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