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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!!

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!