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! 

sunday photo dump!

Thankfully these two sweet babies have done a good job keeping my mind off the 23 hour EEG ahead of us.

my heart be still

brushing your teeth is so much cooler when you get to do it with your best friend! 

this girl thinks Jax is the funniest thing ever! 

Sister LOVES sharing her food with grandma!

Making himself comfortable!

We are off to Richmond in the morning...we will keep you all posted! Thank you so much for the encouraging calls/texts/emails...we appreciate every.single.one! :)

Hope you all had a lovely weekend! 

jackson and charlie claire!

We can't get enough of these little love bugs! 

Don't you enjoy a pillow while you are in the bathtub?! 

Morning smooches! 

The "C" word...

You know happens when you start to feel comfortable? You say things like "we have gotten  comfortable", you book a trip for you and your husband to go to a tropical island with your brother and sister-in-law in a month and then bam...Charlie Claire likes to keep on our toes.  

Thursday night during dinner with a couple of friends from out of town I saw Charlie Claire do something, for lack of a better word, weird with her eyes. I have seen the girl do some crazy stuff with her eyes before but this was a first.  I didn't think much of it at the time but the next morning I saw it a couple more times.  I was able to get it on video and shoot it over to Dr. M.  I am also a firm believer that Charlie Claire does things like this to me on Friday so I am a hot mess all weekend until I hear from Dr. M on Monday.  Thankfully his office called first thing this morning.  Since we are going to be up there on Feb 1 for a routine appointment they told us just to monitor and observe C.  I however, wasn't super comfortable with that game plan so I asked if we should do an EEG to see what exactly we are monitoring and observing.  I thought this would be a quick 1-2 hour EEG but instead we got an admission to the Epilepsy Monitoring Unit on Monday.  After I talked to the nurse and informed her how many of these episodes we saw over the weekend Dr. M decided we should be a 23 hour video EEG so we can determine exactly if these episodes are seizures.  

I am not concerned for a few reasons:

a- we are well aware that Charlie Claire's medication level is low

b- if these are in fact seizures they do not appear to be having any type of negative impact on her whatsoever

c- C has proven time and time again that she is a fighter and there is no doubt she will rise to this challenge as well

I am concerned for a few reasons:

a- this will be our first hospital stay with a very on-the-go toddler

b- the EEG application...enough said

c- there will probably be a blood draw or two, really hoping there are no IVs involved

d- last time C was in the EMU she landed herself back in the OR (I know surgery isn't on the line but bad memories linger on...)

Of course I am a mama and I instantly have to think of EVERY possible scenario but I am trying hard to remain positive and I am hopeful this is just a side effect of her medication level being super low and all we will need to do it bump it up.  

We would greatly appreciate any thoughts and prayers you could throw our way! :) 

And here are some cute pics from the past few days...

1.19.11

Two years ago we took Charlie Claire to Hopkins (click that Hopkins link to view the blog post from that day!) and learned that she had "text book" infantile spasms.  

It has been quite the roller coaster ride since that fateful trip to Baltimore.  While we ultimately decided to go with VCU for C's care we are grateful to the Hopkins dr for being honest and upfront with us about the battle we were facing.  

busy babes!

Jackson and Charlie Claire are busy bees.  There is not much down time in the North house these days and while I am exhausted at the end of the day, I wouldn't change it!! 

J and C have become such little friends, it is the sweetest thing ever.  They love to hug and kiss each other, if one of them wakes up before the other they instantly ask where they are, they hold hands in the car etc.  but don't be alarmed...they most definitely fight! We are currently working on sharing and taking turns! 

One of the things that used to bother me so much when C was significantly behind Jackson was all the "ideas" I had in my head about having twins and all the things they would do together.  It broke my heart that they were at two different developmental stages and weren't on the same track.  Fast forward to the present and seeing them now...the way they interact with each other and how Charlie Claire wants to do EVERYTHING Jackson does (except use the big girl potty!!), it melts my heart! We are blessed. 

Little stroll down the street! 

Enjoying some ice cream! 

Brushing the frogs "hair"

music!

Our girl LOVES music! She always has! I am confident we sang "bumping up and down" by Raffi to her at  least 50,000 times during one of her hospital stays! She completely prefers dancing around to watching tv (thank goodness!).  

Currently, one of Charlie Claire's favorites (she has about 4!!) is "Gone Gone Gone" by Phillip Phillips, so we thought we would share! 

little mama

Charlie Claire has been doing something so super cute lately...she has started being a little mama to her stuffed animals (she does have a couple baby dolls but she seems more into her frog, elmo and bubble puppy right now).  She loves to share her juice and snacks with them, brush their "hair" and teeth, walk them around in her stroller, etc.  I am assuming that this is a "girl" thing since Jackson doesn't do any of the above but I am not going to lie, it is precious! :) 

TGIF! Hope everyone has a wonderful weekend! 

couple more just for fun!!! 

I can't get enough of this little boy! 

Speech

I was so proud of our girl today during speech therapy! She worked so, so hard.  It's unbelievably cute to hear her repeat the sounds/words that Allison works on with her.  She tries really hard and it just made me smile because Charlie Claire is a such a determined little girl...I love that about her! I really like Allison, she is pretty no nonsense and that seems to work well with C (and Jackson because you know if Charlie is doing something Jax wants in on it too!). 

Currently, C has a lot of words but things that start with the same letter (like bath, bye, book or milk, music, etc.) all sort of sound the same.  While I typically know what she is saying (and depending on visual cues you may too!) we are working hard on the different vowel sounds in order help those words sound different from one another. Allison gave me some ideas today on how to incorporate some things in to our day so that C gets to "practice" these sounds.  We are also working on two syllable words and actually got a few out of Charlie today as well! 

TGIF everyone! 

When Nothing Is Sure...

We've gotten to place where we are, dare I say it, comfortable.  Charlie Claire has been medically stable for quite some time.  This is the place I prayed to be a little less then 2 years ago when she was having a hundred + seizures a day.  

Our days now are spent catching Charlie Claire up developmentally but like her pediatrician said the other day (when we were blessed with two little ones with double ear infections for Christmas!) "if you didn't already know it you would never know what Charlie Claire has been through."  Words like this are so good for my soul because I know EXACTLY what has gone into getting C to a point where the developmental gap between her and Jackson and her peers has closed.  

It's at this point where I start to think ahead.  When I start to think ahead I start to wonder what challenges the future will bring with Charlie Claire.  My goal for 2013 is to think of this whenever I start to get ahead of myself.

I also thought some of my mama friends out there could use a little dose of this! :) 

2012 in pictures!!

Happy New Year! 

We are wishing everyone a very happy and healthy 2013! Here are a few pics that made us smile in 2012!