Sunday, April 18, 2010
Monday, March 15, 2010
Liars... we/I am/are filthy/dirty rotten LIARS. How presumptuous of us to suppose that we would really maintain this blog appropriately and concurrently promise that as much would occur. Let me first speak as plainly as I know how. Resolutions, esp. those made by others invoking your involvement SUCK/BLOW. My wife's intentions were pure in suggesting that we would effort to more frequently update. My cooperation however was verily ungenuine. I'm hoping that my apparent/obvious lack of enthusiasm regarding the blog isn't being construed as a lack of appreciation for the august effort, therapeutically, that so many of you are involved in. We are in a continued/constant state of thanks and indebtedness.
Charlie's therapy is like a swiss clock. All of his Angel's have become rather proficient at their art. Progress is slow but we still see new things here and there. The most significant of late is his awareness. In undertaking this program we fully expected his progress to be purely physical and while we have reached some mile stones in that regard it is his mental faculties that have improved the most as of late. Charlie has started to recognize and respond appropriately to different individuals and he does have his favorites. He has started to anticipate certain things, mainly food and his overall awareness is getting better every day. It's as though he's starting to figure out where he is in the world. He doesn't really care for patterning and he's not afraid to let you know about it. The rest of therapy he doesn't mind. His favorite is songs and hot packs.
I think it apropos to use the blog to thank Suz for her labors. Tirelessly she arranges and rearranges varying schedules ensuring that Char's therapy runs smoothy. Surely many of you have come to know her and as we offer our gracious thanks to all of you we also say thanks to her. Suz I'm sure Char will put in a good word w/ the Almighty and the hours you have sacrificed on behalf of our dane bramaged boy will count themselves advantageous in The Book of Life.
A fine video was constructed of all of you Angels and as soon as I educate myself on how to upload or find a capable party to pawn it off on it will be posted. You should look forward to that.
Saturday, January 30, 2010
This is Megan and I'm updating because Rob is too lazy.
Thursday, January 21, 2010
Wednesday, January 13, 2010
First let me offer our continued thanks to all of the “Charlie’s Angels” who w/o you none of Charlie’s progress would be possible. When Char’s sweet little body was neurologically devastated Angel and I were unsure how we would handle our straightened circumstances, but now after seeing the Herculean effort undertaken by over 120 of you “Angels” a way has shown itself. Every week 114 man-hours are devoted to helping Charlie’s circumstances become less narrowed. Our thanks will never be enough to show you how grateful we are for your labors but sadly it is all we have to offer.
We have been working w/ Charlie for just over two months and to appraise his progress one needs to understand his developmental progress/state before we started. His evaluated neurological age was 2 months old. His physical competence was non-existent w/o any movement that could be interpreted as meaningful. Vital responses to pain, sound or light were a no-go. Char basically lay around, cried and writhed in discomfort, which was invariably related to his extreme boredom. Those who have been gracious enough to assist Charlie in his convalescing have been able to experience first hand his marked improvements. He is now responding appropriately to tactile stimulus, his vision has become his most keen sense, he is using his arms a and legs in a meaningful manner and can motor down his slide pretty quick (should he be in the mood) and when he lays on the floor he’s gotten pretty good at holding his head up for short bits of time. His hearing is still a concern but a couple of weeks ago he started responding somewhat consistently to really high pitch noises. However all this aside Angel and I are most impressed w/ one thing. His awareness. All you have to do is spend a brief period of time with him and you can tell that the light is on. Smiles, grins and long sustained glances have become commonplace. But the funniest thing is that when he gets sad he’ll cry a bit here and there, then when he sees that your there he lets go with the most cute/pathetic cry that actually sounds like a normal kid crying w/ his little bottom lip all pouty. It’s awesome.
Our plan is to continue w/ the program until we meet our 6-month goal where upon completion we will evaluate whether or not the progress Char has achieved is worth the inconvenience we have selfishly imposed on you all. Our hope is that the benefits we see will merit continuance, and that as we continue you will press on w/ us in attempting to rescue any of our little boys native endowments that the Almighty sees fit to allow.
Below is the page from our families annual memory book that my eldest sib felt would be apropos for all of Charlie’s faithful following. (Click on it for easier reading.)
Tuesday, December 1, 2009
A year and a half ago, I met a super sweet girl named Jenn who had spent hours making a totally awesome blanket for Charlie (pictured above). She is one of the most giving and talented people I know. She had followed Charlie's blog because of a dear friend and I'm so glad to have met her.
Now she and her family are dealing with some pretty rotten stuff. Her husband had a heart attack on Sunday and was given a 2-5% chance of survival.
Mind you that he is only 31 yrs old (I think), but he is a fighter and he has already surprised many. The words Jenn stitched into Charlie's quilt like "inspire" and "hero" apply to her and her husband too. Please join us to pray today for Pete, his wife Jenn, their two boys and their yet-to-be-born baby girl. Follow their journey here
The love and support Rob and I felt through the blog comments carried us through some rough times. I hope Jenn can feel our love too.
Tuesday, November 3, 2009
Monday, October 5, 2009
We know some were not able to make it last night (Sunday) for the therapy indoctrination due to the holiday weekend and the like, but if you would still like to be included in the volunteer schedule here's the plan. We are working on morning, afternoon and evening sessions for as many as we can fill. We are getting everything organized this week and would like to start some sessions this weekend if possible. Please let us know your schedule as soon as possible if you are interested in helping. Send emails to either of the following, Skirob00@yahoo.com or email@example.com.
How many hours a week would you like to volunteer?
Would you like them blocked together (in 2 hr increments) or spread out?
What days/times are you NOT available? (We need this info so that if we are looking for subs we won't call you.)
What would be your ideal schedule?
Are there any days this month you are going out of town and need coverage?
A Phone # where we can reach you.
Eventually we will get a schedule together on a google doc that will be linked from this blog. That way you will be able to easily access the schedule. My sister Susan Longman has graciously accepted the charge of being Char's therapy Coordinator and Director or President or Dictator or Supreme Ruler of Field Marshall or Czar... maybe not Czar, seems as though we already have way more of those than we need. What ever title you choose to call her by she will be the one managing all of the "Charlie's Angels" With her current propensity to not give a damn nor be easily offended we thought she would fit the bill regarding this charge, that and she really excells at telling people what to do. Since I have yet to discuss how she would like to be contacted by all the volunteers I will abstain, for now, and not put her cell number online for all to see and spam.
Thursday, October 1, 2009
Friday, September 25, 2009
The fat lady has sung and yours truly has done the impossible. 55+hours of lecture is complete. Lucky for me my brain is amazing. Glenn Doman, Institute founder, said "The brain is the only container that has this characteristic: The more you put into it the more it will hold." If there is only one thing that I've learned this week it is that the human noodle is frighteningly amazing. The human brain has, by conservative estimates, a trillion cells. Now while that might not be a big number if you're the leader of the free world, to me, a railroader from Utah, it's HUGE. Now Charlie's brain has been profoundly damaged but in no way has his entire brain been hurt. Since he got sick I've been obsessed with how many brain cells he has lost, how hurt his thinker is. I've never realized how much good brain he has left. Call me a pessimist, -Guilty. I blame Gammy, my grandmother. I grew up watching every BYU game with her and no matter who the Y was playing we were sure to get beat by 50. She kept this pessimism until the Cougs were up by 30 and only then would her faulty elimination clear up. Her condition was almost Pavlovian, Cougs get scored on she'd head to the lou.
Wednesday, September 23, 2009
Tuesday, September 22, 2009
Here we are, the end of day 2 at "The Institutes" and we're still not sure what to think about this place. It is all very different from anything that Angel and I have ever experienced in the world of raising a kid with a hurt brain. This course has been as advertised; very strict, regimented and taken VERY seriously by everyone here. Everyone except Ang and I. We, up till now have remained cautious and somewhat skeptical. We are keeping an open mind and have every intention of giving this our best shot while trying to stay realistic. We are but 2 of 60 people in attendance here and I think we are the only ones not "drinking the kool-aid." There are folks from four continents, 11 countries and 18 states.
The course has several instructors who do a fine job and are all very organized. It was a surprise to us yesterday when we came in from one of our 10 min. breaks and found in the front of the auditorium a very old man with a white beard. It was Glen Doman, founder of the institutes. We read his book before coming and he wrote it so long ago we assumed he was dead. He's not, he's 90. It was obvious that he is a very bright man. He is a pioneer in the Physical therapy field for brain injured kids. And while there are many who don't agree with his methods, you can't deny that his methods have produced positive results. Needless to say we were all surprised to see him and hear him lecture as part of his course. The staff here is also loaded w/ extremely bright people from countries all over the world who also share Mr. Domans religious like zeal for the institutes and the program. Angel and I have, however come to the consensus that the folks at "What not to Wear" need to come and treat the staff here to a bit of there therapy. Most of the outfits and hairstyles are straight out of "Dynasty" and "The Love Boat."
We've had a few chances to get to know some of the other parents and their stories, which are all very sad yet inspiring. There is a couple from New Jersey who's daughter suffered from anoxia at birth and is now severely handicap and O2 dependent. There is a father here alone from Sweden who has a son w/ CP. A father from Pennsylvania who's wife took the course prior and has a 22 yr. old daughter that was struck by a car and now has the mental capacity of a 1 year old. Two sisters from Israel who have a niece w/ a rare genetic brain defect and they are here taking the course for the mother who doesn't speak english. Then there is Mr. Pope, Angel's favorite. When and if you see here you'll have to ask about him because writing about him will in no way do justice to the joy that he has given my sweet bride.
We have learned many things about the brain injured child and Charlie's condition. We did a detailed evaluation of Char and we are glad to report that Angel and I are the proud parents of 28 month old boy with the Neurological capacity of a 2 month old. Believe it or not this is a bit more advanced that we though he'd be. We also learned that his injury is now diagnosed as a "Profound Bilateral Difuse Midbrain and Cortical Brain Injury." Say that 10 times fast. Apparently this is common among the kids that are treated here at the institutes and many of them improve to varying degrees and some of them even get better, completely better.
Saturday, September 19, 2009
I realize it's been an age since we last updated but I've procrastinated with good reason. One not much has changed in the day to day life of our little man and I just haven't wanted to. I told Char's mom that when something noteworthy occurred I'd gladly note it.
Currently we're on a flight to the Institute for the Achievement of Human Potential in Philadelphia. Angel discovered this place through the Menning family and after doing some research we decided that this joint might be able to help Charlie. You'll have to excuse me for being short and largely unfunny but just before we took off I received several texts letting me know about the blood-bath that was happening down in Provo. (Dave and Cam, thanks for keeping me in the loop.) If my name was Landon I wouldn't care that BYU was getting beat because our rival already lost but alas that is of no consolation to me.
Angel and I are scheduled to attend a parents conference at "The Institutes" that goes until Friday of this coming week. 50+ hours of lecture designed to educate/train the parents of brain-injured kids on new and progressive therapy options. Any of you who know the zeal I have for the classroom will also know that it will be nothing short of a modern day miracle if I make it to the end. We got the class sched. and syllabus for the week and HOLY SH!#. This stuff is scheduled to the minute. Class is from 9 am to 7:45 pm every day with a liberal 25 minute break for lunch. Below is just the first page of rules for the lectures. There are two more.
We encourage course participants to briefly step outside for fresh air
if weather permits.
1. Always be in your seat on time.
2. Stay in your assigned seat.
3. Do not stand up during a lecture.
4. Do not leave once a lecture begins.
5. If you are late, go to the sequestered area.
6. Do not smoke in the auditorium.
7. Do not bring food or drink into the auditorium.
8. Do not eat, drink, or chew things in the auditorium.
9. Do not sew or knit in the auditorium.
10. Do not operate a tape recorder during lectures.
11. Do not operate a paging device or cellular telephone
12. Do not interrupt the lecturer.
In essence, each parent should be careful to never create distractions
for other students or the lecturer. They will show you the same
Each lecturer will focus his or her attention, interest, and concentration
on you. This is precisely what you should do for each lecturer.
Your help in keeping the lecture environment perfect will be a significant
contribution to the overall effectiveness of each lecture.
They also informed us the bring a coat, jacket or sweater because they keep their auditorium VERY cold. Apparently NASA did some studies and have found that humans learning ability is significantly improved when you're freezing your ass off. We both had to read this book "What to do about your brain injured child" and sign a affidavit dotted in blood swearing that we read it before we would be admitted to the class and Angel tells me the book makes sense. I don't really know what to expect with this place. In my mind I'm imagining a room of people in white coats, coke bottle glasses and tin-foil hats. I did look at a few of the brochures and did read some of the welcome packet but I'm afraid this Railroader might be in over his skis on this one.
We will try and update often this next week and let you know what we are learning (check that... what Angel is learning). We want to thank all of you for helping us with this trip. The Mom's and Sib's for taking care of our boys. And so many others for helping us afford it, esp. Randy (Bubba Jed) and Pam, Kent, The Colonel, Jimmy, Ogar, and B-Low for the buddy passes and Boomer for the accommodation hook-up.
Wish us luck!
PS. BYU SUCKS!
Wednesday, August 12, 2009
Monday, July 6, 2009
(Thanks Jen for the perfect blanket backdrop. I love it so much and still want to learn someday)
Thursday, July 2, 2009
In thinking what to post about I had this idea to write first person as if I were Charlie and go through a-day-in-the-life of our favorite neuronally necrotic little boy. I did make an attempt, then read it and it was admittedly sub-par. Even w/ my arrogance I’ll gladly concede when I suck and ask that some degree of quarter be granted. I tell you this not as an excuse to my sloth but so you can respect that I do try and make this blog interesting and continually posting about the monotony of our lives is less than interesting. In my head it was a Pulitzer worthy idea but in reality there is nothing more myopic than tolerating misguided attempts at creativity from those who aren’t. Alas, I am not. I gave it my best effort but after all isn’t the true definition of ineptitude, how should I say this tactfully, when your very best just isn’t good enough?
So, where does this leave us…? I was hoping that the new pictures of Char would satiate you for a time but I was corrected straight away by my dear bride and informed that I will post something. Unfortunately for you, prepare yourselves for monotony. On a side note, I’ve just typed three paragraphs and not said anything of import. I’ll go ahead and pat myself on the back for that. And if you don’t know who Miss Teen South Carolina is go search youtube.
Charlie is still very much Charlie. His progress continues to be biblically slow but in contrast to a few months ago when it was stagnant if not regressive we’re quite pleased. The term "Charlie steps" is still most adequate. Angel and I notice small changes here and there but some folks who only see Char occasionally tell us that they see improvement. Now whether or not that is honesty or just the patronization of parents of the cerebrally bereft I don’t know, however I prefer to think it’s the prior. After all I am a Cougar fan and I’ve lived my life thinking that BYU is/was better than they are/were. In the last month or so Charlie has become markedly more active and aware. Keep in mind "Charlie steps," it’s not like he’s walking. He’s moving his limbs a lot more and is becoming more bilateral. Sometimes when you play with him it’s almost like he’ll grab at things. His vision has improved most of all. I really think that he’s recognizing faces. For instance; if you walk in the room and he’s lying on the bed he’ll move his eyes (both of them) to see who it is, and if it’s his dad he’ll let a big ole smile go. All in all he’s paying far more attention to his surroundings than ever before. Char is loving the outdoors and often a little time outside with the wind in his face will make this ire-some little man quite happy.
The best thing happened a couple of weeks ago that must be documented. Charlie got sick. We think but we’re not for sure. It might have been a touch of the flu or a cold but whatever it was, was heaven sent. Explanation to follow: For five days Char was calm, mellow, happy and most importantly content. His Rx’s were unchanged with the exception of his one of his reflux meds. It was bumped only slightly and had been so for a week before his blessed change in demeanor. Britton was sick and Char had a low-grade fever so we’re calling it a bug. Can I tell you how great it was to lay him down, use the restroom, and not have him SCREAMING when you came back? Or how nice it was, for five entire days, to hold him and not have him fight you while writhing in discomfort and contort himself into all types of unnatural positions. He took naps, sometimes two in a day! When he woke up he was calm, and stayed that way. He went to bed at a decent hour and slept past six a.m. He even made it in the car from Bountiful to Kaysville w/o making a peep. The best time of the entire five days was father’s day morning when Charlie gave me the very best gift a boy could give his old man. He slept in till 9:30 thus so did I! Manna from heaven. But like all good things, it has ended. Charlie is back to the foul mood that we’ve grown accustomed to. Maybe we haven’t become accustomed to it, we’ve just learned to tolerate it. He will have a good hour here and there but not nearly enough of them. Maybe we should invite the sickies over to play with Char and keep him in a marginal state of health thus moderating his temperament? Totally kidding… put the phone down… no need to get child protective services involved.
Anyway, I’m spent. The well is dry. If you want more info just come by and visit, and don’t worry about leaving your sick kids at home. All are welcome. We won’t even make you wash your hands. Again, kidding… hang up the phone. Talk to you in a month or two. Kidding. Maybe.
Monday, June 29, 2009
Tuesday, May 19, 2009
"It's easy to make a buck. It's a lot harder to make a difference" Tom Brokaw
Thank you, thank you, thank you. All of you for supporting the Brain Injury run this year. I had a great time seeing all of you, which is somewhat of a surprise considering I really don’t like people. Even more so I don’t like large crowds of people. I don’t mean this to be rude but as a point of illustration many folks consider Disney Land the "Happiest Place on Earth." For me it’s more like hell on earth, too many humans in too small a place. Which is why the 5K the past two years has been marginally peculiar for me. I enjoyed myself, immensly, in a crowd, with lots of people. The big difference as best as I can fig’ur is that you all are really cool. A far cry from the booger eating mouth breathers you have to rub elbows with while waiting in line for "It’s a small world." You all are REALLY COOL. You all came out selflessly to support something that is very important to our family. That says a lot about what kind of people you are. My only regret I have is the same regret I had last year, I feel like I didn’t get the time to visit with you all. So, if Charlie and I didn’t get a chance to say hi and thanks come find us next year. I think part of it is my fault. Case in point: A totally nice gal and her kids came up to Charlie and me and asked if they could get a picture with Charlie, I said you bet. As I got talking with her she told me they had been at the race last year and didn’t dare talk to us because she was worried I’d make fun of her on the blog. I felt like a jerk. Let me assure you all the only people I’d make fun of on the blog are hippie looking male nurses with nappy beards and sunglasses from the 70’s, metallic knee’d cousin/uncles wearing construction vests trying to run so they could catch up with hot women, and diarrhea mouthed boyfriends of my nephew. As long as you don’t meet those qualifications you’re safe.
We had a great time and we hope you did too. Many sib’s and friends put in a bunch of work to make sure this years race was a success and to them I say thank you. Thank you to all those who sponsored the race and donated raffle prizes. All the money raised will go to a great cause. Some will go to helping those who have brain injuries and much of it will go to educating people so they won’t become brain injured. Brain injuries suck and while Charlie’s little noggin has been devistated we are glad that there are things like this race that help put a silver lining on his condition and make it a little easier to handle. We are very grateful and humbled by you all and you are all really cool people. I’d go to Disney World with you anytime.
Friday, May 15, 2009
We are so excited to see you all bright and early Saturday morning for the BIAU 5K. We have been trying to decide what to do to unify Charlie's team this year... for those of you returning from last year, you are welcome to wear your "Charlie Steps" t-shirt (and you will be receiving a race shirt as well). Charlie's aunt Erin has purchased enough maroon bandannas for those people registered for the race. (Thanks Erin!) To get a bandanna, find Rob, Angel or Charlie at the park before it starts. Also, if you have children who are not registered, you are welcome to bring your own bandanna for them to wear if you want them to be involved too - but we only purchased enough for the official team registrants (so please only take as many as you registered for so everyone on Team Charlie can get one!). I think you can find them at party supply, craft or fabric stores.
Also, if you want to be involved in the donation drawing after the race, bring your dollars to buy tickets. $1/ticket. There are some seriously awesome prizes (we have 75 prizes so far!). The more you enter, the more likely you are to win.
Also, we just want to say thank you to all of you - for continuing to support Charlie Cooper and his family over the past year - at the race and in everything else you do for them. Your love and support really means so much to Rob & Angel (and the rest of us..).
See you in the morning!
Thursday, May 14, 2009
Wednesday, May 13, 2009
I’ve been ordered/asked nicely to post on the blog a short reminder about the Brain Injury 5k run, walk, roll this Saturday at Liberty Park. So here it is.
*DISCLAIMER* - the following will likely be dripping with sarcasm, cynicism and a modicum of derision.
BIAU 5K REMINDER
Get off your lazy cans and try rolling your sorry sack out’the bed early enough this Saturday so that you can get to Liberty park in time for 15th (or so) annual BIAU 5K Run, Walk, Roll. It kicks off at 0800 (I think) and I know there are plenty of you out there that don’t even know what the day looks like at 8 am so this will be especially neat for you. Now lets be honest here. Very few of you have the fit/trim athletic build that I’m blessed with so this won’t hurt you. Calories might just get burnt, you might even sweat. And if you can somehow motivate yourself to keep going after the first 10 feet, when your heart already feels like it’s going to explode, you might even finish. Or you might not. Then you’ll just have to accept the fact that your best effort just wasn’t good enough.
*DISCLAIMER* - the previous reminder had to be cut short before any more of you learned just what a ___________ (insert explicative) I am. Why is it that being negative comes so easy to me??? Bitterness + Negativity - Anything Constructive = Rob
In all reality and truth, we are very excited for the race this year. We know that it would be unrealistic to have the turnout that we did for last years race but we hope that all of you will make a concerted effort to attend and help a cause that is very important to us. This year we won’t have T-Shirts but one of my sisters (thanks Errrn) rounded up bandannas so that those of you who are coming to support Charlie can have a way of showing it. I’m told that I’ll have them with me and Char before the race so come and find us. And just a thought, you could always wear your Charlie shirt from last year?!? Also, we’d like to get another picture this year and in an attempt to actually start when we’re supposed to I’ve been told that we’ll take that pic at the finish line. (Although it was cool that there were so many of Charlie’s peeps that there wasn’t really any point in starting the race until he was good and ready!) That way we can have photographic evidence of the lather that you either did or didn’t work up. If you look great in a post race pic we’ll know that you are lazy and didn’t run or there is a rare chance that you share the same perfect genes as me and you can run for days, not sweat and never get your heart rate above 50 bpm. For an elite few of us having 4% body fat is the cross we have to bear.
SEE YOU THERE!!! You've now been REMINDED.
Tuesday, May 5, 2009
Britt helped blow out the two candles and then shared some delicious cake with him. As you can see from Britt's own face, he doesn't have the greatest aim so Coop had a little too much shoved in at once. Good thing Aunt Suzie was there to zone in on the target. He also got hooked up with great gifts of essential items! Thanks everyone.
In the last week or so Coop has "not hated" (one step below saying he "likes" something- but huge step up from his usual grimmace) having tastes of food as he once did. Big step for us. I'm not sure why things have improved but I hope it's here to stay. Dr. Such-Neibar instructed us to give him strong flavors to wake up the tastebud instead of bland baby food. So we give him tastes of A1 sauce, marinara, Arby's sauce, salsa (he didn't care for this- I think he may be a "super taster" like his father), peach freezer jam (thanks Amanda), and Diet Coke. It's just what every toddler likes right?
Coop has hated the car for a year because it restricts him in a bent position instead of being arch backwards. Many times when we arrive at a destination 10 minutes away we will have to take off his clothes because he has sweat through them and it drives Rob nuts to hear him cry so much. So the best news of the week is that Rob discovered that he likes the sensation of wind blowing in his face and will often smile when he feels it. It only works for a few minutes but the important thing is that it works!!!