Six Week Post-op & an ER Visit

I'll start this 6-week post-op update with the news that Cameron has been doing remarkable! We had our first Parent/Teacher Conference last Friday (Dec 6th), where Cameron's Preschool teacher told us that he has seen vast improvements in many of his skills socially and with his movement, not only from the start of school, but even more so since his surgery. He said he's noticed that he's not quite as impulsive as he had been before, meaning he'd be much more likely to walk up to another student and take a toy out of their hand, but he hasn't done things like that in the last month, really. He also has met some of his goals in physical therapy since surgery - for instance, he did a 1/2 kneel on his right foot, which he had previously not done because his right side was so much weaker and unbalanced. Most people who have interacted with him have noticed how much better this gait pattern is. He's not falling nearly to the extreme that he used to, and he's overall more balanced and confident in his movement. We're pretty sure it's not a coincidence, but we haven't had another appointment with Dr. Morse to discuss it. He had mentioned prior to the surgery that it's possible once they removed the sections of his brain that weren't functioning, it might help other areas to work better. Shawn likes to describe it like a surge protector. If your surge protector stops working, that doesn't mean your TV, computer, DVD player, etc. aren't working, they just need to be plugged into a different outlet. We're hoping that this really is what is happening!

I really had hoped to write this post saying that Cam hasn't had any seizures since his surgery, unfortunately his streak of 5 weeks and 4 days ended on Sunday night. He came down with some sort of stomach bug on Sunday and spent the morning throwing up. Throughout the day we had him resting, watching movies, etc. I went to put him to bed Sunday night and he felt really warm, so I gave him some Tylenol for the fever. Every night when he goes to bed, he sits on my lap and we pray. While he was sitting with me, he jumped, like he was scared of something. So I asked him if he was okay, and he didn't answer. I turned the light on and he looked fine, so I turned it back off and he says "Mom, I said yes." So, we continued to say our bed time prayers, then I picked him up to put him into bed and he was completely limp, totally dead weight in my hands. I laid him down and reached to turn the light on and no sooner did I turn around that I realized he was having a seizure. It happened so fast, and was the worst, most severe one we'd seen. He was unconscious and having a hard time breathing because his mouth was full of saliva. Normally we're supposed to wait 5 minutes before administering the Diazepam, but neither Shawn nor I felt comfortable waiting, so we gave it to him 2 minutes after it started, it took another 4 minutes to stop. In those 4 minutes we got in touch with the Pediatric Neurologist on call at Dartmouth who wanted us to take Cameron to the ER. We've never taken him to the ER for his seizures except for the very first time when he got admitted and diagnosed, so this was a little odd for us. The Dr wanted to make sure there was no underlying problem, because Cam had had a cold, so if he had an upper respiratory infection, or something related to his surgery, it needed to be addressed.

He checked out fine for any signs of meningitis or a UTI, which would be their worries related to his surgery - the ER doc told us it was highly unlikely that he'd have an infection related to his surgery after almost 6 weeks, but they check it all just in case. They also did a chest xray that came back all clear. We spent almost 4 hours in the ER, and were sent home around 12:30am with an order to alternate Ibuprofen & Tylenol to keep his fever down, and to check in with Dr. Morse's office in the morning. The poor kid was so drugged up from the Diazepam, Tylenol and they gave him Motrin in the ER, that he passed out in the loud, busy ER and didn't really wake up until Monday morning. (You can see in this picture that his incision is healing great, too!)

Monday morning, Shawn and I both stayed home to find out what DHMC wanted us to do. We had to go get his labs done, which is a two person job, and wanted to make sure he was okay. Throughout the day he was on & off with the fever, even with being on an alternating dose of Tylenol & Motrin. DHMC decided they wanted Cameron to be on a round-the-clock dose of Lorazepam, which is the medication we used to give him if he had a couple small seizures in a day. The Dr wanted him to take it 2x on Monday, then once in the morning and once at night on Tuesday, regardless of whether he still had a fever or not, as a preventative measure since his seizure threshold was obviously really low. We were willing to do whatever it takes, even though it meant Cam was basically going to be a bit drugged up for the next two days, it was better than the alternative.

When I talked to the nurse, I explained what had happened and the first thing she said was "Oh Cassie, that's heartbreaking." She said not to panic though, that this seizure certainly doesn't mean the surgery didn't work. Their thinking is that his brain is healed enough from surgery for his day-to-day activities to be manageable, but the stress of a 102 fever was too much for his brain to handle so soon after surgery. We are optimistic that it really was just caused by the fever!

Meanwhile, it's Wednesday now so he's no longer on the Lorazepam, thank God - it made him so loopy and even more unbalanced that he had been before! We were sitting at the table eating dinner last night and Shawn & I couldn't help but laugh at some of the things he was saying and doing - he was like a little drunken sailor. Luckily, he hasn't had a fever since Monday night and he's getting back to normal. :)

Excellent!

Using this post as a way to help myself stay awake while watching the Patriots game tonight!

Cameron had his post-op check up today and it was a wonderful appointment. We saw Dr. Scott Lannon who said that Cameron looks "excellent". He told us that Dr. Bauer was going to be thrilled to hear about how well Cam is doing! He said his incision is healing beautifully and even said out loud "Wow, he did a great job with that!" - I'm thinking he was referring to Dr. Bauer's handy work. :)

After we came home from the hospital two weeks ago, we noticed that Cam seemed to have some increased sensitivity to a few of his senses. For instance, he would be nearly in tears when the sun was in his eyes, always needing his sunglasses or pulling his hat down as far as he could get it. He also loves water - swimming, showering, bathing, playing, etc. After his surgery he wanted nothing to do with it, he kept telling us the water was too cold. We had no idea if it was just coincidence since he hadn't been allowed to shower for a week or if something had changed. Dr. Lannon told us today that sometimes after brain surgery kids can have "pseudomeningitis", meaning he has symptoms that simulate meningitis, but there is no actual inflammation of those membranes, and the symptoms gradually go away. He doesn't have these sensitivities any more, so there is no worry that it was something more serious.

He's had a great few days back at Preschool, and when we went to pick him up early today, we saw they had taped The Sentinel's article to the front door (we don't normally go to the front door because they come get the preschool kids from outside). The woman in the front office told us a nice story about her foster daughter who has been seizure-free for 15 years since having a similar surgery when she was a teenager. It's always so nice to hear success stories from people who have shared similar experiences.

We've had a great two weeks spending some serious Q.T. with Cameron. We've taken him to two local high school football games (albeit, both home teams lost...), and he loved every second! We visited Shawn at work and ran around the news room, watched a few movies and a lot of Sesame Street, made a scrap book and spent a lot of time playing. We were so happy to hear that he is healing right on track!

His incision is looking great, too. He hasn't worn one of his hats in two days, but did tell the doctor today that his head is itchy. He hasn't been touching it or picking at it much though! He really is a trooper.

We will have an appointment to see Cameron's Neurologist - Dr. Morse - in January, and we see the Neurosurgery team again in Feb/March. It's routine for them to do a follow-up MRI three months after surgery, so Dr. Lannon said he'd schedule that himself. If everything looks good, then Cam will follow up with Neurosurgery yearly. Dr. Morse will still be seeing a bit of us for awhile though! Cam has had no seizures ::knock on wood again:: and we are hopeful that will continue!

We have been blessed with the opportunity to have another benefit fundraiser organized for us this Wednesday, November 20, 2013! This time it's in my hometown of Pawtucket, RI at Sullivan's Publick House. It's a really awesome place that does Community Pint Nights on Wednesdays, where a keg is donated by a brewery and proceeds from the $3 pints are donated. My cousin Meaghan and her husband Greg, among others I'm sure, have organized some fantastic raffles including a 2013-2014 Official Boston Bruins team autographed hockey stick! (SWEEEEET!) I will be there, but unfortunately Shawn won't be able to make it down as Cam still has 18 years before he's allowed in a bar. ;)

Again, thank you for the continued support! Go Patriots!

Two Weeks

Two weeks. Really, that's what it takes to recover from brain surgery. Whaaat?! We are one day shy of the two-week mark and let me tell you, if I didn't see the incision and experience the hospital stay for myself, I wouldn't ever guess Cameron had just had surgery! I'd say he's 90% back to normal. He hasn't had any pain medicine (Tylenol or Motrin) since Saturday and has only needed the "strong stuff" once last Sunday. If we ask him how his head feels, he answers "Happy!". He's mentioned once or twice in the last few days that his head hurt and he points to specific spots along the incision, but we suspect it's more the incision healing than him having a headache. He was very fast to get worn out for the first week-or-so, but that's fading now. We have been giving him a little extra TV time in the afternoon to help him wind down if he's been outside playing or running around the house.

With him acting so much himself, it seems silly that Shawn and I still have to take days off to keep him at home, but we were told months ago that he needs to be limited for at least two weeks. Even though he feels okay, his brain and head still need that crucial healing time. He also will be fairly limited for the next three months. He cannot climb on any playgrounds or do things like ride his bike or scooter for three months. It's dangerous if he falls from any higher than his own standing height, because it could cause much more serious trauma than it would normally. They didn't use any metal to put his bone back into place, instead they use a type of sugar-based plate that dissolves over about three months. So interesting! Dr. Lannon told us that the plates are about as strong as titanium and they absorb the fluids which help them to break down over time while the bone heals. He's fine if he hits his head or falls while running, he just needs to be careful doing anything more intense. He'll be going back to Preschool tomorrow, so we've talked with his teachers who know about everything that has been going on and are aware of his limitations for the future. We're thankful for their help and willingness to give Cam the much-needed attention, especially outside where he's certain to try and climb on the playground or get a little rowdy! We took him to my high school's football game this weekend and he had a blast! He was a little tired by the end of it, but it was fun watching him watch the players, then throwing our football back and forth, oh and drinking hot chocolate and eating popcorn...duh! :)

Upon leaving the hospital, the nurses and doctors had given us these sleeves to make Cam some hats to protect his incision. They don't put bandages on it because they are impossible to keep on and more of a nuisance than an aid. These sleeves are flesh colored, and meant to hold bandages on, but they made Cam look like a sick little kid. :-/ So, I went to JoAnn's Fabric and got some cheap cotton/spandex material to stitch some little hats together for him. He's much more comfortable wearing something on his head, and while we don't want him to be embarrassed about the big incision, we know it'll only take one person saying "Oh my! What did you do to your head!?" for him to be completely aware of it. So we wanted him to have some hats that he was comfortable wearing, that didn't look like they came from the hospital. So far, his favorite one is the Red Sox Victorino hat. Big surprise! :-P

Going forward, it is not uncommon for someone who has brain surgery to continue to have seizures for awhile. Because they dramatically changed the anatomy of Cameron's brain, it'll take some time for his brain to get accustomed to how it should function again. Luckily, he has had no seizures in the last two weeks! ::knock on wood:: He will continue to be on the same anti-epileptic medication for probably the next year. We have his follow-up with Dr. Lannon and Dr. Bauer next Monday, Nov 18th and we expect they'll say Cam is ready to resume his normal schedule and activities!

After the overwhelming amount of support that Cameron has gotten from family, friends, friends of friends and complete strangers, I decided I wanted to make Cam a scrapbook showing his journey and documenting as much of it as I can for him. My mom went with me to Michael's last week (Thank GOD for coupons!) and I got most of the supplies I needed. I got a lot of the scrapbook done this weekend, so I wanted to share some of it -- a virtual sneak peek, if you will. :)

This is showing the start of Cameron's journey - April 14, 2011, the day he was taken by ambulance to CHaD.

The day of his surgery - 10/30/13

I tried to get a snapshot of each and every Facebook comment from WHDH's post. There were so many, I wanted to make sure someday Cam could sit down and see how many people from all over the country were routing for him!

Kyle's awesome story in the Sentinel about Cameron and Shawn's tweet. So fun to see this on the front page of the paper the day we came home from the hospital!

Cam still talks about how he was on TV! Such a memorable experience for us all, and a great distraction after an incredibly stressful day.

The tweet that started it all, and Shane Victorino's reply. I couldn't get the hundred-and-something replies/comments/messages to Shawn from everyone, so I got the ones I could. Still so awesome to read!

I'll continue to post updates as Cameron has follow-ups and more tests to monitor how the surgery went. Thank you all again for everything you've done! We're so optimistic that this is the beginning of the end for Cameron's epilepsy. Happy Day!

CUE THE DUCK BOATS!

Sitting at home, watching the Red Sox World Series Parade and feeling so, so thankful for everything that has happened this week! (As I type this, Channel 7 News, reporting on the Sox Parade, just mentioned how Shane Victorino is a fan favorite and lifted the spirits of "a little boy in NH"!)

Tuesday afternoon we drove up to DHMC for Cam's pre-op appointments. We talked with Dr. Bauer and Dr. Scott Lannan -- Dr. Bauer's APRN -- all about what would be happening the next day, really hammering out the schedule for Cam's surgery. We had to be back to the pre-op area at 6:30 a.m. on Wednesday, so we left and got our room at David's House, let Cam play outside for a while (they have an awesome playground) then enjoyed our night together.

Wednesday morning we arrived to the pre-op area and were taken back to get Cam changed, then he got to play in their playroom while the many doctors came in to ask us questions and introduce themselves. By 7:45, I was riding on his bed with him into the OR. He got to play with an iPad while he got the anesthesia. Luckily they were able to avoid drawing blood or putting his IVs in until after he was already asleep. From there, he was getting all set up for surgery, then having an MRI, then being taken right back into the OR. The day was long -- Shawn and I spent most of it with his parents, Faith and Mike, playing games, walking around, eating breakfast and lunch. At 1 p.m., we got an update that they had finished the retraction of his brain and Dr. Morse was being brought in to place some electrodes to try to get some EEG readings from other areas of his brain, and they would be closing up shortly.

At 2:30 we were paged again, so Shawn and I (quickly) walked over to see Dr. Bauer walking around the corner with a big smile on his face, and we were able to let out a huuuuge sigh of relief! He brought us into a consult room to let us know that everything went great. The removal of the sections of his brain were very routine, nothing surprising. When they placed the electrodes they saw no obvious seizure activity, but did see a little "irritation" in the back section of his brain -- they're not sure if that will clear up, or really what it meant, but they weren't worried about it. Cameron was then taken down to the Pediatric Intensive Care Unit, where Shawn and I met him shortly after. He was crying a lot, very groggy and didn't even open his eyes for probably a solid hour after getting out of surgery.
I had leaned over his bed to give him a kiss and he wrapped his arm around my neck and didn't let go for upwards of two hours. I treasured the moment, but man, did my neck hurt after that! Haha

Throughout the day, he was really groggy and grumpy. He cried quite a bit about how his head hurt, so they gave him morphine and we tried to keep ahead of it as much as we could. That night, we were getting excited to watch the Sox game, and were hoping for a World Series Championship!
This was our setup:

And this was the picture that started Cam's face being shared across the country!:

We were so excited that Cam was starting to feel better, smiling a little and talking some, snacking on crackers and drinking a little water, then the game started and Shane Victorino smacked that three-run double to start the game, it was really a special moment. Cam has cheered for Victorino all season, most of you know, because he's #18 -- Cam's favorite number. At that moment, we were so happy and so excited! Cam had already fallen asleep, so I leaned over and whispered in his ear "Victorino got a hit, bud!" Then Shawn decided to share the moment on Twitter, and from there the whole situation was an absolutely awesome distraction for us while Cam was still in the PICU! The first night was a little rough, Cam had woken up around 2 a.m. crying, so they gave him some more morphine to help him sleep, then around 5 a.m. I noticed that he had completely soaked his bed -- the nurse said because of all the fluids he was getting, diapers fill quick. So we had to pick him up and change all of his sheets, which didn't go over too well. After we laid him back down, he was pretty inconsolable, crying because his head hurt so much, so they gave him a "breakthrough" dose of morphine. From there, he slept pretty well into the morning.

Throughout the day, we really just tried to manage his pain. He's on steroids too, which makes him very emotional, so he was really weepy and easily upset, but overall pretty good. Mid-morning Dr. Bauer came in to check in, and suggested Cam get up and go to the playroom! He was all about it, until he pulled his blanket off and was covered in blood! His IV had slid out, but his hand was under his blanket so we didn't see it! He was fine, but didn't end up getting up and out. We worked all day on trying to just get him to sit up, but it was pretty painful for him. In the early afternoon, a woman came in and asked for Shawn. She said there was someone from Media Relations on the phone for him. We had NO idea what was going on, but then Shawn's cell phone started ringing -- it was his boss, Paul, from The Sentinel!

I answered it, and Paul was laughing -- he said that Channel 7 News from Boston had called The Sentinel looking for Shawn, they wanted to talk to him about a tweet he sent! That tweet had almost 300 retweets, almost 400 "favorites" and over 100 replies -- some by major sports guys from WEEI, NESN and WBZ! We couldn't help by giggle about the whole situation. Channel 7 News set up a satellite interview for Shawn to go to Dartmouth College and talk to them. We organized some pictures of Cam to send and told Cam he was going to be on TV! It was so fun to see, and we even had nurses coming up to Cam and telling him they had seen him on TV! WHDH Article and Video

Then The Sentinel did a story about what was going on, so Cam's cute face was plastered on the front page of Friday's paper! What a fun treat to come home to! Thanks Kyle, for writing such a sweet story about him! Keene Sentinel Article

Thursday night Cameron was transferred upstairs to the Pediatric Unit in CHaD, though the room was smaller, we were more comfortable there, as we know that floor pretty well, and know some of the nurses too. He had a pretty good night sleep and the next morning, Dr. Lannan came in and said that if Cam got up and moving, he could go home that day! He told him about a race car video simulator they had on the floor that Cam could go play in! Within minutes, Cam had sat up for the first time since Wednesday, and was climbing off the bed to go check out the race car!

We really think he could tolerate a lot more than he thought he could on Thursday. Once he was up, he didn't stop for about an hour...then he crashed! Haha. He slept for two hours after that and while he was napping, we got the okay to be discharged! They were able to get oral steroids, which was the only med he still had by IV.

We've been truly blessed this week, by the surgeons, doctors and nurses, our family and friends, and people from all over the country wishing Cam well, praying for him and truly showing us the most incredible amount of love and support that we could have ever asked for! Cameron is one lucky boy, that's for sure! Cameron is doing great right now. He's very easily worn out, but has been in an awesome mood all morning. He's very giggly and has his silly sense of humor back! We're so proud of him and how well he's dealt with everything this week. He's a strong little monkey!

"Don't worry, about a thing. Cause every little thing is gonna be alright." - Thanks Shane!!!

Mohawk!

This weekend, as we prepare for Cameron's surgery on Wednesday, we went to go get his hair cut! Thank you SO much Dar (at Creative Styles in Swanzey, NH) for being the best Mimi and always making Cam so excited for his haircuts (and watching Sesame St, or playing games, or snuggling in bed)! We decided to have him get a mohawk because they'll be shaving one side of his head, so we figured we'd just start off symmetrical and cut the other side too!

Just before we got there, Shawn decided he'd see if Dar would have time to give him a mohawk too (and she did!) so now they match - and Cam loves having the same haircut as Daddy!

Once they both had their hair cuts, Cam promptly stated that it was now "Mommy's turn!". Sorry, no pictures to share of my mohawk. ;)

We have to head up to DHMC on Tuesday afternoon for Cameron's pre-op appointments, blood work and meetings. Then we'll be hanging out that night before getting admitted at 6:30am on Wednesday. We'll surely keep everyone updated this week! We're so thankful for the continued prayers, notes, donations, love and support. <3

GO RED SOX!!!

Incredible Generosity

There is absolutely no way to express the magnitude of thanks that we have for the generosity, support and love shown to us and to Cameron. As we sit here on Sunday, ten days before Cameron's surgery, we know we are truly blessed with an incredible support system and we can focus our energy on helping Cameron before and after his surgery - without worrying about missing work. The CYRiously Cameron's Pasta Dinner, organized by Meaghan, Sam and Becca was outstanding! Shawn and I were overwhelmed by the number of people who came out to the dinner, and by those who donated or bought tickets even if they couldn't make it over. We had so much fun hanging out with everyone, laughing, chasing kids around and eating delicious food donated by Spumoni's Restaurant in Pawtucket, RI and Ramunto's in Keene! Along with the always mouth-watering cupcakes by my very own Awesome Auntie Pattie! :) They collected so many amazing raffle prizes, really, they were fantastic! It was honestly above and beyond anything we could have ever asked for or expected. The entire day was fantastic, from start to finish!
Here are some pictures from the day:
Cameron and I made these signs to help people find camp!

The delicious cupcake display!

I don't know what we did to deserve to have these people in our lives, but we are truly lucky! Meaghan, Sam and Becca (and Caleb!) - The minds behind the operation. :)

So many friends and family came to support us! We sure feel the love <3

A little blurry, but I couldn't leave this one out. Cam modeled the hats and scarves that were part of the raffle. Haha!

Shawn talked to Dr. Bauer on Thursday evening to get some of our little detail questions answered. We wanted to know just a few things.
1. How long will the surgery take?
We actually have to get to DHMC the day before his surgery, so we'll be going up on Tuesday Oct 29th to do all of Cam's pre-op "stuff" like a physical, blood work, last meeting with Dr. Bauer (and probably Dr. Morse). That's all at 2pm, then we'll hopefully be spending the night at David's House (http://www.davids-house.org) because Cam will be admitted at 6:30am on Wed. Oct 30th. He needs to have an MRI right before the surgery, so they'll be sedating him just once for the MRI and operation. Dr. Bauer suspects it'll take 3-4 hours total. He'll likely spend at least the first day in the Pediatric Intensive Care Unit, then transferred to CHaD, then hopefully home by Saturday!

2. Should we shave his head?
Dr. Bauer said normally they try to hide the incision in a girl's hair, but it's much harder for a boy with short hair, so he said it would probably be good to shave it. Then Cam won't be so shocked when he sees he's missing hair on half of his head. We're thinking of giving him a mohawk. -:)

3. What exactly should we expect in regards to recovery?
He's suspecting that after the first week and a half Cam will be okay to go back to Preschool, since he only goes for 3 hours. He wants him to wait at least 2 weeks before returning to a full day of daycare, but even then, we'll have to just see how he's doing. We live so close to his preschool that we can just go over in about 2 minutes to pick him up if he was having a hard time, but daycare is a little further away.

As nerve-wracking as it is, and as fast as it is coming up, we are looking forward to this opportunity to give Cameron the chance to change his life. While it's still about a 50/50 chance, it's certainly better than nothing.
Again, we can't say thank you enough for absolutely everything from the dozens of people who have poured out their love and support for us. We'll continue to keep everyone updated as the day approaches!

Speechless.

Shawn and I are feeling overwhelmed with thanks over the outpouring of love during the last few months, and especially the last few weeks. When people are put into tough situations, you hear the word "deserve" come up again and again. That we "deserve" the help, or -- that, like Cameron -- we "deserve" to be taken care of, too. Never once did (and we still don't) feel that we "deserve" anything from anyone. We are parents. We are doing everything that we can to make sure Cameron gets the best care and has the best opportunities available, just like every other parent would, be it brain surgery or choice of crayons! Talking seizures and surgery have become part of our daily lives over the last two and a half years. My mom reminded me recently about a time around two years ago after Cam had had a bad seizure. I used to cry and worry and call my mom (yep, I'd call my mom - thanks Mom!) almost every time Cameron would have a seizure. She had told me once that some day it would become second nature, that we would just get used to it, as we had already learned that Cameron would probably not just "grow out of" his epilepsy. Two and a half years later we are discussing brain surgery without (too much of) a flinch.

I wish everyone could meet Dr. Bauer and Dr. Morse! For two men who do most of their work dissecting children's brains, they're incredibly confident and really put us at ease each time we talk with them. Cam had his 3 year check up recently and his Pediatrician, Dr. Eric Goodman, had said that he could never be a brain surgeon because, "It's scary!" Damn right it is, but it's worth it if Cameron can go on to live a normal life afterward.

He has started physical therapy at preschool now! We got an email from the PT at school with a little update. "Cameron's motor output is a bit variable. Last week his right leg seemed weaker and he was having more incidences of tripping and just a tougher time in general moving in the classroom and during therapy. Each week he shows greater ability to participate in P.T. more readily. He is a delight!!!!!!!!!!" He's also become a regular at the nurse, like a daily regular. Cam told us today that the nurse has "books and a cool ice pack!". Haha...

We wanted to send a big shout out to the First Presbyterian Church in Ogdensburg, N.Y. Shawn's cousin Becky had her church do a "prayer bear" for Cameron. They pass this cute teddy around church and each person says a prayer for the person to whom the bear will be sent. Such a special gift, and Cameron loved it! Thank you all!

Last night I got a call from a couple of my best friends: my cousin Meaghan, high school BFF Sam and (well, they tried to get Becca, but she lives in the woods and barely has cell service :-P) to let me know that they had organized a benefit dinner for Cameron. I was speechless. We had never even thought about people wanting to help us. As I said before, we are parents. We do what we have to do for Cameron, and we make it work as best as we can. We want everyone to know that we are in absolutely no way expecting, anticipating or hoping people would or will help us. The thoughts, prayers, cards, etc., have already exceeded our expectations. We are honestly and truly so grateful for everyone's willingness to help!

I promised the girls that we would help spread the word about the dinner! Meaghan created this site to get information about the pasta dinner and to purchase tickets. http://cyriouslycam.eventbrite.com I know they've already organized a bunch of raffle prizes, ranging from clothing to baked goods to gift certificates. Best part is, by purchasing a ticket to the dinner, you automatically get two raffle tickets! It's also the day of Keene's Pumpkin Festival, so if you're in the area and want to swing by camp, or if you're not and want to come to Pumpkin Fest and have yummy food, we'll surely be making our way there. Bring pumpkins to carve too! :)

A page on Go Fund Me was also created for anyone who wishes to contribute directly to Cameron's medical expenses.
http://www.gofundme.com/CYRiouslyCam

We are so lucky and feel so blessed to have so many people in our lives that love Cameron and want to help. Thank you all, from the bottom of our hearts! We really can't say it enough.

HOME!

Well it sure was an unexciting week. As odd as it sounds to say this, sadly Cameron had no seizures at all while we were at CHaD. We had lowered his medicine the first day to half the dose, and completely cut it out on Wednesday and today. The nurses said a few times that they saw some "spikes" happening on the EEG, but obviously nothing that was big or strong enough to cause a seizure. Go figure. With Dr. Morse on vacation this week, we don't know exactly what they want to do, if they want to do anything at all, before the surgery. Doing the SPECT scan is not mandatory for the surgery that they have planned - it was more for "bonus" information, if they could get it. Mostly just to confirm what they already know. Always better to have more information than not enough!
Here's a look at Cam's EEG. It was running 24hrs while we were there.

That said, we won't go back up to do the test again. We could have potentially stayed for one more day to try it again, but with Cam off his medication, he has a high chance of having a seizure due to withdrawal from his medicine, rather than it being an epileptic seizure. If that had happened, it wouldn't show the docs what they want to see, because a seizure due to withdrawals would not come from the "problem" area in his brain. We were all getting a bit stir crazy too. Cam wasn't eating well, we suspect because he wasn't moving, he was bored and sick of that room - heck, I wasn't hungry once. Being forced to sit in a bed when you're three, or 25, or 85 is hard. (Here's Cam having some alone time on his bed. Most of the time either Shawn or I were sitting with him.)

Luckily we did get some visitors! We had Ginger, the Yorkie on Tuesday, then Brody the Yellow Lab came to visit him yesterday!

We got some cupcakes from Meme, and Grandma came to visit too!

Then today Matt came up and brought some Playdo and new trucks!

He did have a vision test with the Pediatric Ophthalmologist - Dr. Erin Salcone at 2:45 today, right after being discharged. Unfortunately, Cameron was pretty darn restless and not exactly thrilled about having his eyes dilated.

She did as best as she could and said that she suspects no obvious abnormalities in his vision. Doing an actual Visual Fields Test requires the patient to sit and look into a "bowl" (as she called it) and press a button whenever they see a light. The test is a little too advanced for our, otherwise genius child. :) She said his optic nerves look great and his eyes are perfectly aligned. She doesn't suspect he would have any problems post-surgery. Good to hear!

While we are disappointed that our entire week spent at Dartmouth sort of ended up being a waste, we do know that Cameron's nurses and doctors are doing their very best to take care of him. They all love him up there! When we walked in on Monday, one of the neurology nurses came in excited and saying "YAY! It's my favorite patient!" It's always nice when other people like your kid too. ;) We were able to schedule his surgery for October 30th - he'll be trick-or-treating at CHaD! We should hear some time early next week about what Dr. Morse and Dr. Bauer discussed related to what EEG info and eye test they have. At this point, hopefully not much changes.

Here's a few more pictures from our stay at "hotel CHaD".
After the IV team had to stick him 5 times, the guy gave him the flush for his IV. This turned into a squirt gun the next day...

His head got a little breather yesterday afternoon when they decided to give him a new "hat" because the wrap was sliding off so much. Nasty hair!

Unfortunately, Cameron didn't get to see this, but they had Super Heros cleaning the windows at CHad! How awesome! They didn't go around the outside of the entire floor (can't blame them, in those suits), and since Cam couldn't leave his room, Shawn got some pictures for him instead.

Also wanted to share this one last thing. I found this when reading some stuff earlier.
"Dartmouth-Hitchcock Medical Center (DHMC) has been designated as a Level 4 epilepsy center by the National Association of Epilepsy Centers (NEAC). The Level 4 designation is applied to hospitals and medical centers that provide the more complex forms of intensive neurodiagnostics monitoring, as well as extensive medical, neuropsychological, and psychosocial treatment, according to the NEAC. Fourth-level centers also offer a complete evaluation for epilepsy surgery, including intracranial electrodes, and provide a broad range of surgical procedures for epilepsy. DHMC's Epilepsy Program, the only Level 4 center in northern New England, meets all of those criteria, says Program Director Barbara Jobst, MD. "Level 4 designation recognizes progressive and innovative epilepsy treatment. We're delighted to have this national recognition for the high-level epilepsy care that is delivered by the Dartmouth-Hitchcock Epilepsy Program." I'd say we're pretty lucky to have the help of Cameron's doctors at DHMC.

Day 1 - SPECT

3:55pm, 24 hours after checking into the Children's Hospital at Dartmouth (CHad) and we don't have much to report.

Last night shortly after being admitted, the EEG team of 3 came to get Cam all hooked up. He did a great job laying down and watching Elmo's World while the team quickly got him set with his cool "hat" and "backpack". Then, after much deliberation within the Food Services Dept, they finally decided that it was okay for our three year old to have a hot dog, mac 'n cheese and carrot sticks for dinner (his choice).

We met with Cameron's old neurologist, Dr. Linda Specht, because Dr. Morse is on vacation this week. Dr. Specht had been Cameron's doctor until recently when she decided Dr. Morse was better off making surgical decisions for him. She was sure glad to see him though! Around 9pm the IV team came to get his IV set. THAT was an adventure... Five sticks later and they finally got it. Poor Cam keeps telling everyone about "the guy that pinched me and made me cry". They tried to make it up to him by giving him about 20 stickers. It might have helped him a little, but it wouldn't have helped me! He's a trooper, for sure.

He got half of his normal dose of his medication last night and half again this morning.

At 8am, our favorite neurology nurse came and spent the morning with us. The way the SPECT scan works is he is connected to an IV for 6 hours. Once he has a seizure the nurse injects an isotope into the IV that highlights the seizure activity in his brain, then he's taken to the SPECT machine for the scan. The IV tube is only 5 feet long - sounds like a lot, but its connected to a machine, then goes across his bed and into his arm. This gives him about another arms-length of space to move...Not much when you're three! We started watching videos, playing with cars & trucks on his bed, playing with his Leap Pad, etc. They even had a puppy come sit with him in bed for a few minutes!

The six hours past with no seizures, but man was it a relief to let him get out of bed! Shawn went and got him a basketball hoop from the playroom and some trains. He can't leave his room because he's connected to the EEG. Slightly claustrophobic!

Tonight and tomorrow morning we are skipping his medicine all together and hope to cause "an event" - as they call it, during that time tomorrow. They're also trying to plan for the Visual Field Test tomorrow. Fingers crossed!

Thank you ALL for your kind words, prayers, thoughts, offers, questions, etc. We have certainly felt the love!