November 9

November 9

On November 9, 2015 life as I knew it drastically changed. Our three month old second son was diagnosed with infantile spasms A "catastrophic" form of epilepsy. I'll never forget the doctor's words when I asked what his quality of life would be. "We can't answer that" she said.  I  Didn't understand. Our baby was healthy, he was born beautiful, perfect....he was born, healthy. Our world crumbled. In that little hospital room of 8 north in the children's tower, time stood still. It was the longest few hours of my life. Trying to wrap my head around the future when I was gasping for air in the present.  

Obviously, Life did go on. The sun came up the next morning and little by little we've found our way.  For the past year our family has hung to strength, hope and our faith to get us through the ups and downs this journey has taken us on.  By the Grace of God we pulled through the darkest times of our lives. 

How ironic. 

November 9, 2016. Exactly one year later I was left speechless once again. Donald trump was elected to be our new president.  Hillary was for families and children. Especially those children with special needs like my Anthony. What did trump do? He made fun of them. I can't support that. I was in disbelief. As I got over the utter shock and disappointment I began to piece together the irony of the day and what I have learned this past year. 

Hope......,strength...... , and time..... 

.....Maybe that is all we need. 

You're still my baby....

It's 10pm and Anthony has been sleeping in his crib for about two hours or so, and I just did what was probably the biggest "no, no"of all time.  I went in and picked up my perfectly sleeping, non fussing, sweet dreaming baby.  

I picked him up....and cuddled him.  

I did it because.....

he's still my baby, after all....

I feel like all day we are pushing him to move, pushing him to sit, getting him to eat, pressure on his arm, massages, crossing mid line, etc, etc!  He gets six therapies a week... SIX!  

I am in constant worry...how will he catch up, when will he catch up, will he catch up?!!?!?

It's tough.

Babies are sitting, crawling, standing, walking all around us.  

He will get there.

He will.

So, for now, why not bask in those extra baby cuddles he is willing to give me?

Happy First Birthday, Super Baby!

It's the eve of my son's first birthday... actually no, it's 12:03am on July 22nd.  Anthony is a one year old!  I have so much to write, but it's late (obviously) and I need to sleep so that I can give him the most fabulous first birthday ever.

He certainly deserves it.

As I reflect on this year it's hard to really believe everything my little boy has been through.

 Looking at that 8 month old picture breaks my heart.  In a way, it's harder now to see those pictures.  When we were living through it, you don't realize how different your child looks because you are with them everyday.  But I do remember how awful the medicine made him feel.  And how if he gave me one smile in a day...it was a good day.

When we were home from the hospital in early May the boys and I were driving and the song "I Stand By You" by Rachel Platten came on the radio.  First I thought of Brad, and then I thought of Anthony, and I just cried.
 ".......  And love, if your wings are broken
Borrow mine so yours can open too
Cause I'm gonna stand by you

Even if we're breaking down, we can find a way to break through
Even if we can't find heaven, I'll walk through hell with you
Love, you're not alone,

 cause I'm gonna stand by you..."

 

 

I told Brad about the song and it quickly caught on, soon after when Nicholas heard the song he would say "Hey, it's Anthony's song!"

A few weeks later Anthony gave me a special gift for my birthday.  It was the Rachel Platten CD.

Track 6 spoke to me even more......"Better Place" 

 Even through a tough year, I can't believe in some ways how much happier I am.   When you have a medically fragile child your whole perspective on life changes.
You...open your eyes again..
You don't sweat the small stuff.
You look for the good in everyone.
You recognize people's differences, and celebrate them.
You're patient
You're hopeful....
You're....happy.

Anthony, my world is a better place .... because of you.

"I'll tell the world, I'll sing a song
It's a better place since you came along
Since you came along
Your touch is sunlight through the trees
Your kisses are the ocean breeze
Everything's alright when you're with me

And I hold my favorite thing
I hold the love that you bring
But it feels like I've opened my eyes again
And the colors are golden and bright again
There's a song in my heart, I feel like I belong
It's a better place since you came along
It's a better place since you came along

I see the whole world in your eyes
It's like I've known you all my life...."

Happy birthday sweet boy!  I can't wait to spend a special day with you.

Happy Mother's Day! On finding your strength.

If you are a mother or are close to your mother, then you know how special this day is. You also know the true meaning of unconditional love. A mothers love is so deep that she would do anything for her child.

As a daughter to an extremely loyal mother, I know this, I feel this, I aspire to show this to my children, every single day of my life.

People have commented so many times on my strength during this difficult time with Anthony's health. Though I agree I am strong, I have to stop and examine how I got here. It wasn't strength right out of the gate. It has taken time..... it has been a process.

There were many, many dark days for me. Before writing this blog, before many people really understood the depth of our trials.

Days when it was hard to get out of bed. But I did for the kids. Days when I didn't take a shower, heck I rarely brushed my hair. Brad would come home and I would hit straight for the sheets.

Watching your child having spasms is an extremely helpless feeling.  I would have to time them and track them.   There were days when they lasted up to 20 minutes and happened five or six times a day. Those days I didn't feel strong. I felt pretty damn weak. And I was.

Like the time I saw him doing it on the monitored and I wanted to scream. I didn't want to go in his room. I was so angry.

So, when we talk about strength.... it's a process.  I feel honored when people tell me I am strong. But I also feel an obligation to showing my weakness too. It's difficult for a mother to watch their child face adversity. But it's a small price we pay for loving unconditionally.

As mothers we do what we have to do.

So, if you have a medically fragile child, or if someday you do, remember this....

Push through the weakness....you WILL find your strength.

...and then there was HOPE

The boys are sleeping, just had an incredible meeting with a friend in Premier and delivered my last Hopeful necklace.

And I am feeling amazing.

It's crazy how during such a DIFFICULT time, I can feel so good.

...because of hope.

We never let go of hope, and today we got some incredible news regarding Anthony's diagnosis.

You see, on March 4th we got news that Anthony had a very rare genetic mutation.  So rare that there are only 11 known cases in the world.  So, obviously there is not a lot of information out there.  At this meeting in early March the doctor told us "You, the parents will also get tested for this.  If you have the same mutation,  that you passed this to him and it may not be the cause of infantile spasms, since the two of you are living with the mutation and do not have problems."

The doctor told me not to go on the internet and look up the mutation.

I did anyway.

I found a very small group of parents (9) whose children are living with this.  All the children have a different variant of the gene mutation, including Anthony.  I talked to one of the moms one night and learned about  the horrific mutation and her daughter's struggles with it.

March was a pretty tough month for me.  Brad and I got our blood drawn to see if we carry the mutation, but I didn't put any hope into it.  This mother told me it is de novo mutation that is not inherited and none of the parents passed in on to their kids.  So all of March, I pretty much prepared for the life that Anthony could have with this mutation.

Once we were in the hospital for 3 weeks for the bought of meningitis, I did a lot of soul searching.  I began reading some inspirational testimonies, dug deeper into my faithful Premier Designs Jewelry business and began challenging my life's purpose.

Once we got home I realized I did not care the outcome of Anthony, I just want Anthony to be just that....Anthony.  I want him to just be the best that he can possibly be.  If that is him never saying a word in his life, I didn't care.  The bottom line is that Anthony is HERE, he is here, for a reason.  Smiling at me and making a HUGE difference in my life.

I finally accepted it.

I accepted the gene mutation and the nasty things that may come with it.  I began to feel amazing again.  I felt like I had a deeper purpose, and Anthony was leading my way.  It was actually deeper than anything I'd ever felt before in my life.

And then we got the phone call.....

"Mrs. Kovalovsky, the epilepsy panel came back.  You do not have this genetic mutation, but your husband does.  He has the exact same variant as Anthony.  It is very unlikely that this nasty gene mutation is what is causing the infantile spasms...."

and then....

there was HOPE.

Lucky....

On the day before Anthony was diagnosed with Meningitis his temperature was 102.5  So, I gave him tylenol and I took him to the medical group here in town.  At that point his temp went down to 101. 

 The doctor did all the right things.  She tested him for flu and strep, listened to him and examined him.  Everything checked out ok.  She told me if the fever gets worse to take him to Strong, since he's been followed there.

"What if the fever continues to be 102?" I asked.

She said..."It will be that high for a few days, whatever is going on needs some time to work its way out of his body..."

Before bed we gave him more tylenol and that was that.  Anthony did wake up once or twice in the night and I did the usual, have awake half asleep, walk to his room to nurse him and then back to bed.

I never gave him Tylenol in the night.

I never even thought of it.

So, when he was BURNING UP-(like literally...his face looked like a tomato :()I was mad at myself for not giving him the tylenol.

When all was said an down, I realized that it was a damn good thing I never gave him that tylenol in the night.

If I had given him his Tylenol dose every four hours-would his temp ever have spiked?  Would we have ever brought him in?  Or when we did, would it have been too late?

It wasn't until we were back home with the PT looked at me and said

 "you realize how lucky you are right?"

She agreed that the tylenol could have just masked whatever else was going on.  

Meningitis goes bad, and it goes bad...fast.

and God....

Are we lucky.

More than just a word. To Mrs. Rayburn on her Birthday

HOPE

In the past I never really, truly understood why people had attachments to words.  I mean, I have "live, love, laugh" trinkets and signs hanging in my house.  But, I never really "got it"....until now.

When I was in high school we did many breast cancer walks for my best friend's mother Mrs. Rayburn <3.  There is one walk in particular I will never forget.  I was a sophomore in high school and Mrs. Raybrun was in remission.  My friends and I were at an overnight breast cancer walk and  in the middle of the night they had the ceremony with the  luminaries all lit up in the form of one word... HOPE.

I remember thinking it was beautiful.  And that was that.

But what I'll never forget, is how Mrs. Rayburn was attracted to it.  She didn't walk away for the longest time.  She held her daughter and together they silently stared at the word...HOPE.

I now know exactly what she was doing in that moment.

She was hoping.

Hoping for continued health?  Hoping for her friends and family?  Hoping for a cure?  I don't know for sure.....

But I just know.......

She had HOPE.

Happy birthday lovely lady.  Thank you for inspiring me to have HOPE, even in my darkest days.

I love you.

We got a "PASS"

Friday night Brad and I both stayed up with Anthony.  After getting the news that Anthony needed longer treatment, I didn't want to be left alone.

In the morning a doctor said to us "I hear you are getting a pass to go home in between Anthony's treatment?"

We had very briefly talked about it on Friday, but hey, if they are going to give us a green light to go home for a few hours, we will gladly take it!

My brother was in town and has been a huge help to us.

He drove up to pick us up and we carefully loaded Anthony in the car.  I made sure that the car seat was cleaned, Nicholas was bathed and Anthony was wearing a face mask before we headed outside the hospital walls.

When we pulled up to the house Nicholas was "doing bubbles" and had no intention to look at his brother.

But as soon as I picked him up to see Anthony, he dove in and hugged him.

It was pretty special.

As a family we walked around the house re introducing Anthony to everything.  Lead by Nicholas, we showed him his nursery, Nicholas' room, the toy room etc.  We celebrated Nick's birthday with Anthony too.  Anthony was all smiles.  I think he was pretty happy to be home!

Nicholas put on his super hero gear and was ready to protect his baby brother all over again.

It felt SO good to have our family home.

I can't wait for more days like today.

Super Powers

April 14, 2016. The best day we've had in a really long time. It was our baby, Nicholas' third birthday and it was time to celebrate!

This child has been through so much with being away from his parents and his baby brother. At night time he will ask one of us to "rock in the nursery". We know that is his way of telling us he misses Anthony. We know it's tough for him, but big brother Nick is courageous. 

Brad and I decided to spend the night Wednesday night home so that we could wake up with Nick on his birthday. My mom was staying over night with little guy. Thursday morning we wake Nicholas up with balloons!  He was so excited. Then we venture downstairs so he could meet his brand new and very first bicycle!  He loved it!  We opened some other gifts and then it was time to hit the streets. 

We joined our first three year old story time at the library,

did  "chalks" on the driveway and then headed up for lunch at Olive Garden. One thing I really wanted for Nick was a little celebration at the table. I thought he'd get a kick out of it. It was fun!

My amazing friends at the school put together a care package for us. Included was a build a bear gift card for the birthday boy!  A fantastic idea- so creating batman build a bear was next on the list. Then Lego store and the merry go round.

It was 4pm before we knew it an Nick (and mommy) passed out on the way home. After nap we went for a walk in the neighborhood and then called it a day.

Happy Birthday to our other SUPER Hero, Nicholas!  The most courageous big brother I know!

Rare Gem update: The doctors like to call Anthony a little puzzle, a mystery kid. Anthony likes to trick the doctors because he clinically always "looks so good" but tests show a different result. For example, the fact that he even contracted listeria meningitis is beyond them. They've never heard of it in a baby this age. And they can't believe how good he looks for a baby with meningitis....remember, the doctors looked right at us and said "we don't think he has meningitis, but we are just going to be sure..." 

After the 21 day treatment Anthony needed an MRI and repeat lumbar puncture to be sure infection is killed and we can be in our way. Shouldn't be a problem the doctors said. He looks so good...

Once again little joker guy fools us. Who would have thought that little abscess were formed in his brain? :(

 Not the results we hoped for. Treatment needs to be another 21 days.  That night was very hard for me.  I so badly wanted to be home, and be with BOTH of my boys.  I couldn't think about anything else.  Someone called to share some happy news and I just couldn't bear it.  This was not the time for us to be happy about anything, we needed time... at least one day.



Doctors still reassure us that the best indication of how he is doing is how he looks clinically. He smiles ALLLLLL the time.  And boy, does he look good....

The hope is that we can go home in treatment so that our family can be together again. 

He's so strong and courageous, he even fools the doctors.  I guess that is Anthony's SUPER power....

You can't control the storms...

When it rains it pours....

 and I feel like we've hit a monsoon. 

Moving to the children's hospital tower was great.  It meant that our child was stable enough, and well enough to leave intensive care.  But with that came some anxiety.  In the PICU he was checked every hour and was extensively monitored. When we got up to 8 South his breathing and heart rate got a little wacky and I was nervous.  The nurses were changing, it was 10pm and I couldn't think about falling asleep.  I expressed my concern to the nurse who just came on shift-Luke.  He reassured me and said---"I will check on him every hour for you."

Nurses are saints.

Although I didn't get to bed until 1:30am I felt relived knowing that Luke had an extra eye on Anthony and would alert me if needed.

On Monday Anthony needed a pic inserted for the duration of his stay so that he could get his antibiotic.  He needed sedation for it so that was worrisome, but it should be a short procedure.

  I was a bit upset that when Anthony was transferred for his procedure, we were in the halls with many other people.  A construction worker who had dirt on his jeans and boots jumped on the elevator with us!


I stopped the nurses in the hall and said "You do know my son has a very weak immune system right?  Is there another way we could be taking?"  The answer of course was "No" so I needed an explanation from the Infectious Disease doctors.

I am NOT a helicopter parent.  I let my child drink juice and eat popcorn because I know I'll just drive myself crazy if I read everything on the internet against that stuff.

BUT when you have a sick child--you tend to get a little wacky.  And rightfully so.

So, on Tuesday Anthony was sitting in his little chair smiling and kicking his legs a ton!  His pic was in and all was well.  I was meeting with the Infectious Disease team to express my concerns for Anthony's immune system.

She just got done explaining that I can't keep him in a bubble and a lot of things we just can't control....

And then Anthony out of the blue starts wailing,

I go over and pick him up out of his seat.

And there it is hanging out of his leg, was the pic.  It somehow got detached from his leg.

The transfer to radiology, the sedation, the hours of him not being able to eat ahead of time....all needed to happen all over again.

I held my crying child and I just started crying along with him.

I was weak, and I needed to be.

The doctor just put her arms out and hugged me.

"You deserve a break" she said.

We do.

We deserve a rainbow.

Perspective...

When I think of an intensive care unit, I think of visiting my grandparents after they've had a major surgery.  Those are the only times I've ever been to an ICU..

So, when you are living in the PICU with your 8month old, everything changes.

Your perspective on life, your children, your friends, your family...

everything.

You are siting at your child's bedside watching the monitors and waiting for nurses.  You are hoping and praying that everything will be OK with your child.

And you just know that in the hallway, every other parent is doing the same thing.

That realization came to us when we walked down the hallway.  When the visitor limit is 2 and we see a room filled with family members, we know it's not good.  Hovering over a bedside, curtain closed.  And then we look over and there he is.  A large african american man, crying his eyes out...

And our hearts sink for them.

And it puts everything into perspective.

We aren't out of the woods yet, but we are getting there.

Our doctors are saying Anthony looks Fantastic and should make a full recovery since it was caught early.  

It's bad, but it could be worse...

it could always be worse....

WELCOME TO HOLLAND....

When we started this journey I didn't know where to turn for support.  An infantile spasm diagnosis is pretty rare.  I had so many questions and needed to find answers  Luckily, in the world that we live in there is so much support online.  I quickly found a support group on Facebook and was able to vent, and ask questions freely.  I reached out to one of the parent advocates often and she guided me many times.  One day she passed along this poem.


And I cried my eyes out....

Ironically, When Brad and I decided to start a family we were honeymooning in....

Italy.

 It was a dream come true trip.  We drank wine, ate amazing food, mingled with the locals and saw the sights of Italy I only dreamt I would ever see.  I finally went to the place where my grandparents were raised.  I felt very much at home there.

Two weeks after we got home we found we were pregnant, with our first child, Nicholas.



Nicholas was our "honeymoon" baby.  Literally and figuratively...
I loved being pregnant and his delivery was great as well.  Thanks to the epidural I got to be IN the moment during his birth.


I remember admiring his lashes and his little dimples.  He was just perfect!

Our honeymoon baby never really got over that "honeymoon" phase.  He made parenting easy.  When my friends were complaining of their babies not sleeping through the night I was feeling lucky that Nick slept in his crib, in his room, at 8 weeks old.  And he never really stopped after that.  He never had colic, nursed great and when needed, never refused the bottle.  Just happy and healthy!


His milestones were by the book.  He was either early or within weeks of hitting them and it continues to be fun watching him grow.

It's not that Anthony wasn't a "honeymoon baby" or isn't a "honeymoon."  He certainly is.  

It's just different.

It's a different honeymoon. It's kind of like a honeymoon to.....

Holland.

Anthony's delivery was a bit different.  It was only 4 hours, so there was no time for the epidural and no time for "The Kardashian."

But, when I saw him for the first time....

I. FELL. IN. LOVE

I was hooked. I bonded right off the bat with him.  I was stunned by all his dark hair and his chunky cheeks. And the happiest moment of my life was when our family was reunited and Nicholas met his baby brother, his forever best friend, for the first time.

The first few months of Anthony's life were so much fun.  Nick loved to help.  He would grab his stool and help me change his diapers or get the wipes ready etc.


Anthony didn't really fuss as a baby either.  He LOVED to snuggle and I remember just keeping him on my chest for hours.  He was a strong baby and even rolled early at 3 months.  He smiled easily and was even sleeping through the night at 6 weeks!















When everything changed it was hard to wrap my head around the fact that my baby wasn't meeting his milestones.  I was so used to Nicholas always being on target.  It was always in the back of my head what Nicholas was doing at this age.

I mean, I never got upset about it or anything.


It was just......different.


I think the regression is the hardest part.  You never want to watch your child go backwards.

Once he started gaining strength again (after both diagnosis) it was like we hit the jackpot!  I never thought I'd get so excited to see my baby do the simplest things like suck on his fingers or grab a toy.

They say God only gives us as much as we can handle.

 I am so glad He gave me Anthony.  He has already taught me so much.

Nicholas is our Italy baby, and Anthony is our Holland baby.

And I wouldn't change it for the world....

21 Day "Fix?"

Easter Sunday....

We wake Anthony up (which is odd to begin with that WE wake Anthony up in the morning...) so we can do our traditional Easter things- egg hunt and open Easter baskets.  Nicholas is all excited as the Easter Bunny started the hunt right outside his bedroom door!

However, I am nursing Anthony in the nursery and he is just burning up.  Temp: 105.  105!!!! Unheard of!

So, we shoot some Tylenol down Anthony, steer Nick away from the egg hunt and hop in the car to Strong ER.  While Nick spends Easter at Gigi's, we spend the day in the ER. The nurses and doctors quickly get to work on our baby.  IVs pumping him with fluids, blood draws, lung and chest x-rays, lumbar puncture....all trying to figure out what is wrong.

It's an infection....

but where and how is the question.  Is this linked to his infantile spasms relapse?

Yes, in a way it is.  His treatment ACTH-is a hormone injection lowers his immune system.  So, we kept him in a bubble as much as we possibly could,

but somehow he contracted this infection which we later figure out is .... bacterial meningitis...

   We went through lots of "he said, she said" at the beginning.  From Doctors in the ER saying "We are going to test him for meningitis, but I really don't think that is what it is..." to Doctors in the PICU saying....

"You know he has meningitis right?"

They tell us the good, the bad and the ugly of what the night could look like.  At one point Brad puts his head against the rail of the crib.

I know what he's thinking.
 Please don't have this go to the "ugly..."

In these types of situations it seriously is an out of body experience.  Looking back I have no idea how we got through it, but I guess your body goes in to fight mode and you buck up, you get strong.  After all, we have no other choice BUT to be strong...

Brad stays at the Ronald McDonald house and I stay in the PICU with Anthony.  In the PICU he gets hourly checks and Sunday night goes relatively well.

By Tuesday we have a clear treatment plan and the Infectious Disease doctors tell us that his treatment needs to be a whopping 21 days.  Ugggh, 21 days in hospital treatment.  So, I guess Anthony will be getting his own "21 day fix"

Thursday we moved to the floor and the doctor's said he looked fantastic!  He should make a full recovery from the meningitis as it was caught early.  The little stinker has actually been smiling up a storm, I think it could be due to the ACTH out of his system, but he sure does love to flirt with all his nurses.  I just love him.

With flu season children under 14 can not visit, so the brothers won't get to see each other for a while.  Brad and I will make it work going back and forth with the kids.  Nicholas' 3rd birthday is next week so we will celebrate together with him while someone stays with little guy.

Oh yea, and then someday we will have to get back to that egg hunt.....