"I DID IT!"

It's been over a year since my last post.  It's been that long, mainly just because we've been busy and I just haven't gotten to it.  I wrote one in March of 2017 signifying Anthony's 1 year of being seizure free (yes, we are approaching two years of seizure freedom, at the end of this month!) But the post  got deleted and I honestly just didn't have the patience to rewrite it.  It was good too!

Things are about to get even crazier here in the next couple months so I figured it was time to update you on our family, and the soon to be middle child...Anthony!

A lot has changed in the 15 months since our last post.  Yes, our family is growing!  We are expecting a baby girl at the end of March and we ALL are very excited!  Nicholas enjoys UPK, making new friends and learning!  He shares his love for Thomas the Train with his brother and it was so fun to take the family to the Strong Museum of Play and watch BOTH boys get excited over Thomas and his Friends.

With all the changes, the MOST rewarding and thrilling has been with Anthony.  15 months ago Anthony was just about 15 months old.  He just learned to sit and was army crawling.  I wrote the last post on our trip to Florida to visit the family and Disney World in November 2016.  It was a great time, but I remember feeling frustrated because I couldn't get Anthony to sit in the park stroller or get a picture of the two boys because Anthony wasn't strong enough and willing enough to sit next to his brother.  My patience was tested.  Even though I had frustrating moments I was able to let it roll off my back and we had some incredible times and great memories!

When Anthony first started army crawling at 15 months old I remmember thinking, great next week he will be crawling on all fours! Ha! I quickly learned to slow down the clock tremendously.  I learned that the motor delays Anthony was displaying were a result of the Meningitis that had attacked his brain and particularly the "motor strip." on the left side of his brain. No wonder his advances were taking so long.  Our PT explained it takes a lot of time to regain mobility when the neurons are affected.  So if he needed time, we gave it to him.  Basically, it took about 6 months before he moved on to the next skill.  He army crawled for six months, crawled on all fours for six months and then, finally at 27 months old he took his first independent steps.  It was an incredible moment!  Once he started, he didn't want to stop.  Now three months later he likes to tell me "I go FAST Mommy!" as he runs through our house!  Nicholas loves it too, they line up for races, Nick refuses to let him win, and Anthony doesn't seem to care!  

Again, it has made me look at perspective.  In the past so easily I could be annoyed with my moving and grooving child.  You'd hear statements like "Ugh, why is he getting into the cabinets?" "Don't put that in your mouth!" "He's getting away from me and into everything!" coming from me.  I know those things get frustrating, but now I could never take for granted having a child that develops at a typical pace.

Starting to stand 10/2016 (15 months old)

Sitting and trunk support with vest (15 months)

Army crawling 10/2016 (15 months old)

Crawling on all fours 4/2017 (20 months old)

Using his walker

November 2017 walking to Nicholas (27 months)

A big part of his initial diagnosis is the gray area on what he will accomplish with his receptive and expressive language.  He had a slow start, but Anthony is talking and understanding so much now.  He is only a few months behind cognitively!  He loves to name all the colors and some letters and numbers too.  He is starting to count into the teens and he loves Elmo, playing with buses and trains and sword fighting ;) He talks A LOT more and is able to say some phrases.  The Happiness House and all of the early intervention services have been a remarkable place for him to meet friends and learn and grow.

Of all the things Anthony is saying, my very favorite phrase he says is....

"I did it!"

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.