Charlie's First Black Eye

Please let me start by saying I'm going to set the stage for what I'm about to share with you in hopes that you'll all show me a little compassion and understand where I'm coming from while I explain Charlie's first black eye.

First, it's no secret that Charlie is an active little bugger. Anyone who's spent more than ten seconds with him can vouch for that. While his activity levels are on par or exceed those of typical children at his age, his coordination does not. The combination of the two of these elements basically means Charlie is in the injury business.

Second, Charlie is a brute. He eats triple what Winston eats in any given day. He's officially heavier and wears bigger clothes than Winston and they are 22 months apart. I don't get why he's so beefy.



Third, Charlie loves to play physical. He terrorizes Winston with his thug-ish behavior because he's smart enough to understand he can take him. Winston is scrawny. For example, the other day, Charlie gave Winston a little 'prodding' to tease him. This begun the fight. Winston grabbed Charlie's arm and yanked it, Charlie smacked him upside the head and started to run, and then (this is the good part) Winston pounced on Charlie's back and basically rode him piggy back beating on him, while Charlie ran away, carrying Winston on his back, laughing. Hard not to laugh while you're trying to discipline. Alas, I digress.

So, this being said, yesterday Charlie was in a physical mood so that's when good old Dad is supposed to step in and rough house for a little while to help settle him down. And step in I did. We rolled around doing 'steamroller,' did flipsie-daisies, practiced some linebacker tackles, worked on our wrestling starts, etc. Well, after playing around for a while, I decided it was time to wind down, but thought one more good physical maneuver would round us out... and that's when it happened. Heads collided and one was softer than the other one. The result -- a black eye.

Picture below...

























Almost there...




























Wait for it...






















Ta Da!





Yes, Charlie doled out his first black eye... to his Dad. And yeah, I know, it's not all that bad, but c'mon, all Dad is asking for is a little sympathy. Although, I imagine it was pretty amusing for Steff to come downstairs and see Dad rolling around on the ground, clutching his face, and Charlie standing by trying to console him. Maybe that explains why she was laughing...

Today makes...

EIGHT days seizure free. We only have him on Vitamin B12 and folocal. Thanks so much for all the prayers and support! Keep praying that it will last!

Charlie Update - Hope is kindled

We thought it would be appropriate to follow up to the last post with a current status. We've started to see some positive motion with the seizures.

About a month ago we started to carefully document what meds we were giving Charlie, his daily mood, and the number of seizures he was having. For those who may not know, Charlie has two primary types of seizures: clusters of petite mal seizures (http://www.mayoclinic.com/health/petit-mal-seizure/DS00216), and grand mal seizures(http://www.mayoclinic.com/health/grand-mal-seizure/ds00222).

We recently took the data we've collected and graphed it out to look for trends in what was happening with poor Charlie. I thought this was interesting and so we share...



As we graphed this, we saw three phases occur as we changed meds, etc.

1. Previous - 3/19: Full Meds - This is pretty much what was happening on the full medicine regiment since initiated (over 6 months ago). He was having 1-3 seizures a day of both varieties. His mood was up and down. His sleep patterns were all over the board and there was very little stability. This is what prompted us to just drop everything and start over so we could figure out what was going on with him...

2. 3/20 - 3/31: No Meds - Once we took him off the meds, the massive seizures ensued. He was have major Grand Mal seizures many times a day. These seizures were more severe than we've ever seen with full body convulsions lasting between 30 seconds to 2 minutes. Also during this time we saw an almost total loss of speech. When he'd have the big ones, sometimes he'd sleep for 3-4 hours afterwords. Someone who had seizures likened the physical toll of a Grand Mal to running a marathon. Despite the physical toll, he was very happy between seizures.

3. 4/1 - current: Started back with the first med, B12 shots. It was a toss up which med to start with. We talked about it and felt like the B12 shots were our best option, so we're starting out light. We're doing a shot every 5 days and since starting those shots, we've only seen one cluster of 35 Petite Mal seizures in the last 9 days. In this time we've seen his verbal communication returning, which is very positive. The interesting dynamic you can also pick out of the graph is that his mood correlates with the Grand Mal seizures. When he's not having seizures, he's more grumpy than normal and starts displaying behavioral issues like hitting head, tantrums, etc. We're still working to determine if it is behavioral or if there is pain/headaches, etc. Many seizure victims have correlated headaches and migranes to the seizures, so occasionally we give him Motrin, in case that is the reality, and he is happy. This sorta makes us think there's some pain/pressure that builds up that the seizures release, and when not having them, it is painful. Such a double-edged sword.

Anyways, we wanted to share the update. We're hopeful that we can keep this streak alive and keep him seizure free. It would be the answer to countless prayers, blessings and collective fasting. We appreciate all those who have taken part and continue to act on Charlie's behalf. We are too grateful to ever appropriately communicate our love and thanks.

Chuckles Update

Apologies once again for the long time in between updates.

Over the last little while we've been working with different combinations of meds, etc. As mentioned in a previous post, we started with the vitamin B12 shots. We actually started to see some positive results with the shots over the first couple of weeks, but in the last few weeks things have started deteriorating quickly. Charlie's seizures have dropped in frequency but increased in intensity. He's been having 2-3 Grand Mal seizures a day, more powerful and involved than we've ever before seen. These new seizures are accompanied by severe convulsions and in some cases he's not breathing for up to 30 seconds. After these seizures, which last between 30 seconds and 3 minutes, he is exhausted. He'll typically sleep between 2-4 hours after a seizure. People who have these types of seizures compare the physical exertion to running a marathon. They're pretty intense.

In the interest of trying to kick these, we've felt like we should step back from all the meds he's on and try to establish a baseline. It's been over a year since we've seen what the seizures are like without any meds in his system, so we've decided to go med-free for a week or so and see where we're we stand. From here, we're going to start playing with the meds one at a time to carefully gauge what sort of effect they are having on the seizures and the autism behaviors.

We'll keep you all posted.

These are a few of Chuck's favorite things

Charlie has a thing for enclosed places. He loves to get his blanket and snuggle down in a box or bucket or even on the floor inside his little playhouse.

We got him this swing for Christmas and Matt just got around to hanging it in the kid's room (being laid off has it's benefits!). Charlie LOVES it! He loves swinging and loves being all closed in so this swing is pretty much his dream come true. It couldn't have come at a better time because he's had a tough couple of weeks and it really soothes him to get in the swing and feel safe and cozy.

He loves getting in this bucket and drinking his medicine laced juice. (please pretend he isn't STILL using a bottle. Thanks)


He also likes to relax in this little plastic bin.



One of the only times we can get Charlie to hold still is when we lightly scratch his body. He completely freezes and gets little goose bumps all over his body.

He likes having his arms scratched so much that he will rotate them around to make sure you don't miss any spots. The cutest thing is when you do it to his tummy...every time we do it, his mouth will drop wide open and stay open until you stop.

He loves his daddy. He was so tired here and ready for bed but we couldn't put him down until he finished drinking the medicine in his bottle. He fell asleep leaning against Matt. So sweet.

Charlie loves to roughhouse with anyone who is willing. Good thing he has a big brother and Papa who enjoy it almost as much as him.

It's been a rocky road but we sure love this little guy and he's worth every bump!

Meet your Representitive - Spanish Fork

For anyone interested, this is happening tomorrow morning.

***************************

I'd like to invite any who are interested to a Meet your Legislators town
meeting this coming Saturday, February 21 from 7:30-9:00 a.m. We will meet
at the Spanish Fork City Hall - 40 S. Main Street. Joining me will be Sen.
Dave Hinkins and Rep. Francis Gibson.

We look forward to discussing the 2009 General Session and to answering any
questions. See you there.

Rep. Mike Morley

Clay's Law - One Round Passed!...Six To Go

The kids by one of the signs as we waited almost 2 hours out in the hall to hear the final result of the votes.

The kids outside one of the House Building after Clay's Law was passed by the Health and Human Services Senate Sub Committee.

Thursday morning, I hauled myself out of bed at 5:30am and got myself and the two kids ready and drove up to the Capital Building in SLC. We went up to the hearing for Clay's Law by the Health and Human Services Senate Sub Committee. I got there a few minutes late due to the wonderful snow and traffic to find the room packed with people dressed in red (they asked all those supporting the law to wear red). Someone offered to try and squeeze me in the back with Charlie in his stroller but I decided we better hang in the hall/foyer. There were several other parents out there with their children and a lot more by the end of the almost 2 hour hearing.

It was an interesting and comforting experience standing out in the hall repeatedly spinning Charlie around in his stroller or taking short walks and observing the other parents with their children. I struggled to hold the tears back the entire time. I watched two parents taking turns walking with their autistic son up the two flights of stairs and riding down the elevator over and over and over. The other one would go in and listen to the hearing for a while and then come out and they would switch. I saw others struggling with their kids with the oh so familiar look of exhaustion on their faces. Charlie let out his well known "chirps" the whole meeting and instead of disapproving stares or questioning looks, I got sympathetic smiles and a room full of understanding faces. I felt a sense of belonging that I haven't felt in a long time. I kept saying small prayers that the committee members hearts would be softened as they looked out at these desperate parents and kids and that they would have the desire to help us.

There was also a wonderful teenage boy there who was the older brother of an autistic boy. He played with and entertained Winston and a few other little kids almost the entire meeting. It was such a blessing because Winston was bored within the first two minutes of being there. It was a relief to be able to focus most of my attention on keeping Charlie from throwing any more tantrums than necessary. :)

Despite the long wait, I didn't see anyone leave. If passed, this law would give so many families and children help and a hope that is really hard to hold on to with the very, very limited resources for these kids. They kept the double doors open into the room holding the hearing and people were crowded in them and out in the hall but I was able to sneak peeks here and there to try and figure out what was happening. Finally, a loud cheer erupted and everyone was standing and clapping. People started pouring out of the room and there were not many dry eyes in the crowd. I knew they had voted to pass Clay's Law and I couldn't hold back my emotions anymore. I cried right along with the rest and said a little prayer of thanks.

This was only the first of 7 hearings that the law needs to go through and get passed to go into effect starting in July of 2010. Matt is going to write more about what comes next. I'd just like to thank all of you who have helped us out so far and I beg that you will help us get this passed. Matt will post info on how you can help. Please help us give these kids a chance.