VCU Recap

Charlie Claire never ceases to amaze us.  

You can not explain to a two year old that someone is going to wrap them up in a sheet, hold them down and glue a ton of electrodes to their head and then they have to stay in one room for the next 23 hours. The admission process was a bit lengthy yesterday...2 other kiddos got admitted at the same time so we were the last ones to get the EEG going.  We had an awesome tech who stayed super focused and was pretty quick.  When he would put the lead on C's head she was fine but when he had to glue each one down with the air gun things got a little dicey.  It's loud and the air is cold on the glue and each time she would calm down while he was applying the next electrode but as soon as she would hear him reach for the air gun she would freak.  For lack of a better word she just looked petrified. And I am confident that there is not a worse feeling than having your baby look you in the eyes, scared as all get out and wondering why you are not doing anything to help.  Little does she know...that is what we are trying to do! 

Once the EEG was on and up and running C was awesome.  Sure she got antsy and stir crazy but so did I and I wasn't the one hooked up! :) We had a ton of books, snacks, stuffed animals and thank goodness for the ipad.  We were also able to facetime with just about anyone who was willing to answer their phones so that helped A LOT! C also got to sleep in a big girl bed for the first time last night! Needless to say she slept great, mama on the other not so much! :) 

Road Trip!

All set and ready to go

Hanging out!

Minnie has a hat too! 

Grapes and the ipad were our life saver

Grabbing a quick nap! 

 After Charlie Claire woke up from the above nap she had one of her normal seizures but she waited until this morning to do the new eye "thing." It was quick and thankfully my mom was in the room sitting across from us or else I wouldn't have known...it seriously was only about 5 sec.  Shortly after that the neuro came in and told us that C's normal seizure still looks the same on EEG (which we expected since it still looks the same in person) and that it lasted about 35-45 seconds.  He said the rest of her EEG looked great.  No subclinical seizures!!  No spikes!! Her sleep patterns look normal (normal for C but abnormal if you were to compare it to a normal sleep pattern since it should be symmetrical but because Charlie Claire's brain isn't symmetrical neither is her sleep pattern but it's normal for her!). As far as the new eye thing...NOTHING changed on the EEG during the brief episode.  He believes this is more of an ophthalmic issue than a neurological issue,which we will be addressing with her eye  dr in March, and at this time we are not changing anything with her medication.  

We discussed with Dr. M the fact that C had A LOT of these eye episodes last weekend and then woke up Tuesday morning with a bad cold.  He explained to us that Charlie Claire's "weakness" is her eyes.  Getting sick puts a stress on the body and that people who have a pre-existing weakness tend to have a "flare up" in that area when their body is put under that stress so it is not uncommon for this to occur when C is coming down with something.  I hope I did a decent job explaining that...it made total sense when he explained it to us! :) 

 Dr. M feels that Charlie Claire's development is moving along super well, he said she is a happy little girl and none of these issues are interfering with her day so until she gives us a reason to change her medication he has no intention of doing so.  

We are thankful that we collected so much good data, we are grateful that Dr. M was on service this week so he was able to read C's EEG immediately, we are glad that Dr. M is all about not over medicating Charlie Claire and we are blessed with one rock star little girl! 

ALL DONE!

Waiting to be discharged! 

Thank you from the bottom of our hearts for all of the messages the past couple days.  We have been truly blessed with an amazing bunch of CC supporters and we are thankful for each and every one of you!