Purple Day!

Today, March 26th is Purple Day!
What is Purple Day, you ask?
"Purple Day is an international grassroots effort dedicated to increasing awareness about epilepsy worldwide. On March 26th annually, people in countries around the world are invited to wear purple and host events in support of epilepsy awareness. Last year, people in dozens of countries on all continents including Antarctica participated in Purple Day!"
Check out how Purple Day began here: purpleday.org

We always chuckle when October comes around and it's Breast Cancer Awareness Month - because really, who isn't "aware" of breast cancer? I'm sure the same can be said for most diseases, as well as epilepsy, but I think the "awareness" in Epilepsy Awareness is a little different. It's a silent disorder. Most of you who have met Cameron never saw him have a seizure and would never know he has epilepsy. The hardest part about living with someone who has epilepsy, or having epilepsy yourself is the unknown. Its relatively unpredictable for most people. So, what can you do??? Educate yourself!

So, what is Epilepsy?
Epilepsy is the fourth most common neurological disorder and affects people of all ages
Epilepsy is characterized by unpredictable seizures and can cause other health problems
Epilepsy is a spectrum condition with a wide range of seizure types and control varying from person-to-person
The seizures occur because of a sudden surge of electrical activity in the brain. This causes a temporary disturbance in the messaging systems between brain cells. During a seizure the patient's brain becomes "halted" or "mixed up".

Facts about epilepsy:
1. About 326,000 American children under the age of 15 have epilepsy and 200,000 new cases of epilepsy are diagnosed each year. Epilepsy affects people at different ages and in different ways. For some, it will be a temporary problem, easily controlled with medication and outgrown after a few years, but for others, it may be a lifelong challenge affecting many areas of life.

2. Even with today's medication, epilepsy CANNOT always be cured. Epilepsy is a chronic medical problem that for many people can be successfully treated. Unfortunately, treatment doesn't work for everyone. AT LEAST 1 million people in the United States have uncontrolled epilepsy. There is still an urgent need for more research, better treatments and a cure. 


3. Epilepsy is NOT rare. There are more than twice as many people with epilepsy in the US as the number of people with cerebral palsy (500,000), muscular dystrophy (250,000), multiple sclerosis (350,000), and cystic fibrosis (30,000) combined. Epilepsy can occur as a single condition, or may be seen with other conditions affecting the brain, such as cerebral palsy, intellectual disability, autism, Alzheimer's, and traumatic brain injury.

4. What happens in a seizure may look different from one person to another. However, seizures are usually stereotypic, which means the same things or behaviors tend to occur in a person each time they have a seizure. The seizure behavior may be inappropriate for the time and place, but it is unlikely to cause harm to anyone.

If someone is having a seizure:

Loosen clothing around the person's neck.
Do not try to hold the person down or restrain them. This can result in injury.
Do not insert any objects in the person's mouth. This can also cause injury.
Reassure concerned bystanders who may be upset and ask them to give the person room.
Remove sharp objects (glasses, furniture, and other objects) from around the person to prevent injury.
After the seizure, it is helpful to lay the person on their side to maintain an open airway and prevent the person from inhaling any secretions.
After a seizure, the person may be confused and should not be left alone.
In many cases, especially if the person is known to have epilepsy, it is not necessary to call 911.
Call 911 if the seizure lasts longer than 5 minutes, or if another seizure begins soon after the first, or if the person cannot be awakened after the movements have stopped.

Cameron was sick with a fever and vomiting early this week and for the first time in his life, did not have a seizure when he was feeling under the weather! We feared it, because the last time he had a fever we ended up in the ER. What a relief! We're truly thankful for the work and help that the doctors at CHaD have provided us. You can check out how they help kids with epilepsy here: CHaD Kids

Sources:
Medical News Today
Epilepsy.com
Seizure First Aid

A look inside

There is an awful lot that goes on inside the brain of a three year old. There is singing, there is counting and spelling, there is pretending and imagining -- hundreds of thoughts streaming through those little cells all to create the non-stop, constantly-on-the-go, inquisitive preschooler that we see day to day.

Yesterday we got to see inside Cameron's brain, that is, by way of MRI. We arrived at CHaD's Pain Free area at 9:45am for Cam's 10:30am MRI, only to find out that they were running about 45 minutes behind. We got our hungry bellies comfy in the family waiting room and Cam decided it would be fun to take on a 550 piece puzzle, which really meant Mom and Dad do the puzzle while Cam throws the pieces around and loses interest in the first 10 minutes.

Success only long enough to build two houses, which I'd say is a good accomplishment for 40 minutes of puzzle-ing.

So we entered into Pain Free where the resident anesthesiologist checked Cam out - who has a cold, of course. We knew going there that there was a chance they couldn't do the anesthesia because of his cough & cold, but they said there is no way to know until we get there. The resident decided it would be best to have the doctor check him out, so we waited a little longer until Dr. Hillard came in. I was playing on the floor with Cam and Shawn was in the bathroom. He walked in and says "Hey guys! Nice to see you!" I looked up and must have seemed curious about him because he immediately asked if I remembered him...which I didn't. He then reminded me that he was the doctor who monitored Cam during his surgery! I apologized for not remembering him, as it was obviously a crazy day and we met a lot of people, but Dr. Hillard wanted to know how Cameron was doing. I told him that he's only had one seizure since the surgery, but that it was when he had a high fever, so Dr. Morse is confident that it was related to that. Dr. Hillard was thrilled and said that it was so good to hear the surgery may be a success and he felt really proud to be a part of a potentially life-changing event for Cam. Such sweet words to hear. :)

In the moment, it was equally good to hear that he felt Cameron's airways were clear, his lungs sounded good and he felt he was good to go for the MRI. Phew! We really were hoping to avoid driving up another day for it again. Cam is kind of a pro at this point and went right into the room, hopped up on the bed and laid down. He decorated his watermelon-scented mask with dinosaur stickers and fell asleep. A little over an hour later we met him back in Pain Free and shortly after were sent downstairs to see Dr. Bauer.

This is Cameron's right brain:

The area Dr. Bauer is pointing to is the hippocampus - the worm-looking thing. It's defined and formed well, just as it should be. Everything looks and has looked good on the right side of his brain.

This is Cameron's left brain, post-surgery:

Its pretty obvious to see that the whole central section is missing, which is good. Previously that "worm" on the left side was all globular and misshapen, round and unclear - not very worm-like, as it should have been. The main point of this MRI was for Dr. Bauer to be able to make sure he retracted everything he intended to during the surgery, because unlike an orthopaedic surgeon, they don't have clearly defined areas like an arm or a leg that they are working on. After reviewing the MRI he was confident that he had removed everything he wanted to and he was pleased that Cam has nearly been seizure-free since. He mentioned that his scaring, specifically down by his ear where it's still dark and raised, will get better, but it won't disappear. The hypersensitivity that he's having on his scalp should decrease over the next 9 months. All in all, we were happy to hear that we will likely not have to see Dr. Bauer again, barring any unforeseen complications (knock on wood) in the future.

I saw this and felt like today, of all days, it really rang true. So often we'd heard "I don't know how you guys do it." or "This must be so hard." It was, and it still is, but Cameron is such a smart, energetic, enthusiastic, loving and incredible little boy that we know we'll look back on everything he's been through and everything we've gone through and see that it has made us stronger as a family and really shaped the way we deal with struggles and obstacles. Spending time at CHaD puts things into perspective when you see families with children who are dealing with such bigger issues than we have.

Three Months

Yesterday, January 30, 2014 marked the three-month point from Cameron's brain surgery. Three months means his brain has likely healed from the operation and his skull has also healed up. Running your fingers along the side of his head, you can clearly feel the bumpiness of the disintegrating plate that was used to help fuse the bones back together. If I remember right, it takes 3-6 months to fully dissolve and while doing so, it forms bubbles as it absorbs fluid and breaks up. The incision remains pretty red in most spots, but is slowly being covered up by his rapidly growing locks!

This was taken November 18th, just over 2 weeks post-op.

Here he is, just about 2 months post-op enjoying his seat on Grandpa John's new couch. :)

And I just took this picture this morning while enjoying some Jake the Pirate time - you can see how much has changed in the last few months. I actually think he might need a hair cut soon!

::Knock on wood:: We can happily report that Cameron has suffered from just one seizure post-surgery when he had a virus that caused a high fever in November. He's sick today for the second time since October 30th, so he's home from school resting, drinking lots of fluids, eating extra fruit and hoping to feel better quickly! Sickness brings on a whole new feel of anxiety when there's a fear of seizures and ER visits, and loopy-dizzy-child creating medications. So we ere on the side of caution and I take a sick day to hopefully prevent all of the above!

Cameron has a follow-up MRI scheduled for March 11th, followed by an appointment with Dr. Bauer (Neurosurgeon) later in the day to check on how the surgery worked, from an internal view. He will see Dr. Morse (Neurologist) in April (unfortunately, this follow up was supposed to be in February, but his schedule is really jam-packed).

In other news, the surgery seems to have helped Cameron in more ways than just (hopefully) becoming seizure free. in December we had a meeting with Cam's Preschool teacher who said he seemed much more balanced, aware and less impulsive. I think I mentioned before that he was meeting his PT goals within the first week of being back to school! He's well behaved and pays attention more, and his teacher said he's cognitively at the level of a 4.5 year old! Go Cam!

We wanted to send a huge thank you to everyone as we begin to (finally) get the bills from Cameron's operation and hospital stay - the donations we received have covered the cost entirely, as well as cost from his PET scan, SPECT scan and likely the MRI in March! We are eternally grateful for all of the help and assistance we received from each and every person and family. We honest and truly cannot say thank you enough!

Here's to a healthy, happy, seizure-free New Year!

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!!!