Catching Up, Neuro Visit and Such...

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

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!

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!

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"

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!