have yourself a merry little christmas...

A few days late but Merry Christmas! :) Hope every one had a special day with their families and friends! 

We had an amazing and hectic few days! It was super fun having my brother, sister in law and grandmother here.  Jackson and Charlie Claire, despite both having double ear infections, had a blast! They both were apparently very good this year! 

Wishing everyone a happy and healthy 2013! 

Eye Dr & Holiday Spirit!

We had Charlie Claire's 2 month post op appointment today.  The eye dr said she has very minimal drifting when she is looking at objects far away and when she is looking at things super close to her face her eyes cross inward but he said that isn't a cause for concern.  I told him that we do notice her right eye drifting out when she is sleepy but he said that is extremely common and again not a cause for concern.  C has to go back in March for a big exam...they will dilate her pupils and all that jazz.

Moving onto to holiday spirit! Last year at this time I was in a completely different place mentally.  Charlie Claire had just had her third surgery and she was still having seizures so to say I was spiraling downward into a black hole would be an understatement.  But this year...this year is so, so different.


Yes, Charlie Claire is still having seizures but this year has proven that Charlie Claire has seizures, seizures do not have Charlie Claire.  Our little girl has taught me how to live life and this year I have been able to fully embraced Jackson and Charlie Claire's amazement with all things "Christmas!" They love Santa (seeing him, not sitting on his lap!), they love the lights, the Christmas trees, music, the holiday treats, etc.  Our house is abuzz with holiday plans...Uncle Jason, Aunt Jen and Nonnie are heading our way for Christmas and we couldn't be more excited to spend this time with them!

We would love to hear...what are you looking forward to most about Christmas?!!

Wednesday photo dump...!!!!!

Reason #151 why I LOVE our nanny, Kristen, she teaches Jackson and Charlie Claire so, so much! 

Speech Therapy

Charlie Claire had her annual assessment with the infant program almost 2 weeks ago.  I haven't said much about it because there were a couple things that kind of tweaked me about it.  Overall, C's progress has been beyond stellar...she had reached all of her long term goals and we actually dropped her developmental educator completely and dropped her OT to every other week.  We are however, adding Speech Therapy to the mix once a week.  

Today Allison the Speech Language Pathologist came out for Charlie Claire's first session.  I have heard such wonderful things about Allison so we are really looking forward to working with her.  She said that Charlie Claire is doing really well communicating to us with one syllable words and now we really need to start working on two syllable words because that will lead to her putting two words together.  It's amazing how quickly Charlie can tell that someone is trying to make her "work"...as soon as Allison would ask her to do something that was "difficult" Charlie would just turn her head and act like Allison wasn't even there!! Bless this sassy girl! Allison gave us some things to work on this week and we will be seeing her again next week! 

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Couple things going on in our house these days...

We are big on sunglasses! 

And, it's beginning to look a lot like Christmas! 

Jackson and Charlie Claire have their very own tree this year! :) 

Another Anniversary!

Our sweet girl has another year post op under her belt! Last December 7, Charlie Claire underwent her 3rd brain surgery to remove the last little piece of her occipital lobe.  

Charlie Claire, thank you for teaching us about life, determination and perseverance.  It is unbelievable how far this silly little firecracker has come in the past year and we couldn't be more proud of her and all her accomplishments.  

We love you sweet girl! 

zonegran

A couple of weeks ago Charlie Claire had a couple out of the ordinary seizures.  

The same kind of seizures she always has but normally she only has them when she wakes up from sleeping and the two we saw were not at that time.  It's not uncommon when C is coming down with something for her to have one of these random seizures and then get sick within 24 hours.  We talked to the neuros office and they wanted to run labs to check CBCs, platelets, medication level, etc.  It has been a little while since Charlie Claire has had a lab draw but she actually handled it really well.  

Jackson got to enjoy some yummy ice cream with Ms. Kristen while C and I went to CHKD. 

We got the labs back for all the blood work, except C's zonegran level, the day before Thanksgiving and all looked good.  Finally on Monday the zonegran level got sent to VCU and it's low.  Normal level is between 10-40 with the neuro wanting to see the level between 20-30, Charlie Claire's level is 5.  Naturally we thought that VCU would be increasing C's dose of zonegran however, since we haven't noticed any other seizures aside from the ones that sent us for the blood work to begin with Dr. M isn't rushing to increase the meds.  Since C seems to be doing extremely well on such a low dose Dr. M doesn't want to increase her meds unless it is completely necessary to do so.  

While we are all on the same page with keeping Charlie on the least amount of meds possible it is slightly unsettling to me to take the "wait and see" approach.  However, C's whole life has sort of taken the "wait and see" approach so I should be used to it by now! :) 

thanksgiving week!

How fun is it to spend Thanksgiving week in NY at Aunt Jen and Uncle Jason's?! 

Road trips are exhausting! 

Getting right to work at Uncle Jason's office

Cakes and her favorite uncle

:) 

Aunt Jen lovin'

Happy Thanksgiving! 

Herc getting in the holiday spirit! 

who doesn't need a life size minnie mouse?!

endless amounts of food....this boy was overwhelmed with all the goodness! 

Nonno and his favorite little man! 

yep, that's Jackson in a sink! 

morning snuggles

hercules, come out and play please! 

I am not sure who loved who more! 

CBear and Nonnie! 

There is dessert too?! 

Hope everyone had a wonderful Thanksgiving! 

happy thanksgiving

wishing you and your family a very happy thanksgiving!



we are currently in new york playing at aunt jen and uncle jason's...more to come on that later! :)

Monday Photo Dump!

Happy Veteran's Day! Thank you to all who have served and those who are currently serving our country.  We appreciate all you do!!

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Jackson and Charlie Claire had their first parent/teacher conference last week, it was precious! The teacher said that Charlie Claire's confidence has soared since their first day.  She no longer follows the teacher or Jackson around but now goes off on her own and plays with other kids.  Charlie Claire has started saying so many new words and animal sounds since starting school and really enjoys playing with the kitchen! Jackson is having a slightly tougher time than his sister adjusting...he cries a bit still throughout the day but he really enjoys snack time (shocking!) and playing with the other kids in their class.  Here are their ADORABLE school pics (don't they look like a deer in headlights?!) 

We took advantage of the beautiful weather today and spent the morning at the zoo! Jackson loved the monkeys and the elephants, C enjoyed being carried around on daddy's shoulders! She was nice enough to let Jax have a turn... :) 

Sea otters! 

And two more just because they are cute!!! 

Little reminder...it's still epilepsy awareness month...wear your purple, talk about it! 

Talk About It!

I can not believe with all of the epilepsy research I do that I have not come across this organization sooner! 

The 'Talk About It' Foundation helps give a voice to misunderstood, under-represented causes like epilepsy. The foundation was created by actor/philanthropist Greg Grunberg, whose son lives with epilepsy.  

I am so grateful to come across an organization that is empowering people and families with epilepsy and encouraging others to learn more about seizures. 

Please join us in sharing the info on this organization and talking about epilepsy! 

Girl On Fire

There are some songs that I come across that seem as if they were written for me or someone close to me...doesn't that ever happen to you?!! :)

I recently heard this Alicia Keys song on a commercial and downloaded it.  Pretty sure Alicia wrote this song with our girl in mind!!!

Check it out! 

NOVEMBER is...

We have been aware of epilepsy for 2 years.  Our world is significantly different now then when we were first abruptly introduced to epilepsy and we are forever grateful for that.  However, Charlie Claire has epilepsy.  Every day Charlie Claire has at least one seizure. And while these seizures seem to have zero impact on her it is still a seizure.  Which means we are still aware of epilepsy on a regular basis.  We also remain aware because of the many people we have met and become friends with during this journey whose sweet children are also affected by seizures. And we will continue to be aware until we can find a cure.  

Please join us in supporting Epilepsy Awareness Month. 

H.A.P.P.Y. H.A.L.L.O.W.E.E.N!!!

It's amazing the difference a year makes.  Last Halloween we were on the phone back and forth with the neuros office setting up for  Charlie Claire to be admitted to the Epilepsy Monitoring Unit on Nov 2 and this year we were just able to enjoy the day! :) 

Hope everyone had a very Happy Halloween! Loved seeing all the pics of the little ones dressed up that everyone posted on facebook! 

Our new home!!!! 

Sandy threatened our plans to move into our new house this weekend but thanks to our amazing family and some awesome friends we were still able to get it done! :)We are officially in our new house and working on getting settled.  

We are beyond grateful to my parents for allowing us to overtake their house this past year.  It is bittersweet leaving.  It seems apparent that it will take J and C some time to adjust...this morning C asked for Nonno and Grandma at least 50 times. :) 

Hope that everyone made it through the storm safe and sound. 

Helping Grandma make pancakes! 

Fun with Aunt T during the move! 

Supervising the movers! :)

constant togetherness

Don't let this fool you...we still have EPIC battles in our house over cups, toys, who is sitting on my lap, etc! :)