Friday, February 20, 2009

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

Friday, February 13, 2009

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.

Thursday, February 12, 2009

Update on Chuckles.

Its been some time since we've managed to get an update out here. Apologies for that.

Things are moving along with Charlie. Here's where we're at:

We've been slowly pulling him back off his seizure meds and watching if there's any effect. So far, we've not seen much difference. He's still having seizures multiple times a day of varying intensity. We figure, if there's no diff between taking the meds and not taking the meds, then why keep filling him full of the stuff.

We just had an appt with his Bio-med doctor, Dr. Humphries, and we've moved on to giving him B-12 shots. This is the next step for him in his bio-med therapy. Right now he's on an assortment of meds (Vitamin C, fish oil, aceto-catmine, child essence, fair biotic, melatonin, and one other I can't think of the name) from this dr. Its taken several weeks to build him up to that. The purpose of these are to help level off some of the internal checks and balances of the body.

This next step is where people that have used this therapy have really started to see some cognitive progress with their kids. The vitamin B-12 shots are given to him every three days. Mom and Dad (mostly Dad because it freaks Mom out) get to give him the shots. People that have done this have said they have seen progress in as little time as two weeks, but the dr says two months.

If this does work, it will really open up Charlie's mind to be able to absorb the teaching that he's getting at an accelerated rate.

In the meantime, we're also considering some meds to help him sleep better at night. Many people have mentioned that they saw marked improvement in their children once they started to sleep. In order for the body to store knowledge and learning into long term memory, the mind has to hit a REM cycle during sleep. It usually takes about 90 minutes of continuous sleep to hit this cycle. We don't think Charlie gets to that point very often.

We've not had a sleep study done on Charlie, but based on what we can hear in the room next door, we think he gets between 4-6 hours of sleep a night, sometimes less. Hi sleep is constantly interrupted. We'll hear him at 10pm when we're down relaxing, at midnight, at 3am, and by 6am he's usually up and yelling at us. We've actually considered installing a infrared web cam in his room, so we can observe his sleep patterns, but haven't done it yet. Maybe someday I'll figure it out. :-)

So, the plan for now is to get him a couple of weeks into the B-12 shots to make sure he's tolerating them, then we'll move onto the sleep meds. In the meantime, we're trying to prep our house for the oncoming diet... We're installing magnetic locks on every cupboard/drawer in the house, and replacing our pantry shelves with cupboards.

If anyone is asking why we go so slow with the meds, there is a reason. Charlie has tried so many and had such wild and varying reactions to them, we take them one at a time and watch his behavior to see how it affects him. If its a bad reaction, we back him off.

So, good times.

I'm not sure how much sense this made. Its taken me a while to write it between doing a bunch of other stuff.

GOOD NEWS: Just heard Clay's Law passed!!!!!! Steff was up there so I'll let her fill everyone in later on. YAHOOOO!!!!!!

Monday, February 2, 2009

Comments... turned on.

When we started this blog, we just wanted to start spreading the word on things that we're doing and Charlie's progress and generally keep people in the loop. As we've shared our challenges, a lot of people have found great helps and resources that they've wanted to share with us but have not had a good way. For that reason, we're going to open the comments.

If you have something you'd like to share with us or even just randomly spout off, feel free. We're always open to humor. Fact is, we embrace it. We'll even accept the occasional 'you guys are demented' type comments, but we ask that you keep them to a minimum.

We feel like we've truly been blessed by the people that surround us everyday, from family to neighbors and friends. We couldn't do this without you. You're there to help and strengthen us at every point and it means the world to us.