TEAM CHARLIE CLAIRE

3,153,600 minutes

2017-03-29T19:53:00.000-04:00

war·ri·or: a brave or experienced fighter

This is a day that will never lose it's meaning on us and it is something that we always plan on celebrating. But something is different this year. This year just feels big. The amount that C has grown in the last year and the amount that she has accomplished is just different. It's hard to explain but you can just see things "clicking." To see her being such a smart, spunky, spirited, playful, loving little person brings such joy to us.

We've had countless people ask us how we made the decision about Charlie's surgery. Oddly, it was never a decision we made...we just knew it was going to happen. Not having surgery was not an option. When the information was presented to us we knew that this was Charlie's only chance at having a "normal" life. We never had a conversation or weighed pros and cons we just knew. We can not imagine where our life would be had Charlie not had the surgery and that is why we celebrate this anniversary. This day six years ago gave our little girl life. A life she would not have had without the surgery.

Daily we work on things that are a direct result of Charlie's brain surgery but the surgery itself is not something we think of daily. The same is true for seizures. As Charlie (and Jackson!) have gotten older she has become more curious about her seizures and her surgery. We mainly only talk about it when we are answering questions. We used to have so many conversations about what we would tell Charlie or how we would do it and it just sort of happened. We never took into account that her and Jackson would just start asking questions one day and we would just answer them!

We will never stop being amazed at Charlie's hard work, dedication and persistence. We have been met with new challenges this year as she has entered Kindergarten and we are no longer in the safe haven of her cozy preschool. We are also amazingly blessed with a team of people who work so well with Charlie! Often times we see her therapists more than we see our friends on a weekly basis! There is a strange comfort in that...knowing that there are people who know your baby so well and have her best interest at heart. Who want to see her succeed as much as we do!

So today we celebrate! Naturally C had an opinion on the video this year! :) She picked the songs out and unlike past years videos there is no rhyme or reason to the order of these pictures...they are just full of life, love, laughter and hard work!

(you can enlarge by clicking on the video and clicking on the little box in the bottom right hard corner)

Wow...February!!

2017-02-16T20:21:00.000-05:00

Happy 2017!!

We signed the kids up to do a little mini photo session a few weeks ago benefiting CHKD! It seriously was an amazing way to spend 20 min on a Sunday morning!

I know we haven't posted since the last hospital stay...no news is good news right?! Quick little update on that...what we thought were seizures are actually not seizures. We added in a new medicine however to see if the little episodes would respond. They did not. We have since stopped the new med. We still see a couple a day and we are just monitoring at this point. Charlie actually had a check up with Dr. M Monday and it was quite uneventful, which to be honest is a nice feeling.

I also wanted to take a moment to talk about daily life. Through a friend of mine I was put in contact with a family whose little girl had brain resection surgery a couple weeks ago. It brought me back to the early days with Charlie and all the uncertainty that surrounded us at that time. At that time I searched and searched for older kids who had been through a similar surgery who were doing well. Those stories were few and far between and it was quite discouraging. It is super easy to get wrapped up in our day to day life and not give any updates since there isn't much medically to report. However, there is a lot of progress to report and if we held out on that we wouldn't be very helpful to any other parents out there who need a little bit of hope!

On almost all fronts Charlie is developmentally age appropriate which is amazing but we don't always show the work that is behind all of it. I can't lie to you...we do A LOT OF WORK. She is currently doing occupational therapy twice a week, vision therapy every other week, speech therapy once a week and swim team twice a week (not for therapy, her choice!). There are days that I am not sure how we fit in all the therapy, school, therapy homework, school homework, swim and then just time for C to be a kid! She is seriously the HARDEST working 6 year old I have ever come across, I am not sure I could ever fully describe her determination and perseverance. She rarely ever complains and there are even days when she asks me if we can do therapy homework!! It is exhausting yet also extremely rewarding to be a part of this journey with her.

And today the kids celebrated their 100th day of school!

I can't make any promises but I will certainly try to keep this little page more up to date!

November & Ariel...

2016-11-10T20:02:00.000-05:00

"A fallen leaf is nothing more than summer's wave goodbye..." We sure do have a hard time letting go of summer around here. Summer is just in our blood! But, it's probably time for us to let go of summer and move into fall!

The kids started Kindergarten in September and had a much easier time adjusting then I did! I was very worried about them being in separate classes but the two of them didn't skip a beat! It has been fun listening to J and C chat with each other about their day when they get home. They have been learning so much and really enjoy going!

Jackson started fall baseball in September! My dad is his coach which has been super neat! Charlie Claire has been a busy bee with vision therapy and occupational therapy (twice a week) and being on a swim team. Our days seem to revolve around "homework" from therapy and shuffling people around from one activity to the next.

C has been having some new seizure activity going on. C likes to call them "ariel" instead of a seizure. They appear to be relatively minor and are very quick. She had a really good check up with the neuro in September where we discussed these little "episodes." We added back in a second medication to see if that would help. So far we have not seen an improvement. C had blood work done about 2 weeks ago to check her med level and all was in a therapeutic range. At this point Dr. M would like to take a closer look at what is going on. C is scheduled to go in the Epilepsy Monitoring Unit on Tuesday for a 2-3 day EEG. She is having a decent amount of these episodes daily so our hope is that they can collect the data they need in 24 hours instead of needing to stay in for 3 days.

Jones is getting super big and he is very busy! How is it possible that he will be a year old next month?!!! He LOVES the big kids, getting into everything, playing outside, eating and remote controls!

Here is a major photo dump from the last few months!

Visit with Dr. T

First day of school

Blood draws and swim meets!

sweet summer time

2016-08-02T19:40:00.003-04:00

It has again been about 4 months since posting. I lied in my post from a few months back about trying to keep up with the blog...keeping up with 3 kids is no joke, we are in constant motion around here.

You all know how we feel about summer though! We have been thoroughly enjoying our time at the pool, beach and just being outside. The big kids are in gymnastics camp this week and they love it! They are also completely exhausted when they get home!!

Charlie Claire has been a busy girl! She loves loves loves the pool and has become such a good swimmer! We switched Occupational therapists and she has been doing great with the change. We've been going twice a week and it seems to really be paying off. Vision therapy is also going super well. C just had her vision assessment with the developmental vision doctor and her eyesight improved from 20/70 to 20/30 since October! Her vision therapist has been amazing and Ricky has played such an integral role in her progress. We have tapered C completely off trileptal so she is currently only on Keppra and she is scheduled to see her neuro next month!

Some pictures of what we've been up to....

Cakes loves doing puzzles. This was something that was soooo hard for her at first and she is really getting the hang of it!

Vision assessment

How is this boy 7 months old already?!

Jackson & Charlie love showing Jones how all his toys work! :)

Family pool day!

Beach babes!

Vision therapy homework! Jackson is a great helper!

beach days are the best days!

wolfpack!

Jones is working hard on his core...planks are on his list of favorite things to do!

And lastly, thanks to our sweet friend Jessica (check her out here) for capturing some photos of our sweet babes!

Can you all believe it's August? I am not ready for the kids to start kindergarten in a month! Any of my seizure parent friends have tips on this transition? Not so much for C, she will be fine, it's for me! I am so anxious about leaving their small, amazing preschool and moving into a "bigger" environment.

sweet summer time

2016-08-02T19:40:00.001-04:00

It has again been about 4 months since posting. I lied in my post from a few months back about trying to keep up with the blog...keeping up with 3 kids is no joke, we are constant motion around here.

2,629,038 minutes...

2016-03-30T07:56:00.000-04:00

No matter how many minutes pass I will never forget...

The second I woke up the morning of your surgery

The shuttle ride over to the hospital

The way the pre op room smelled as we were waiting to meet with Dr. T (surgeon).

The way my heart felt when the anesthesiologist took you from my arms

The feeling of walking down the hall with Daddy to meet up with the rest of our family not knowing exactly what was happening to you

Staring at the pager hoping it would buzz just so we could get an update from the OR nurse

Hours later finally hearing that the surgery was complete and you were getting closed up

Rushing to meet with Dr. T and seeing you getting wheeled into the PICU

The relief my heart felt when I was back within arms reach of you

The overwhelming feeling of gratitude I feel every second of every day that goes by that you do not suffer through a cluster of spasms.

Charlie Claire...we always knew we would be proud of you but I don't think we knew it was possible for us to be in awe of you.

It would be an understatement to say how amazed we are by you and all of your hard work and progress.

You are such a fighter. We love that you are fearless and have little to no reservations about trying new things.

You do everything BIG...you love big, play big, smile big, work big!

Every therapy appointment, every doctors appointment, every blood draw...you handle every little thing thrown your way with such grace and with a smile on your face.

This past year you have turned into such a little girl. You love school and your friends! You are the best sister...you and Jackson have such a inseparable bond and you've turned into such an amazing big sister to Jones!

Thank you for teaching us how life should be lived and thank you for not letting all of these obstacles stand in your way or change your approach to life!

You have epilepsy but epilepsy does not have you.

Cheers to another amazing year baby girl...thank you for letting us be on this journey with you!

(you can click on the bottom right hand side of the box for full screen!)

Happy 2016!

2016-02-08T17:59:00.001-05:00

My goodness...it's been 4 MONTHS since our last post!

Unreal.

We have been so busy you guys!! We have so much to catch you up on!

In the fall Jackson and Charlie Claire started soccer and had a blast! It was so fun to watch them learn new things every week and just have such a good time!

Around mid September Charlie Claire starting having some new "episodes." They were SUPER fast and had no pattern so they were super hard to catch. We really only knew she had one because she would cry after and C is not a crier. They weren't interfering with her day or causing any issues so it wasn't an urgent matter but one that still needed to be addressed.We tried increasing her trileptal since her dose was not even at a therapeutic level when these little guys started. By December we had gotten Charlie up to a high enough dose with no improvement so we made a trip up to Richmond to see her neuro, added a new medicine and all has been well on that front since she started it! We go back in a couple weeks for a follow up! Eventually if all stays stable we will taper the trileptal.

In October Jackson and Charlie Claire turned 5!!!! We had such an awesome time celebrating their birthday!! It's mind boggling to me that they are such little kids now!!!! I love the conversations we have, I love listening to the conversations they have with each other and other people, it's so fun seeing their likes and dislikes!

Charlie continues to rock out her therapies! Our nanny, Ricky, has done such an amazing job working with C on all of her "homework." We have actually cut back on her speech therapy!!! Vision therapy still seems to be providing the most positive impact on C's development. Ricky spends hours each week working with C and we are so thankful because it's really paying off!

On December 21 our family was blessed with a new baby BOY! Jones Woodrow was born at 11:21am and has completed our family! We couldn't be more in love!

The past couple months have been a blur but I think that sums everything up. I've included a bunch of photos, I tried to keep them in order but apologize if they are a little unorganized...time around here is pretty limited!!!

Soccer fun!

Birthday!!!

Helping paint the baby's room!

Vision therapy!

Jackson loves getting to go with C to OT!

Zoo day with Ricky!

Halloween fun!

School pics!

Firefighters!!!

best friends forever!

Thanksgiving!

Rainy day activities!

Neuro visit!

Vision work with Ricky!

Christmas Town!

Last weekend just the two of them!

Welcome to the world Jonesy!!

First Christmas as a family of 5!

Big brother and big sister love loving on this little guy!

Hope this post finds every one happy and healthy in the new year!! We will try to not wait so long to post!!!

"The best thing about memories is making them..."

2015-09-14T13:54:00.000-04:00

I often struggle with keeping up with C's blog. It's not that I don't have things I want to share it's just that there is not as much to "report" on. I am so grateful that Charlie Claire is so stable because I realize that is not guaranteed. Things also tend to seem so "normal" that I forget to appreciate all the little things she does every day that we once weren't sure if she would do. When Charlie was first diagnosed and I hopped on the internet to learn more about infantile spasms my search results were devastating. I searched high and low for a success story and at the time I did not come up with one. Once we were past C's surgery I told myself that I wanted this blog to be that ray of hope for another mama who found herself in the same situation as me. It is for that reason that I keep posting things and while I don't have much medical stuff to report on I do hope that if someone comes across this blog that they will have hope that everything is going to be ok...

Beach days....

Family vacation...Charlie Claire loved eating breakfast on the porch!

Enjoying the boardwalk rides!

Vacation!

Pool time with Uncle Jason

More rides!

Love this beach girl!

Big hugs

Making pizzas with Daddy!

Fireman Jackson to the rescue...

VERY into legos

Beach buddies!

So glad Uncle Jason, Aunt Jen and Sienna were in town for a few days!

Vision therapy...Cakes works so hard and is so good about doing her homework! She has definitely made so much progress and we are so glad that this form of therapy is available!

Turning the tables on her therapist!

Working on writing our names...

Dinner with these two littles the night before school started!

And just like that...the first day of their last year of preschool!

And lastly...J and C have some news to share!

Hope everyone enjoyed their summer and are settling into the new school year! :)

"some of the best memories are made in flip flops..."

2015-07-09T14:59:00.002-04:00

Happy July everyone!

We hope everyone is enjoying their summer as much as we are enjoying ours! This time of the year makes us happy! We get to do most of our favorite things and I don't know about anyone else but I love when my littles are not in school, I thoroughly enjoy our more leisurely pace!!

It's been quite a while since our last post...

We've enjoyed the beach with family!

And this kiddo is becoming quite the swimmer!

Their new favorite thing is "reading" stories to each other

Enjoying time with daddy!

Goobers!!!

Can barely get this little fishy out of the water!

Routine check up with Dr. M (neuro)...nothing new to report! No news is good news these days! :)

Sass face "driving" us home!

He has a really tough life!

Sister trying really hard to catch Jax!

At first I was nervous when the house was so quiet...then I found this!

Assessment at vision therapy...C is making awesome progress and we are seeing amazing improvements in so many different areas!

Bedtime snuggles with daddy!

May and such...

2015-05-23T14:24:00.000-04:00

Seriously, how has it been over a month since our last post?! There really isn't much to report on which is a really good thing to be honest! :)

I'll just let the pictures do the talking...

When Jackson joins C at OT...

There is constantly an "emergency" in our house!

Beach! Beach! Beach!

Happy Birthday Nonno

Welcoming their new cousin

First pool day!

Visit up to Aunt Jen and Uncle Jason's for Sienna's birthday!

Happy Memorial Day Weekend!

Vision Therapy

2015-04-14T11:13:00.000-04:00

When Charlie Claire had her surgery mine and Jason's biggest concern was the vision loss. We knew going into surgery she would lose the vision on the right side of each eye since the surgeon was removing her left occipital lobe. We do think that vision has been one of her biggest hurdles and since starting vision therapy in July last year we have seen some amazing changes!

She seems so much more confident visually which makes her more comfortable trying new things. She has always loved the park but has steered clear of ladders preferring steps since they were easier for her. In the past month though she has made significant progress on the playground! Same goes for working on letters and writing. She is much more interested lately and we think the credit really goes to her vision therapist and our nanny, Kristen, for working endlessly on C's "homework" with her.

If this kind of therapy is available in your area and your little has vision issues I highly, highly recommend looking into. I truly feel this has been one of the best things we have done for Charlie Claire.

one thousand four hundred and sixty one days...

2015-03-30T06:58:00.001-04:00

Four years ago on this very day when we handed our 5 1/2 month old baby girl over to a team of doctors and nurses we had no idea our lives were about to change forever.

Standing together on the morning of Charlie's surgery Jason and I had no idea what to expect. We were essentially told by C's team to hope for the best but prepare for the worst. Even though we didn't know what the "best" would be.

In the days, weeks, months after Charlie Claire's surgery we analyzed and stressed over every move she made. All of her milestones and progress we questioned. We would have given anything to have some type of crystal ball that could provide us with some indication of what we were dealing with.

Little by little over the course of 4 years we have come to realize that we have been blessed more than we ever could have imagined. Charlie Claire is such an extraordinary little girl. It has been our pleasure to be with her on this amazing journey.

This past year has proven to be one of our most exciting with Charlie Claire developing in ways we only could have dreamed of 4 years ago. It also has had it's challenges, aside from being a typical sassy 4 year old, with C being admitted to the hospital a couple times and going back on medication. While we know the importance of staying on top of Charlie's epilepsy we have gotten much better at taking things in stride.

Today we celebrate Charlie Claire and her amazing will and determination. We celebrate her medical team who have been nothing short of miracle workers and we celebrate our family and friends who have been on this wild ride with us. Thank you!

Cheers to another year!

(you can click the bottom right corner of the video to make it bigger!)

Purple Day and such...!

2015-03-26T19:55:00.001-04:00

Today is Purple Day!

This event is meant to raise awareness around the world for epilepsy. 1 in 100 people have epilepsy. One of them is our sweet baby girl. We are always aware of epilepsy. Some days we are very aware, other days we are barely aware but we will always be aware. We are aware for ourselves, we are aware for our seizure friends who we have met along the way and we are aware for those who live with epilepsy every day.

When I sat down to write this post I realized just how long it had been since our last one....boy, time really does fly. Quick little photo dump to show you we are still alive. Busy, but alive! :)

We wore our purple today...did you?!

Not her first rodeo...

2015-02-09T19:45:00.000-05:00

A few months ago we found out that Charlie Claire needed some dental work done in which she needed to be put to sleep for and it would be done at the children's hospital. We had it scheduled for January 28th and we were super excited to learn that her procedure would be done at the outpatient site closer to our house! Until two days before said procedure the anesthesiologist reviewed C's file. Given her medical history and her seizures they felt more comfortable having her at the main hospital in Norfolk. The procedure was backed up a week.

I can't lie, I was nervous since it's been 2 years since Charlie Claire has been sedated and in that sort of hospital setting. She is not a 2 year old anymore and she is super aware of EVERYTHING. We talked about the procedure A LOT, she had a bunch of questions but overall didn't seem phased by the situation.

Our little girl continues to amaze me with the way she handles the things that are thrown at her. She didn't even bat an eye being at the hospital. She loved meeting all the nurses and playing with the kids in the play room while waiting to be called back. When it came time for her to go she drove a little car right back to the OR, barely saying goodbye to us as she went on her way.

The procedure went very well and she was back to her normal self by later that evening!

And these two were super pumped to be back together!

"If we had no winter the spring would not be so pleasant..."

2015-01-26T14:15:00.000-05:00

I am not completely sure I agree with that statement, I am confident I would still appreciate the warm sun on my face even if I had it every day of the year! Charlie Claire most definitely takes after her mama...she proclaimed the other day that she "does not like the cold, she likes summer." Me too baby girl, me too!

Jackson and Charlie Claire started going to school 5 days a week after the holiday break and they both love it so, so much. I had their conferences this morning and both of them are doing great! It was so heart warming to hear such nice things about them and know that they are so loved while they are at school!

Charlie Claire has been doing amazing with her vision therapy. We really need to thank our nanny for that since she is truly the one who works the most with C on her homework. She is doing so well that it's actually time for her to get new glasses! She has made a significant improvement with her right eye. I am not sure if any other families who kiddos have had the same vision loss as Charlie Claire have done developmental vision therapy but I truly believe it has been one of the best things for her. It has honestly made such an impact in so many areas. I highly recommend it.

Thinking two pairs of sunglasses will make summer come quicker...

This boy...!!!!

These two are SUPER into each other these days. They tell us they are BEST friends and then 3 minutes later they fight like cats and dogs! ;)

Woke up the other morning and found this....

This girls day was MADE at a friends birthday party!

Got to love a park day in January!

Hope everyone is having a fantastic Monday!

The Most Wonderful Time of the Year

2015-01-07T20:16:00.000-05:00

Merry Christmas and Happy New Year Friends! :)

I am a summer girl at heart but I do love Christmas!! Jackson and Charlie Claire are at such a fun age, this Christmas was by far the most fun!

Norman and Olive made their way back to our house this year! Jackson and Charlie Claire absolutely loved having them and were super sad to see them go.

A week before Christmas we took a family trip to Christmas Town at Busch Gardens. We had the most amazing time! Jackson and Charlie Claire loved all the lights, the rides, the people, etc! I am so glad we were able to take them and can not wait to go again next year!

My brother, sister in law and sweet niece Sienna were in town for Christmas and it could not have been more fantastic! I just love, love, love having them around!

Happy New Year!

Here's to a happy and healthy 2015! Cheers to you and your family!!

Catching Up, Neuro Visit and Such...

2014-12-15T19:51:00.002-05:00

How has it been over a month since our last blog post?! So much has happened in the past month!!

You may want to get comfy for this update! :)

The weekend before Thanksgiving I ran my third half marathon...I had a really good training system down this time around and I definitely had my best time. This was also the first year of the race so it was nice to run a new course!

Excited to go to packet pick up with me!

My sweet niece had some very encouraging words!

Another 1/2 in the books!

We had a great Thanksgiving. Holidays are definitely at an all time high around here with Jackson and Charlie Claire understanding them so much more! They were so excited to sit down and eat with so many of our family members!

Thanksgiving baking with Fairy Godmothers!

Sass face ALL. DANG. DAY.

C has also been in dance class since September and she just LOVES it. I think she really just loves her teacher and the dance she picks up along the way is just a bonus!

Jackson has been keeping himself super busy as well...

After Thanksgiving, Jackson and Charlie Claire hopped right on board with Christmas! Again, this has been the most fun holiday season since they really seem to understand it. They could not sound any cuter singing the songs they learned at school for their holiday program!

Lastly, we had a check up with Dr. M. today. Cakes could not get enough of him!! It was super cute to see since she has NOT always been like that. This is the first time in 3.5 years that we have gotten a picture of her with him! He was super pleased with how C has been doing. We know her medicine is at a super low level but since it is working we are all on the same page as far as keeping her dose where it is for the time being. We are aware that when she has a growth spurt it's possible for her to have break through seizures but we would rather wait for that to happen then increase her meds prematurely.

We are always thankful for everyone who has shared this journey with us and feel so blessed to have such an amazing support system! We hope everyone is enjoying this super fun time of the year!

Epilepsy Awareness Month

2014-11-06T20:06:00.002-05:00

I often find it difficult to write posts about bringing awareness to epilepsy. On one hand, I think it's super important to help stop the stigma around seizures and to help people understand what epilepsy is really like. On the other hand, I often wish that we were not aware of epilepsy.

An epilepsy mom friend of mine posted an article the other day that really hit home to me. It seemed to perfectly sum up exactly how I feel about epilepsy. "Because An Entire Month Is Dedicated To My Nemesis" spoke to me on a lot of different levels and I hope you take the time to read it for yourself.

I will leave you with a little paragraph from the article...

I hate epilepsy. I want it gone. I want my sweet daughter, her precious little friends and every person in this battle to be victorious for good. But because it is here for now, I will do my best to spread awareness of the brave warriors heroically fighting a battle they don’t deserve to be in.

And some pictures of our sweet warrior, the reason we are aware...

Happy FOURTH birthday!

2014-10-15T19:59:00.000-04:00

It's crazy to us that our "babies" just turned FOUR!

This year was so much fun and super exciting since both Jackson and Charlie Claire were very aware of their birthday and the whole celebration!

Birthday dinner with Daddy a few days early!

Last day as 3 year olds!

Couldn't be more ready to save the world! :)

We heart Miss Kristen

Birthday snuggles with Grandma!

<3 <3 <3

My favorite little man!

Happy Birthday!!!

My best girl!

Four of Jackson and Charlie Claire's most favorite people -- so many of their smiles start with these 4 people!

We are so thankful that we were chosen to be parents to these two sweet souls!! We had such a great time celebrating these two little ones and hope they had the most amazing birthday!

Neuro Follow Up!

2014-09-24T21:09:00.000-04:00

Before we get into the follow up visit from Monday how about we talk about the past couple of weeks!

After Charlie Claire was released from the EMU two days later her and Jackson started their first day of the "older" 3 year old class at preschool!

Super sweet Jackson and "cheese" face Charlie!

Later that day Charlie Claire started her first night of dance class!

Monster was super excited for his sister!

Charlie Claire has been LOVING aqua therapy and has been making a lot of great progress!

Every thing else has pretty much been status quo...

Morning snuggles

Story time with Aunt T

Morning walk with Ripken

Relaxing waiting for C's blood draw

Making sure our treadmill has other uses in addition to mommy running!

Now that brings us to Monday!

Charlie Claire made us promise that she wouldn't have to get stickers on her head and while we explained that there would be no stickers involved, I am not sure she believed us....her face says it all!

Once there we had quite a wait so it took everything in us to entertain two rambunctious (almost) 4 year olds!

We are super happy to report that since starting the medication Charlie Claire has not had any of the new episodes! We weren't exactly sure what to expect since she has never really responded well to medication but the last event that we saw was the Saturday morning that we were in the EMU. Dr. M had the blood test results and C's level is really low. The range is typically 10-35 with most people seeing benefits in the high teens - low twenties range. Currently Charlie's level is 10. Since she seems to be responding to such a low dose and we have not seen any side effects we all agreed that there is no reason to increase her level. Dr. M was very pleased with C and how well she has done the past two weeks. We were instructed to call if we start seeing the episodes start up again which would mean there is a need to bump up the medication. If all stays "normal" we will see Dr. M before the holidays!

We are beyond grateful that currently Charlie Claire has responded remarkably to the trileptal and thankful that we have been able to relax a little...it is exhausting to be so anxious. We are still on seizure alert 24/7 which is just the way life is for us but it's a relief to have a little breathing room!

Thank you for all the thoughts and prayers...they are working! :)

"A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles"

2014-09-06T21:56:00.003-04:00

A couple weeks ago on a Tuesday morning Jason and Jackson went out to run an errand while I hopped in the shower. Typically when I shower Charlie Claire sits in the bathroom and talks to me. On this Tuesday morning my shower was very quiet. When I stepped out I saw Charlie asleep in my bed at 10:45am.

At first we did not think anything of it and just went about our day. By the end of the week I emailed the neurologist because it seemed that C was just a little "off." We decided to give it a few days to see if she was possibly coming down with something. She seemed fine over the weekend but then on Tuesday morning I came home from a meeting and she threw up. After throwing up she laid down and fell asleep.

I called the pediatrician and brought Charlie Claire in that afternoon just to get the once over. Essentially everything looked good, C was running around like nothing had ever happened and as we were about to leave she had started to dry heave and then asked me if she could lay down. I carried her to the car where she proceeded to fall asleep. Over the next few days I noticed that C would have "episodes" (in the morning, only one time in the afternoon) where she essentially zones out for about 15-20 seconds and then she would dry heave or vomit and then ask me to pick her up and then tell me she wanted to snuggle with her pillow. Once she was snuggled up on her pillow she would sleep for about 30 minutes.

After waking she would proceed with her day as if nothing ever happened.

Thankfully after being in touch countless times with Dr. M's office they were able to quickly get Charlie Claire into the EMU for a 23 hour EEG.

These episodes have not been happening every day so I was extremely nervous that C would not have one and then we would have been SOL. She did not have an episode on Friday morning so I had a good feeling that she would have one this morning. Typically they have been occurring between 7:30-8:00 in the morning. Right about 8:00 this morning when Charlie Claire had not had one I really started to feel defeated but a few minutes later I was super thankful at 8:10 when she had an episode. She did not get sick but she did ask me to pick her up, she asked to snuggle with her pillow and she promptly fell asleep.

Dr. M was on service this week so we were blessed to have him being in the hospital reading her EEG. He came to see us a couple hours later after reviewing the study. Essentially these episodes are seizures but they are still minimal. It is normal to sleep after a seizure, it's just not something C has ever done. He is not concerned with this new development. He said it is not uncommon for seizures to present themselves differently as the brain grows and matures. The seizure itself is not causing any damage to C's brain and it essentially shows the same pattern as her "normal" simple partial seizures. We have been able to keep her off medication for so long since her normal seizures do not interfere with her day, however, since these episodes are we need to intervene.

Dr. M has always been conservative with C's medications and he still continues to be. He has always been big on weighing the risks/benefits and we are grateful that the plan he came to us with today was well thought out and logical. We will be starting Charlie Claire on Trileptal and we will see how she responds.

We were discharged this afternoon and we are settled back at home now!

We continue to be beyond thankful for Dr. M and his approach with Charlie Claire's care. We have been blessed with a great EMU staff at VCU who are so, so good to our girl when she is there! We are grateful for all of your love and support! Lastly, we are thankful for Charlie Claire and she continues to amaze us with how well she perseveres through whatever is thrown her way!

"I dream of summers that last forever!"

2014-08-30T20:04:00.002-04:00

I can't lie, I am so sad summer is coming to an end. I love having Jackson and Charlie Claire home and I love our more relaxed schedule -- well as relaxed as it can be with two almost 4 year olds! :)

Fireman Jackson

Fighting fires in the yard!

Ready to head to open house!

L.O.V.E. and C is loving her new glasses!

Our beach girl !

we love our beach days!

working hard at aqua therapy

C loves going to see the "pool doctor!"

Jason and I were talking the other night about what "back to school" traditions we want to start...what are some of yours?!

Developmental Eye Dr

2014-08-21T21:02:00.003-04:00

Wow, this post is way overdue!

I learned so much at the developmental eye dr that I was slightly overwhelmed. We got more useful information at the appointment then we have in 3.5 years at the regular ophthalmologist.

The dr had some really great insight which made a lot of sense to us. He also seemed to uncover that Charlie Claire only uses her left eye. It appears that when C tries to use BOTH eyes that she sees DOUBLE so to compensate her brain "shuts off" the right eye and she only uses her left.

Due to this finding, Charlie Claire is getting glasses! :) The glasses should help C use both eyes without seeing double! We also received a TON of homework to do with Charlie Claire. Thank goodness for our nanny because C isn't super interested in doing said homework with me but is very cooperative with Miss Kristen!

The eye dr really wants to challenge Charlie Claire (hence all the homework) because he thinks she will really benefit once we get her vision back on track. We also have the most amazing OT who went to two appointments with us at the eye dr's office so she could hear all the information first hand and work on all this vision goodness during her sessions with C as well! :)

Aside from all of that we just recently enjoyed a fun filled few days in NJ and we are soaking in as much summer as we can!!!

We heart our beach days!

Smooches at the park!

Cousins!

Point Pleasant morning run!

Goofballs!

Getting ready for his calendar shoot!

Boardwalk games with Nonno!

Boardwalk rides with Daddy!

One in Twenty Six

2014-07-27T08:21:00.001-04:00

A few months ago I came across the blog, One in Twenty Six. The blog was super fascinating to me since it is written by a pediatrician who has epilepsy. I have had many conversations with parents of kids with epilepsy but this was the first time I was able to connect with an adult who is living life and thriving despite having seizures. Of course, her history is not the same as Charlie Claire's but it is still refreshing to see that it is possible to have a wonderful life regardless of epilepsy.

Kristin and I exchanged a few emails and have talked on the phone which was super helpful to me since I was able to ask her questions that I have never really been able to ask anyone before!

The purpose of Kristin's blog is to raise epilepsy awareness by sharing stories of other people living with epilepsy. I was thrilled when she asked if she could write a post about Charlie Claire since my hope has always been to help another mom who may find herself in a situation similar to ours!

Please visit Kristin's blog and read Charlie Claire's story!

Developmental Pediatrician

2014-07-21T19:31:00.000-04:00

I originally was not going to post this on Charlie's blog but when I started to write the post about C's appointment at the developmental pediatrician I didn't feel right not acknowledging what has been going on in our lives.

On Saturday the 12th my (almost!) 93 year old grandmother passed away. While her age would lead one to believe that this was something we should have expected, her health and her young spirit made us think she would live forever! Her loss has definitely impacted me and my whole family and we are currently mourning the loss of this unique and funny lady!

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Ok, so on to the developmental pediatrician.

The appointment was totally uneventful which is actually a good thing! The dr felt that Charlie Claire was slightly delayed in some categories but still within a "normal" range! He felt that underneath her minor deficits she is an intelligent young lady and there was no reason to believe at this time that she will have any major long term issues. He said that usually the biggest obstacle he faces is kids having a loving, supportive environment to help them grow and thrive but it was obvious that wasn't an issue in Charlie Claire's case! :) We did discuss her risk for ADHD which we are already aware of and something that is on our radar screen.

Thursday is C's assessment with the developmental ophthalmologist, will let you know how that 2.5 hour appointment goes!