Post Op Appointment

First let's start this off with J & C's 6 month check ups yesterday!!! Dr. Cotton is AMAZING, we couldn't ask for a better pediatrician! The check up went well for both babies...

J Monster's stats:
weight: 20lbs 4 oz (84%)
height: 24 1/4 in  (68%)
head: 17 1/4in (42%)

CC Bear's:
weight: 19lbs 4oz (92%)
height: 26.5in (66%)
head: 17in (64%)

Thankfully it looks that C's weight is leveling out now that the steroids are officially out of her system...she has only gained a pound in the last month! Jackson was pretty much a rock star with his shots and certainly handled them well.  Charlie Claire has gotten a hall pass on shots at her 4 month and 6 month check up because of her high dose steroid and then because of the surgery so we need to get her caught up now that surgery is behind us.

Ok, moving on to post op news...

We met with Dr. Tye (surgeon) first and he was amazed at how well C looked! He couldn't have been more pleased with how alert and bright eyed she was during our visit with him.  Dr. Tye said that her incision looked really good and is healing very nicely.  He showed us on C's MRI the area that was removed - it is about 3/4 of the left side of her brain. We will see him again in a couple months when we go back up to see the neuro. 

After we finished up with Dr. Tye we headed across the street to meet with Dr. Morton and his team.  We had a lot more questions for the neuro team and were super anxious for this appointment.  Earlier in the week I thought C Bear was having some seizures.  I took a couple videos of what C was doing and sent them over for Dr. Morton to look at.  I may have overreacted a tad...when I actually sat back and thought it through I was able to be more rational and realize that she wasn't having seizures. Dr. Morton confirmed that today...the things that Charlie Claire is doing are not seizures.  To calm some of anxiety about watching every move the poor girl makes, Dr. Morton did explain what he thought she would do if she were to have a seizure and things for us to look for.

We had questions in regards to Charlie Claire's development and long term prognosis.  As far as development, CC is around a 2-3 month old and we need to work with her on that level.  Since we have another baby the same age in the house it is hard sometimes to not expect C to do what Jackson is doing even though the rational part of us knows that Jackson wasn't constantly seizing all day every day for 4+ months, he isn't on 3 different seizure meds and he didn't have massive surgery to remove part of his brain.  They do believe that C will be able to catch up but it will take some time.  It was very reassuring to hear that the team is pleased with how C is doing right now and how hopeful they are that she will make up for lost time. 

Long term prognosis: Considering the fact that C is missing 3/4 of the left side of her brain she is going to have some type of deficit, no one knows for sure (aside from the vision) exactly what that will mean down the line...only time will tell.  The plus of her having the surgery at the age she did is that other parts of her brain can compensate for what she is now missing, no one has a way of knowing at this time how her brain will "re-organize" itself. The goal all along has been to have CC in a mainstream school, doing mainstream things and the neuro team is still hoping that goal can be achieved.  Dr. Morton feels that once C "figures out" how to use the vision she has some of her development stuff will follow closely behind.  This makes us even more eager for CC's functional vision assessment in a couple of weeks so we can provide her with tools to help adapt to her vision loss.

We cut her Sabril again today!! The taper process is not for seizure control but to prevent withdrawal.  C's dose went from 8.5mL twice a day to 4.25mL twice a day.  We will do this for two weeks and then NO MORE SABRIL!!!!!! You have no idea what a relief it will be to get C off this medication for good!  Once she is off the Sabril we will work on tapering her Klonopin.  The phenobarb will be the last thing to taper - most likely she will be tapered off the phenobarb but something else will take its place. We will go back to meet with the team in June and at that time C will have an EEG to check on everything. 

The appointment came at a perfect time and we are so thankful that the neuro team took so much time answering our questions/concerns and reassuring us that things are on the "right track" for Charlie Claire.  We have said this before but feel the need to say again how pleased we have been with MCV...we have the utmost respect for Charlie Claire's team and truly feel that they have her best interest at heart.

J Monster ready for the road trip!

Super pleased with herself for getting a good report!

 

Goals

Charlie Claire's physical therapist and service coordinator came out today so we all could sit down and re-evaluate C's goals. Unfortunately, CC went to the dr this morning and has a bad ear infection so she slept through the entire session...yuck. However, we still were able to write up some new goals based on where we know Charlie Claire is at developmentally.

The new goals include:
- tummy time
- sitting up
- rolling over
- standing
- etc.

Miss Wendy thought it would be best for us to increase C's sessions to once a week right now and we COMPLETELY AGREE! We have 6 months to work on these goals before they get evaluated again but we can change/alter them at any time.

Charlie Claire's goals also have to do with vision.  To get a better idea of where we should go with those goals C will be having a functional vision test on May 11.  We are extremely eager for this assessment since we know that C lost her field of vision in the right side of each eye. Basically this test will give us a better idea of how C uses the vision she has.

In addition to the dr appointment this morning, Jax and CC have their 6 month check ups on Thursday and CC has her follow up with Dr. Tye and Dr. Morton on Friday in Richmond. We are super anxious for this appointment as well...we have a nice, long list of questions for Dr. Morton!

EASTER!

Super thrilled, can you tell?!

Nonnie, grand kids and great grand babies

J Monster!

Easter proved to be a hard day for Charlie Claire!

Love these boys!

Hope every one's Easter was as wonderful as ours! :)

THANK YOU!

We wanted to try and thank everyone who has helped out over the past few months.  We fear that we will never be able to adequately thank everyone for all they have done for us, please know that we wanted to try and express our gratitude for everything.

There have been many moments where we have tried to figure out how we will get through the unknown that lies ahead.  As the hospital bills start to roll in and the recovery continues we know that we have a long, bumpy road ahead.  We are comforted by the fact that our road has been made much smoother by the generosity of our family, friends, coworkers, and complete strangers.

We want to thank you for:

• being interested in our story
• your desire to help
• your constant words of encouragement through cards, comments, messages, emails, voicemails, and text messages.  Though we may not have always answered, they certainly did not go unnoticed
• the wonderful meals that were brought to us in and out of the hospital
• your generous donations of money, time, love, support and prayer
• sharing our good days and bad; our trials and tribulations
• rejoicing with us in our blessing and strides forwards
• lifting us up when we didn't have the strength to do it ourselves

We realize that this cannot do justice to the way we feel and to the impact that everyone has had on our lives.  Every person has truly touched our hearts.

THANK YOU!

Ecclesiastes 4:9-10 (New International Version)

 ⁹ Two are better than one, because they have a good return for their labor: ¹⁰ If either of them falls down, one can help the other up. But pity anyone who falls and has no one to help them up.

I would love to take credit for what you just read but that wouldn't be fair to my friend Sarah.  I believe I have mentioned Sarah on here before, her daughter had a life-saving liver transplant in 2009 and I am "borrowing" Sarah's words because they are PERFECT!!

Inspiration...

Going 100mph all day, every day for 6+ months is beyond draining.  I've always been a big fan of quotes and about a month ago I came across these.  I continue to keep them close by and read them quite frequently.  Just thought I would share in case someone else could use a little extra inspiration today...

There are only two ways to live your life. One is as though nothing is a miracle. The other is as though everything is a miracle." (Albert Einstein)

"The only way we can be there for our children is to be there for ourselves." (Anonymous)

"Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it." -Bill Cosby

"The central struggle of parenthood is to let our hopes for our children outweigh our fears." (Ellen Goodman)

"Enjoy the little things, for one day you may look back and realize they were the big things." -- Robert Brault

"Perseverance is not a long race. It is many short races one after another." - W. Elliot

"If you think you can or you think you can't, either way, you'll be right." -Henry Ford

"Go as far as you can see; when you get there, you'll be able to see further." -Thomas Carlyle

"Courage is being scared to death - and saddling up anyway!" -John Wayne

"Do not let the behavior of others destroy your inner peace." -Dalai Lama

"Some people come into our lives, leave footprints on our hearts, and we are never the same." -Franz Peter Schubert

"What lies behind us & what lies before us are tiny matters compared to what lies within us." -Ralph Waldo Emerson

"Children remind us to treasure the smallest of gifts, even in the most difficult times." - Allen Klein

"There are two ways of meeting difficulties: you alter the difficulties or you alter the way you meet them." (Phyllis Bottome)

"I know God will not give me anything I can't handle. I just wish He didn't trust me so much." (Mother Teresa)

"Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." - Christopher Reeves

"To the world you may be one person, but to one person you may be the world." - Heather Cortez

Nurses!!

After spending so much time in the Beach General NICU/CHKD NICU/CHKD PICU/VCU PICU you learn a thing or two...nurses do not get enough credit!!! Nurses are the ones who care for your child all day every day.  You typically see your dr during rounds in the am and occasionally they pop in later in the day to check on things but for the most part nurses are who you deal with.  They answer your questions, reassure you, do diaper changes, sponge baths, feedings, administer meds, offer suggestions, counsel you, etc. pretty much they get to know your child just about as well as you know you child!

That being said, we just wanted to thank a few of Charlie Claire's favorite nurses at VCU...Carrie, N'Keisha and Jan! All of C's nurses were wonderful but these three ladies went above and beyond!! We really appreciated them caring for C and helping us through such a challenging time!

Here is a picture of Charlie Claire with Carrie (C Bear!) and N'Keisha!

Constant attention by a good nurse may be just as important as a major operation by a surgeon.  ~Dag Hammarskjold

Thanks ladies!!!

Eye Doctor

Tell us why Charlie Claire can get labs drawn and get a new IVs put in without FLINCHING but take her to the eye dr and put some drops in her eyes and she FREAKS OUT?!?! The picture above was taken BEFORE there was any mention of dilating her pupils! :)

The appointment went pretty well though if you take out the screaming baby! The dr (who is SUPER nice!) said that overall her eyes look healthy.  When we saw the dr in December, C had a slight astigmatism in each eye.  The left eye stayed the same and the right is slightly worse. He would like to give C a couple more months to heal and develop before deciding if we should put her in glasses or not.  Right now he said she is borderline for needing them so when we go back in July we will see if it is improving, staying the same or getting a bit worse. As far as the vision loss in the right side of each eye...he said that it is great that Charlie Claire had the surgery when she did because her brain is still so young and developing that another area can make up some of the deficit.  It wouldn't take over all of the loss but instead of being completely gone she may just have an impairment...bottom line is that you see with your brain. We just need to wait and see what actually comes of all this (something I am not very good at!). 

The past few days have been a tad crazy as we try to settle back into things...it still seems that there is a big disconnect between us and the outside world...I promise, we are working on it! 

We have said before that the support we have gotten the past few months has been amazing...BEYOND amazing.  Jason and I came across this quote today that made us think about everything people have been doing for us and Charlie Claire...

You can't live a perfect day without doing something for someone who will never be able to repay you.  ~John Wooden

Home Sweet Home!

Aunt Theresa rocks the house and picked out a SUPER cute going home outfit for Miss Charlie Claire Bear...

Doesn't she look sweet?! Thanks Aunt T!!!

We are pretty sure we came home with a lot more stuff then we went to Richmond with! Unpacking yesterday took much longer than unpacking the first time! We got it done though...thank you Mom, Aunt Anna, Aunt Gina and Toni Ann for the help!

We don't waste anytime...Miss Wendy, C's physical therapist came over this morning! We both were impressed that Charlie Claire was letting Wendy move her all around...she hasn't really been a fan of that the past few days.  Overall, Wendy thought C is doing well! She gave us some things to work on with C but reminded us that she is recovering from massive surgery and just to take things slowly the next couple weeks. 

Wednesday Charlie Claire has an eye dr appointment.  Part of the agreement for the Sabril is getting eye exams every 3 months while taking it...hopefully all still looks good although it is hard to determine at this point exactly what CC sees...

Jackson and Charlie Claire turned 6 months old today...it is amazing to see the things that they are into these days! J Monster is quite full of himself! He is rolling all over the place and is very interested in the world around him. He LOVES his jumperoo (thank you Jaime and Eileen!) We have finally started the twins on solid food...Jackson is an eating fool and C is getting the hang of it! Miss CC has been through a lot in her first 6 months of life and now it is time for her to start enjoying normal baby things! Happy 6 month birthday to the little loves of our lives! :)

It is certainly nice to be back home, to have everyone under one roof and to get back in to our normal routine.

Wrapping up...

Jason and I spent a lot of time thinking about and planning for surgery but we never thought about AFTER the surgery. Never once did we discuss life post surgery. Considering no one knew what to expect we just went into this blindly...

Now, that we are on the other side of surgery we are in a funny position! We are beyond thankful that the surgery went so smoothly and that it was successful, Charlie Claire hasn't had a seizure in 10 days...that is the longest she has been seizure free since she was 3 days old!! However, we feel more nervous bringing Charlie Claire home now then when she was a newborn!

It didn't take us long to get into the groove of having a baby seizures...we definitely got a crash course in neurology! We would watch CC like a hawk and document any little thing that could potentially be a seizure. We were diligent about giving C her meds, we had many blood draws keeping up with charlie's medications. EEG's became a normal occurrence and we became quite friendly with the lovely techs at CHKD!! We have notebooks full of Charlie Claire's seizures...what time the occurred, how long they lasted, etc. Certainly this was not the type of baby book we imagined when I was pregnant.

Now here we are in life post surgery and we are back to being in a whole new world with a whole new set of anxieties. Jason and I know that the potential is there for Charlie Claire to have a seizure...especially in the first 6 months after surgery...so it's safe to say we will continue to watch her every move. Before surgery Charlie Claire was holding her own developmentally but there were certainly things that C was behind on. Now it's go time as far as trying to bring her up to speed. It's already amazing at little things Charlie Claire is doing that she wasn't doing before surgery. However, Jason and I do not know the full extent of how this surgery will effect CC's future. What we do know is that Charlie had to have this surgery in order for her to have a shot at a "normal" life and we are both committed to giving (or getting) Charlie Claire everything she needs to be the best Charlie Claire Bear she can be! Another we know is that C is a FIGHTER!! We truly believe that this little girl is going to do BIG things!

The past 6 months have taught us A LOT. We went from 72 hours of pure twin baby bliss to having our world completely turned upside down and inside out. We've learned a lot about people through out this experience. It has been breathtaking how many people, who have never even met Charlie Claire, that have been in C's corner. When C was first diagnosed we didn't want anyone to know...not because we were ashamed but we didn't want people to treat Charlie different and at the time we were still wrapping our hands around everything. Of course it eventually got to the point where we had to start telling our family and friends, after that word just started getting out and the support came POURING in. Jason and I know we would not have been able to get through this without every thought, every prayer, every email, every phone call, every text message, etc. that came from people close to us and people not so close to us but we all had the same goal...to help Charlie Claire. It's very overwhelming to us when we sit back and think about how loved Charlie Claire is and how awesome it is to know that she has had so much support. Thank you, thank you, thank you.

I don't think we will ever be able to put into words how grateful we are that Charlie Claire was cared for by Dr. Morton and Dr. Tye. From the day we met both of them we knew that they were on Team Charlie Claire! We could not have asked for a better experience and are truly blessed. We are confident in Dr. Morton and his team and know they will follow C closely for quite some time. The nurses in the PICU at MCV are the ones who took care of Charlie Claire around the clock and we couldn't have asked for better. They took amazing care of our baby girl and were just super good to her. It's funny how quickly you can get attached to people and we can't wait to go visit (just VISIT!) them in the future!

We should also mention how great the Hilton Garden Inn has been...the staff here has asked about C everyday and have been super accommodating!

As we prepare to leave Richmond tomorrow it comes with mixed feelings. There is a sense of security in being so close to Charlie Claire's medical team but we know we can't move into MCV so it's time for us to head home.

It will be nice to start getting used to our new normal...

Just In Case

Any one was wondering...this is the face we've been getting from J Monster all night! Apparently, he wasn't as thrilled as everyone else about Charlie Claire coming home! :)

Bye MCV!

DISCHARGE!

Charlie Claire is getting discharged today!!!!

Minor set back...

Charlie Bear has had a rough afternoon. Her nurse Carrie (whose nickname is also C Bear!) has been taking wonderful care of her but C got sick this afternoon and just seems uncomfortable.

Her CT scan came back looking good but the surgeon said it had some air, which is apparently common and to be expected but can make Charlie Claire pretty irritable.

After some meds for her tummy and some IV fluids, my mom and I were finally able to get C comfy and to sleep...praying that this little "set back" is just a fluke. It breaks my heart to know C is in pain :(

Looking Good

Yesterday Charlie Claire was pretty miserable but this morning she has seems MUCH better! Just like last week, she is pretty content until we try to move her around...she doesn't appear to be a big fan of that. She also is not a fan of the occasional cough or sneeze.

Dr. Tye (neuro surgeon) was in early this morning and said C looks really good and he was super pleased! Charlie Claire has a head CT scheduled for some time today and if that looks good Dr. Tye may let her be released from the PICU. We would not be discharged from the hospital but C doesn't really need to be in the ICU anymore. Fingers crossed that the CT scan looks good! If Charlie does get moved to a regular room Jackson would be allowed to come see her!!!! Dr. Tye said that at this stage of the game with C's recovery we want things to remain uneventful...

Dr. Morton (neuro) was also in this morning... today we get to start tapering Charlie Claire's sabril!!!!! If you haven't been keeping up with the blog for a while then you wouldn't know why this makes us so happy! The sabril, while very effective at treating infantile spasms, has ugly side effects...one being permanent vision loss. Jason and I were super reluctant to put C on this medication because we knew that with the surgery she would already be losing her vision in the right side of each eye but we were really left with no choice. Dr. Morton originally said that since Charlie wouldn't be on it long term that her vision should be spared but you just never know. Back to the taper...we are beyond thrilled that we are able to begin the process of getting our sweet girl off this medication! Once Charlie Claire is off completely for a couple weeks she will have an EEG.

We can't say enough good things about MCV...Dr. Tye and Dr. Morton have been amazing, the nursing staff has been unbelievable (minus one night...sorry about that Aunt T!) in taking such good care of CC...we honestly could not have asked for a better experience!

We are feeling a little anxious/nervous about bringing Charlie Claire home...this is of course the outcome we prayed for but I can't say that we are prepared for the new set of anxieties this brings. Every move Charlie makes I am sure will be under a microscope for a little bit as we adjust to having a seizure free baby!

We are still blown away at the amount of love, support, prayers, etc. we have been getting for Charlie Claire...thank you all so much for being a part of this journey with us.

A couple of pictures of Jackson and Charlie Claire to brighten your day....

DONE!!!

Charlie Bear is out of surgery!!!!

Everything went super well! They only removed the grid! I was using the wrong term...the neuro saw spikes on the EEG the first couple of days but have only seen "sharps"'since and apparently those are not as "bad" as spikes.

CC is pretty unhappy right now but other than that doing good...

Thank you all for the continued support, love and prayers! You all have been AMAZING!!!!

Round 2

Ready to rock out round 2. They took Charlie Claire back around 730. Surgery should start around 830/9.

Back to the OR

As of right now tomorrow mornings surgery looks as though it will only involve the grid removal.

The spikes that are currently showing up on Charlie Claire's EEG are very little and unless the neuro and the surgeon see any problems when they go in tomorrow the game plan is to just remove the grid. The surgeon said today that they may have to "round off the edges" or deal with a couple things once they are in there but the surgery won't be as crazy as the other day. The neuro came in today and "mapped out" where Charlie Claire's motor strip is so in the event they need to remove more hopefully they can spare that. They will be taking CC Bear back around 630, the surgery should start around 830/9 and last around 2-3 hours.

Your continued positive thoughts and prayers are GREATLY appreciated!!! We will keep everyone posted tomorrow. Thank you all so much for the awesome love and support!

Pleasantly Surprised

Dr. Morton was a bit surprised this morning when we talked to him! He said the spikes around the surgical edges have quieted down...meaning that as the swelling and irritation are going away so are the spikes!! Dr. M said that he wasn't expecting this to happen but he is pleasantly surprised.  Charlie Claire is still seizure free and Dr. M still wants to monitor what happens over the next 24 hours (meaning today/overnight) before making a final recommendation about the surgery Wednesday.  Today he said if things remain the same that he would recommend just grid removal and not removing any more brain tissue.  Dr. M said that while the spikes aren't "normal" that he could live and be comfortable with the activity he is seeing. 

He said today that he would rather Charlie Claire be on a low dose seizure med long term then to remove something that she would miss (her sensory strip).  When he was in today C was sleeping but when he lightly touched her face and hands she reacted which means that currently her sensory strip is functioning.  One of the most successful things right now is that the catastrophic hypsarrhythmia pattern on C's EEG is completely GONE.  That is what causes developmental delays...since that has been eliminated and the background on the remaining left side of her brain and the right side looks normal Dr. M is very encouraged about C's future!

We are certainly hoping that things on Charlie Claire's EEG remain uneventful and that in conjunction with the doctors we are able to make the best decision for CC...

As soon as we know more we will fill everyone in.  Please send some good positive thoughts and prayers C's way!

Sunday Fun Day pics!

Busy day!

Lots of visitors!

Charlie Claire put on quite a show for Nicole, Kyle and Caitlin...she was kicking her legs, smiling and busted out some talking!!

We got to bring Jax up to the hospital but not into the PICU so he was able to meet a few of nurses who care for Charlie and he LOVED it! He also enjoyed the weather being super nice and getting to stroll around the streets of Richmond!

Pool time!

Weekend

The past couple of days have been much quieter at the hospital since it is the weekend.  Kind of a nice break...instead of 15 people coming in every 10-15 minutes poking and prodding Charlie Claire and shining a flash light in her eyes there are only about 5 people doing this.

Yesterday morning Miss CC gave her nurse a run for her money.  While feeding her, C EXPLODED in her diaper which required a big clean up including changing the linens on her bed. This proves to be a tad difficult because C has wires coming out of her head that are hooked up to a machine on top of IV lines, leads on her chest, etc. After they got Charlie Claire all clean and settled I continued feeding her.  Immediately following this feeding, C got SICK EVERY WHERE. Which required ANOTHER major clean up and linen change.  However, the past few days C's heart rate and blood pressure have been elevated - the dr's were in the midst of changing C's bp meds to try and bring it down, etc. but ever since she got sick all of her stats have returned to normal.  The nurse thought that maybe once Charlie Claire got that out of her system she is just feeling better and things internally have calmed down.  Aside from getting new IV's, blood draws, etc.  things have been pretty uneventful which is apparently a good thing!

As far as C's EEG...
The spikes seem to have consolidated to an area right on the edge of what they removed the other day.  Dr. M said he expected this because had they not placed the grid they would have removed that area the other day they just decided to be conservative since they were placing the grid.  If they recommend removing this area it would involve removing a portion of her sensory strip but not the whole thing and it appears right now that the motor strip will be spared.    C has still remained SEIZURE FREE and the background of her EEG continues to look normal!!!! Our surgeon, Dr. Tye, was out all weekend and returns tomorrow so we think that after Dr. M and him talk tomorrow they will give us their recommendation.

It has been such a BLESSING to not see any seizures...considering that we are used to seeing somewhere between 15-40 seizures a day it is AMAZING to not see a SINGLE one!

The swelling in C's face has gone down considerably and she is now able to open her left eye! Her scalp around her incision is pretty bruised and she is quite irritated with her little gauze "hat" so she keeps getting it off.  We have also been starting to get some smiles out of her!

Charlie Claire yesterday afternoon!

We had some visitors yesterday which was super duper nice! They were able to come and hang out with Jackson and then head up to the hospital to see C.  Jackson has also been getting in some serious Uncle Jason time! I will put up a picture of them in a little bit!  There are some more people coming into town today and the sun is shining...two things that make us very happy!

Please pray that things continue to look good on C's EEG and that we get more information tomorrow regarding the surgery on Wednesday.  We truly appreciate everyone who is on TEAM CHARLIE CLAIRE!!

EEG UPDATE

Dr. Morton paid us a visit late in the afternoon.  He said that so far since Charlie Claire has been hooked up to the EEG she hasn't had any seizures!!!!!! Such a blessing to hear those words come out of his mouth!

Here are the things that Dr. Morton is currently pleased with:
- He expected to see seizure activity for at least a few days after the surgery just because her brain was "angry" and swollen, etc.  but there haven't been any
- That C is moving the right side of her body.  Dr. M said it's not uncommon for people to have some immediate weakness just due to swelling and irritation but C has not seemed to have an issue with that.
- The hypsarrhythmia pattern that is associated with Infantile Spasms is COMPLETELY GONE!!!!!!!
- The front left area of C's brain never had any seizures originate from there but it was being affected by the hypsarrhythmia. Since surgery the activity in that area of her brain has started to normalize and Dr. M was super pleased about that.

Cause for concern:
There have been some spikes on Charlie Claire's EEG which is not considered "normal" brain activity but they aren't manifesting into seizures.  Dr. M wants to watch for a couple more days before making his recommendation as far as what to do on Wednesday.  This turns into a cost/benefit situation.  If the spikes continue but still no seizures do we leave that area in and if in the future C does have a seizure try and control it with medication knowing that if they can't be controlled she may have to have surgery again.  Or do we have them take it out (which would mean removing her motor and sensory strips) and causing permanent right side weakness. 

Overall, Dr. Morton was really pleased and ENCOURAGED by how things are looking right now but said he wasn't comfortable just yet as far as what he recommends going forward. He said she has A LOT of healing to do and it's good for her to sleep as much as possible right now.

After the transfusion today some of Charlie Claire's stats normalized.  They will check her hemoglobin level in the AM to make sure that has returned to normal level after being so low today. She is still running a fever but no one seems to worried about that right now. C did seem to be a bit more uncomfortable today so they have been working on managing her pain mainly with Tylenol but every now and then they give her something stronger.  Her poor little eye is so swollen and bruised but we are hoping that starts to go down soon and she will be able to open it again. They did give her a diuretic today to help alleviate some of her swelling and there is already a big difference in the puffiness in her hands, legs and feet.

We can not say enough good things about MCV...everyone has been so attentive and taking such good care of our little girl.  C's nurses are SUPER fantastic and have made our stay there very pleasant. The staff is pretty much on a VCU Final Four high right now!

We have a busy weekend ahead with A LOT of visitors!  This will be super helpful with Jackson - he isn't allowed up to the PICU so there is serious scheduling involved so that someone is with Jackson all the time and someone is with C all the time.  The more people around the easier this is!

Thank you all for your continued support, love and prayers! It is amazing how many people are pulling for Charlie Claire and we appreciate it so, so much!!!

Rocky!

Not only is Charlie Claire got both her hands wrapped up like Rocky but she is rocking a shiner like him too!

Charlie Claire is having a little bit of a rough morning...she has a fever which is apparently pretty common with the type of surgery she had so the surgeon isn't worried but C Bear is a tad uncomfortable. She is also having a blood transfusion right now because her hemoglobin level is low...again, apparently normal since she lost so much blood during surgery. Her body holds about 650cc of blood and she lost 450cc during the surgery. C is a quite pale and doesn't have much energy right now.

The left side (that is the side the surgery took place on) of Charlie Claire's face is pretty swollen...right now her left eye is bruised and completely swollen shut. They said that today is the peak day for swelling and that after today it should start to subside. The neuro and the surgeon are both still pleased with everything. Her movements are good, her responses are good and she has started bottle feeding!!

Hopefully after she gets the blood she will perk up. Please keep our baby girl in your thoughts and prayers...