731 days...

731 days ago, Charlie Claire was given a new birthday, that was the last day she had a cluster of spasms!!

At the time I didn't think I was physically going to be able to get myself out of the hotel, to the hospital and pass Charlie Claire off to her medical team.  Had I known then what I know now, I don't think it would have made the handing over part any easier but it would have eased my mind to know that we were giving our sweet girl a new life.  What Charlie Claire has been able to accomplish since the seizure monster has been put in his place is nothing short of a miracle.  

731 days ago our life was so far from "normal" that we didn't even recognize "normal" when we were living it this past year! We had play dates with friends, went out of town to visit family, we went to the park and the beach, I went back to work, Jackson and Charlie Claire started school, etc.  Sure, we still have therapists at our house, Charlie has blood draws to check medication levels and we still go every 3-4 months to see C's neurologist but that is always going to be a part of our "normal" and we are good with that.  

We did a video again this year and the goal was to keep it short...we failed! So you may want to get comfy for this one.  

We really feel it is so important to include all the people who are a part of Charlie Claire's life as well as to show that this past year we have lived life! We dealt with epilepsy things but that has most definitely taken a back seat these days and we pray that this past year sets the tone for the rest of our life.  

We are forever grateful for what surgery has meant for Charlie Claire and we are beyond blessed with a sweet, sassy, caring, fun-loving, spitfire of a little girl and couldn't be more proud of her!!! 

Thank you to everyone who has continued on this journey with us, we are so touched by the love and support you have shown Charlie and our family...thank you! 

To watch the video in full screen click the icon in the bottom right hand corner of the video box. 

purple day!

An estimated 3 million Americans live with epilepsy.  Epilepsy affects more people than multiple sclerosis, cerebral palsy, muscular dystrophy, and Parkinson's combined yet receives fewer federal dollars per patient than each of these.  For more facts on epilepsy you can click here. 

Purple is the color for Epilepsy Awareness Day and Tuesday is the day we get to educate others about epilepsy.  

While things have significantly changed in our lives since Charlie Claire was first diagnosed with epilepsy and infantile spasms it is still something that will be a part of our family for years to come and we are still as passionate as ever about educating others about seizures.

Please join us Tuesday and rock your purple! 

little road trip...

We took a little trip to the neurosurgeon this past week.  

A little over a week ago I was rubbing Charlie Claire's head and felt a, for lack of a better word, indentation on her forehead, up by her hair line.  You can't see it, just feel it.  I called the nurse at the pediatricians office and she talked to C's ped and she felt that since it wasn't painful, discolored, soft, etc. that it was probably nothing urgent but deferred to neurosurgery.  I then called Joann, Dr. T's nurse and she essentially gave me the same response just adding that it probably had to do with how C's skull healed from being cut open 3 different times. She said that as long as it wasn't hurting C, squishy, discolored, etc. then they could just check it out next time we went up to see Dr. M.  I hung up the phone feeling fine with that game plan.  Then I tried to sleep that night.  I couldn't.  I know it may sound silly but I just needed her surgeon to look at it and tell me that everything was fine. 

So we found ourselves driving to Richmond this past Wednesday.  3 hours in the car for a 15 min appointment.  Charlie's head is fine.  Dr. T said that it just the way her skull fused after surgery.  Structurally everything is solid and in place.  He said that it should smooth out over time.  

Now mama bear can sleep! 

eye doctor

Jackson and Charlie Claire had annual eye exams on Monday.  All is well with Jackson so we won't need to go back unless needed.  Everything with C's eyes are looking good as well! The results from her eye surgery are great and she only has some intermittent drifting which she corrects own her own pretty quickly.  

We have a few questions that her current eye dr doesn't seem to be answering very well for us so we are taking her to another eye dr in Richmond in a couple weeks in hopes of getting some better answers.  

Jackson was super pumped to be sitting in that chair!

Silly girl rocking her cool sunglasses from the eye dr!

TGIF!

Happy St. Patty's Day Weekend! 

reflection...

With C's two year surgery anniversary coming up soon I have been reflecting A LOT on what our life was like 2 years ago.  Things are so drastically different now that sometimes I forget just how difficult it was to go through.  Here is a post I wrote 2 years ago at this time...my how things have changed and we couldn't be more grateful! 

Oh, and TGIF! 

They could sit any where but chose to sit next to each other! :)

A visit with some friends! 

After bath snuggles and giggles! 

A little vacuuming before school! 

Sweet, sleeping boy! 

Taking Nonno for a stroll! 

Last but not least...some OT with Ms. April! 

Help for a local family!

While I do not know this family personally, I can more than relate to what they are trying to do for their 20 month old daughter.  

Layla is in need of a seizure alert dog and her parents need to raise $13,000. Please read their story here. 

It is my hope that by sharing their story they will be able to get a little closer to their goal of getting a dog for their sweet baby girl! 

You can also read more about Layla here. 

week in pictures!

Can you believe it's March already?! We've had some fun this week closing out February...

Doesn't Charlie looked thrilled to be getting affection from Jackson?

Hugs for Jeter too! 

And snuggles for Nonno! 

Silly girl! 

  

Pizza lesson from Daddy! 

Monster was super serious about putting the cheese on! 

Coloring! 

What? Isn't this how you wear your pants?!

Is anyone else super excited that the sun is setting later and spring is on the horizon?!!