homecharlieclairejacksonepilepseyinfocontact

Thursday, November 10, 2016

November & Ariel...

"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!


















Tuesday, August 2, 2016

sweet summer time

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

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.  

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!