Sitting!

It's official, Charlie Claire is sitting on her own!!!



This girl has been wanting to sit up on her own for a couple months now. When she is laying down on her back she is constantly trying to sit herself up!  Miss Wendy has given us a lot of exercises to do with C to help her and then she really worked with C on it this past week and home girl finally nailed it!!! Way to go CC!

Charlie Claire now has a developmental educator, Miss Nina.  Miss Nina comes once a week and she is super awesome.  One of Charlie Claire's most favorite things is music (The Black Eyed Peas are on the top of her list!) and Miss Nina does a lot of songs with her and C just LOVES it! Some of the things Nina works on with her overlap with Miss Wendy and some things are completely different.  We are so fortunate that Charlie is in such an awesome Early Intervention Program, we just love these ladies!

We talked to Dr. M's office today - we are doubling C's dose of her new medication (lamictal) and decreasing her morning dose of phenobarb from 5mL's to 2.5mL's.  So far we have not noticed an improvement with the new medication but we are not at a therapeutic level yet.

While Miss Charlie Claire has been busy sitting up, action Jackson has been quite busy himself!! He is loving food these days and if you are having some, he wants it! Jackson is officially a stander now and has started walking along the furniture! He is obsessed with Charlie, it's really kind of sweet actually! However, since she isn't quite up to his speed we have to referee and say "be nice" a lot!  We are still working on teaching him to leave C's glasses alone!!

North Babies!

Family fun time in Maryland! Thanks Justin and Lindsey for hosting cousin bash 2011!!

Jackson giving Jamison some kisses!

But then thought it would be more fun to climb on him!

Sweet Madison giving Charlie Claire some lovin'

And going in for another one!

North Girls!

Love my little man!

C's face makes me laugh!

Madison loved to pet "Jaxi" like a puppy!!!

C hanging with Kristy and Annie

This boy is all about some books!

Working on sitting up by herself!!

T.R.O.U.B.L.E.



GLASSES!

I think with all the activity going on last week we forgot to mention Charlie Claire's eye dr appointment. Thankfully her eyes still look healthy but she does have a pretty significant astigmatism. The dr said that as she gets older her condition can improve but right now everything she sees is blurry.

So, without further ado...we present to you Professor Charlie Claire!

Another Hospital Stay Under Our Belt!

Yay, we are HOME!!!

This morning was super busy. Dr. Tye and his fantastic nurse, Joann, stopped by.  He just wanted to see us again and go over everything we talked about last night just to make sure we understood everything.  After they came by Dr. Morton and Dr. G made their way to us. Not sure if we have talked about Dr. G before but she is doing her fellowship under Dr. M and she is AWESOME! She has such an amazing way of explaining things in "mom terms."

Dr. M discussed the new medicine they started C on today. This medicine has a BIG RISK of SERIOUS RASH if the dose is too high too quick so they have to go low and slow with the dosing in order to help prevent it.   It will take about 2-3 months before C will get to a therapeutic level which is when we can determine if it is working. This will be the last medication we try before discussing surgery.

Dr. M and Dr. G said that they (along with Dr. Tye) want to give this about 3-4 months before we decide on surgery. Dr. M is very much a risks/benefits guy, As we said earlier, he does not want to put Charlie Claire on a medication that has side effects 24 hours a day for episodes that only add up to about 3 minutes of her day. In his words "the treatment can't be worse than the disease." The reason they are comfortable waiting 3-4 months...these episodes are not having any impact on the rest of her brain. Even when the episode is happening the rest CC's EEG is completely normal.  If these episodes were affecting the rest of her brain then their game plan would be different but that isn't the case.

Dr. M and Dr. G really want to get Charlie Claire off phenobarb because of the effects it has on cognitive thinking so over the next couple of months we are going to be tapering that while increasing the new medication.

While we are hoping this new medication is the answer it is hard for us to get our hopes up too high since Charlie Claire has never responded completely to any meds in the past. It is comforting to know that we have an answer to why these episodes are occurring and to have to a game plan in place - if you know me, you know I am a game plan girl! It is also comforting to know that these episodes are not harming CC or her development. So, while I am not the most patient person I am comfortable and confident with the plan we have set in motion.

A special thank you to our sweet friend Beverly for spending the day with us on Thursday and giving us an extra hand to help with Jackson and to keep me company...it isn't always the most fun to sit in the hospital all day, it was nice to have a buddy!! Thank you so, so much!

Day 3...

Good morning from the EMU!

Can you guess who is bored at the hospital?!

MRI Results

Can we talk about how much we LOVE Dr. Tye (surgeon)?!! He was in the OR all day and as soon as he got out he went and checked on C's MRI and then came straight up to talk to me...well after he spoke to Dr. M (neuro)!

So here are the results - there is a TINY part of Charlie Claire's occipital lobe that didn't make it out. When they did the surgery they started more towards the front of her brain and worked their way back . By the time they got back there with all the trauma going on they couldn't see that little piece because it is deep. The CT scans after surgery did not show it either because of all the fluid and swelling. Now that the dust has settled this piece is visible and that is causing these little episodes. Dr. Tye and Dr. M do not want to rush back into surgery before giving Charlie Claire some more time to heal and to try a couple more meds. Right now the episodes (which still are not taking on a full seizure pattern) are so short and not interrupting C's daily life. So before taking (Dr. Tye's words) "a beautiful little girl who is growing and thriving" and putting her back in the OR they would like to give it some time. We will talk to Dr. M in the am regarding the game plan for meds. We are under the impression that if things do not start to improve in about 3 months that is when the decision will be made for surgery. If they do need to remove this tiny area it will not affect her motor or sensory strip, this piece is way in the back of her head - not even close to those two strips.

We are beyond grateful that C is at MCV under Dr. Morton and Dr. Tye's care. They are both so amazing and it is comforting to know that they are as on top of Charlie Claire medical needs as we are. The staff at the EMU has been equally as great and Charlie Claire has been her normal, chatty, funny self!

Thank you all so much for the emails, texts, phone calls, etc. We may not get to respond to all of them but we get them and we love them.

Check that...

Talked to Dr M and Dr tye. They are looking on MRI to see if there is any more of her occipital lobe that needs to be removed. The episodes aren't any worse then they were when we were here in may and Dr M said they aren't affecting the good part of her brain so if surgery isn't needed then he will try a couple meds. If they dont respond to meds he isn't overly concerned because even if she has 20 a day it's only about 3 min total of her day so to give her a med that causes side effects 24 hours a day isn't worth it. They are removing EEG for MRI and then reapplying and hooking it back up and we will be here overnight.

Day2

MRI is set for 11. C had a few more episodes this morning so it looks like she will not have to be hooked up again after the MRI. Thank goodness, that was not pleasant yesterday. Charlie has not been allowed to eat this morning which made her a tad cranky but they let her have some pedialyte and that took the edge off. They should be removing EEG around 10:30 and then doing the MRI. Hoping to get discharged today.

And as for action Jackson...he has been such a good boy even though he refuses to smile at the nurses!!! This is his "I'm not sure how I feel about grits" face...

Day 1

We had a "fun" day in the EMU! It is super helpful that Jackson can come to the hospital now since CC is not in the PICU! He was super interested in what was going on on top of his sisters head!

CC is being a tad stubborn and has only had one episode since the EEG has been hooked up today. From what they can tell it is in fact a seizure. We don't have much more info since we didn't talk to Dr. M. tonight but hopefully we will get some of our questions answered tomorrow. We are also hoping that Charlie Claire has a couple more episodes so that the dr's can gather the info they need.  They are starting C on a new med tonight and they also would like her to have an MRI to see if there is anything visible on there that would be causing the seizures. We are not sure if the MRI will happen tomorrow or not, we will get more info on that tomorrow. The MRI kind of stinks because now Charlie Claire will need an IV and she will have to be sedated. God bless that little girl...she is such a trooper.

E.M.U.

Admitted to EMU and after Charlie Claire cried and screamed through the entire EEG application she is quiet pleasant now!

We will keep you posted on what is going on!

TEAM CHARLIE CLAIRE!

Praise the bridge that carried you over. ~George Colman

We have been meaning to do this for a while now and are so sorry it has taken us so long.  As we have said before, thank you all so much for being on TEAM CHARLIE CLAIRE and for all of the love and support you have shown for Charlie Claire and for our family.  You all have made this burden so much more bearable for us and for that we are forever grateful. Thank you for continuing to show interest in our story and for lending your support to us and our sweet baby girl -- your kind words, thoughts and prayers mean more to us than words can describe.

Hopefully if you have sent us a picture it is included in here...if you have not yet sent your picture, please email, text, facebook it to me so we can add it to C's scrapbook!  Thanks to my sister-in-law, Jen for taking the time to put these photos together for us! 

<>

<>

A little Consideration, a little Thought for Others, makes all the difference.”

Winnie the Pooh

Epilepsy Monitoring Unit

Ok, so the eye thing hasn't gotten any better or worse it's just not responding to the Keppra or an increase dose of Klonopin so Charlie Claire will be getting admitted to the EMU at MCV on the 13th.  Dr M (neuro) wants to get some more information on what is going on before taking any more steps. We are thankful for having such a proactive neurologist who wants to get to the bottom of this as much as we do.
We are currently in the process of making arrangements for the trip - C will be in there for at least 2 days.

We would appreciate any and all thoughts and prayers.  Thank you all so much for your continued love and support!

3 Months!

Wow...

Yesterday was 3 months since C's brain surgery...and look how far we've come baby....

Before surgery you would not have found C in the jumperoo and she would not have responded to her name - or anything for that matter!! We have not lost sight of how fortunate we are that CC was able to have this surgery...it was most definitely life changing.

Charlie Claire had a ROCK STAR physical therapy session the other day and it is just so awesome to see Wendy work with her and see all the things she is doing. C's newest thing is making a fake cough sound and when you make it back at her she LAUGHS! I told Jason the other night that I keep looking for a BIG sign that smacks me in the face to let me know that down the line Charlie Claire is going to fine.  Then I realized that maybe I need to focus on all the little things she does on a daily basis that whisper to me "mom, I am going to be great!"

Hope everyone has a great time celebrating America's birthday!




-