We have had some questions about the EEG results...
Right now they can't really give us any results because Charlie Claire's brain is pretty "mad" from everything that happened to it yesterday.
Saturday/Sunday-ish we should have a better idea of what is going on. Once the neuro can determine if there is still seizure activity we will know if Charlie Claire has to have more area removed or if she just needs to have the grid removed. This will also determine if she is having a quick 20 min surgery on wednesday or if it will be a more complicated, intricate surgery similar to yesterday.
Still asking for lots of thoughts and prayers as we wait to get the results...
Charlie Claire has had a great day for the most part. There have been a couple hiccups but nothing super major. She woke up this afternoon and was kicking her legs and trying to suck on her hands. C was up a little bit today but was itchy so they gave her some benedryl and she has been sleeping since.
Thank you for the continued support...we love getting all your emails and texts and we do try to respond, even if it takes a little while!!!
Thursday, March 31, 2011
After Rounds Update
A lot has gone on already today and it's barely after noon!
CT scan looked great so Charlie Claire got the breathing tube removed...she is a much happier girl!
The scan showed that the grid is placed well so they started the EEG. It will be a few days before we know exactly what is going on.
There was some bleeding from the drainage tube and they removed it but had to give her a stitch, she was not a fan of the numbing shot the gave her.
Currently, C is probably getting the best sleep she has had since coming out of surgery. She really didn't like the tube down her throat.
So far her nurses and everyone at MCV have been amazing! Super helpful and taking super care of our sweet girl!
Warning: if you get queasy you may want to stop reading this blog now...here is a picture of Charlie Claire Bear's incision from a little while ago. It actually looks much better than we thought it would. The wires coming out of her head are the leads for the grid.
CT scan looked great so Charlie Claire got the breathing tube removed...she is a much happier girl!
The scan showed that the grid is placed well so they started the EEG. It will be a few days before we know exactly what is going on.
There was some bleeding from the drainage tube and they removed it but had to give her a stitch, she was not a fan of the numbing shot the gave her.
Currently, C is probably getting the best sleep she has had since coming out of surgery. She really didn't like the tube down her throat.
So far her nurses and everyone at MCV have been amazing! Super helpful and taking super care of our sweet girl!
Warning: if you get queasy you may want to stop reading this blog now...here is a picture of Charlie Claire Bear's incision from a little while ago. It actually looks much better than we thought it would. The wires coming out of her head are the leads for the grid.
Morning After
Thank you to Mimi for staying at the hospital with C...mommy and daddy got some much needed rest!!
Over night C was such a wiggle worm and kept trying to pull the tube out of her mouth that the nurse had to restrain her arms! Her heart rate has been a little high but they said that is normal for right now. She has been breathing on her own and the staff is basically trying to keep her comfortable enough to not be in pain but to keep breathing on her own but not so comfortable that she doesn't breath on her own...
She has some bleeding from her head but Dr. Tye said it's just from the drain and everything currentky looks par for the course. The neuro team should be down shortly so we can get info on when she will start getting monitored on the EEG. Saying lots of prayers that Charlie Claire is not having seizures and she won't have to have any more brain removed.
She just got back from her ct scan and hopefully if all looks well the breathing tube will come out. They will also look for placement of the grid to make sure it's where it needs to be and then the EEG should be able to start.
As far as seizure activity...it's hard to say without the EEG because her eyes have been closed so we can't see blinking or deviation. As far as the spasms, we haven't seen any!!
Just so we aren't leaving Jackson out! He is doing great! He loves all the attention he is getting from our family and friends! He loves people watching in the hotel and he went swimming in the hotel pool with Nonno!
Over night C was such a wiggle worm and kept trying to pull the tube out of her mouth that the nurse had to restrain her arms! Her heart rate has been a little high but they said that is normal for right now. She has been breathing on her own and the staff is basically trying to keep her comfortable enough to not be in pain but to keep breathing on her own but not so comfortable that she doesn't breath on her own...
She has some bleeding from her head but Dr. Tye said it's just from the drain and everything currentky looks par for the course. The neuro team should be down shortly so we can get info on when she will start getting monitored on the EEG. Saying lots of prayers that Charlie Claire is not having seizures and she won't have to have any more brain removed.
She just got back from her ct scan and hopefully if all looks well the breathing tube will come out. They will also look for placement of the grid to make sure it's where it needs to be and then the EEG should be able to start.
As far as seizure activity...it's hard to say without the EEG because her eyes have been closed so we can't see blinking or deviation. As far as the spasms, we haven't seen any!!
Just so we aren't leaving Jackson out! He is doing great! He loves all the attention he is getting from our family and friends! He loves people watching in the hotel and he went swimming in the hotel pool with Nonno!
Wednesday, March 30, 2011
Post Surgery Information
Whew...it has been a L.O.N.G. day!
We can not even discuss what a ROCK STAR Charlie Claire Bear is! She rocked out brain surgery like no other! We also need to discuss what a ROCK STAR Dr. Tye (neuro surgeon) is! He was super duper pleased with how the surgery went!
Surgery in detail:
- Dr. Tye (who we LOVE by the way!) said that the surgery went exactly how they thought as far as what they had to remove
- CC lost A LOT of blood and did need a transfusion
- They placed the grid on the front left side of her brain and all looked good. Then they checked out the back area of her brain - her motor strip and sensory strip showed some spikes on the EEG but Dr. Morton (neurologist) thought it looked like normal motor activity, not seizure activity. They felt most comfortable leaving the grid on those two areas because they didn't want to take anything out that didn't need to be removed.
- They woke Charlie Claire up in the OR and she was moving both her left and right symmetrically which is awesome
- The surgeon, neuro and anesthesiologist all LOVED that C was immediately trying to pull her breathing tube out! They said she is quiet the feisty girl...wonder who she gets that from?!! :)
Currently:
- Charlie Claire is SWOLLEN from all the blood and fluids she received during surgery but is as cute as EVER!
- She is resting comfortably in the PICU with her daddy and Mimi will be staying over night with her tonight.
- They are giving her pain meds to keep her sedative over night so she stays comfortable and gets some rest.
- All her vitals look good - her BP was a tad high so they did give her a med to bring it down but they said that was very normal
What's next:
- They dr's felt best leaving the breathing tube in over night since Charlie Claire had a "long day"
- CC will have a CT scan in the AM to make sure everything looks okay. If everything does then the breathing tube can be removed.
- Charlie Claire will stay in the PICU instead of going to Epilepsy Monitoring Unit because the MCV staff thought she was a little young to go there and felt best leaving her on the pediatric floor.
- By Friday the neurologist should make the decision on whether or not C needs to have more brain removed or if all looks good - they will start to wean some of her meds and start stimulating her to see what happens on the EEG.
- CC will be having surgery again on Wednesday (4.6) to either remove more area or just remove the grid. Dr. Tye said if they do need to remove more this will be a much easier procedure since they will have a "road map" from the grid. If all they have to do is remove the grid it will be a short procedure.
We could not have gotten through the day without our AMAZING family and friends! We had such a great support system at the hospital with us as well as support from all over the WORLD!!! We loved getting all the TEAM CC pictures, emails, texts, facebook posts, etc! CC has no idea how loved she is! We can not thank everyone enough. PLEASE keep the good thoughts, prayers, etc. coming...CC is going to have a rough/busy few days ahead!!!
We can not even discuss what a ROCK STAR Charlie Claire Bear is! She rocked out brain surgery like no other! We also need to discuss what a ROCK STAR Dr. Tye (neuro surgeon) is! He was super duper pleased with how the surgery went!
Surgery in detail:
- Dr. Tye (who we LOVE by the way!) said that the surgery went exactly how they thought as far as what they had to remove
- CC lost A LOT of blood and did need a transfusion
- They placed the grid on the front left side of her brain and all looked good. Then they checked out the back area of her brain - her motor strip and sensory strip showed some spikes on the EEG but Dr. Morton (neurologist) thought it looked like normal motor activity, not seizure activity. They felt most comfortable leaving the grid on those two areas because they didn't want to take anything out that didn't need to be removed.
- They woke Charlie Claire up in the OR and she was moving both her left and right symmetrically which is awesome
- The surgeon, neuro and anesthesiologist all LOVED that C was immediately trying to pull her breathing tube out! They said she is quiet the feisty girl...wonder who she gets that from?!! :)
Currently:
- Charlie Claire is SWOLLEN from all the blood and fluids she received during surgery but is as cute as EVER!
- She is resting comfortably in the PICU with her daddy and Mimi will be staying over night with her tonight.
- They are giving her pain meds to keep her sedative over night so she stays comfortable and gets some rest.
- All her vitals look good - her BP was a tad high so they did give her a med to bring it down but they said that was very normal
What's next:
- They dr's felt best leaving the breathing tube in over night since Charlie Claire had a "long day"
- CC will have a CT scan in the AM to make sure everything looks okay. If everything does then the breathing tube can be removed.
- Charlie Claire will stay in the PICU instead of going to Epilepsy Monitoring Unit because the MCV staff thought she was a little young to go there and felt best leaving her on the pediatric floor.
- By Friday the neurologist should make the decision on whether or not C needs to have more brain removed or if all looks good - they will start to wean some of her meds and start stimulating her to see what happens on the EEG.
- CC will be having surgery again on Wednesday (4.6) to either remove more area or just remove the grid. Dr. Tye said if they do need to remove more this will be a much easier procedure since they will have a "road map" from the grid. If all they have to do is remove the grid it will be a short procedure.
We could not have gotten through the day without our AMAZING family and friends! We had such a great support system at the hospital with us as well as support from all over the WORLD!!! We loved getting all the TEAM CC pictures, emails, texts, facebook posts, etc! CC has no idea how loved she is! We can not thank everyone enough. PLEASE keep the good thoughts, prayers, etc. coming...CC is going to have a rough/busy few days ahead!!!
Out of surgery!!!!
Our girl is out of surgery and it went amazingly well!!! They did place the grid to determine if Charlie Claire can keep her motor and sensory strip so next week she will have surgery again even if it's just to remove the grid. We saw briefly as they wheeled her into the PICU...she looked great!! waiting to go back and kiss her face!! Will update more later!! Thank you for the thoughts and prayers and please keep them coming!!!!!!! xoxoxoxo
Surgery update #1
Charlie Claire was the talk of the surgery unit this morning and she was eating it up. She went to sleep very easily and her surgery officially started at 9:19. Will update when we know more...
Thank you for all the emails, texts, phone call, etc. we appreciate every single one of them!
Thank you for all the emails, texts, phone call, etc. we appreciate every single one of them!
Tuesday, March 29, 2011
Calm Before The Storm...
Apparently Miss Charlie Claire is not aware of what is about to happen tomorrow...that is probably for the best!
I don't think it's a secret that I have an unhealthy obsession with Celine Dion and this song (If That's What It Takes) has been in my head lately and really makes think of our sweet baby girl!
You're the bravest of hearts, you're the strongest of souls
You're my light in the dark, you're the place I call home
When the storm rises up, when the shadows descend
Ev'ry beat of my heart, ev'ry day without end
I will stand like a rock, I will bend till I break
Till there's no more to give, if that's what it takes
I will risk everything, I will fight, I will bleed
I will lay down my life, if that's what you need
Ev'ry second I live, that's the promise I make
Baby, that's what I'll give, if that's what it takes
I know I have said this before but the outpouring of love and support that everyone has shown to Charlie Claire and our family has been AMAZING! We constantly sense all of the thoughts and prayers and certainly would not be where we are without you all. THANK YOU!
We will do our best to keep everyone updated tomorrow!!
I don't think it's a secret that I have an unhealthy obsession with Celine Dion and this song (If That's What It Takes) has been in my head lately and really makes think of our sweet baby girl!
You're the bravest of hearts, you're the strongest of souls
You're my light in the dark, you're the place I call home
When the storm rises up, when the shadows descend
Ev'ry beat of my heart, ev'ry day without end
I will stand like a rock, I will bend till I break
Till there's no more to give, if that's what it takes
I will risk everything, I will fight, I will bleed
I will lay down my life, if that's what you need
Ev'ry second I live, that's the promise I make
Baby, that's what I'll give, if that's what it takes
I know I have said this before but the outpouring of love and support that everyone has shown to Charlie Claire and our family has been AMAZING! We constantly sense all of the thoughts and prayers and certainly would not be where we are without you all. THANK YOU!
We will do our best to keep everyone updated tomorrow!!
Settling In
Jackson and Charlie Claire seem to be adjusting well to our new "home"...
We really appreciate all of the thoughts and prayers that everyone has been sending our way!! Thank you, thank you, thank you!!
We really appreciate all of the thoughts and prayers that everyone has been sending our way!! Thank you, thank you, thank you!!
Thursday, March 24, 2011
Yesterday I went to Richmond to do my blood donation for Charlie Claire's surgery next week. For some reason that made things very "real" to me. I think it's safe for me to say that Jason and I are officially HOT MESSES...
Something that is brightening our spirits these days are all the awesome pictures coming in of TEAM CC members!!! Thank you all so much for your love and support...you honestly have no idea how much it means to us and we wish there was a way for us to put into words how unbelievably grateful we are...
Something that is brightening our spirits these days are all the awesome pictures coming in of TEAM CC members!!! Thank you all so much for your love and support...you honestly have no idea how much it means to us and we wish there was a way for us to put into words how unbelievably grateful we are...
Monday, March 21, 2011
Phenobarb
Charlie Claire has been on phenobarb since she was 3 days old...it was the first seizure medicine they tried on her and it worked pretty quickly and very well. She left the hospital on 5mLs a day. As she has grown we have had to get blood work done a lot to check her level and make adjustments accordingly.
On Thursday night & Friday morning Charlie Claire had two 20 min long seizures. After a call to the neuros office they had us give CC a "boost" dose (5mL) of phenobarb on Friday afternoon and then increase her evening dose to 7.5mL - up from 5mL. So now she is on 5mL in the am and 7.5mL in the evening for 12.5mL total.
Saturday evening (after having a fairly decent day) CC had a seizure from 7:17pm - 8:06pm. She went from partial seizure (eye blinking, body trembling) to spasm, partial to spasm, etc. etc. I am not sure what the ER would have done but I actually thought that we were going to need to take her. After that ended she PASSED the heck OUT. We called the neuros office again this morning and they said that it can take a few days for the dose increase to kick in. I realize that we aren't the dr's here and I know that if CC had actually been hooked up to an EEG it might not have (or it could have) technically registered as an almost hour long seizure but to us and our eyes that is what is was. Thankfully, yesterday and today things have quieted down a little bit.
It is so hard to watch Charlie have seizure after seizure, day after day and just feel completely helpless. At this point the anxiety level in our house is HIGH and we are just emotionally drained. The reality of what is about to happen is officially starting to sink in. While we truly believe in our hearts that everything is going to work out it is still a very overwhelming feeling to think about what Charlie Claire is about to go through...
On Thursday night & Friday morning Charlie Claire had two 20 min long seizures. After a call to the neuros office they had us give CC a "boost" dose (5mL) of phenobarb on Friday afternoon and then increase her evening dose to 7.5mL - up from 5mL. So now she is on 5mL in the am and 7.5mL in the evening for 12.5mL total.
Saturday evening (after having a fairly decent day) CC had a seizure from 7:17pm - 8:06pm. She went from partial seizure (eye blinking, body trembling) to spasm, partial to spasm, etc. etc. I am not sure what the ER would have done but I actually thought that we were going to need to take her. After that ended she PASSED the heck OUT. We called the neuros office again this morning and they said that it can take a few days for the dose increase to kick in. I realize that we aren't the dr's here and I know that if CC had actually been hooked up to an EEG it might not have (or it could have) technically registered as an almost hour long seizure but to us and our eyes that is what is was. Thankfully, yesterday and today things have quieted down a little bit.
It is so hard to watch Charlie have seizure after seizure, day after day and just feel completely helpless. At this point the anxiety level in our house is HIGH and we are just emotionally drained. The reality of what is about to happen is officially starting to sink in. While we truly believe in our hearts that everything is going to work out it is still a very overwhelming feeling to think about what Charlie Claire is about to go through...
Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.
Proverbs 3, 5-6
Thursday, March 17, 2011
Donations Account!
In the past couple weeks we have had a ton of people inquire about donating to Charlie Claire's medical care, housing costs, etc. In order to accept donations we set up a donation account through Wachovia/Wells Fargo. The account is called "Charlie Claire North Fund" and donations can be made a few different ways:
1- go into any Wachovia/Wells Fargo and donate to the account
2 - send us a check made out to "Charlie Claire North Fund"
3 - on the blog there is a link to donate through PayPal
While we would certainly appreciate any donation all we are truly asking for is everyone's prayers, support and well wishes.
1- go into any Wachovia/Wells Fargo and donate to the account
2 - send us a check made out to "Charlie Claire North Fund"
3 - on the blog there is a link to donate through PayPal
While we would certainly appreciate any donation all we are truly asking for is everyone's prayers, support and well wishes.
Tuesday, March 15, 2011
Physical Therapy!
Today was Charlie Claire's LAST physical therapy session before surgery...crazy to think that surgery is in 2 weeks.
As we have mentioned before in previous posts, We LOVE C's physical therapist Miss Wendy! Charlie really isn't on a schedule so sometimes it is hard to plan PT because we don't always know when CC will be awake or sleeping. This morning CC decided to only take a very short nap so when Miss Wendy arrived our little girl was pretty tired. Wendy was able to get a little bit of PT in before Charlie Claire decided to pass out!
Wendy seemed super pleased with C's progress in the last two weeks. She said that not only is C holding her own but she is PROGRESSING!!! Charlie Claire is focusing on our faces when we talk to her, she is tracking a couple objects, etc. One of my concerns was C's ability to hold her head up - since starting the Sabril C has been (compared to Jackson) like a limp noodle. Wendy doesn't think she is as noodle-ish as I think she is and if I didn't have Jackson to compare her to then I probably wouldn't think about this as much as I do. C did a really great job today when Wendy had her sitting up and she did well with working on her balance while sitting. We are going to be working on that the next couple weeks along with a couple other things and then we will meet with Wendy when we get back in town to re-evaluate our goals. Charlie Claire will apparently get some PT in the hospital as well.
Another lovely thing that has been happening lately is C's personality is coming back. During the 5-ish weeks of pure steroid torture Charlie Claire cried/complained 24/7 so there were no smiles, no "talking," no laughing, etc. It was extremely difficult for us to literally watch Charlie Claire's personality disappear and it is such a blessing that it is coming back!!! She is back to interacting with us (She is a BIG daddy's girl these days!) and our families - we get smiles and laughs as well as some full on "conversations"! This really does our hearts some good!
We are so unbelievably overwhelmed with how well Charlie Claire is doing considering she is having so many seizures and on so much medication. We are super hopeful that once the seizures are under control C is just going to amaze us...even more than she does now! :)
TEAM CHARLIE CLAIRE PICS!
We have started getting some photos of people rocking their TEAM CC shirts! Keep them coming...we can't wait to sit down with CC one day and show her all these pictures! We are forever grateful for all the love and support for Charlie Claire!
As we have mentioned before in previous posts, We LOVE C's physical therapist Miss Wendy! Charlie really isn't on a schedule so sometimes it is hard to plan PT because we don't always know when CC will be awake or sleeping. This morning CC decided to only take a very short nap so when Miss Wendy arrived our little girl was pretty tired. Wendy was able to get a little bit of PT in before Charlie Claire decided to pass out!
Wendy seemed super pleased with C's progress in the last two weeks. She said that not only is C holding her own but she is PROGRESSING!!! Charlie Claire is focusing on our faces when we talk to her, she is tracking a couple objects, etc. One of my concerns was C's ability to hold her head up - since starting the Sabril C has been (compared to Jackson) like a limp noodle. Wendy doesn't think she is as noodle-ish as I think she is and if I didn't have Jackson to compare her to then I probably wouldn't think about this as much as I do. C did a really great job today when Wendy had her sitting up and she did well with working on her balance while sitting. We are going to be working on that the next couple weeks along with a couple other things and then we will meet with Wendy when we get back in town to re-evaluate our goals. Charlie Claire will apparently get some PT in the hospital as well.
Another lovely thing that has been happening lately is C's personality is coming back. During the 5-ish weeks of pure steroid torture Charlie Claire cried/complained 24/7 so there were no smiles, no "talking," no laughing, etc. It was extremely difficult for us to literally watch Charlie Claire's personality disappear and it is such a blessing that it is coming back!!! She is back to interacting with us (She is a BIG daddy's girl these days!) and our families - we get smiles and laughs as well as some full on "conversations"! This really does our hearts some good!
We are so unbelievably overwhelmed with how well Charlie Claire is doing considering she is having so many seizures and on so much medication. We are super hopeful that once the seizures are under control C is just going to amaze us...even more than she does now! :)
TEAM CHARLIE CLAIRE PICS!
We have started getting some photos of people rocking their TEAM CC shirts! Keep them coming...we can't wait to sit down with CC one day and show her all these pictures! We are forever grateful for all the love and support for Charlie Claire!
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Charlie Claire's cousin Jamison  |
Sunday, March 13, 2011
One Day Closer...
It seems as though Charlie Claire is back to having episodes every 15-20 minutes. There is the occassional lull but for the most part we are back in the area of 20-30 clusters a day. In a way this is "positive" reinforcement that surgery is a MUST! It has been extremely difficult for us to witness the increase in seizure activity after the Sabril seemed to calm things down. For some reason the partial seizures C is having are heart breaking for us to watch. In comparision to the spasms the partial seizures aren't harmful to Charlie Claire but when her whole body is trembling and her eyes are blinking a mile a minute that thought isn't really comforting. We just keep reminding ourselves that March 30 is closer than we think...
Read this quote on my friend Stephanie's page and felt it certainly applied these days...thanks S...
Read this quote on my friend Stephanie's page and felt it certainly applied these days...thanks S...
Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow"
(Mary Anne Radmacher)
Wednesday, March 9, 2011
17...
That is the number of episodes Charlie Claire had today...currently March 30 seems like a lifetime away. It seems so strange that at this point we can't WAIT for our baby to have MASSIVE brain surgery but we know in our hearts that this is what needs to be done in order for C to lead a "normal" life. The infantile spasms are so detrimental to Charlie's development that if we don't stop them they will basically destroy her.
Amazingly enough, even though the day wasn't going so well I was actually able to get Charlie Claire to follow an object tonight!! C has gotten increasingly better the past couple weeks at focusing on objects and our faces that I knew it was only a matter of time before we could get her to track something. It was such an overwhelming moment!! It is things like this that give us so much hope for after her surgery -- if she can do these things with all the seizure activity going on in her little brain imagine what will happen when that activity goes away!!
A few years ago for my bridal shower my Aunt Sally gave me a book called "May You Be Blessed." I read through the book when she first gave it to me but since then it has been sitting on my nightstand. Last night I crawled into bed and the book caught my eye. Here is a passage from the book that really made my night and helped me get my thoughts back on track...
"Life is an ongoing process, and most of us meet something at almost every turn we wish were different. But just because something is not turning out the way we want, doesn't mean it won't. And when we make up our minds that no matter what, we're going to see it as a blessing, then our minds start working overtime to prove us right. Magical things tend to happen and that which we labeled as a blessing, more often than not, turns out to be one."
And just seeing these little faces makes us believe in magical things!
Amazingly enough, even though the day wasn't going so well I was actually able to get Charlie Claire to follow an object tonight!! C has gotten increasingly better the past couple weeks at focusing on objects and our faces that I knew it was only a matter of time before we could get her to track something. It was such an overwhelming moment!! It is things like this that give us so much hope for after her surgery -- if she can do these things with all the seizure activity going on in her little brain imagine what will happen when that activity goes away!!
A few years ago for my bridal shower my Aunt Sally gave me a book called "May You Be Blessed." I read through the book when she first gave it to me but since then it has been sitting on my nightstand. Last night I crawled into bed and the book caught my eye. Here is a passage from the book that really made my night and helped me get my thoughts back on track...
"Life is an ongoing process, and most of us meet something at almost every turn we wish were different. But just because something is not turning out the way we want, doesn't mean it won't. And when we make up our minds that no matter what, we're going to see it as a blessing, then our minds start working overtime to prove us right. Magical things tend to happen and that which we labeled as a blessing, more often than not, turns out to be one."
And just seeing these little faces makes us believe in magical things!
Monday, March 7, 2011
TEAM CHARLIE CLAIRE SHIRTS!
We have been rocking and rolling over here with Team CC tshirts! We had a lot of people stop by and pick their shirts up over the weekend and if we have received your $$ then yours is most likely in the mail...there are still a couple we need to get out. If you ordered a shirt and need payment info please email me (kcnorth13@gmail.com) and if you still need to pick up your shirt shoot me an email also.
We are asking everyone to do us a BIG FAVOR (just in case the thoughts and prayers aren't enough!!) We (and when I say we I mean Nicole and Caitlin) are going to be making a scrapbook for Charlie Claire about this entire experience since she will really have no idea what actually went on. We would LOVE it if you could take a picture of yourself wearing your Team Charlie Claire shirt and send it to us (email, regular mail, facebook, etc.) so that we can show her how much LOVE and SUPPORT she was getting during this time! Here is the first picture for the scrapbook...
Seizure report: Things are pretty steady on this front...this morning C has already had 7 - it seems as though she has a lot in the morning and then not so much during the day and then it kicks in again at night. Again, this is still down from the 30-ish she was having before the Sabril. You would think that after witnessing hundreds of seizures that we would get used to it but I think it actually gets more difficult each time. I just wish we knew what she was feeling/experiencing/etc. unfortuantely (or maybe fortunately) she will never be able to tell us.
One other thing I would like to do this morning is tell you about a little girl named Netta...she is currently at NYU having the same surgery that C will be having in 3 weeks. Her surgery is going to be done in 3 parts (C's should only be 2 parts) - Netta just had the grid placed on March 3 and her next surgery is scheduled for March 10. Just asking if you could send some thoughts and prayers their way during this overwhelming time...http://annettasmithsaggese.webs.com/apps/blog/show/6317887-marathon
We are asking everyone to do us a BIG FAVOR (just in case the thoughts and prayers aren't enough!!) We (and when I say we I mean Nicole and Caitlin) are going to be making a scrapbook for Charlie Claire about this entire experience since she will really have no idea what actually went on. We would LOVE it if you could take a picture of yourself wearing your Team Charlie Claire shirt and send it to us (email, regular mail, facebook, etc.) so that we can show her how much LOVE and SUPPORT she was getting during this time! Here is the first picture for the scrapbook...
Seizure report: Things are pretty steady on this front...this morning C has already had 7 - it seems as though she has a lot in the morning and then not so much during the day and then it kicks in again at night. Again, this is still down from the 30-ish she was having before the Sabril. You would think that after witnessing hundreds of seizures that we would get used to it but I think it actually gets more difficult each time. I just wish we knew what she was feeling/experiencing/etc. unfortuantely (or maybe fortunately) she will never be able to tell us.
One other thing I would like to do this morning is tell you about a little girl named Netta...she is currently at NYU having the same surgery that C will be having in 3 weeks. Her surgery is going to be done in 3 parts (C's should only be 2 parts) - Netta just had the grid placed on March 3 and her next surgery is scheduled for March 10. Just asking if you could send some thoughts and prayers their way during this overwhelming time...http://annettasmithsaggese.webs.com/apps/blog/show/6317887-marathon
Saturday, March 5, 2011
Medicine
By far one of the most challenging parts of the day is giving Charlie Claire her medicine. It is very important the C gets her FULL dose of medicine and that she gets it at a certain time.
Currently, she only gets meds twice a day - at one point she was getting the steroid 4 times a day. We can give C her phenobarb mixed with an ounce of formula (which is super helpful) but her Sabril and Klonopin are in a syringe. The syringe is where things so downhill, CC has gotten really awesome lately at pursing her lips at us when we are trying to give her the meds. We always try and give Charlie her medication at a feeding time because we have found that when she is hungry she takes it better. Once Charlie gets her meds she has to wait 15 minutes before she can continue on with the rest of her bottle. The 15 minutes is to make sure that the medication gets absorbed into her system - if she spits up before the 15 minutes we have to re-dose her which usually creates a SUPER SLEEPY baby because all of the seizures meds have a sedative effect. She typically complains the entire 15 minutes, can you blame her? Jackson would freak out if we had to do this to him, that boy doesn't even like it when we have to stop to burp him!
Here is a picture of C's evening meds - the big syringe doesn't actually fit into her mouth very well so we break it down into a few smaller ones.
One of the big issues is timing of Charlie Claire's meds. She has to have it within 11-13 hours of her last dose. If we give her the morning dose at 7 she has to have the evening dose between 6-8 that night. Like most babies she isn't like clockwork so her eating schedule may vary from day to day and sometimes we have to wake her up to give her the meds. This is what I had to do last night :( It was so hard to disturb this sweet face...
Yesterday C's seizure activity was a little bit better than it was on Thursday but it is still happening more than we would like. This morning from 6:45-8 she has already had 5 so we really aren't starting the day out on a good foot.
On another note...we would like to send our thoughts and prayers out to Oliver and his family...he is a little boy in NC who is in a different but similar situation as Charlie Claire. He was hospitalized this weekend for something unrelated to his seizures...some complications with his asthma. Oliver is tough little guy but could certainly use some extra prayers this weekend. http://lanierlanding.blogspot.com/
Currently, she only gets meds twice a day - at one point she was getting the steroid 4 times a day. We can give C her phenobarb mixed with an ounce of formula (which is super helpful) but her Sabril and Klonopin are in a syringe. The syringe is where things so downhill, CC has gotten really awesome lately at pursing her lips at us when we are trying to give her the meds. We always try and give Charlie her medication at a feeding time because we have found that when she is hungry she takes it better. Once Charlie gets her meds she has to wait 15 minutes before she can continue on with the rest of her bottle. The 15 minutes is to make sure that the medication gets absorbed into her system - if she spits up before the 15 minutes we have to re-dose her which usually creates a SUPER SLEEPY baby because all of the seizures meds have a sedative effect. She typically complains the entire 15 minutes, can you blame her? Jackson would freak out if we had to do this to him, that boy doesn't even like it when we have to stop to burp him!
Here is a picture of C's evening meds - the big syringe doesn't actually fit into her mouth very well so we break it down into a few smaller ones.
One of the big issues is timing of Charlie Claire's meds. She has to have it within 11-13 hours of her last dose. If we give her the morning dose at 7 she has to have the evening dose between 6-8 that night. Like most babies she isn't like clockwork so her eating schedule may vary from day to day and sometimes we have to wake her up to give her the meds. This is what I had to do last night :( It was so hard to disturb this sweet face...
Yesterday C's seizure activity was a little bit better than it was on Thursday but it is still happening more than we would like. This morning from 6:45-8 she has already had 5 so we really aren't starting the day out on a good foot.
On another note...we would like to send our thoughts and prayers out to Oliver and his family...he is a little boy in NC who is in a different but similar situation as Charlie Claire. He was hospitalized this weekend for something unrelated to his seizures...some complications with his asthma. Oliver is tough little guy but could certainly use some extra prayers this weekend. http://lanierlanding.blogspot.com/
Thursday, March 3, 2011
Things have gone a little down hill the past couple of days.
In addition to Charlie's infantile spasms she has partial seizures. People live with partial seizures every day, they aren't developmentally detrimental the way the spasms are. C has sub clinical (meaning we can't see them) and clinical (we can see them) partial seizures. Lately, we have noticed more clinical partial seizures then we have in the past. When she has these her eyes blink pretty rapidly and her entire body trembles.
Wednesday morning Charlie Claire had 7 seizures in one hour and then passed the heck out...seizures take a lot out of you. We called the neuro's office and her neuro really doesn't want to add any more meds to the mix right now and would like to just stay where we are until surgery. His nurse told me that if C is drowsy this can trigger the partial seizures. They also sent us to get blood work done to check Charlie's phenobarb level because it could potentially be too high, they may need to decrease her dose. C was such a little rock star at the lab...she didn't flinch or shed a single tear. We do have to give Miss Sandra some credit, she is by far the best phlebotomist we have come across! The nurse also said the increase dose of the Sabril should help with some of the partial seizure activity.
Today C has had the most spasms that she has had since starting the Sabirl so we aren't super confident that the dose increase is going to work but tomorrow is another day so we just need to see what that brings.
On a brighter note...we are super blessed...the Sabril was going to cost us $250-$300 a month but we qualified for copay assistance and the medication is free up until $1300! After the (successful!) surgery, C will be tapered off the Sabril so we hopefully won't have to worry about hitting that $1300 limit.
Even with all of this craziness going on in Charlie Claire's little brain she is impressing us every day with her determination and development. Here is a picture of what we worked on the other day with Miss Wendy and C practicing it today! She has the whole concept down pat AND she is using BOTH hands! ps - if you look real close you can check out her little baby mohawk! :)
Please keep the thoughts and prayers coming...!
In addition to Charlie's infantile spasms she has partial seizures. People live with partial seizures every day, they aren't developmentally detrimental the way the spasms are. C has sub clinical (meaning we can't see them) and clinical (we can see them) partial seizures. Lately, we have noticed more clinical partial seizures then we have in the past. When she has these her eyes blink pretty rapidly and her entire body trembles.
Wednesday morning Charlie Claire had 7 seizures in one hour and then passed the heck out...seizures take a lot out of you. We called the neuro's office and her neuro really doesn't want to add any more meds to the mix right now and would like to just stay where we are until surgery. His nurse told me that if C is drowsy this can trigger the partial seizures. They also sent us to get blood work done to check Charlie's phenobarb level because it could potentially be too high, they may need to decrease her dose. C was such a little rock star at the lab...she didn't flinch or shed a single tear. We do have to give Miss Sandra some credit, she is by far the best phlebotomist we have come across! The nurse also said the increase dose of the Sabril should help with some of the partial seizure activity.
Today C has had the most spasms that she has had since starting the Sabirl so we aren't super confident that the dose increase is going to work but tomorrow is another day so we just need to see what that brings.
On a brighter note...we are super blessed...the Sabril was going to cost us $250-$300 a month but we qualified for copay assistance and the medication is free up until $1300! After the (successful!) surgery, C will be tapered off the Sabril so we hopefully won't have to worry about hitting that $1300 limit.
Even with all of this craziness going on in Charlie Claire's little brain she is impressing us every day with her determination and development. Here is a picture of what we worked on the other day with Miss Wendy and C practicing it today! She has the whole concept down pat AND she is using BOTH hands! ps - if you look real close you can check out her little baby mohawk! :)
Please keep the thoughts and prayers coming...!
Tuesday, March 1, 2011
March Madness
I lied...there is still seizure business to discuss. Charlie Claire's clusters are happening a bit more frequently and there are a few more spasms in a cluster than there had been. We called the neuro's office today and they told us to increase her Sabril to 12.5mL twice day - up from 10mL twice a day - this is the maximum dose she can get. We were a little reluctant to increase her dose so I called and talked to one of the nurses and she explained that since the infantile spasms are so devastating developmentally that what we are looking for is total elimination of the spasms and we aren't there yet so here we are...increasing her dose...
Speaking of development, Wendy the physical therapist came today. If I haven't said this before, we love Wendy! Since Charlie's mood has been so much better the past week and a half we have been able to get more PT in then we had in previous weeks. Wendy was super pleased that C is holding her head more center than she has been - in the past C would look to the right a lot and then switch and look to the left a lot and now she is looking straight ahead a decent amount. Charlie Claire also seems a bit more interested in holding things in her hands so we worked on finding the toys that she prefers. She still really likes the 2 toys we have that vibrate. We also started working on placing toys on her stomach and letting her grab at it with both hands and then bringing it up to her mouth. C did really well with this today. We have been doing sit ups with C for a while now and she has always done very well with this. Today, Wendy noticed that while doing her sit ups if you pause midway Charlie actually starts to pull herself up - Miss Wendy liked this!! More than likely Charlie Claire is going to be a lefty (I secretly love that we are going to have our own little south paw, get it ROCKY!) and she has certainly started showing a left hand preference...she holds toys better in that hand, sucks on that hand, etc. but yesterday she started sucking on her right hand - I am not going to lie, I almost started to cry I was so happy!
I did think of a couple things that we left out the other day in regards to surgery. It is unclear right now if the surgeon is going to have to take out C's motor and/or sensory strip. By the looks of the MRI her motor strip looks like it will be spared but as we have heard time and time again, they really won't know until they get in there. If they do have to take her motor strip out she is still young enough that her brain should compensate for what it is missing but only time (and a lot of PT) will tell. If they do remove it, C would probably not have fine motor skills on her right side - the surgeon said she probably wouldn't be able to play the piano but she would hopefully be able to play soccer. The lesser of the two evils is the sensory strip. If they need to remove this C won't have fine sensation in her right side, she will only be able to feel deeper pressure. Again, they can't give us a clear cut answer on that until surgery day. Another issue is how this surgery will effect CC's cognitive thinking...again another wait and see situation. As far as another risk...one of the things that could keep C in the hospital longer than expected would be if she needs a shunt. There will be extra fluid around her brain and it will be a matter of if her body is able to keep up and flush it out. If she can't then they will need to put a shunt in. The surgeon said this is not typical of the area that they are operating but it is one of the risks.
We are currently trying to get the ball rolling on all things Richmond. We are basically moving to Richmond for 2-3 weeks and the list of things we need to bring certainly isn't small. Mainly a lot of it has to do with Jackson - diapers, clothes, bibs, formula, toys, you get the idea! He doesn't travel light!! With Jason coming/going to and from Richmond plus working he isn't going to be home much so we had to set up care for our 2 dogs...who is sleeping at our house, who is coming over during the day to let them out, etc. Our family and friends are AWESOME, just in case you were wondering!! We booked our hotel (the corporate housing didn't work out) and the hotel is within walking distance, has a complimentary shuttle, etc. The hotel gave us a great rate and also gave us a friends and family rate so if you want to come visit us email me and I will send you the info. My mom, Jackson, Charlie Claire and I are heading up on the 28th to get settled and Jason will be meeting us there on the 29th...so will Aunt Sally! :) I am pretty sure MCV isn't going to know what hit it when the rest of our family shows up on the 30th!
Speaking of development, Wendy the physical therapist came today. If I haven't said this before, we love Wendy! Since Charlie's mood has been so much better the past week and a half we have been able to get more PT in then we had in previous weeks. Wendy was super pleased that C is holding her head more center than she has been - in the past C would look to the right a lot and then switch and look to the left a lot and now she is looking straight ahead a decent amount. Charlie Claire also seems a bit more interested in holding things in her hands so we worked on finding the toys that she prefers. She still really likes the 2 toys we have that vibrate. We also started working on placing toys on her stomach and letting her grab at it with both hands and then bringing it up to her mouth. C did really well with this today. We have been doing sit ups with C for a while now and she has always done very well with this. Today, Wendy noticed that while doing her sit ups if you pause midway Charlie actually starts to pull herself up - Miss Wendy liked this!! More than likely Charlie Claire is going to be a lefty (I secretly love that we are going to have our own little south paw, get it ROCKY!) and she has certainly started showing a left hand preference...she holds toys better in that hand, sucks on that hand, etc. but yesterday she started sucking on her right hand - I am not going to lie, I almost started to cry I was so happy!
I did think of a couple things that we left out the other day in regards to surgery. It is unclear right now if the surgeon is going to have to take out C's motor and/or sensory strip. By the looks of the MRI her motor strip looks like it will be spared but as we have heard time and time again, they really won't know until they get in there. If they do have to take her motor strip out she is still young enough that her brain should compensate for what it is missing but only time (and a lot of PT) will tell. If they do remove it, C would probably not have fine motor skills on her right side - the surgeon said she probably wouldn't be able to play the piano but she would hopefully be able to play soccer. The lesser of the two evils is the sensory strip. If they need to remove this C won't have fine sensation in her right side, she will only be able to feel deeper pressure. Again, they can't give us a clear cut answer on that until surgery day. Another issue is how this surgery will effect CC's cognitive thinking...again another wait and see situation. As far as another risk...one of the things that could keep C in the hospital longer than expected would be if she needs a shunt. There will be extra fluid around her brain and it will be a matter of if her body is able to keep up and flush it out. If she can't then they will need to put a shunt in. The surgeon said this is not typical of the area that they are operating but it is one of the risks.
We are currently trying to get the ball rolling on all things Richmond. We are basically moving to Richmond for 2-3 weeks and the list of things we need to bring certainly isn't small. Mainly a lot of it has to do with Jackson - diapers, clothes, bibs, formula, toys, you get the idea! He doesn't travel light!! With Jason coming/going to and from Richmond plus working he isn't going to be home much so we had to set up care for our 2 dogs...who is sleeping at our house, who is coming over during the day to let them out, etc. Our family and friends are AWESOME, just in case you were wondering!! We booked our hotel (the corporate housing didn't work out) and the hotel is within walking distance, has a complimentary shuttle, etc. The hotel gave us a great rate and also gave us a friends and family rate so if you want to come visit us email me and I will send you the info. My mom, Jackson, Charlie Claire and I are heading up on the 28th to get settled and Jason will be meeting us there on the 29th...so will Aunt Sally! :) I am pretty sure MCV isn't going to know what hit it when the rest of our family shows up on the 30th!
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