"You cannot appreciate the light unless you have lived through the darkness."

One year ago today Jason and I handed over our sweet (almost) 6 month old baby girl to a neurosurgeon and a team of neurologists in hopes of putting an end to the catastrophic infantile spasms she was having. There is nothing that will ever be able describe how vulnerable we both felt at that moment...knowing that Charlie Claire had to have surgery but not knowing what the outcome of the surgery would be. We literally were putting all of our eggs in one basket because we had already pursued all of the other options available.

We were surrounded by our family and anxiously awaited the pages that would update us on the status of the surgery but it was agonizing since the nurse could not provide us with any details other than "Charlie is stable." When we got the page letting us know that they were closing C up and we could meet Dr. Tye (surgeon) at the PICU we ran, we could not get up there fast enough.

Having Dr. Tye greet us with the smile on his face and a thumbs up was the most relieving moment of our lives...our girl made it through one heck of a surgery. However, we weren't out of the woods yet...we had to wait to see if the surgery successfully stopped Charlie Claire's infantile spasms.

The morning of March 30, 2011 was the last time we saw Charlie Claire have a cluster of spasms.

There will never be a day that goes by that we don't acknowledge and appreciate the new lease on life that this surgery brought to Charlie Claire and our family. We are blessed.

In this last year since Charlie Claire had her life changing surgery we have experienced life in a way we never would have had C not had infantile spasms and brain surgery. We have worked hard on teaching Charlie so many things - from super basic to challenging, we have rejoiced in the tiniest of triumphs, we have learned to appreciate life on a whole different level and to not take things for granted. We learned that Charlie Claire is fighter and she has more determination and perseverance than anyone else we have ever met.

We have had the most unbelievable support system. Thank you to our families...grandparents, aunts, uncles, cousins. Thank you Jackson. Thank you friends. Thank you to C's neuro team at VCU. Thank you to everyone who prayed and is continuing to pray for Charlie Claire. Thank you to C's team...Wendy, Nina, Stephanie and April. These ladies come to our house week after week and have spent countless hours with our family and love Charlie Claire like she is their own. These ladies have become such a huge part of our lives.


Last year before Charlie Claire's surgery, my sweet friend Julie said to me "we must have faith the reward will be great" and those were the words in my head the entire time Charlie Claire was in surgery. The reward has been great. While our hard work is far from over we have a completely different mindset heading into this next year...      

      

Look how far our girl has come...ENJOY this video of C's last year! :) You can view it in full screen by clicking the button on the bottom right hand side of the video box.

     

...And though she be but little, she is FIERCE..!

And on this day before Charlie Claire's one year surgery anniversary we are thankful for this sweet little girl and all the things she has taught our family....

Sweet, sweet babies!

I won't lie...I am not a fan of waking up early but watching these two love on each other makes it totally WORTH IT!!!! <3

Just in case you were unaware, it's not easy being a MONSTER! :) Homeboy plays HARD and sleeps HARD! 

The cellmates were caught red handed playing in the dogs water bowl....



Richmond Road Trip!

We headed to Richmond today for Charlie Claire's appointment with Dr. M.  Since we knew today's visit would be short we brought Monster Mash along!

The appointment went really well and it was nice to see Dr. M and his nurses.  We also stopped by and saw Dr. T's nurse, Joann.  The staff there has been amazing. Dr. M thinks that C looks great and that she is awesome.  They did blood work so we can get a level on her zonegran and they wanted to check her electrolytes since her dose was increased rather quickly. We are also tapering the lamictal! It is so nice getting Charlie Claire off of things that she doesn't need to be on. We are still currently seeing about 3 seizures a day, usually one each time she wakes up...now that she is so mobile it is pretty difficult to watch her as closely as we have in the past and since her seizures are so subtle it's possible she is having more but if she is we are not seeing them.  Dr. M is not concerned at all with the seizures she is having which we are grateful to hear! It looks like an EEG will be scheduled once C is off the klonopin.

Is there anything cuter than sleeping littles?!





Epilepsy Awareness Day!

Today is the day to rock your purple....in honor and support of Charlie Claire and every one else who is living with epilepsy! :)

Our week...

On our run the other day, we lost a Monster! :)

Charlie Cakes is all outfitted up to play some tennis! Game, set, match! 

We LOVE, LOVE, LOVE this sweet, sweet face!



Working on walking while only holding onto one hand with Wendy! 

A boy and his dog! :) 

Charlie Claire accompanied me to my pedicure appointment the other day and took it upon herself to get a "mini" pedi herself! By the time we left we had to take her clothes off because she was drenched in water! 

We discovered Friday that there has been an issue with C's zonegran.  The pharmacy we get it from has been making the compound differently then the way Dr. M wrote the script.  A couple weeks ago when Dr. M increased Charlie's dose he increased it based on what he had written the script at.  It wasn't until Friday that we discovered the pharmacy was doing this.  None of us, not me and Jason or VCU knew that the pharmacy had done this so when we increased Charlie Claire's dose instead of doubling it from 25mg to 50mg we went from 25mg to 100mg.  YIKES! We panicked a bit about this but Dr.  M's nurse was awesome about handling the situation.  Thankfully the dose isn't harmful to C and she probably would have eventually gotten to this dose, Dr. M just had no intention of her getting there that quickly.  Thank goodness Charlie has not had any adverse reactions to this mistake aside from being super thirsty since the medicine acts like a diuretic.    Needless to say, it was quite an interesting afternoon dealing with this.  Everyone is now on the same page.

Charlie Claire has an appointment with Dr. M on Monday - 3 months post op visit. We are really looking forward to meeting with her team! We will keep you posted!

On another note...on Friday (3.30) it will be C's ONE YEAR surgery anniversary.  It has been interesting to reflect on where we were as a family last year at this time.  More to come on that later!!



Happy Monday!

One of the best things ever these days is how much Jackson and Charlie LOVE each other! They seriously laugh at each other ALL THE TIME! It's too cute for words and during the moments of the day that all I can think about is bed time I often remind myself of how cute these two little souls can be!!!

Charlie Claire has gotten MUCH more interested in walking the past couple of days! This literally just happened...a few days ago she was not doing this...

Please take note of the Monster trying to make a break for it at the end...you can see his little feet in the corner!



MOUNT TRASHMORE

We got to enjoy a fun morning at Mt. Trashmore yesterday with a couple friends and their little ones! While it was far from relaxing it was enjoyable in a "chase your kids around and make sure they aren't eating too much mulch" kind of way! We are looking forward to many more of these days! 

Lucky # 13!

Thanks to my husband, littles, family and friends for a wonderful birthday!

Mozart Cake...Seriously, BEST. CAKE. EVER.



Charlie Claire doesn't like sweets. I can't wrap my hands around this because I LOVE SWEETS.  So, rather than just accept that she would prefer salty foods I keep trying different sweets (of course within reason and barely once a week!!) until we find one she likes.  I thought for sure she would love the mozart cake...and not the chocolate and icing...just the custard on the inside.  Clearly you can see how well this went...

hello, dimple!

Jackson on the other hand....

Had no problem with helping Mama eat some cake!!! That's my boy! :)

And some other fun photos for you on this warm and sunny Wednesday!

Now we've got 2 littles who like the dishwasher!  

This is what my husband and father do to my son...best part...Jackson liked it! 



Loving the beautiful weather!

Charlie Claire LOVES giving kisses! 

We are in the process of dropping the littles morning nap so we had a fun morning at the park! 

Hope you are enjoying your day!

17 Months

We can not even being to wrap our arms around the fact that Jackson and Charlie Claire are 17 months old, how is that even possible? In many ways it feels like just yesterday we had them and in others it seems as if Oct 10, 2010 was a lifetime ago....

It is so incredible to observe Jackson and Charlie Claire on a regular basis to see the smallest things that they are learning and doing.  They are both very similar in many ways but extremely different in others.

Since we feel that there is already so much about J and C that we are forgetting we are going to dedicate this post to what they are up to these days. 

J:
- you are OBSESSED with Jeter and Ripken.  Could play with them all day, every day. 
- you like to help Grandma give Wrigley, Jeter and Ripken their morning treats.  Even if you are still in your booster seat eating breakfast you have to get out to go help.
- you love to help vacuum and swiffer the floors
- you come down the stairs so quickly on your tummy that it sounds like you are falling...but you are not!
- you like to watch Mickey Mouse so much that we have to limit how many episodes you can watch a day
- you love to give Charlie kisses and hugs but also like to push her over (which she does not like)
- you LOVE to be outside. It doesn't matter what time of the day or what the weather is outside, you just want to be out there!
- you typically have about 4 lovies in your bed with you and if you see something that looks remotely like a cloth diaper you make a beeline for it!
- you are a wild little man but are also very sweet...you love to give kisses and snuggle.  You like when someone rubs your cheek and tickles under your neck.
- you are fearless and like to rough house with daddy
- you are a machine when it comes to eating, there is no off switch

C:
- you are strong willed sister.  If you don't want to do something good luck getting you to and on the flip side if you want to do something, watch out because it's getting done!
- you think Jackson is super funny and pretty much laugh at everything he does
- you like to spontaneously lay flat on your back and kick your legs in the air...something we like to call "happy legs" you especially like to do this on a bed.
- bathtime is party time for you
- you LOVE books
- you do not like when Jackson takes something from you and you have no problem letting him know this
- you are currently on a mission to play in the dogs water dish any chance you can
- now that you know how to crawl you do not like to sit still, you are all over the place!
- you are a daddy's girl
- you are started to experiment more with different foods but still are not a fan of sweets (I am not sure how you are my child!)
- you love to go to the park and go on the swings
- you love, love, love to snuggle

We are super blessed to be your parents and love you both so, so much! Thank you for bringing so much joy to our lives!!!

Monster LOVES giving Jeter his tennis balls!

Daddy and Charlie Claire watching Jackson play fetch with the dogs!

Bath time play time

Love this sweet face

Nice wet hugs for daddy!!! Love this boy!

March Madness!

Let's first start with a neuro update, shall we?!

Charlie Claire's zonegran level is at a 15.9 and she can go up to a 40.  We are still seeing about 5-10 seizures a day so we are going to increase her zonegran and check back in with Dr. M in 2 weeks. Thankfully, C is still not affected at all by these seizures and continuing to develop beautifully! In other exciting neuro news we have finally started the klonopin TAPER!!!! C has been on klonopin since January 2011.  The taper process for this is extremely slow since Charlie Claire's body has basically become dependent on it.  If you decrease it to quickly she can have withdrawal seizures. We are dropping her from 2mLs a day to 1.5mLs and won't do another drop for about a month.

This morning both littles had eye exams.  Doesn't that just sound fun?!!! I am beyond lucky to have a ROCKSTAR aunt who tackled this appointment with me! We knew the appointment would be long so we were prepared with snacks and lunch.  The office was HOT as all get out so that wasn't helpful but for the most part Jackson and Charlie were really good.  Neither one of them liked the drops to dilate their eyes but I pretty much agree with that! Jackson's eye are healthy, he is slightly nearsighted but nothing that causes concern.  Charlie Claire's astigmatism has improved so much that she doesn't need glasses anymore.  Great news since she isn't wearing them anyway! :) She does however, still need to patch because of her right eye that drifts.  If we can't strengthen the muscle with the patch and with exercises from her OT then she may need to have surgery.  Of course we want to keep this sweet girl out of the OR so we will be working on this. Both littles were pretty tired towards the end of the appointment and Jackson was on the verge of an epic meltdown.  I need to buy Aunt T a drink after joining me for this appointment! :)

Eye Dr playroom fun...



 Exhausted Monster...

We couldn't be more ready for some serious March Madness!! This is easily one of our favorite times of the year...Selection Sunday should be a holiday! :) This weekend we are looking forward to an 8 mile run tomorrow, the time change (hello spring time!) and the Selection Show on Sunday! TGIF - hope you enjoy your weekend!

Thursday!

Sweet Charlie Cakes and Ripken have become BFF the past few days! Jackson has always been SUPER fond of the dogs so it's nice to see C coming around! :) 

JMonster has a double ear infection. Boo.  Thankfully though he is still in pretty good spirits so we were able to spend a lot of time outside today!

Tomorrow should be interesting...both littles have appointments at the eye dr.  Stay tuned! 

3 Months Post Op!

perfection...

I was a lucky, lucky lady this weekend.  My brother and Jen did nothing short of spoil me!


Friday night was a tad rough for me...I felt like I had left my heart in Virginia Beach...so I was glad that even though it was almost my bed time we headed out for a late dinner and drinks! Jason and Jen had both made it a point to tell me to save room for dessert and of course I gladly obliged.  However, once the dessert arrived I wished I had skipped dinner and headed straight for this dessert sampler...

YES! That is COTTON CANDY!!!!

Saturday was supposed to be a relaxing day and since I needed to get a run in we headed over to Jason and Jen's gym.  Now, I don't know how to say this without sounding like "one of those girls" but their gym is better than yours! :) I was pretty sold when I first walked in and it looked like you were walking into a hotel...there was a restaurant in the lobby and everything! So it wasn't going to take much more to make me think that everyone and their brother should be a member at this place! It didn't stop there though...the place was immaculate and the best part, after we got off the treadmill there was a stack of cool, citrus-y scented towels just waiting for you! Do you know how lovely it is to put a cool towel on your face and back of your neck when you just gotten done with a run?!  After our run and Jen kicking my butt on the step mill we relaxed in the sauna and showered up at the gym.  The rest of the weekend consisted of lots of food, wine, sleeping, visiting family, etc. Another highlight of my weekend was getting to spend lots of snuggle time with my nephew...have you ever seen a cuter dog?

Jason and Jen seriously went above and beyond this weekend and I can not thank them enough! You both are the BEST!!! Thank you again!

Jackson and Charlie Claire had tons of fun with Daddy, Grandma, Nonno, Mimi and Papa Jim Jim.  I am so glad I was able to go away and relax knowing that the littles were well taken care of. I did miss their sweet faces like crazy...

Jackson is totally a mini Uncle Jason Cortellini in this picture! Is it possible for this little boy to be any cuter?!!

Putting Jackson to work! Monster LOVES to swiffer!

Love bugs playing!

She's not full of herself or anything!! :)

After the blood draw on Friday morning

We heart this little face!