Weekend!

The Team Charlie Claire shirts are in and they look AWESOME!! My mother in law and I went through the shirts last night and organized the orders - thank you MIL! If you are in town and want to stop by to pick up your shirt please just let me know.  Again, checks can be made payable to Toni & Charlie Cortellini (if you need the mailing address just email me kcnorth13@gmail.com) Once we have received your payment we will put the shirts in the mail!

We had a wonderful weekend with our family for Jackson and Charlie Claire's baptism.  We kind of pulled the baptism together kind of quickly and didn't have much notice to give our out of town family. My grandmother, brother (Charlie Claire's God Father), Aunt Sally and Jason's cousin (Jackson's God Father) were able to make the trip...thank you all for traveling on such short notice!  We had such a nice time spending time with our family and Father Jim had such a lovely ceremony for the twins. Here are a few pictures from the weekend...

We really want to thank our wonderful family for making yesterday so beautiful!!

There probably won't be too much medical business to report the next few weeks.  We are pretty much in a holding pattern until March 30th.  Right now, C has good days and bad days.  Thursday she hardly had any clinical seizures or spasms and then on Friday it seemed as though she was making up for all the ones she didn't have the day before and had a TON :( We feel so helpless watching her have these episodes because there is absolutely nothing we can do at this point to stop them. At the appt the other day the neuro didn't seem to want to increase her level of phenobarb so we really think that this is just going to be our "normal" for the next month.  Our little girl seems to have her days and nights mixed up a little bit - this isn't uncommon for her when she gets new meds or we take her off a med - it's just very hard to get her on a schedule because of her medications but usually it works itself out within a few days.

We were looking through some pictures last night and thought everyone would get a kick out this  Here is a picture of Charlie Claire the day before she started steroids...

While her cheeks have certainly been coming down they are still way bigger than this...as I am sure you can see in the pics from yesterday!

The Good, The Bad, The Ugly...

This is a long one...consider this your warning and brace yourself!

The Good:
This should really be called the GREAT! First, Charlie Claire had an EEG this morning and the neuro was SUPER pleased with the results.  The front left side of her brain and the right side looked PERFECT as far as seizure activity is concerned! He said this is a huge positive for C's long term prognosis.  All of her seizure activity has remained in the malformed area of her brain which is really a good thing.  Another thing her EEG showed that was good was sleep spindles...I am not 100% sure what these are (I will be googling later!) but apparently you develop them around 3-4 months of age and a lot of babies with infantile spasms fail to develop these.  Charlie Claire has developed them and they look good! :) Lastly, the hypsarrhythmia pattern that is associated with infantile spasms and what is so damaging to the brain did not show up during her EEG.  Granted she slept the entire time and didn't have a cluster of spasms but the neuro said that it is a good thing she isn't having them in her sleep and since the Sabril has really helped decrease the # of spasms that the hypsarrhythmia that she does have during the spasm is minor at this point.

The Bad:
Nothing we really didn't know but there are still A LOT of activity happening in the "bad" area of Charlie Claire's brain.  She is currently on 3 anti-seizure meds and even with that things are still pretty active. 

The Ugly:
Charlie's surgery is officially scheduled...March 30th.  While part of that is good news there is also A LOT of ugly.  We met with the surgeon today and he is SUPER DUPER AWESOME! He is actually from VA Beach and went to the same high school as I did! He had the pleasure today of discussing ALL of the risks involved with the surgery.  We know this is part of his job and he has to go over EVERYTHING with us but wow that was a tough pill to swallow.  The main risk is blood loss.  Apparently, you are only able to lose about 20% of your blood during surgery...this isn't a bad deal for an adult who has a lot more blood.  This is a big deal for a baby though who doesn't have a lot of blood to begin with.  C and I have the same blood type so I will be donating blood for them to use for her during the surgery.  We were informed that since C will be receiving my blood during the surgery that down the line if she ever needed an organ transplant that I would no longer be eligible to be a donor for her.  If during the surgery she was losing too much blood or couldn't keep her blood pressure up they would stop the surgery and let her recover for a week and then go back in and continue.  We are praying that this won't be the case and that they are able to do what they need to do during the first surgery. 

Surgery Details:
March 30th here we come.  The surgery should be around 7am and will be somewhere in the ballpark of 4 hours long.  We were warned today that Charlie Claire's incision is going to be pretty large.  They need access to two areas of her brain and in order to do this she will be having a "barn door" incision.  It will basically go down the middle of her scalp and then another incision will be made to form a "T."  At this time they are not sure about one thing - the grid.  The grid is like an EEG that is placed directly on Charlie's brain.  Right now they will go in and remove what they think needs to be removed based on CC's MRI and by the way her brain feels.  The malformed part will feel different then the "good" parts of her brain.  Once they remove that they will place the grid and close C up.  Once this is done Charlie will go into the Epilepsy Monitoring Unit where she will be monitored to see if there is still seizure activity going on.  If there is then the surgeon will know exactly how much more brain he needs to remove, if there is no more activity then they simply go in and remove the grid.  The down side of that is no matter what she would need two surgeries but at least we would know that they took out all of the damaged area. The surgeon said they will place the grid if they need to stop and continue the surgery at another time or if he has any question that there may be more damaged area that he can't "feel." As he put it "he can always take more away, he can't put anything back" so if he has any question he will use the grid but we will not know the decision until surgery day.  There are a lot of veins and arteries in the areas in which they will be working so this is a very MAJOR surgery (he couldn't stress that enough today)...they will need to work quickly and yet efficiently.  Obviously, there is risk of stroke and some other things that could have life long implications but if we do not have the surgery we will basically be ruining the rest of Charlie Claire's life.  As my friend Julie put it today, "we must have faith the reward will be great." Couldn't have said it better myself. 

I am sure there is something I am leaving out here...we got A TON of information today and our heads are always spinning when we leave. When we catch our breath if we think of anything else we'll update later.

THANK YOU THANK YOU THANK YOU for all the prayers, emails, texts, etc.  I have said it before but we are blessed with AMAZING family and friends! Thank you all - we love you so much!

EEG time!

This EEG business is old news for Charlie Claire! Sleeping right through it!

Weekend Update!

We certainly had a busy weekend!

Jackson woke up Saturday morning with pink eye so we made our way to the dr and got that boy some medicine and are hoping that Jason, C and I are in the clear.  I get sick at the thought of anything that has to do with eyes - I can't even watch people put eye drops in but I had to get over this and give Jackson his drops.  I may have dry heaved the first couple of times and my mom did it for me but eventually I managed! On Sunday morning Jackson, feeling much better, was enjoying some tummy time and he ROLLED over for the first time!!! YAY Jackson!!! This is the picture I took right before he did it!

Since stopping the steroids on Friday Charlie Claire has been a whole new girl!!! Thank you Jesus for bringing back our sweet baby girl!!! She has been such a pleasure to be around that we have ALMOST forgotten how MISERABLE  the last 4 weeks have been! Her sleep schedule has been completely messed up since the steroids came into our life and none of us have gotten much sleep -- last night however, Charlie Claire slept from 10pm - 7am!!!! Even though I was up every hour checking to  make sure she was still breathing it was nice to get some sleep in between!!! This is picture of CC in her outfit from her fairy God Mother!

Yesterday, Jason and I got to go on a little date to the ODU basketball game! It was an awesome game and it was so nice to spend some one on one time together - thank you Grammy TC and Nonno!  When we got home my rockstar husband hung up these awesome pictures we ordered from our fantastic photographer, Jessica Smith!

Now, moving on to this week! We are heading up to Richmond in a little while.  Just a side note: packing for twins is NO JOKE...and it's only for ONE night. My mom, Jackson, Charlie Claire and I are heading up there today and Jason is meeting us there tomorrow morning.  This is Jackson's first road trip - I am a little worried about my little man because he is such a creature of habit and LOVES his crib!  Hopefully he falls into hotel life just like Charlie Claire did! While up there we are going to look at a couple furnished corporate apartments and decide which one we like, we will rent one since we are going to be up there for at least 2 weeks for surgery and really want to keep things as normal for Jackson as possible...we thought this would be better than staying at a hotel.

We are really looking forward to the appointment tomorrow, hopefully we have more information regarding C's surgery and can start planning for that - we will update you when we get back!!

Update!

Let's start with Charlie Claire's physical therapy yesterday:
Wendy the physical therapist is awesome, we love her.  She always make me feel so much better about things.  Considering the last 3-ish weeks have been crappy since C's roid rage was in full effect she thought C was doing great.  She is doing awesome on her tummy time and is so close to rolling over.  When we "help" her she rolls over great on both sides and Wendy said she holds her head in perfect position which means she knows where she is in space.  She isn't super interested in holding her toys but she really likes her hands these days. Charlie is holding them together all the time and constantly putting them in her mouth which Wendy thought was all good stuff.  We recently got Charlie a toy that David, Evan's dad, told us about. Evan is a little boy on the west coast whose story is very similar to C's, he had a hemispherectomy (surgery where they removed the entire left half of Evan's brain) in November and is currently seizure free and doing awesome these days -- feel free to check out his website  http://www.evanstauff.com/  David has been super helpful to us the past couple months. Ok, back to the toy! Charlie doesn't seem to like holding her toys right now but she likes having her hands on this new toy because it vibrates!  Wendy said she thinks that Charlie probably likes the "deeper" stimulation that the vibration produces.  She started to get a little fussy during her session so Wendy took that toy and put it on her belly, legs, feet and it totally calmed her down!  All in all, Wendy thought that C is doing a really great job and hopefully now that the steroids are coming to an end we will have a more productive two weeks until we see Wendy again!

Seizure activity:
Nothing new to report here, it seems to us that the things haven't really improved anymore since the increased dose of Sabril.  We have an EEG scheduled for Tuesday morning at MCV before we meet with the neuro surgeon and neurologist. That will clearly tell us what exactly is going on and if C should stay on the Sabril or if it is time for her to start tapering off of that. We should know more after this appointment in regards to the date of Charlie's surgery.

4 month check ups:
We switched pediatricians so this was our first visit with the new dr and she was GREAT! She was super supportive of what we are going through with Charlie Claire and really took her time to meet with us and check out both babies.  Jackson, the scrawny little chicken I gave birth to, is now 17.4lbs and 25.5in!! Charlie Claire and her cheeks (I know her cheeks will come down but it sure does look like someone pumped her full of air!) are coming in at 15.5lbs and 24in.  They are both allowed to start rice cereal now and we double checked with C's neuro and he was totally fine with that too!

TSHIRT TIME!

The tshirt order has officially been placed! The cost for the adult size shirts is $10 each.  We weren't able to get "bulk" pricing on the kids shirts so they are also $10 each.  There were also a couple "little" tshirts and onesies, those are $7 each.  If you have any questions on how much you owe please feel free to contact me! The shirts should be in by March 1-ish.  If you could please email me (kcnorth13@gmail.com) the address where you would like to have your shirts shipped if you are out of town that would be great.  When you send me that address I will respond with the payment info.  The checks should be made out to Toni & Charlie Cortellini.  If you are in town and still need your shirt mailed, please just let me know.  As soon as we have them in our hands we will let everyone know!

Here is a look at the design! This was totally Jason's idea and our friend Rachel created it for us!

Happy Valentine's Day!

It seems as though things have plateaued with the Sabril.  Since increasing the evening dose to 10mL on Friday we haven't noticed any difference in Charlie Claire's seizure activity.  We spoke to the neurologist this morning and we will be increasing her morning dose to 10mL as well.  I can't say we are thrilled that we are increasing the dose of Sabril yet again but I don't think either one of us had high hopes for this medication. I know it sounds strange to say we are looking forward to surgery but honestly that really seems to be the only thing that is going to help at this point.

At the same time we are increasing the Sabril we have been weaning the steroid! This is CC's last week on steroids! THANK GOODNESS! Mama can't take much more of the roid rage or the sleepless nights.

Since C's mood has been getting better little by little we have gotten in some more playtime and a few physical therapy sessions.  We also have been working on Charlie Claire's infant massage and she LOVES it! Can you blame her?! It also seems as though we are all finally starting to get over our colds so hopefully we will be coming off house arrest soon!

C's physical therapist is coming on Wednesday and we are interested in hearing what she has to say considering the past 3-4 weeks we haven't gotten much done. I will say though that when we do get our sessions in Charlie Claire does an AWESOME job but those sessions are few and far between.

Here is a little Valentine's Day love from Miss C!

4 Months!

Happy 4 month birthday Jackson and Charlie Claire! I can't believe it's already been 4 months! And what a 4 months it has been!

I spoke to soon the other day...shocking, I know! Charlie Claire is most definitely still having spasms.  They are not as intense or severe, they are much more subtle now and sometimes it will only happen once (instead of 30-40) but the bottom line is that they are still happening.  Therefore, we will be increasing her evening dose of the Sabril to 10mL and see what happens with that change.  Our dr reminded us that this is a marathon, not a sprint and to just keep going day to day right now. 

I also spoke to soon when I said C was eating every 4 hours...I meant 3! This girl is eating us out of house and home! So much so that we are now giving her pedialyte in place of a couple of her feedings so she is getting the volume without getting the extra calories.  If C is supposed to eat at midnight you better believe her eyes are popping open at 11:45 to make sure you are ready for her.  The steroids are also still causing the restlessness so while she is sleeping a lot during the day she is awake and uncomfortable at night.  Jason and I are definitely running on empty right now.  Jackson on the other hand is sleeping from about 7:30 at night till about 7 in the morning - at least he and the dogs are well rested!

The vision specialist came today.  I think I was expecting her to be able to tell us exactly what we are dealing with in terms of Charlie Claire's vision but I don't really think we can assess that right now.  She did tell me that we can't compare CC to Jackson right now because Jackson is not on 3 different seizure medications and he is not having a bunch of seizures a day.  Since we do not know how the medications are affecting C's vision (blurred, doubled, etc.) it is hard to say what she is sees.  So, what we do right now is work with her on holding her toys and playing with toys that have lights -- basically if she shows an interest in something go with it.  However, C isn't showing interest in much these days.  The specialist told us that since she isn't very interested in toys that we should work with her on touch.  She showed us how to give C a baby massage to engaged her muscles and how to talk to her about what we are doing to involve her and interact with her.  C is really responding to touch these days as far as she really likes to be close to people (even Jackson!).  Hopefully the massaging will also be a way for us to help calm and relax her as well.

Another day in paradise!

There is never a dull moment in the North house!

BOTH babies are sick now.  We thought Jackson's cold was getting better...funny story - it's back and now Charlie Claire totally has it.  No one is running a fever -- just sneezing, coughing, etc.  The best part is now mama has a sore throat and I am pretty sure daddy is not far behind.  Ick...

As we have been continuing to wean C off the steroids her mood has been improving.  She is still far from her normal self but the 24/7 complaining has dropped to a more manageable level.  Her appetite is still through the roof and she continues to eat every 4 hours...even over night.  This = no sleep for mom and dad :( We will be so glad when these steroids are completely out of her system.  Today C went from 15mL a day to 7.5mL and then in 5 days she will go to 5mL a day before completely stopping on the 19th!

The Sabril appears to be having some success in controlling Charlie Claire's spasms.  The past couple of days she has had 5-6 episodes and today so far she has only had one.  They are a lot more subtle then they were before so I feel that we are watching her every move like a hawk to make sure we aren't missing something. The downside of the Sabril is that C is sleeping A LOT and is still a clumsy little thing.  Jason has taken to calling her Noodle these days! We called Dr. Morton today and we are going to leave C at her current dose of 6.4mL twice a day until at least Monday (we were supposed to increase it on Friday) to see if she can adjust to the sleepiness and to see if she keeps responding to this level of medication.  Just a quick update - she just had an episode as I am typing this so that makes 2 for the day.

If Charlie Claire does keep showing a good response to the meds there will be another EEG in our future to confirm if what we are seeing on the outside is the same as what is going on in her little head!

TSHIRTS: Just in case anyone is not aware, we are having tshirts made for the day of CC's surgery.  If you are interested in ordering one to wear that day to show your support please let me know (kcnorth13@gmail.com) -- we are going to be ordering the shirts by the end of the week!

Sabril Update

At this point I don't think we can exactly say what is going on with the Sabril.  Yesterday, Charlie Claire only had one episode the entire day.  This is HUGE considering she typically has 20-30 a day.  Today Charlie Claire has had 6.  They have only lasted 1-2 minutes, a change from the 3-8 minute ones we typically see. In a perfect world it would seem as though the Sabril is showing signs of working however, we know we are far from a perfect world so it is still a bit early for us to get our hopes up. 

Dr. Morton started C on 3.2mL of Sabril twice a day.  You have to mix this medication up -- I kind of feel like I am back in Chemistry class. Tomorrow we are increasing the dose to 6.4mL twice a day and then 10mL twice a day in a few more days.  We are hoping we see results on the 6.4mL and could potentially stay at that dose instead of going up to 10 but we shall see.  This medicine has to be mixed with water so we can't give it to C in her formula.  We haven't had much luck in the past giving her medication out of a syringe but this one seems to be working well but it's a smaller dose.  Not so sure how it is going to go when we increase the dose tomorrow. 

The Sabril is doing 2 things to Charlie Claire right now:
1 - making her super sleepy -- it typically takes C a couple days to get used to a new med but with this one right as she is going to get used to it we are going to increase her dose. 
2 - the Sabril apparently works like a muscle relaxer.  The dr told me the other day that it might make her clumsy. I wondered to myself how you can tell if an infant is clumsy well let me tell you what...homegirl is like GUMBY! I swear she is like a limp little noodle.  Because of this we are changing the dose of her Klonopin to twice a day instead of 3 times a day to see if this helps with that (and of course her sleepiness).

As we have been weaning her off the steroids her mood the past couple of days seems to have been a little better!!! C still gets fussy from time to time but it has been a lot easier to calm her down.  She was in such a good mood yesterday we actually got some play time in! We haven't gotten in much physical therapy but hopefully as her mood improves we will start working on that.

Welcome to Holland

First, let me start by saying we are blessed with really awesome friends and family! It has been amazing the amount of love and support they have shown for us and Charlie Claire. 

It's also amazing to me that when you find yourself in a situation you never thought you would be in that you find support where you least expect it.  I have recently had the privledge of "meeting" two parents whose children are in situations similar to Charlie Claire and reconnecting with a friend from college whose little girl had to have a life saving liver transplant.  It has been extremely comforting to be able to talk to parents who understand the place Jason and I are in right now.

One of the mom's sent me this tonight and it really meant a lot to us...

WELCOME TO HOLLAND
by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

**

We started Charlie Claire on her Sabril today.  It was a very emotional moment for me and I just need to keep reminding myself why we are doing this.  It seemed to kick her butt a bit today as she slept most of the day. 

Does this look the face of a happy girl? And please check out those STEROID CHEEKS!!!!!

Jackson Update:

Just because this is Charlie's blog doesn't mean we can't tell you all about Jackson! :) He is AWESOME! Charlie Claire is so lucky to have such a great big brother!!! Jackson is very interested in his hands, toys, the tv, etc! He loves taking everything in and is just such a good little boy! He is very talkative, full of smiles and laughs and is helping keep our spirits high!



Here We Go Again

Charlie Claire's new medication arrived at our front door this morning.  This little box was able to make me cry.  Jason was at work already when the package arrived so he received the lovely phone call from me! I scored major wife points for that one! I know this is something we have to try in hopes of controlling C's seizures.  I also know that we went over ALL of risks with the dr and had to sign a bunch of forms saying we understood the risks involved with the medication but, for lack of a better word, I feel that we are giving Charlie poison.  I called MCV and asked for the neuro (Dr. Morton) to call me back because I needed a pep talk before I could go through with this.  Dr. Morton is very nice and called me back and explained everything to me again.  He truly feels that since Charlie Claire will be on this for such a short amount of time (less than 3-6 months) that her vision should be fine.  Again, we have no way of knowing at this time the long term problems she may have because of it but we also know that we have tried all the other options out there and this is the last one available to us.

We will start giving her the medication tomorrow morning.  Dr. Morton said it can cause irritability (not sure how we would be able to tell the difference from her current roid rage!), sleepiness, clumsiness, etc.  If she does start showing signs of clumsiness we may need to adjust her other medications.  We also started her weaning process today for the steroids, Dr. Morton said that hopefully we will start to see an improvement in her mood soon.  Sometimes I get very overwhelmed at the amount of medication going on in her little body. 

We are being cautiously optimistic about the Sabril.  We have gotten our hopes up in the past couple months only to realize that we haven't had any luck.  Even if the Sabril does work with controlling Charlie Claire's spasms she will still need to have surgery since she is still having other types of seizures in that one area of her brain. 

I know that Charlie Claire is only 4 months old but it is amazing how proud I am of her already! She has been such a trooper through all of the things we have been putting her through the past few months.  I think Jason and I are so optimistic about her future because we have a lot of faith in Charlie - especially her stubbornness! This is a very challenging time for our family but I know that we will rise to the occasion and rock it!

On to the next one

Apparently steroids control seizures in 70% of patients however, our sweet little girl is hanging out with the other 30%!! Isn't she a peach?!!

The EEG results weren't completely bad.  The steroids seem to have stopped the hypsarrhythmia in the right side of Charlie Claire's brain but it is still happening in the left side (if we understood the dr correctly!) So it's good that now it's only hemi hypsarrhythmia but just not good enough.  One HUGE positive is that the right side of Charlie Claire's brain (the completely healthy side) has no seizure activity! The dr's explained to us that when you have seizures they refer to you as having 2 places - the place you live and the place you go to when you have your seizures.  The place Charlie lives is completely normal which a good indication that her long term prognosis is GREAT! The other positive is that all of Charlie's seizures start from that small area of her brain that never formed properly...we hope that when they remove this area the seizures will go far far away. 

So, now we are going to start the weaning process -- not going to lie, the roid rage is draining...can't wait to have our sweet baby girl back! Charlie should be off the steroids by 2.19.  We will be starting C on Sabril shortly. This medication is extremely overwhelming to us because it comes with pretty serious side effects to Charlie's vision.  There is paper work that needs to be filled out and we have to sign off that we understand all the risks of the medication.  Charlie also needs to have an eye exam, she already had one in December so she may not need another one before we start but we really need to keep a close eye on things.  The dr said that since she won't be on this medication long term (3-6+ months) that Charlie's risks shouldn't be that high but there are no guarantees.  It just felt like a punch in the gut as we read through the initial paperwork and had to sign it.  We know that currently the benefits of the medication outweigh the risks but it's still a lot to swallow.  Again, we are hoping that this medication will keep things "calm" to buy us time till surgery.  If this one fails then the surgery may happen before CC hits 6 months.

Fun parts of our day today:
- Daddy was off from work today - we LOVE it when he is home!
- Miss Wendy, Charlie Claire's physical therapist, came over today and is really pleased that with all the seizure activity going on in C's little brain she is still really holding her own as far as development.  She explained it to me like this - do you know when you are woken up in the middle of the night and you have no idea where you are or what is going on?  That is pretty much what Charlie's world is like all the time.  Comforting huh?!
- We got to go over to Aunt Theresa and Uncle Harry's house for dinner with them, Caitlin, Nicole and Kyle! Apparently the company was just too much for Jackson and C...

Charlie Claire & Aunt T

Jackson snoozing on Kyle!