.  When I am bargaining with G-d for a change, I feel proactive, as if I am doing something that WILL help the situation; that will help Sonze.  When I get depressed, I can cry and tell myself that it is all part of the process and that it is necessary because this situation is sad.  However, getting angry, it does absolutely NOTHING.

There is NO tangible reason why my child has a mutation on her CDKL5 gene.  I am not even privy to a spiritual or philosophical reason for that matter either, and probably never will be during this lifetime.  There ARE not people, nor even ONE single person that can be blamed for the frameshift mutation on exon 9 of Sonzee’s CDKL5 gene.  There is NO one I can point a finger at, NO ONE to direct my anger to, No one that is, except G-d.

The spiritual part of me accepts that Sonzee’s CDKL5 mutation has more to do with her soul and its specific purpose here on earth.  The spiritual part of me truly believes that my job is simply to assist Sonzee as she fulfills whatever it is that her soul’s mission needs to complete before leaving this earth.  The spiritual part of me knows that neither she nor any of my children are actually mine, and they are all simply here in my care for me to help them do what they each need to do during their lives.  Then again, I am human.  There is that pesky human side of things, constantly getting in the way.  The human part of me is what is so angry.  Angry that I am forced to watch my child have seizures, pain, and constant daily struggles. I am angry that I do not even have anyone or anything to blame for my current predicament.  I am angry that this situation challenges me in every way imaginable.  I am angry that this situation has left me doubting my beliefs, my feelings, and myself in general.  Since my human side seems to be winning in this spiritual/human battle, it would be nice if my anger would be a benefit to Sonze, because if that would be the case, I can assure you her CDKL5 frameshift would be undone and she would no longer have a mutation on her CDKL5 gene.

Mommy bloggers, Join me @ Top Mommy Blogs