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.....

This is NOT normal.....

When you know something is 100% not right with your child, and you send videos to your neurologist and they tell you it looks "like normal baby movement" it is the most helpless feeling you could ever have.

No, it is debilitating.

I know.....
because I've been there.

January was wonderful.  Anthony wasn't having any spasms and he was gaining strength.  He smiled ALL the time and even chuckled.  He loved to be in my arms and I would dip him and he would get a thrill out of it.  Early intervention services came to my house four times a week.  Those women became my support system and my friends.  I didn't take Anthony out so THEY were my social life and I loved it.

It's amazing what they helped him do.  Anthony moved his lower extremities but his arms were weak.  I would dangle toys in front of him and he would not bat for them.  The PT started teasing his hand and eventually he started moving his hands on his own.  It is crazy how little things like batting for toys were things that Nicholas could just do, and now they needed to be taught to Anthony.






Anthony was close to sitting up and he even rolled a couple times.  At his 6month well visit the doctor was impressed with his progress.  Though he was delayed, he was progressing, and that is all I'd ever want from him.

On January 22nd things changed.  I was just finished taking the boys pictures.  I put them in their matching outfits and set them on the chair in the nursery.  It was Anthony's half birthday and he looked SO good!

Anthony took a nap and we left the room.  An hour or so later I could tell he was awake and I looked at him from the doorway.

He was doing it.

Very VERY subtle, but he was flinching.

The spasms were back....

and I was crushed.


I took a video and sent it to the doctors.  They were not concerned, but every movement Anthony makes from this point on will always be taken seriously she said.  So, we scheduled an EEG.

At the appointment following the EEG, they said that it is not the hypsarrhythmia, it was not that nasty chaos going on.  It was not a relapse.

PHEW!
I was relieved, but needed an explanation as to what it was.  They said it could be reflux.  Baby's make all sorts of odd movements.  He hadn't been feeling well so maybe that IS what is going on.

After the appointment we went to Wegmans for lunch.  As soon as we sat down I look at Anthony and there he was, flinching again.  It looked more intense.  He was having spasms, I knew it, but Brad reassured me that the EEG didn't detect anything.

I was frustrated.

I went home and cried, I tried so hard to be happy that it wasn't back. But I knew in my heart it was.  I did some research and talked to some parents and found out that there could be a delay on the EEG.  Clinically he could be showing spasms and it not show up until later.

I kept in touch with the doctors and once a week for the next two weeks Anthony had an EEG.  They all came back the same.  No Hypps, but still abnormal and flickers in the brain.  Not a relapse.

It wasn't until February 17th when we were in for a 24 hour EEG that it was finally detected.  I remember being in the room when we first got there and the neurologist came up to Anthony and started clapping in his face.  Thinking it was a startle reflex.

I wanted to hurt him.

A few hours later he came back to the room with news....
"The spasms are back" he said.

"No shit, Sherlock" is what I wanted to say.  I knew they were back.  So I just said.  "Annnnnd......"

"It's a relapse" he said.

I was crushed.  Anthony would have to go back on ACTH.  I would have to inject my baby again and he would go back to being uncomfortable and unhappy :(

That hospital stay was a good week.  He needed another MRI (Which came back normal) and again had to cancel our trip to Florida.  We were supposed to leave on February 21, so that wasn't going to happen.

When I got home I wanted to live under my covers.  It was tough.  I got up in the morning because I HAD to.
I had to carry on.  I had two little boys who needed me, and in turn, I really needed them.  Originally, I didn't want to see any friends and limited family members.  I needed time.  I still need time...

And then he started the regression.  Putting him on his tummy was heart breaking.  If I got one smile a day, it was a good day.  Overall, his spasms were not as intense as they were in November and they

decreased overtime.

On March 4th we got the news that his EEG looked better!  The hypps was gone-yay!  It only took two weeks this time.  We also got news that he has an extremely rare epilepsy gene mutation which could be the cause of the infantile spasms (more on that another time...)  When we went to CHOP on March 11,  the neurologist looked at me and said

"You know more about this (gene mutation) than I do....


And then I got that helpless feeling again....

Hello Anthony! Hello 2016!

It was long a journey on ACTH.  It took four weeks before we could notice improvements with Anthony's spasms.  It was literally one day they were here, and the next they were gone.  His last spasm was December 7th.

It's weird though because right after the spasms stopped we started noticing more of the ACTH side effects.  We started to wean the drug, but he still had a month of injections before it was fully out of his system.  During the wean he got VERY irritable.  Many, many sleepless nights.  I remember seeing every single hour for a few nights in a row.  He only wanted to sleep in bed with us and wanted to eat all night long.  He also got the "moon face" side effect.  He was very bloated and our Christmas pictures unfortunaley do not look like him at all.

His EEGS looked better and the hypsarrhythmia was gone.  Hyps is the chaos in the brain waves that diagnose an infant with infantile spams.  However, Anthony's EEG was still abnormal.  It still showed flickers in temporal lobes which indicate there could be seizures in his future, but right now they are controlled.

On December 31st 2015 life was good.  Our baby was babbling again!  He was putting his hands together and sucking them!  Tracking, smiling and moving his legs! This was huge!  We were so excited that we went to our friends' house to celebrate the new year.












2016 was already looking brighter!  Welcome back, Anthony!

It's a Marathon....

"It's a Marathon.....not a sprint." 

 It is so easy to get focused on the future.  For me, that has always been something that consumed me.  Always looking ahead.  I am a worrier, I am a positive thinker, but sometimes when it comes to myself and my family the worry and need for someone to tell me what's in that "crystal ball" overcomes me.  Our little family has been through so much in the past six months and it has been a true challenge for me to be mindful, live in the present, and take one day at a time.  

Maybe that is why God gave me Anthony.  To give me the opportunity to truly live IN the moment, enjoy each day to the fullest and stop focusing on what the future may hold.  

This journey started in late October.  I had noticed some different behaviors coming from Anthony (3 months old.) He was flinching, pulling his arms up and his eyes looked to the side--kind of looked like a reflex.  I asked Brad, my mom and even my brother, but they all seemed to think it looked normal.  As the week went on this would occasionally happen some more-I asked my friend who is a baby nurse and she again reassured me.  But in my gut, I just knew it wasn't right.

The next day (Saturday) Anthony was making these movements one right after another-more in a pattern.  So we called the doctor and had an appointment set for Monday.  On Sunday we decided to call the on call doctor.  Explained to him what we were noticing and he sent us to Strong Peds ER.  Ten minutes away from the hospital in the car was Anthony's first "episode"  He awoke from his nap in the car and his eye were bugging out of his body.  We spent most of the day in the ER insisting on an EEG for our son.  Finally, we were admitted for the night at the Golisano Children's Hospital and EEG scheduled for the morning.  

On Monday November 9th Anthony was monitored on EEG, 27 probes on his little head, he was smiling through it all.  He had some episodes while being monitored. 

 At around 4pm, a team of neurologist entered our room.  They told us that what we had suspected (infantile spasms) was what is happening to Anthony.  Infantile spasms are little seizures that babies between the ages of 4-8 months can experience.   Sometimes they are seizures the babies grow out of, sometimes they are a result of lesions in the brain, mutations or other complications going on.  They assured us that this is something that he was born with and predisposed too, assured us it isn't anything we did or didn't do. 

We were happy to know that there was a name associated with what we were observing but with this news came more questions.  I asked the doctors if he would have a good quality of life.  They told me they couldn't answer that. Obviously, I crumbled.  Nothing else they said to me mattered.  I remember hearing the words autism spectrum, epilepsy, moderate to severe learning disabilities etc.

Anthony needed an MRI to rule out brain tumors, folds in the brain, any abnormalities that were causing the spasms from that end.  

So Tuesday morning we would trade our tickets to Florida (yes, did I mention we were planning to surprise my brother in Florida on Tuesday?) for an MRI scan.  Sending my baby off to be put on anesthesia was another weakening moment, but an hour and half later he was in my arms and finally able to nurse again.  Shortly after that the same team of neurologist enters our room with SMILES on their faces--MRI looks completely NORMAL and HEALTHY!! PRAISE GOD!!!!  We celebrated!!  

At that point I hung on to the hope that Anthony would be in the 25% of children who walk away from an infantile spams diagnosis with NO long term effects.  Hoping it would be idiopathic and no reason for why it happened.  We were communicating with two families in the area who went through this and their children are perfectly healthy now. Why wouldn't that happen for us?

 We were hopeful that with the ACTH Hormone we learn to inject would cease the spasms and he will continue to live a normal life.  

That's what I pictured in my crystal ball anyway.  

After our stay at the hospital we talked with the neurologists one last time before heading home to navigate this curve in the road on our own.  As I jumped ahead in conversation to the "what ifs" the doctors reminded me....

This is not a sprint... it is a marathon.  

So here we are with our sneakers laced up.  Ready(or not) for the difficult hills and steep slopes this course will give us.  With a huge cheering squad at our backs,  we will keep our eyes on the prize....

On your Mark, Get Set, GO!!!