Keeping Us On Our Toes

Let me first start by saying that we love MCV but today was really the first time we missed CHKD. The staff at the EEG Lab at CHKD always took such awesome care of our girl and not that they didn't do a nice job at MCV, it just wasn't CHKD. We missed Miss Amy, it was cold, they didn't have a nice, comfy video room with a TV...we are spoiled rotten, I know! :)

Onto the EEG...the area where the activity is coming from is the area that was questionable back at surgery time. Our neuro was just conservative and didn't want to take that area out unless it was absolutely necessary because it would mean taking some of Charlie Claire's sensory strip out.

The activity is not a seizure but it's not NOT a seizure. There is rhythmic activity happening but it's not really forming into a full seizure and when it's done the EEG isn't showing a typical post seizure pattern (I'm not 100% familiar with this but apparently it would slow down or something along those lines) also when it happens she is still "with it"...looking around, chatting, kicking her legs, eating, etc. so Dr. M doesn't want call it a seizure just yet. He said it could be healing and as her brain is reorganizing this could be a "side effect" because it started happening when things seemed to start clicking for her developmentally. So, we are starting CC on keppra as a precaution to see what happens, if it helps then great if it doesn't then worst case would be going back in and removing that last small area. Keppra is one of the easiest anti-epileptic drugs you can take and has minimal side effects. CHKD tried her on that back in December with no luck but at the time she had a big area that was seizing all day and now there is a tiny area and it's not seizing constantly.

Dr. M said he isn't discouraged because the rest of CB's EEG looked AWESOME! The right side of her brain....perfect, front left...perfect and the only activity that happened was corresponding with the eye flutter...nothing happening besides that, meaning she isn't having seizures we can't see.

After the EEG and meeting with Dr. M, Charlie Claire had to get some blood work done. Dr. M wanted to get a phenobarbital level. They want to take C off the phenobarb eventually so depending on how she does with the keppra we might do that soon. Another moment of missing CHKD. The lady who takes C's blood at CHKD NEVER had a problem and Charlie Claire always handled it like a champ. I don't know what happened today...Shortcake wasn't having any of it...this lady stuck her twice and nothing came out, C was HYSTERICAL (I'm talking turning blue hysterical), she got someone else to come help her with no luck and finally after 30 minutes they did a finger prick and squeezed the blood out...C and I both were sweating when it was over.

So, its not fantastic this is happening but Dr. M told us to not be defeated that this wasn't completely unexpected. We are really crossing our fingers and saying TONS of prayers that this is just a fluke thing and will resolve, if not then back to the OR we go...

Tomorrow CB will start the keppra and it will take about 5 days to really get in her system. We will go from there...

In progress

Video EEG in progress, started about 15 min ago...only 3 hours and 45 min to go. CB cooperated and already did her eye thing.

Did this girl really fall asleep while getting her leads on? We've come a long way! Miss Amy, C's EEG tech at CHKD, probably wouldn't believe it!

Video EEG

The past couple of weeks Charlie Claire has been doing something a little odd with her eyes. We've been keeping an eye on things and talked to the neuro's office and decided to move up CB's EEG to this Friday at MCV.  The neuro told us at our last appointment that it would be unlikely for C to have a seizure that involved her eyes since that area of her brain has been removed (only on the left side but C has never had a seizure that started on the right side of her brain, always started on the left).  We of course are not Dr's and don't want to try and figure out what is going on so here we are...having a 4 hour video EEG on Friday morning. This way when she does the eye thing the neuro can confirm what is happening on the EEG. CC has been doing this thing about 6-8 times a day. 

We are trying to remain positive and hopeful that what is going on is not seizure activity but it's hard not to let our minds wander to that place. If they are in fact seizures we hope that they will be able to be controlled with medication - hasn't been our luck in the past but we will have to give it a go.

We are not sure when Dr. Morton will be able to read the EEG so it's hard to say if we will get the results on Friday or if we will have to wait until sometime next week.

This morning Miss Wendy came and C is still doing really well with her PT.  Miss Wendy was able to witness Charlie Claire Bear doing her eye thing , it happened while working on some vision stuff.  When she did it she still continued to track objects. We aren't sure exactly what that means in terms of whether or not it is a seizure but C clearly isn't "out of it" when it's happening. We have a few new things to work on this week and we will be seeing Miss Wendy on Tuesday next week.

We are extremely thankful that Dr. Morton and his staff are able to see us so soon. We are beyond anxious for Friday....

I apologize for the lack of posts this week...

Miss Wendy came bright and early this past Monday morning. At 8:15am everyone in our house in still in their pj's but Miss Wendy is awesome and loves us anyway! Charlie Claire had another great session. C continues to get better and more comfortable with tummy time, she is tracking her black and white flash cards like a champ and we are now working on some other objects, she let Wendy move her, roll her, etc. the other day without any complaints so it looks like we can now stop handling her as if she were a piece of glass! Miss Wendy was pleased to see that C Bear has gotten a lot more social since she saw her last!!! C has been a lot more interactive with people, she even smiles now when she sees Jackson! It really does seem that each day she gets better and better.

I am currently struggling with life post surgery.  I am just not myself. I am constantly thinking about seizures, I am dreaming about seizures...if it's possible, I think about seizures more now than I did BEFORE CC's surgery.  I am completely a paranoid hot mess. I am sure I am making that sweet girl crazy because I am constantly hovering over her watching her every move. I am trying really hard to work through this "funk" because we have so many amazing things going on that I want to enjoy. Charlie Claire's EEG isn't supposed to be until June 14 but I am going to call tomorrow and ask to bump it up, I am hoping it helps to put my mind at ease a bit.

Hope everyone has a wonderful weekend!

J Monster

When I was pregnant, Charlie Claire was Baby A and Jackson was Baby B.  For 8+ months C was the baby that was supposed to come out first.  At my 37 week ultrasound we found out that Baby B had taken the lead and pushed Baby A out of the way.  Baby B (who was now A based on position) was in perfect position ready to come out, Baby A (who was now B) was sideways with their head in the others belly.  We know now that the original Baby A was Charlie Claire and the original Baby B was Jackson.  Jackson made sure he was the big brother and since having these babies this all makes PERFECT sense!

Aside from medical issues, C is super laid back, relaxed, low key, wakes up chatty and smiling, etc.  Jackson on the other hand is ready to go all the time! From the time he wakes up, mad because there is no one there entertaining him, till the time he goes to sleep he wants to be doing something EVERY second! He is our high energy boy!

This little boy doesn't know it yet but he got his mommy and daddy through a very difficult time.  While at times it was stressful trying to coordinate people when C Bear was in the hospital or had dr appointments, he was able to brighten our bad days.  When we were in the thick of watching seizures that were devastating our  little girl he didn't skip a beat...growing, learning and developing. There were moments that as a mom I will always feel bad about...the time Jackson rolled over for the first time and I screamed to Jason "Oh gosh, Jax just rolled over..oh no, C is having a seizure.." and the seizure took precedence at that moment. As I have said before, I remember all of Jackson's milestones but for the first 6 months of his life he was "competing" with epilepsy.  Thankfully, now epilepsy has taken the backseat!

Jackson, while high maintenance, is a very sweet boy who loves playing with Jeter and Ripken, bouncing in his jumperoo, going on walks, people watching, bath time, rolling anywhere he wants to be, enjoying every food we have given him so far, putting anything and everything in his mouth, is super fascinated with his sister but currently does not like that he has to share me with her!

Here are some things that make Jax, Jax!

We are just so in love with this little boy and love that CB has such an awesome big brother...he is our little monster!

GREAT STORY

Click on that link above! This is an awesome story that was in our local newspaper recently about a college softball player who had a similar surgery as Charlie Claire...gives us lots of hope for the future!!

We spoke to Dr. Morton's nurse this morning and this evening CB will get her FINAL dose of Sabril!!!! We couldn't be happier that C will finally be off that medication. We will be heading back to MCV in June for an EEG, appointment with neuro and the surgeon and hopefully at that time we will start tapering the Klonopin.

Vision Assessment

Charlie Claire had her functional vision assessment yesterday and I think it went better than we had expected! I am glad the assessment was this week since we all agree that in the past week everything seems to have started coming together with CC's progess.

The vision specialist (Donna) brought a box full of goodies that she used in order to see what C did with each one.  C seems to respond really well to the items that are shiny (go figure!) and that make noise...she really liked the slinky, mardi gras type beads and the space/thermal blanket!  Donna gave us a lot of good tips and ideas on how to use those items to help C Bear. Charlie Claire did really well with following items up and down and she did pretty well tracking side to side.  Sometimes there is a little bit of a lag and sometimes C looks away but if you just hang tight she comes back to it and continues to follow.  

We are going to go through the process of getting CC qualified with the Virginia Department of the Blind and Visually Impaired.  They will more than likely accept her based on her surgery (losing her left occipital lobe) but they will come out and do an assessment. If they do accept her she basically gets  access to a lot of "tools" that otherwise we wouldn't be available to her.

It was super good for Donna to come out and do this assessment so now we have a baseline to work with.

The other day we talked about C's tummy time progress, wanted to show you a picture of her from last night!

What A way To Start A Monday!

I am sick. Jackson is sick. Charlie Claire is sick. Thank you Jackson for sharing your germs with Mommy and your sister!

We have been playing around with times of the day for Miss Wendy (physical therapist) to come...CB is not on a set schedule right now so it is hard to predict her nap times and last week she was asleep on Monday when Miss Wendy got here and then on Tuesday she was awake but she was sleepy.  It seems that morning time is a great time of the day for Charlie Claire (for both babies really!) so Miss Wendy came at 8:15 this morning and C had an AMAZING session (even with the coughing and sneezing)!!!!!

It did my heart so good to see C do so well this morning!! More than good...great! I needed to see C Bear nail it this morning...it's days like today that make everything we do with her on a daily basis worth it! Another Mother's Day present! :)

Today was the first time that C didn't cry or complain on tummy time.  Dr. Tye (surgeon) did say that this would be a difficult position for C Bear for a while but it seems we have gotten over the hump! We knew it was the the position that was bothering her because her head control is amazing when she sits up. Today, not only did she seem comfortable on tummy time but she actually lifted her head up to look at one of her black and white flash cards! I am not going to lie, I almost cried!

C seemed so much more tolerable of Miss Wendy moving her all around, rolling her around, etc. The past week we have also noticed a big difference with her vision.  She has been tracking black and white flash cards so much better lately! At first she would follow it from her left side to her nose (midline) but then wouldn't continue to the right, she would just look away, but now she is turning her head to follow the card! She doesn't do this every single time we work on it but certainly the majority of the time. We have also been working with CC on holding toys in her hands.  It seemed as though Charlie Claire's hands are really sensitive and she would cry when we would try and get her to hold things...Miss Wendy thought this was stemming from the hospital...getting IV's, blood draws, etc (which broke my heart)...so this past week we did lots of hand massaging and it seemed to pay off! CC not only has gotten much better at holding our fingers (very tightly!) but she also held a toy this morning...she isn't super consistent with this but we are working on it! We are not sure if it was the time of day or if C is just really starting to feel better as she recovers more but Miss Wendy was super impressed with how well Charlie Claire did this morning and gave her a big fat A!!!!!

Can't even find the words to describe how proud we are of our little girl.

My first Mother's Day was perfect! Thank you to my wonderful husband and babies for making my day so sweet and special...even though Jason was the only healthy North in the house!  I am so in love with all 3 of you!

Please say some prayers that me and my sweet littles feel better real soon, that C continues to rock out her physical therapy and for C's funcational vision assessment on Wednesday!

Mother's Day!

Happy Mother's Day to all the wonderful Mother's out there! I hope all of my friends who are new moms and experiencing their first Mother's Day enjoy this special day with your family!

I would like to take a moment to honor my mom...

A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts.  ~Washington Irving

Mom, I would like to thank you for every ounce of help the past 7 months...you have certainly sacrificed A LOT in order to help me and my family and for that I am forever grateful.  Thank you for every meal you have cooked, all the vacuuming and laundry you have done, every doctor's appointment you have gone to with us, knowing CB's medical history just about as well as I do, watching Jackson when we couldn't be with him, sitting with Jax and C so I could shower and brush my teeth, picking up things from the grocery store, cleaning bottles, making bottles, sleeping over at our house, sleeping over at the hospital, being with me for EEG's and MRIs and everything else they have done to my daughter, not getting mad at me when I call you at 3am because one of the babies has a fever, being by my side every step of the way the past 7 months...most importantly, thank you for teaching me how to be the best mom to my babies. I love you more than ever!

For my first Mother's Day...
I want to make a promise to myself to soak in every second of my babies. The past 7 months have been such a whirlwind of seizures, neurology appointments, EEGs, changing medications, changing doses of medications, blood draws to check levels of meds in C's blood,  researching everything under the sun about epilepsy, hospital stays, surgeries, etc. and now that we are all able to breath I have realized how much we have missed because we were in crisis mode.  We were there physically living the moments but mentally we were not truly appreciating them because we had big, heavy things going on.  I can tell you exactly what day Charlie Claire got admitted to the PICU for the first time and what day she stopped her (dreadful) steroids but I can't tell you the first time Jackson or Charlie Claire smiled, slept in their crib for the first time, or the first time Jackson rolled from his back to his tummy...I was there for every single one of these "milestones" but my mind was not so, I promise myself that I will really enjoy and soak in every second of my babies...

I have a lot of reasons to smile today and most of them are because of these two  little faces....and of course my most fantastic husband...without him as my partner, I would not be able to be the mom that I am!

Jason's note....

As Kristin thanked her mom, I will take a minute to also thank my mom on her first Mother's Day as a Grandmother.  The last seven months have been tough on myself and Kristin.  I am completely amazed by all the support we have received from our family and friends.  It is times like these where you appreciate everything your parents did for you growing up.  I would like to say Thank You to my mom for making me the man I am today.  I am just now starting to realize and appreciate all the sacrifices and lessons she taught me as I was growing up.  She has a been great mom and a better friend.  She is always there to help anytime anywhere.  I LOVE YOU MOM!!!!





Pool Time!

Through the Early Intervention program that Charlie Claire is in there is a gross motor development swim class they offer, so naturally we signed up! Charlie Claire had her first (of 4) session yesterday, this was the first time she has been in the pool! The jury is still out on how she felt about the pool...we didn't get any smiles out of her but she didn't cry either!!

The class was pretty neat.  There were about 10 other little ones in the class, 1 class leader and then 7 helpers.  All the activities we did involved a song and motions in the water...just to give you an idea...we did Patty Cake but we (the moms) squatted down so our shoulders were underwater so that our babies hands were underwater and did the whole song (3 times!) with a helper in front of us moving the babies arms underwater so they feel the resistance and a new sensation.  There was a lot of kicking exercises as well and C enjoyed that the most I think! We sat them on the side of the pool and lifted them up so they could "jump" in the water, we "dragged" them through the water, splashed, etc.

For the most part C did really well, I was impressed she made it through the whole class...a couple of the other little ones did not. We are really thankful that there are so many services available for Charlie Claire and other families who are in need of Early Intervention.

Maybe next time Grammy TC can come with Jackson and take some pictures! I was able to get one shot of her in her bathing suit for the first time...

Feed Your Faith...

Deficits. I have been thinking a lot about this word since C Bear’s post op appointment last week. 

One deficit we know for sure is Charlie Claire’s vision.  In order to stop CC’s seizures the occipital lobe on the left side of her brain was removed meaning she lost the vision in the right side of each eye.  We knew this going into surgery but we also knew the benefit of the surgery outweighed the risk of losing her right field of vision. We are hopeful though that with some vision “training” and time C will adjust to this deficit.

Jason and I are not ignorant to the fact that Charlie Claire is missing a good portion of left side of her brain and that the surgery comes with developmental risks.  Again, the benefits of the surgery outweighed the risks and without the surgery, the seizures would have destroyed C developmentally. We knew in order for C to have a chance at a “normal” life she had to have the surgery. 

I started this post yesterday but took a break from it and after a walk this afternoon with my precious babies I head a clearer head. This morning I read this….

"Feed your faith and your fears will starve to death. ~Author Unknown"

That quote came at the most perfect time...I thought about it all day and during our walk…while we know that CC is in an “at risk” category we can’t live in fear of that.  Instead, we will enjoy each seizure free moment we have with Charlie Claire and relish in the things she is capable of doing now that she is seizure free.  We will remain hopeful that her remaining healthy brain will compensate for what she is missing and should anything pop up we will do what we have done for the past 6 months…tackle every challenge presented to us and get C whatever she needs to overcome whatever may come her (our) way. 

Before C’s surgery, my friend Julie and I were having a text message conversation (you get real good at those when you don’t actually have the energy to speak) about the risks of the surgery and she said (typed!) “We must have faith that the reward will be great.”

I remind myself of that conversation daily…

Correction!

Mistake on J Monsters stats, thanks for noticing Dad! His height is 27 1/4in not 24 1/4!