Charlie Claire Kisses!

We are excited about another Charlie Claire fundraiser that Jason's cousins wife put together! This is a super cute idea and we are very grateful to Sondra for organizing this!! Please feel free to share this information with friends, family, etc!

If you are having trouble viewing the flyer you can click on it and it opens larger in a new window. If you have any questions feel free to contact me or Sondra @ sondra.palchinsky@gmail.com

Charlie's Angels!

Happy Thanksgiving everyone! We hope you had an awesome holiday with your loved ones!

Jackson rocking the "Turkey Head Band" - courtesy of Aunt Sally!

Any guesses on who didn't want their picture taken?!

We had a wonderful Thanksgiving...we have so much to be thankful for this year! It was so nice to spend time with family and to have my brother, sister in law and her mom in town for the holiday weekend!

Charlie Claire had an evaluation with an Occupational Therapist on Wednesday morning and starting in January Miss April will be coming out once a week. She is going to be working with Charlie on a variety of things but mainly exploring toys with her mouth, self feeding and holding her own cup. We are super excited to start working with April and just feel so blessed that Charlie has so many resources available to her.

Jackson cast update: When the Dr told Jackson he had to wear the cast for 5 weeks Jackson apparently took that as a challenge and decided to take it off in less then 2 weeks! Lucky us...we get to go back to the orthopedic on tomorrow morning to have the cast reapplied.

We are officially in surgery countdown mode which means we are on lockdown. Charlie Claire can not be sick going into surgery so we have become OCD about hand sanitizer, clorox wipes and we will be staying home until we leave for Richmond next week. We love you but if you even could potentially be sick...please stay away! :)

Last but certainly not least, we would like to thank all of Charlie's "Angels" who have been so amazingly supportive of C and our family. Thank you to everyone who has donated online, came out for the 5k, bought Scentsy products, participated in the 50/50 raffle, etc. We are so appreciative of every one's gestures and we are beyond thankful.

"Blessed are those that can give without remembering and receive without forgetting"

5K!

Today was amazing!

We have always known that our family and friends have been on Team Charlie Claire but it was a totally different ballgame to see complete strangers join in!

Thank you so much for every one who came out to the 5k today to support Charlie Claire and our family! We will never be able to put into words how unbelievably grateful we are for peoples generosity. Thank you!

Thank you so very much to Nora, Nicole, Lacey and Elizabeth for all of your help organizing and promoting the event!

My sweet J Monster!

Grandma and Mimi working the registration table

Thanks for your time and effort ladies!

Family photo op!

Run Lacey, Run!

Go Elizabeth!

Relaxing!

CC making new friends!

Jackson is one cool dude!

My cousins Mike and Tyler!

Group shot for the people that stuck around!



Laundry List...

1 - Team Charlie Claire shirts are in! If you ordered one and haven't sent your $$ yet, please do so! We are hoping to get them out in the mail this week!

2 - We had the Epilepsy Walk on Sunday and with Jackson breaking his leg on Monday we didn't really post anything about it. The event itself left a lot to be desired (which made me want to get more involved next year because I think it's important to spread epilepsy awareness) but it was so awesome for our family and friends to be out there showing their support for Charlie Claire. We are beyond blessed to have such an amazing support system! It was super nice for my cousins, Nicole and Caitlin (who happen to be Jackson and Charlie Claire's God Mothers) to come out on Sunday and bring some of their Alpha Xi Delta sisters with them.  Thanks so much for the support ladies!

3 - Speaking of the broken leg...Jackson is just not a happy camper and we can't really blame him.  He is finally starting to move around a bit more but I think he is feeling a tad sorry for himself these days. While he is still living up to his Monster nickname he is just a more stationary version of the one we are used to!

4 - Charlie Claire has been doing SO many new things the past couple weeks! It is such an amazing feeling to see her being so animated and social as well as checking things off her goals for PT! While we are torn about the upcoming surgery because we don't want to put a stop to the ball that is rolling right now. We just keep reminding ourselves that this is a marathon not a sprint and need to think long term.  We know that C is a trooper and no matter what she has been through she always bounces back!

5 - This Sunday is the 5k Fundraiser for CC.  Our friend has put A LOT of work into making this event come together and we are really looking forward to being out there on Sunday! Hope to see you there!

Uh oh

Our sweet boy had a little fall this morning which landed us in the peds office which landed us at CHKD and Jackson in a cast for 5 WEEKS :( We don't have a happy monster on our hands.

Please keep our little guy in your prayers.

Halloween!

After a few photo requests for Halloween pics it dawned on us that with all the hospital hoopla we forgot to post pics of our little monsters!!!

Better late than never, right?

Fundraisers for Charlie Claire!

We are very excited and extremely grateful for the support we have received for Charlie Claire's upcoming surgery. Two amazing fundraisers have been planned for Miss Charlie Claire...

November 20 5k run/walk:

(If you are having trouble viewing the 5K flier, right click on the image to download or left click to view in a larger format.)

November 27th: Scentsy Open House Style Party 
1-4pm – Toni & Charlie Cortellini’s House

Jason's sister, Nicole, is a Scentsy sales rep and has been generous enough to contribute 100% of all proceeds on orders placed between now and November 28th to the Charlie Claire North fund.  If you are unable to make this event, you will be able to place an order anytime online at Scentsy (please click on the Charlie Claire link). If you need to contact Nicole her phone number is 757.254.4003.

Please let us know if you have any questions regarding either fundraiser, and feel free to pass along the information to anyone you think may be interested.     
We have said numerous times how amazingly blessed we have been by the outpouring of love and support we have received from so many people and we can't thank you enough for continuing to be on Team Charlie Claire!

TShirt Time - take 2

Remember these bad boys?

Modeling courtesy of Uncle Jason, Aunt Jen and "Uncle" Rob!

Well in case you missed them the first time around or feel like you would like another one we are placing another TEAM CHARLIE CLAIRE tshirt order!

It was such an AMAZING and OVERWHELMING feeling to get all the pictures of people wearing their Team CC shirts the day of Charlie's last surgery. We are hoping and praying for the same support on December 7.

We are adding a long sleeve tshirt to the mix this time! The price is still $10 for an adult shirt (unisex sizing) and $5 for the little kids shirts. 

If you are interested in placing an order please email (kcnorth13@gmail.com), text, call, etc. your order to me by Friday 11.11.11. Please specify long/short sleeve and the size.

Thank you ALL for being on TEAM CHARLIE CLAIRE and being with us every step of the way!

“Nothing is impossible, the word itself says ‘I’m possible’!”—Audrey Hepburn

Epilepsy Awareness!

I had planned to do this post a few days ago but Charlie Claire had other plans!

November is Epilepsy Awareness month and since there are a decent number of people who read this blog we felt it was important to spread some epilepsy awareness. 

On Sunday, November 13 the Epilepsy Foundation of Virginia  is hosting an awareness walk in Virginia Beach. Our family will be attending to show support for Charlie Claire as well anyone else who lives with epilepsy.  Feel free to throw on your TEAM CC shirt and meet us at Mount Trashmore at 2:00 on Sunday!

If you would like any additional information on seizures or epilepsy feel free to check out this website Epilepsy Foundation.

 

Quicky...

This is going to be quick because this girl needs to get to bed but just a little update and a heads up on things to come in the next couple of days...

1 - Charlie Claire is one tough cookie! She bounced back SUPER quick once we got home.  Mama needed to see that after a rough 4 days.
2 - TEAM CHARLIE CLAIRE tshirts! We will be placing another order soon so if you need any shirts please email (kcnorth13@gmail.com) /call/text SOON! Shirts are $10 for adult sizes and $7 for kiddos!
3 - We mentioned before that November is National Epilepsy Awareness month and we still have some things to share on this!

 

Done!

Charlie Claire was discharged from VCU a little bit ago!! This was by far one of the more draining hospital experiences...every time a nurse or doctor came anywhere near her she freaked out.

Surgery is scheduled for Dec 7 to remove the little piece of her occipital lobe that did not make it out during her first surgery.

We are heading home and need a couple days of R&R.

Thanks for coming along on this journey with us...your support has been amazing!

No more leads! Please excuse the scratch marks all over me from a cute blonde little girl!

Monster not a fan of being locked up in C's hospital bed!

Night cap...

I am not going to lie...today was a LONG day. Clearly Charlie Claire and Ativan are not friends.

Started with the 35 minute image session earlier today that Charlie should have slept through but instead stayed awake. This meant she had to have her head and body restrained while I practically laid on top of her for 35 minutes singing to try and keep her as still and calm as possible.

This afternoon it became more and more obvious that a) Charlie Claire is just over the hospital. If you have a white coat on C is not a fan of you...can you blame her? b) the ativan was having the opposite affect on Charlie. She was MOODY and IRRITABLE, two things that do not typically describe our sweet girl. She was super clingy tonight and spent most of the evening on my lap or my moms and then came bedtime. FAIL. It was a miracle that our sweet, overtired girl finally went to sleep. Mama could go for a HUGE glass of wine right about now.

We got some prelim results from test...
Bad news, since there was some movement during the test the images weren't the best. But they were decent enough to analyze so they will not be repeating the test tomorrow. Good news, there are no new areas in question!!! The seizures are still starting in the same area and there were no surprises! We like that! The neuro and surgeon still need to review the images in the AM to make sure everyone is seeing the same thing and then we should meet with the team to discuss. We are still waiting on lamictal level results.

Thank you all so much for the love and support! The text messages, emails, phone calls, etc make our day! We appreciate all of them! Thank you, thank you, thank you!

Update

C fell asleep for nap time great! Woke up and like clockwork had one really good seizure. They injected dye and then gave Charlie Claire Ativan (sleep medicine), an adult dose to sedate her for images. She NEVER fell asleep so the images may not turn out because she moved around a little bit during the 35 min testing.

Waiting for Dr M and Dr Tye to review images to see if they are able to read them or if we need to do dye test again and this time put her under general anesthesia.

Dye test

Nuclear medicine is here so we are trying to get Charlie Claire to nap so she'll wake up and have seizure. She has already had 6 this morning but now we need her to have one so they can inject the dye. She needs to have one by 11:15 or else the dye expires and we will have to wait till tomorrow. Charlie Claire please have a seizure! After they inject dye they will give her medicine to make her sleepy and take her to get images.

We will keep you posted!

Update

After a rough night of sleep all around C had some seizures this morning and she had one of the new ones that we were trying to get info on.

The good news...they are not spasms!!! Thank you Jesus! Other good news, they seem to be coming from the same general area. The rest of Charlie Claire's EEG looked great and they were super pleased with what they are seeing.

Bad news...in order to try and pinpoint exactly where seizures are coming from they are doing a dye test tomorrow morning. This means an IV (code for screaming baby), withholding some meds and waking C up at about 5am. The lack of meds and sleep should hopefully guarantee a seizure. Once the seizure starts they wait about 8-15 seconds and then inject the dye. We are also waiting to get C's lamictal level back from the blood they took yesterday. Depending on what the dye test shows and what the lamictal level is will determine if/when we start discussing surgery.

In other exciting news...Jackson is FINALLY getting his FIRST tooth!!!!

Aside from the screaming that came from Charlie Claire while getting her leads on and blood drawn today has been uneventful. These hospital stays get a tad more difficult as C gets older and there is not much for her to do. Charlie has only had 1 seizure...one of her eye ones, not one of the new ones. We are praying she has some so that the dr's can get the info they need.

Jackson is having an awesome day with Aunt Theresa and Uncle Harry. It is so strange not having him around but I know he is having much more fun then he would be having here! That said him and daddy are joining us tomorrow!

We will keep you posted as we know more!

Here we go

Charlie Claire is all hooked up and ready to go. Screamed her little sweet head off during the entire EEG application but she bounced back quick!