2011 (in pictures!)



Can't believe how much our wild J Monster has grown in 2011!



BFFs! These two are so obsessed with each other, hope that is always the case!

Miss Charlie Cakes has most certainly been through more in 2011 than most people have in their entire lives. Praying that 2012 goes easier on our sweet girl.

Wishing you all a happy and healthy new year!

Christmas Fun!

We had an awesome Christmas! It was so fun to watch Jackson and Charlie Claire this year.  While neither one were interested in actually unwrapping the presents they both loved playing with the paper and any and all boxes!

We had a wonderful time celebrating with our families and are looking forward to what 2012 has in store for us!

Sweet Charlie Claire!

These two were obsessed with Christmas lights!

Enjoying homemade, fresh out of the oven chocolate chip cookies!

Christmas Eve night gown

Monster Mash ready for bed on Christmas Eve

C Bear was a good girl this year!

Checking out the new toys!

Christmas apparently took a lot of Jax and CC - both ended up with wicked colds :( And Charlie Claire is getting some more teeth, it's been a rough few days at our house. 

Charlie Claire had a session with Miss Nina and Miss Wendy this morning.  Nina is working on some neat things with Charlie Claire like turning the pages of a book! The session with Wendy was less then stellar due to C's awesome mood. We are working a lot on standing which isn't her most favorite thing to do right now but she will get there!

Wishing everyone a happy and healthy new year!!! xoxo!

Merry Christmas!

Thank you all for being a part of this journey with us and for the endless amount of love and support you have given our family! We are extremely grateful for all of you!

Merry Christmas from our family to yours!

xo,
The Norths!

Post Op Appointment

I am going to start by being honest and saying that seeing the seizures after Charlie Claire's surgery had me spiraling down into a deep black hole. I was feeling quite defeated and wondering what we had just done to our sweet baby. Jason on the other hand is much better at remaining positive and while he wasn't feeling good about the seizures he was not on the path I was on.  We both were anxious about C's post op appointment and had a lot of questions. I was nervous that having this appointment right before Christmas wasn't the best idea but at the same time I didn't want to wait until after Christmas to have our questions answered.

Turns out yesterday's appointment was just what I needed. It's very easy for me to get wrapped up in the negative instead of looking at all the positive things we have to be thankful and grateful for. Dr. Tye and Dr. Morton did a great job of putting things into perspective for me yesterday.

First we met with Dr. Tye and his nurse, Joann. As far as healing from surgery Charlie Claire looks AMAZING! It's actually hard to believe she is only 2 weeks post op. If an adult had the surgery that C just had we would probably still be in the hospital. Dr. Tye is just the nicest man ever and when we asked him about the possibility of needing to remove C's sensory/motor area he flat out said that he needs to be able to live with himself and doing that to Charlie based on her current situation is not justifiable. If those areas were to be removed she would most definitely have a permanent disability on the right side of her body and at this point in time the cure for her seizures would be worse than the seizures she is having.

After seeing Dr. Tye and his nurse we headed over to meet with Dr. Morton. Dr. M was honest and said that since C is only 2 weeks post op that it is to soon to tell if the seizures will fizzle out or if they are here to stay. Our main concern is what the seizures are doing to the rest of her brain. Thankfully, the seizures are NOT doing anything to impact the rest of her brain which is why when she is having them she is still totally "with it." She continues to play, eat, respond to you, etc. Dr. M said that he would like us to give this some time - at least a year to see what happens with these episodes. Since they are not having any type of negative affect on C we are comfortable with this. If after some time we are still dealing with seizures there are other options we can try before resecting any more brain tissue. We won't go into all the details but while these options would still require a surgery it would not cause C to have a deficit which would happen if we removed her sensory/motor strip area.

We spent a lot of time with Dr. M and he did answer all of our questions. Overall, the conversation with Dr. M was super encouraging and he is very pleased with how well Charlie is developing and hitting her milestones!

That brings me back to focusing on positive things. I have spent A LOT of time focusing on seizures and things that come along with the seizures. It's time for me to move those thoughts to the back burner and to start celebrating the wonderful things we have. We are blessed that Charlie Claire's first surgery was successful in stopping her infantile spasms! If she were still having those spasms she most certainly would not be where she is today developmentally. We are grateful that Charlie Claire was able to be helped and because of that she is a happy little girl who is thriving, learning, developing, etc. and we have every reason to believe that she will continue down that path.

DREAM TEAM

Charlie Claire had her annual assessment with her early intervention team today. Words can not describe how much we LOVE C's team, we are so blessed that she gets to work with these awesome ladies! We totally have the early intervention dream team!

Since we already met with the OT not to long ago and wrote out goals for that today we just did PT and educational goals. We will be continuing to work on getting Charlie to crawl, stand and walk as well as working on getting her more aware of the right side of her body.

Charlie Claire has started following directions...ex: give Jackson a kiss, where is grandma, etc. So we are going to build on that and work on other "commands." We will also be working on speech, we knew C's speech would be delayed because of the area of her brain removed but now we will be working on development in that area and incorporated it into her goals.

Overall, the meeting went really well and positive. We are super excited to start working on Charlie's new goals and to start working with the OT!

We are headed to Richmond tomorrow for C's post op appointment with the surgeon and the neuro...stay tuned for an update on that.

Charlie Claire Kisses!

The Charlie Claire Kisses Fundraiser is still going on!

Looking for a great gift this holiday season? Want to support a great cause? Check out Charlie Claire Kisses!! In three colors, you can light up those lips all in support of one bright little girl!!

For information on ordering contact Sondra @ charlieclairekisses@gmail.com

Santa!

I am having a hard time getting into the Christmas spirit which is totally unlike me but in hopes of getting in the Christmas frame of mind we took the littles to see Santa! Sort of unexpected, hence the non-holiday outfits!

They look super thrilled don't they?

6 days post op...

It's been a L.O.N.G. few days.

We are back home and that has been super nice. We really missed Jackson.

Helping Uncle Harry put Christmas lights up!

Reunited!

 Recovery is going well so far.  Charlie Claire is NOT sleeping well during the day or at night. We finally started her on some liquid melatonin today to see if that will help get her back into a normal sleeping routine. It most definitely feels like we are back in the newborn baby days.

Wendy came this morning. I know we have said this a MILLION times but we LOVE Wendy. We LOVE C's entire Early Intervention team. Wendy is one of the reasons I have stayed semi-sane the past year. Anyway, I digress...we are grateful that Charlie has not lost any skills and aside from being super clingy and cranky on and off she is doing really well considering she isn't even a week out of surgery. Her head is pretty swollen but not as bad as last time. A new thing this time around though is that she notices her incision so she is CONSTANTLY trying to rub it.

We were finally able to talk to C's neuro today. In the hospital we only saw him immediately after surgery, after that we saw the on call neuros. We are a little bit discouraged by the seizure activity we have seen since the surgery.  We understand that it is common after the brain has had trauma and all the swelling that is going on inside C's little head BUT when you put all your hope and faith into something and put your little girl through ANOTHER brain surgery you expect BIG results...not seizures. Dr. M is not discouraged by what we are seeing and is hoping that once Charlie Claire's sleep gets better regulated and her lamictal level gets a bit higher that things will calm down.  The seizure activity is less than it was before but still more than we were hoping for. So tomorrow morning we will be upping C's lamictal dose and then we will be meeting with Dr. Tye (surgeon) and Dr. M for the post op appointment next Thursday.

Please keep Charlie Claire in your prayers...our goal is still to have our sweet baby girl be seizure free.

Hebrews 11:1

Now faith is being sure of what we hope for and certain of what we do not see.

Home sweet hotel!

Charlie Claire got discharged today!

We are going to be sticking around in Richmond for a couple days before heading back to Va Beach. I am very much looking forward to sleeping in a bed tonight and not having someone come in every 3 hours to check vitals.

C is rocking her "I can't believe you did that to me" pout face but is super glad to be out of the hospital!

Rough

Rough day for the mama bear...and grandma for that matter. C went back and forth between being content and happy to miserable and uncomfortable. The afternoon went downhill when we found out her fever went back up at 101.5. They made C get a blood and urine culture. While we are thankful they are on top of things it's not easy seeing your baby cry and reach for you and not being able to do anything to make it better.

Charlie Claire continued to have some seizures again today. They are shorter in duration then they were before surgery. The neuro team is still not concerned since its still only 48 hours post op. I would be lying if I said I wasn't sick to my stomach about it. While I have faith that as she heals the seizures will subside its hard to think about everything Charlie just went through and potentially not got the outcome we were looking for.

Thank you for the continued love, support and prayers.

Friday

Morning!

Charlie had a decent night. C spiked a 102.6 fever last night which is normal post op. It seems to be gone now. She is just taking Tylenol now and that seems to be controlling her pain and helping the fever. She seems to be in better spirits today but is a tad restless. C has been awake more this morning and even gave mickey kisses!

Hello bruising and swelling

We haven't missed you...

J Monster

Hi mommy...I'm having the best time at Aunt T's house! Give Charlie kisses for me! xoxo, Jackson

Step down

Charlie Claire is getting moved to the step down unit shortly. They will keep her there until she is awake more, her pain is controlled by tylenol and she is eating solids. So far she has only taken liquids out of a cup.

Just saw surgeon and he said she looks great and is doing fantastic! Her little face and eyes are starting to get more swollen which is totally normal, usually day 2&3 are the worst.

Snuggles!

Snuggling with my girl now that her art line and catheter are out!

CT scan looked good. There is some air which is to be expected but can cause discomfort.

C has had one seizure today but we talked to neuro and they said that seizures in the first 24-72 hours are common and expected and her having some now doesn't mean anything about the long term surgery results.

We are remaining hopeful that as Charlie's brain rests and recovers the seizures will subside.

Morning after

Good morning from the PICU.

C had a decent night. Still getting morphine pretty regularly. She has a CT scan scheduled for today, waiting to hear when that will be.

We did see a few seizures after surgery which is not uncommon. Since getting her evening dose of meds last night we have not seen any. Hoping things continue on this path.

Thank you for being so awesome! We love hearing from you! We love knowing how much support our sweet girl is getting! xoxo

Resting

Charlie Claire was mad as heck when she arrived in the PICU. After a dose of morphine she is resting peacefully.

J Monster was a rock star big brother today and enjoyed a day full of family at the hospital. He is currently headed back to VA Beach...I miss him already :(

Hoping for an uneventful evening.

Almost done!

Closing C up now! Removed the leftover part. No grids. Monitored her in OR with depth electrodes and all looks good!! Can't wait to see our sweet girl.

Start

Surgery started at 9:25

Surgery

Just took our sweet girl back to the OR. After they get her prepped and positioned surgery should start around 9. We will keep you posted.

December 7, 2011

"true courage is taking another small step each day toward achieving your vision" Jonathan lockwood huie

"where there is great love there are always miracles" willa cather

"to climb steep hills requires a slow pace at first" william shakespeare

"it's not the size of the dog in the fight, it's the size of the fight in the dog" mark twain

"hope is important because it can make the present moment less difficult to bear. if we believe that tomorrow will be better, we can bear a hardship today" thich nhat hanh

Off to hospital...

Super hard to see but C's shirt says "this ain't my first rodeo"

Here we go again...

This isn't our first rodeo.

We are in Richmond. Unpacked. Settled. As ready as we will ever be for tomorrow morning.

We got the call from the hospital. Charlie Claire is first up in the morning so we need to be there at 6:15 with a start time of 7:30.

Thank you all for the sweet emails, text messages, Facebook messages, etc. We are seriously feeling the love and are beyond thankful for all the prayers.

Thank you.

Less than 24 hours

Charlie Cakes is pregaming by wearing her new shirt from Nonno and Grandma. "and though she be but little, she is fierce!"

One Year...

One year ago today Charlie Claire went for a routine neurology appointment.  Jason and I were under the impression that Charlie had been seizure free since coming home from the NICU because she had not had any apnea events, which is how her seizures first presented themselves. After talking to the neurologist we went over to the CHKD main hospital for an EEG. Jackson and my mom were in the waiting room with me, Jason had already left for work. The nurse called us back and said one of the Dr's wanted to talk to me. I just knew at that moment something wasn't right. My mom and I walked into the "reading room" where the Dr was looking at C's EEG. He broke the news to us that Charlie Claire was having seizures. A LOT of them. However, she wasn't showing any clinical signs when she was having them so none of us had any clue until the EEG. They wanted to try some medication adjustments but since C wasn't showing any clinical signs the only way to know if the medication adjustments were working was to keep her hooked up to the video EEG.  In order to do this they had to admit Charlie Claire to the PICU. Cue, Mama Bear MELTDOWN.

During this few day hospital stay we learned that Charlie Cakes
- was having about 72-ish seizures a day
- that she did not respond to any of the 4 medications they tried during this stay
- she only responded to an increased dose of phenobarb but that alone did not control her seizures
- she was going to need brain surgery

We were grateful on one hand that CHKD was so proactive and we knew very early on that C was going to need to have surgery. At the same time when you hear that your 7 week old baby is going to need to have brain surgery when she is 4-6 months old to remove "bad" brain tissue in hopes of seizure freedom you sort of feel like a bus just hit you. 

Thankfully, Dr. Toor, Dr. White and the AWESOME EEG techs at CHKD took super good care of our girl and were super helpful at explaining to us what was going on and how it needed to be handled.

Ironically, Charlie Claire was discharged from the PICU on December 7, 2010...the same day one year later that she will be having her second resection surgery. We were beyond excited to bring our sweet baby girl home from the PICU that day last year and we are hopeful that December 7, 2011 will be an anniversary we will be celebrating for years to come!!

Sweet Charlie Claire Bear

Feeding time with Daddy!

Relieved after finding out we were getting discharged!

Wow, surgery is officially less than a week away.

In some ways I am finding myself less anxious then I was last time but in others ways I am MORE anxious then I was last time - I didn't know that was even possible! Hopefully next week at this time Charlie Claire will be resting comfortably and will be SEIZURE FREE!

In the meantime, lock down continues which is no fun but we gotta do it. Thankfully we are able to go on walks and get miss Charlie Cakes (and ourselves!) some nice fresh air!