Hell Hath No Fury Like a Fired Up Char!

I’ve been order to update this blog and since the order’er is one who controls my carnal proprieties I’ll comply. That and I guess it’s my turn. It seems like I haven’t done this forever and to be honest I’ve procrastinated because I fear that if I get going the update will just turn into a giant rant with an air of negativity that doesn’t belong here.

Charlie had a visit with his Rehab Doc., Terry S-N. What a gal and what a great physician. We were really looking forward to this visit because Charlie has not been a very good boy lately. You know what? I’m not going to sugar coat this… the past few months have sucked! We don’t know for sure what started it, but our best guess is that when we changed some of Char’s meds his system and damaged little noodle were less than pleased and expressed their disapproval by turning my sweet little man into an inconsolable demon offspring of Hades’. Now if you’re saying to yourself, "Man Charlie’s dad is a real jerk, doesn’t he know that he has a brain injury and can’t help it?!?!" Let me be the first to assure you that the import of my son’s condition is etched so piquantly* in my little noodle that not a second passes where it’s not my most keen concern. Any of you close to Charlie please feel free to utilize the comment section to offer you endorsement of our hero’s recent demeanor. Granted I have been known to spin a decent yarn from time to time, but not even I can embellish the substantiality of having to hold and coddle your child for 16 hours a day, 7 days a week because if you lay him down for more than 11 seconds (we counted) he instantly combusts into a frothing hyper-tonic piece of pissed off dude. After about 60 seconds he’s sweating like a fat man at a free dance and the screams go silent because he can no longer draw air all the while his mood grows more vehement every moment. The poor kid got kicked out of therapy! Now how bad is it for you when you become so un-fun that therapists, the most patient people on earth, say "I think we need to take a couple of months off and see if you can get him mellowed out." Poor deaf brain damaged lazy eyed drooling therapy dropout. I guess it’s good Charlie has no idea about self-esteem, cause I don’t think you can give Prozac through a G-tube. During our first experiences with this new mood we thought that we could just put him in his bed and he’d tire and exhaust himself and eventually fall asleep. We let him go one night to see how long he could keep it up and after about an hour and a half he was sweating so profusely that dehydration became a real concern and I succumbed and parented again. This may sound insensitive but I now know why parents shake their kids. I say that only as a point of emphasis and I assure you Charlie has not been shaken and should anyone try they will find me sideways of them. Again, if you don’t believe me just ask someone who isn’t full of it, i.e. my wife. Or I could just set Char down, wait 11 seconds, take some video and post it here. You let me know.

Luckily, his ire has receded in the last week and with the light and knowledge received from Dr. Terry we have hope. Angel has been given certain latitudes to liberally alter medication at her discretion with the goal of long-term placation. Cross your fingers as we try and walk the fine medicinal line of well-tempered vs. well-doped. I guess if you want the nitty gritty details you can call Angel and talk to her. She’s way better with that kind of stuff. It’s better for all of us if we leave the details to her and the bloviating to me. I’ve just never been that into knowing when he had his last suppository or if his meds changed from 1.33 ml. to 1.5 ml. Sorry.

So the 5k is coming up and we’re all excited to see you again. We hope you can come! My sibs have been put on the committee and I’m told that with Meg’s degree in party planning and Suz’s OCD things will run ultra smooth. Tell your friends and just know that if you don’t show up and I think that you should have, you better have an awesome excuse like your preggo and about to calf out, like Sport. Or the next time we see you Charlie will give you the stink eye (with his good/straight eye) and cry because he thinks you don’t love him. How’s that for guilt?

*(meggie/whit, adv. –sharp/stinging)

Save the Date

Brain Injury Association of Utah

5K Run, Walk & Roll 2009
When: May 16, 2009

Where: Liberty Park, Salt Lake City, Utah

For Sponsorship or Registration information please call the Brain Injury office at

801-484-2240 or 800-281-8442 or click here

Charlie would love to show everyone his SMILE. (I think he found it)

Where has the year gone?

One year ago today our lives change and we started this crazy journey. Honestly, I thought/hoped Coop would have improved more by now but I have to remember his improvements are measured on a completely different scale than mine. I can't begin to express how our lives have changed over the last year both on the outside with our daily routine of therapy, medicine, constant comforting, worrying but mostly on the inside. Our focus has turned from the here and now to a eternal perspective. I'm learning (forced) to slow down and analyze what is really important and enjoy the good things. Although sometimes all I can do is get through the present week, day, minute or even seconds, those seconds mean so much more to me-because we came close to not having them. I am so grateful that I can watch each improvement happen even if I feel like we are on super-slow motion. He is such a blessing in our life and I love him so much. Thank you to everyone for your kind words, prayers, service, donations over the past year. You have been answers to so many prayers. Thank you.

This is a family assignment Charlie had for 2008- Rob thought I should include it...

Things I’ve (Re)Learned This Year –
Charlie Cooper- age 20 months
I re-learned how to see and to recognize what I’m seeing. I am also working on re-learning how to move my eyes together and to the left. It’s sort of difficult.
I’ve learned that you can reach decibels never before known and it doesn’t even have to hurt your own ears.
I re-learned to lift my head to the right.
I learned to work hard because the littlest things can be really difficult.
I re-learned how to swallow and gag so now I get to taste some food.
I learned how to be heard not just seen.
I learned how to get my way and be held as often as possible.
I learned how many people love me.
I learned to inspire people without saying a word.
I learned I am a small and simple thing but I can make great things happen.
I re-learned to relax (my hands at least).
I learned to have great diaper blowouts.
I learned just how much my dad loves me by making him consider things he never would before (give suppositories, consider buying a van)
I have learned that happy hour is at 10pm not 5pm.
I learned to bite hard if something is in your mouth.
I learned that with a crooked smile you can melt anyone’s heart.
I learned to talk to the Angels.

It's Been a While

Not because nothing has been going on but because we haven't had very much time to post. Coop has not been behaving over the last couple months and has become very high mainentence. Since staying in the hospital, his sodium has come back down to normal levels but the agitation has remained and has slowly gotten worse. He is now calmed the most by being held and cradled. When he isn't held, he get extemely tense and arches like he did when he was in the hospital and immediately starts sweating beads- like he is going through menopause. Our pediatritian checked him and couldn't come up with anything definitive that could cause discomfort so we are to see Dr. Such-Neibar to adjust medication. We have several theories but can't choose just one (teeth, medication change, brain recovery, constipation problems...) Due to his new temperment he has been kicked out of therapy until he can "find his smile". A problem his big brother often has. We have been very lucky, however, that Char has had few cold/viruses this winter to complicate the tricky diagnosis.

This is how he is the most comfortable-arched backwards- Notice he is sound asleep

The only pics from his hospital stay- I'm out of the habit

Reunion with his "Hog Doc"- He misses you

A Smile for Neale- we don't get as many anymore

Goodbye 2008 - Hello 2009!

Charlie wishes you all a happy new year - 2009!

We know, because he rang in the new year with more sweet, sweet smiles - the kind we saw last year at this time - than many of us have seen in a very long time. I only caught a few in this video, but it was awesome and just reminded us that he is in there just peeking out sometimes... It has been one heck of a roller coaster year, and we are all looking forward to 2009 to see how Charlie surprises us... hopefully with many, many Charlie steps.

ps. Charlie wants his momma to know he misses her and hopes she has lots of fun the next few days - he thinks she sure deserves a little break. and that his daddy is doing a pretty good job taking care of him. ;)
-aunt meggie

Pass the Salt...

We're in the Hospital again and not a bit happy about it. Hypernatremia is the diagnosis and sadly enough it's my fault. We've been adding NaCl to his diet per the Nutritionist in order to supplement his diluted formula. Too much salt we've learned that its a bad thing and 2 kids in the last 6 mos. have died from this same diagnosis. Tim, the most brilliant RN in all of the land explained it to me on a Railroaders level and said its like putting salt on a snail and watching it shrivel up. Too much in your blood and your cells shrivel up. The last few weeks Charlie has been pretty irritable, i believe the medical term is "Pissed off" and it got so bad that about 10 days ago Angel took him to the E.R. thinking it might be a shunt problem. It wasn't and they sent him home thinking it was orneriness related to teething. So he had another temperment change late Saturday night ran a slight fever and got uber lethargic. Eerily similar to the way he looked when he first got sick back in January. Called the Pediatrician and he told us to head to PCMC. 8 hours in the E.R. and they admitted us. Last night was rough for Charlie and very uncomfortable. His mom, who may be the greatest most hottest hotty in the world, was the only medicine that worked for our little man. She stayed up and held him all night in the most uncomfortable chair in the entire hospital.
Today he has done much better and the Sodium has come down and we should go home in the morning. It's been pretty weird to be back in here but it's been good to see some old faces and not so good to see others (Duzy). We are so thankful for all of you and wish you a very happy and healthy holiday season.

Give Thanks

Happy Thanksgiving from Charlie in St. George. We are thankful for many things this year, but mostly that Charlie is still here, still strong, and taking Charlie steps. A pal put this video together to help Charlie give a talk in church, and we thought thanksgiving was a good time for us to share it. We also want to thank all of you for your friendship and everything else the past year. We are thankful you are in our lives.

Manly News

Update, update, update. First let me apologize for being so dilatory regarding this blog but I am not w/o reason. Reasons I won’t bore you with other than to say it is in large part because of the lamentable depression I’ve been suffering through brought on by the lackluster performance of the Cougars of Brigham Young. Now if you say, "Why would you be depressed they’re 8-1?" I would tell you that you’ve missed the boat and don’t understand. The reason for the depression, depression that is so debilitating the last thing you feel like doing is blogging, is because the charade of a team that is BYU, is on Nov. 22nd going to be taken out behind the woodshed and turned into humble little prison inmates. My prediction: BYU 6, yewts 91. With that knowledge and my superior prognostication skills how do you expect me to get motivated about anything? some of you might tell me to get a life. i’d tell you that i have a life and cougar football is it. so just hush. we all pick our poison and this year mine will be coming in a cup that i might ask someone to take from me.

I’m not quite sure how to quantify the changes in Charlie’s world so I think it will best serve you all if I take a minute and give you a detail-less update that will make you wish Angel wrote this.

With all this ATCH that Charlie has been getting to help w/ his spasms we’ve introduce a unusual amount of steroids/hormones into this little boys system and now we are seeing the uber early effects of puberty. Acne, irritability, defiance and hair. Yes hair, Char’s nether regions have grown a light coif. We’re not talking about a Hendrix like fro but definitely more than your average yoot fan. Sorry if this is too much info but after a situation/sickness like this you kiss all dignity and self respect good bye and besides some of you are sicko’s and I know you’d want to know such tid-bits about Charlie’s bits. Along with a touch of fuzz on the apricots he’s had some zits worthy of Guinness recognition. Zits have been the biggest problem while being on the ATCH. Why is that a problem? Well, because I’m his father. My name is Rob and I’m addicted to zit popping. (This is when you all say, "We love you Rob.") Angel hinted to my fixation in an earlier post and she felt like I should illustrate what she was implying. Since I was but a lad experiencing the awkward changes of adolescence I immediately took a keen interest in the pizza that my face was turning into. It was like cocaine for me, it took one pop, one extrication of those poor papules and I was hooked. Bravely I have managed my addiction for many years using the faces of nieces, nephews, sibs or really anyone who will let me pick to get my fix and then the Almighty curses Charlie w/ some of the juiciest most bestest acne I’ve ever seen. I was like a tweaker, waiting till we were alone and it was heaven, an oozing and squirting little heaven. Now there are no scars, infections or anything of the sort. I am a professional and I’d happily offer my services to any in need. Lucky for Charlie we are done with the shots and the blemishes are clearing as rapidly as they came. Boo.

Charlie is smiling more and more every day. Mostly when he wakes up and mostly w/ me which is no surprise as he prefers me to any other. He’s so cute and it’s intensely rewarding for us to know that he is responding to something we’re doing and it’s not just random. The light is on in his little head, albeit dim but what do you expect, have you met his father. Dim = Rob.

Today Paula, the Hearing Therapist from the School of the Deaf and Blind came over to give us a deaf/blind simulation so we could put ourselves in Charlie’s shoes for a minute. It was one of the most surreal experiences I’ve had in my life. I don’t want to give many details largely because details boor me and also we plan on having some of you who are close to Char go through it yourself. What an eye opener it was and it’s changed for the better how I will, from here on out, deal with and treat Charlie.

On a crappy note Charlie has started having seizures again. Now these are different than the spasms that we were taking the ATCH for. The spasms are gone and now he’s started some of the "normal" seizures. We’ve been weaning him off of the Phenobarbital so that we can transition him to a different more maintenance friendly seizure drug and we believe that is the catalyst for this recent neuronal paroxysm. All in all things are looking up for the little man but in reality he’s not so little anymore. He’s become slightly rotund and only weighs 8 lbs less than his older brother. Rotund = Rob

Charlie’s best days are ahead of him and it has been so fun to see him progress as he continues to take his "Charlie Steps." He’s working so hard to get better. Whether its in physical therapy or learning to like his stander we’re pretty proud of him. Actually I think he’s working hardest to stay deaf while watching BYU games w/ the old man where the only thing bluer than our shirts is the language. We don’t know if the cochlear implant works or not but just in case it gets turned off at kick off.

Thanks Aimee

Thank you all for sending us your letters and we promise that we'll post them all but I tend to procrastinate more than most. I'm putting them up in the order we received them and this next one has a great story. Even if you've read it before read it again. We're loving our trip to Holland!

Dear Rob and Angel,

You invited people who care about Charlie to email their thoughts. I had been bouncing back and forth for a long time to send you this or not. But since you have invited, here it goes. The reason why I was so hesitant is simply you don't know me. I didn't want to seem intrusive on your family's life. So you have some connection to who I am, I am Doug Benson's cousin. I have a daughter just about Charlie's age.

Charlie's story has had a great impact on me. I've spent nights bawling at the computer screen, my heart going out to you. I don't check the blog near as often now, only every 6 weeks or so. Once I showed my mom your blog and she started crying too. See, it hits so close to home. My sister was born with mental/physical disabilities associated with microcephaly. And your story brought back so many memories, the J-Peg, the not knowing how much of her surroundings she could take in, the tumbleform chair, the wheelchairs, the times when you know she recognized you somewhere deep in her.

You may have already received this story from someone else, but if not, enjoy! I think of this poem every time I read your blog. My mom received it sometime after my sister was born, and I remember her passing it along to others in similar situations.

Welcome To Holland
by
Emily Perl Kingsley
c1987 by Emily Perl Kingsley. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -

Through time, the blessings out way the strife. I feel I am really inadequate to speak about this since I was never the parent, only the sibling. I probably don't know a quarter of what this really entails, but I do recognize the affect it has on you, your family, and all those around you. My prayers are always with you. (Attached is a picture of my sister and I. I tried to find one with our brother too, but simply couldn't find the one I was looking for).

~Aimee Marble
--
http://marblejam.blogspot.com

1/2 Smiles :)

Charlie definitely isn't looking his photographic best these days due to the steroid chubby cheeks and the facial rash and the wandering right eye. However, I had to share the "pleasant expression" that we started seeing yesterday. It's hard to call it a smile because it isn't one yet. The corners of his mouth moved back slightly but do not turn up. My mom was the first to provoke it Sunday afternoon with some "coochie, coochie, coos"- then I was able to get the same reaction last night with some "ahhhhhhh- boo's!" Now remember he is deaf (cochlear implant will be reprogrammed at the end of the month) so it is all about the exaggerated facial expressions not the words. SO what's the big deal you say....he has smiled in his sleep a few times before (really cute, mouth turned up smiles). Well... the big deal is that he reacted positively to something WE did. Up until now we have rated his mood by the absence of things like whining or stiffness. Although sporadic, it's very exciting- maybe all the binky sucking has given his mouth muscles a workout.

Sunday Afternoon

About 3 weeks ago Charlie started getting a rash. First just a few pimple looking bumps on his chin. Then it spread to each side of his nostrils and a couple days later to under his eyebrows. Every few days it seemed to have spread just a little- inside his ears, on his forehead. It is only on his face and only in certain parts of the face but it is taking all of Rob's will power not to pop them. (It's a strange Christensen tradition to pop each others zits at family gatherings. Some actually refrain from popping them themselves to have their siblings do it at Sunday dinner.) Our pediatrician was not nervous about the rash because Coop seemed to be fine otherwise but then his blood pressure started to go up as well so I called the neurologist as instructed. He was concerned about the BP and thought the rash could be from the ACTH (seizure shots) as well. The rash he said should go away when we are done with the shots but the blood pressure is concerning so he asked us to get a manual blood pressure as the automated machines tend to run a little high. After a failed attempt at Instacare we went to PCMC and it was in fact high so we are weening quicker than originally planned hoping the BP will come down and that the seizures will not return.

He has been doing a little better in therapy. He seems to tolerate bearing weight in his arms and shoulders better than before and he is alert a lot more often. He is only taking one nap a day and the rest of the time is softly moaning. He is now moving his arms up to his face by himself and can sometimes hold his binky in if he hits it just right. (not on purpose yet). He has had a cold for a couple weeks and is having trouble getting rid of it completely due to his decreased immune system so we haven't been feeding him much baby food as he is coughing more. He is liking his binky a lot and kept in in himself for 3 hours on Sunday. This is a new trick for him and we are pretty proud.

It Worked :>

I did another EEG last night after Britt went to bed and it looked much better. We went to see Fran Filloux today at 3:30 and told him I had not seen the left sided jerking in over a week and felt like the medication has helped. When he compared the EEGs he agreed and was very pleased it had worked so quickly. Protocol for this medication is to stay on the effective dose for 2 weeks after the seizures stop then start to slowly taper off the medicine. If the seizures come back we go up to the last dose that was effective and stay there for two weeks then start to ween off again. He said that there is a 50% chance of this happening. So since I estimated that I hadn't seen a seizure for over a week, he wants Coop to stay on the full dose for 5 more days before decreasing it. It will take almost a month before we are completely done with the shots. His bloodwork was normal and his blood pressure has stayed within the acceptable range for this type of medicine. Dr. Filloux said that Coop will slowly grow into his extra weight and chubby cheeks, he won't just loose it after stopping the medicine. But, if it worked that easily and chubbiness is the only side effect then I can't complain. I commented to the doctor that this was the first thing with Charlie that has been straight forward and he said "that's what I'm worried about." SO keep your fingers crossed that we are on the downhill.

And he also wants us to start decreasing his other seizure medicine (phenobarbital)!!!

Things are pretty busy around here but we are content. The seizures seem to have decreased in intensity and frequency with the ACTH shots. I'm going to do another EEG tonight so when he sees Dr. Filloux (neurology) tomorrow we can make some decisions. The original plan was to stay on the ACTH until the seizures were gone and then taper off slowly for 6 weeks. I don't think they are completely gone so he may want us to continue on the current dose or increase a little before we start coming down. I think it's been easier to give him the shots knowing that he is improving some. He no longer does the left sided jerking that we videoed but he still wakes up and startles where both hands jerk up a little then relax.

Britt has had a cold for a week and because Charlie's immune system is depressed he got it too. His cry sounds hoarse, stuffy nose and goopy eye and he wants to be held a lot. He isn't interested in doing his exercises or swallowing his tastes of baby food. I can't blame him with a sore throat. I am impressed that he is able to cough and keep the gunk out of his lungs so far. :) When we left the hospital that was one of my biggest concerns.

Before he got sick this week he was doing great in therapy. He was starting to lift his head while on his tummy and didn't hate bearing weight on his arms. Big improvement in my eyes!

A Must Read Story.

WOW!  Read this and don't skip a line.  Connie works with Charlie's
Grandma Cheryl and we can't thank her enough for taking the time to
share this w/ us.


Charlie is such a great inspiration to me.  It is uncanny the effect he
has had on my life and the strength that I have gained from your family.
I have followed Charlie's story since he first became ill.  What a
privilege it was to work with Grandma Cheryl .  She has been so patient
to keep me informed and to invite me to visit Charlie in his home.  I
LOVED holding sweet Charlie and feeling something so special about his
strong spirit.  I came away from that experience filled with so much
faith and such a feeling of peace. It is difficult to explain. I have
kept his bracelet close by ever since Grandma Cheryl shared one with me.
I continually pray for him and all those who help care for him.   I am
so grateful that you are willing to share your story and lives with all
of us!

This summer I spent five weeks teaching English in Vietnam.  I was a
bit nervous and I wore Charlie's bracelet every day.  There were many
long days that I needed to be reminded to take "Charlie Steps".  Many
people asked me about the bracelet and I shared Charlie's story with
many people.  Everyone that heard the story was touched and wanted to
know more about this little boy. They were all stunned at the strength
your family possesses.

I have taught in China for several years and I was anxious to go back
and help where the devastating earthquake hit earlier this summer in
Chengdu.  I have many friends there and I know that they have suffered a
great deal.  I spent six days in a remote village working with the
Chinese Red Cross doing relief work with many of the victims.  The
school that I had taught at was totally demolished and many friends were
killed.  I lived in a tent with a family that I was close to several
years ago. They lost two children when the school collapsed as well as
their house and everything they owned.  I cannot imagine that kind of
total loss.  I was overwhelmed at the devastation I saw. They are such
humble people and willing to accept what has happened to them.  They
invited me to share everything they had. We worked together cleaning up
and building some new homes around the collapsed school.  I found such
strength as I looked at my wrist and thought of Charlie and his
strength.   My friends asked about the bracelet and I told them the
story. We spent several hours talking about life and our attitudes about
facing adversity.  The mother, Thien Ann, was moved to tears as we
talked and shared a very spiritual time in that little tent.  The night
was stifling hot, but we sat close and shared our tears and our hope for
the future. As I prepared to leave and fly back to my comfortable home,
I gave Charlie's bracelet to Thien Ann.  She sobbed as she accepted my
simple gift and asked me to tell you that she understands heartache and
she hopes you will all find peace in your heart as Charlie continues to
teach all of us. She wanted me to be sure to tell you about her love for
the lessons of "Charlie Steps" and that she will always think of you and
your strength.  I left her with a hug and my promise to pass along her
empathy and admiration for all of you.

All of your family continues to bless our lives.  You have inspired
people around the world with Charlie's story.  I am overwhelmed at the
great blessings I enjoy and so often take for granted.  I have committed
to be more full of gratitude and to share my blessings with others who
need help.  I know your "Gammy" is proud of you.  She was quite a lady.

Thank you for the new bracelets.  I treasure them.  I am truly grateful
for the opportunity I have had to get to know you. Your  faith and
strength is an inspiration to all of us. May Heavenly Father continue to
watch over you and wrap you in His arms when you need comfort.

Sincerely,
Connie

Another Story

Its been awhile since we posted a letter from you all and I apologize. Many of you have been so great in telling us your Charlie story. We'll try and be more diligent and post these stories more frequently.
Oh, I almost forgot... BYU - 59 Ucla - 0


Hello,
I started reading Charlie’s blog when my daughter Emma was also diagnosed with meningitis (on the same day as Charlie, I think). I used to read it from the PICU and prayed for Charlie as I prayed for my own daughter. My daughter’s bacteria was different than Charlie’s, and probably not as aggressive. Also, because she was only two months old, even the low fever she had was cause for an immediate spinal tap. The doctors believe they caught my daughter’s meningitis in the first 12 hours and with aggressive antibiotics, she made it through with no repercussions. Since then I have kept checking in on Charlie’s progress and every time I am so delighted to see how your family has rallied to help with Charlie and how you and your wife have such a positive outlook. I remember seeing pictures from the hospital days and thinking you guys were so amazing for keeping it together and I know that God is your “glue”. Charlie couldn’t’ have been born into a better home, with better parents or a better family. He chose you.
Please know that one family of strangers in Miami thinks you guys are heroes, all of you!

Much love,

Adela

Ps. Attached is a picture of Emma, with her big sister Stella

Quick Update

Way to go UTES!

I had to get that in before Rob reads this.

It has been one week since we started the ACTH therapy so I thought I would let you know how it's been going so far. He does pretty well with getting the shots even though the medication is extremely thick and takes a while to inject it into his thigh.

Last Saturday (day 1) was pretty bad. His seizures were getting more frequent, more intense and lasting longer. As the week progressed he was still having more seizures but he also was extremely stiff. He would wake up in the morning with his arms fisted and straight up towards the ceiling. His head also took a lot of pressure in order to turn it to the middle and he would scream when he did therapy. Wednesday I increased his Baclofen (muscle relaxer) to the limit the doctor had allowed me and he has improved some. By Friday I think the seizures have improved some although he has started to get more angry. His blood pressure has remained low and I haven't seen any water retention :) He gets his blood checked in one more week to check for liver and kidney problems.

Update Finally!!!

I haven't forgotten about blogging but Charlie has been confusing me for the last couple weeks. He hasn't been progressing very well but nothing specific enough to put into print. His effort, connection, agitation, and stiffness varied day to day and even hour to hour. Something wasn't right but it was so variable I had a hard time describing it.

3 weeks ago Charlie started jerking around 10pm. This was consistent. He falls asleep at 8 and then would wake up sometime between 10 and 11 and starts jerking. I've written before about how this time we felt Charlie connected with us but now he was waking up and do funny movements. Typially he is throwing his arms up and to the side, his head to the left (opposite than the normal positioning) and pursing his lips for a second then relax back for a few seconds only to do the jerking again. At first he would do this 15-20 times then stop and fall back asleep. In between the jerks he would move like normal and his eyes even would follow movement. This pattern continued mostly every night so the Dr. I work for let me take the old EEG machine home to do an EEG. I didn't start until 10:00p so Britton wouldn't mess up the electrodes and ended up recording until 2a. I recorded a long time so I could make sure to get the jerking on record. It looked like he was having seizure ..... even for the 2-3 hours before he was jerking. SO the next morning I called the neurologist who had seen us in the hospital. After getting a little bit of the run around from the neurologists office we tried Phenobarbital from 17.5 to 20. We did this for a week and it didn't seem to help. He then started doing this jerking occasionally throughout the day, usually after he wakes up and his chin started twitching. We drew his blood and he was as high as he can go on Phenobarbitol medication without causing problems. Dr. Filloux worked Char in early Wednesday morning and he spent over an hour with us getting everything figured out. I showed him the seizures I had videoed and the EEG I had recorded. I figured he would say that Charlie was having breakthrough seizures and that we would try changing his medication. It was somewhat true...He believes that Charlie has Infantile Spasms. These usually occur in children under the age of 1 and are a type of seizure that typically happens upon awakening from sleep. They jerk and then relax several times. Read here or here for more info. The video below is what I showed the Dr.. I'm not sure how to cut the video so it's sort of a lot of the same thing.


I've read that there is a decline in the children's progression due to the infantile spasms. The therapists and I had been noticing this over the past couple weeks with Charlie. He had shown glimpses of better head control, purposeful movements and tolerance for therapy but all of this had either plateaued or declined recently.

The treatment the Doctor recommended was ACTH which is a hormone that increases the body's production of steroids. It usually stops the infantile spasms if the child is an infant but has a lesser chance the older they get. Dr. Filloux and I decided that we would try this more aggressive therapy despite the side-effects. If it doesn't work then we will try different seizure meds.
Things Dr. Filloux told me about ACTH
* It is an injection that I will need to give him daily for at least 6 weeks (probably more like 8-10) into a muscle.
* It costs $29,000 for a 30 day supply. Where do I sign up to sell hormones for that much profit? I'm so grateful we have insurance!
* We will know in about 2 weeks if it works or not. It is usually all or nothing. If it isn't working we will will try an increased dose once and if it still doesn't work we will taper off and try something else. If it does work then after the treatment the seizures shouldn't return.
* It has similar side-effect to steroids- excessive weight gain, water retention, “moon face” characteristics, Irritability, Anger. Sound fun yet?
* It can affect the kidneys and liver and mess with his blood sugars so he will be monitored every 2 weeks.
* It can increase his blood pressure so he will need to have to monitor it nightly.
* It decreases his immune system- This is what I am most nervous about because we are just about to start cold season. I was just starting to feel comfortable taking both boys with me everywhere. I guess we are back to staying home and limiting sick visitors.

Highlights from appointment with Dr. Such Neibar (rehab dr)
* Results from his hip X-ray show that he has mild hip dysplasia (they come out of socket) so she wants us to put him in his stander more often (3 times a day for up to 1 hr each) to erode the joints.
* Tight ankles and hands- keep stretching them every day and go back to using the leg and arm braces.
* Neck tortacollis- he still can move his head to the left but the fact that he prefers to have it to the right is making his right neck muscles stronger and shorter. We will start using a neck brace to keep his head mid-line and possibly botox his neck muscles in the future.

Britt trying out Char's new sensory therapy (Thanks Suz)
GOOD THIINGS I'VE NOTICED:
A month ago Charlie was discharged from speech therapy because she thought we could do everything she was doing at home. He seems to enjoy baby food. On a good day he can swallow ½ jar of sweet potatoes. We try to practice this everyday. He also likes to suck on pretzel sticks.

Improved vision: He is doing so great with his vision. He is now following moving objects more and more. There are no indications that he recognizes anything that he sees yet. Eyes still prefer to be to the right but now he will occasionally move them to the left. The right eye also still drifts to the right.

Deirdre

Ode to Deirdre

I would be remiss if I didn’t take the opportunity to thank my Aunt Deirdre. For the last month or so Charlie has had numerous therapy appointments of all varieties w/ any number of healthcare professionals but perhaps the therapy that serves him best is his twice, yes folks twice, daily visits by his Great Aunt Deirdre. When Charlie first came home from the hospital we knew the bulk of his therapy needs would fall on our shoulders or perhaps more honestly Angel’s shoulders since she decided to marry an inept, inane and oft times invisible Lion of Leo J. Muir. So for the first few weeks home my dear sweet and super hot wife was undergoing stress of epic proportions and on the top of her list was the hours of therapy that Charlie wasn’t getting. Largely because as a partially single parent she was raising a chronically ill little boy and a green ranger who has soccer, tumbling, craft camp and swimming lessons and there just weren’t enough hours in the day. Thanks for saving my wife’s sanity.

Editors Note: Rod is Deirdre’s hubby and one of the few people left in the world that I genuinely fear. He’s an old fart but could easily pound me to dust. Gammy is my Grandma who has left us for the hereafter. She is most directly responsible for the way our family operates and the catalyst for my zealous following of BYU football. She loved the Cougars, a good Coke (in the bottle) and a proper constitutional. We all miss her.

Rob you said that Merilee was the only family member to respond well here you go ready or not:

I remember stopping at the house the day before Charlie went into the hospital. He was sleeping in his car seat and I thought at that time what a beautiful baby he was and that there was something special about him, couldn't put my finger on it at that time, but now I know. When I heard about Charlie I was sick, I literally felt sick to my stomach and thought how can this happen to him. When Rod and I came into the hospital that first Monday that you were there and I saw Charlie my heart just broke. But I was so impressed by you and Angel that I thought if they can do this so can I. I remember the blessings that were given to you and Angel and I felt the peace and comfort of a loving Heavenly Father and I knew then that you would not walk through this alone, that our Saviour would be there to help and carry you through. I felt Gammy there with her love and support as only Gammy could give. I believe that she has been there on many occasions to hold Charlie when we could not. I felt the heartache of both of your mom's for this sweet grandchild and to a small extent I felt the same thing almost as he was a part of mine grandchildren as well. During the 2nd week in the hospital I don't think that was a day go by that I did not cry as I read the blog several times a day. But as I visited with you and Angel and Jared one day, I saw the faith that you had and that you were willing to trust in the Lord and do whatever it took to take of Charlie. I wished that I could have had your faith and your courage. As the weeks dragged on I know that you had some hard days but we did not see those, all we saw the strength and the courage to go forward. I knew life had not dealt you a great hand, but to go forward and to show us how to cope was amazing.

I was amazed as I am sure that you were at the number of comments left on the blog from people all over the world. I said to Rod, how do they find it? But I realized that as you shared your trial with us as a family that you also shared Charlie with many others who have been touched by his story and your courage.

I am BLESSED with the opportunity to see Charlie on a daily basis and to feel of his spirit. He is a giant in a tiny body. He has taught me to continue to keep on keeping on even when trials are placed before us. As I leave your house each day I am a better person because of Charlie, there is something about him that boosts my spirit and makes me want to try harder to do things that I am suppose to do. I love him as if he were one of my own and quite often I tell him that grandma D is very proud of him and that I love him. I love to see the progress that he making.

I too am grateful for a family that will rally and support us in our trials. I know that Gammy would be proud of you and her family as we continue to try and do as she has taught us to do. I want you and Angel to know that I love you both and your sweet boys, it has been an honor for me to be in your home and see the love that you have for each other and for Britt and Charlie. Know that I am willing to do whatever I can to help and that you and your family our in our prayers on daily.

Thank you for allowing me to be part of your lives.

Love,Deirdre

Shari

So I am just one of the blog followers, and everytime I read it, I crack up on the way that Rob puts his thoughts in writing. Its so funny and inspiring at the same time. I wanted to tell you all that you are such a great, close knit family and it really pays off for all of you. Charlie is so cute and the reason I got into following his blog, is through KSL, I love that site. This story really sucked me in for the fact that your all such a wonderful family, Charlie is such a doll, and the fact that I have many experiences with Primary Childrens Hospital. Primary Childrens has worked miracles for my family and I. I have a cousin that has a heart condition (that we didnt know about), we went swimming one day, she had a cardiac arrest and ended up under the water for about 7 min before I found her at the bottom. The Drs didnt give her a chance in surviving and to top it all off her parents were on a cruise. They received a message aboard their cruise ship that their daughter had drowned and they needed to get back to Utah. It was a really grueling experience for the family watching and waiting to see what would happen. She was in a coma for 3-4 weeks and then had to re-learn how to walk, eat ect. again. She has survived this ordeal, and hasnt had any problems since. She is a healthy 25 year old, married and trying for a baby. (This happened when she was 11). So I do believe in miracles.

Also I had a baby when I was 18 years old, a little girl.(I know what your thinking Rob, "wow she started young"!) Its okay its the truth. Anyway I had no idea how to be a mom, and everything was very new to me. My daughter spiked a high fever and we ended up in Primary Childrens as well. The worst thing was all the tests they had to perform on her being 1 1/2 months old. The spinal tap was the worst. We finally found out that she had what is called Renal Reflux (where her urine doesnt drain out all the way and it comes back up to her kidneys, causeing urinary tract infection), she also had a blood infection in which we stayed for about a week on IV medications (which is nothing compared to your stay, you have us beat). She did have to take medications by mouth for a year, but the problem did fix itself. Thank God.

Okay and here is another story for you (yeah, I am not done yet! ha ha ha) My husbands goddaughter was diagnosed with Leukemia (ALL) a couple of years ago, which she stayed for about a year in the hospital due to treatments, complications ect. She is doing great now, has been clear for about a year with no signs of it coming back. She does have to be tested every couple of months, but hey you do what you got to do even if it means having your kids get poked by a needle every couple of months.

I also have a stepsister that works at Primary Childrens (AMY) she was one of charlies nurses & two other friends that work there. I love that place.

Okay so this is the end (Thank God huh!). I just wanted to say that your family is awesome, and I wish the best for you all. Believe in miracles because they do happen.

Riann Taylor

I happened onto your site via another site. I am not even sure which one, but i am glad that i found you guys. My heart was regularly touched by reading everything going on with your family. And often i cried, reliving too much of my own story.

in oct of 2006 my son was born with a rare heart defect. Our large childrens hospital only see this heart defect 1 time every 2-3 years. So we were the lucky ones. In fact, we are the lucky ones. He was diagnosed at 5 days old and had open heart reconstruction at 15 days old. During this time, we stayed in the ICU on a vent for 30 days. We came home on oxygen and a pretty sick kid. However, with a lot of time, TLC and patience, we now have a healthier heart kid.

I am SO jealous of the book of charlie's story that was made by someone special for you guys. I did not know about blogging when this all happened and therefore, I sent out mass e-mails each day. Even to this day, i cannot go back and read them, even though i want to. I want to print them out and save for him, but i cannot go back there, not yet.

I am often thought of writing a book called, Grieving Normalcy. Unless you have gone thru this kind of ordeal, you just do not understand how much it affects the ENTIRE family. Our dtr was 3 when miles was born and she still has some PTSD when we go to the hospital. It changed our family for the better. I am now a part-time SAHM and a Physical therapist. (I could see many sides of your story). You world changes in such a dramatic way, you cannot do "normal" things, like just going out to dinner, or a quick dash to the store. The cost of everything is so expensive and we have great health insurance. (our son's hosp stay was $500,000 but we paid $500 total). We really had to watch out for germs and that is not easy with another kid in daycare. Normalcy has slowly approached our life and therefore the book is less a priority. However, we also work to raise money, but ours is for the American Heart Association. THis year our goal is $10,000, even though we are not close yet. It just seems harder to get people to give this year.

I love listening to all the changes and i am just so proud of you guys as a family. I believe that everything happens for a reason. WE were chosen for this as our jobs as parents, and hey, you guys are doing such a great job. Please check out our blog, http://www.proofofpurpose.blogspot.com/

thanks for sharing, hope to keep in touch

riann taylor,

mother of sophia and miles- truncus arterious repair in 2006

Sucks and Smiles

For the last while per the entourage of therapists we have gradually started introducing varied items orally and w/ baited breath monitored Charlie’s disgust or acceptance of said items. It has been long known that Char is quite fond of a pinky finger and if left to his devices he would chew any and all pinky fingers into damnation leaving the donor w/ a mutilated stump. But that’s just it, he only likes to chew not suck.

I figure there are two ways to look at this; 1. Charlie must be a Cougar fan insomuch as he isn’t used to sucking. 2. Charlie might be a yewt whilst learning from example watching his mother chew on things like 4th and 18, 17-10, "Beck under center, 13 seconds left…" etc. Or perhaps there is a less likely 3rd idea that could explain his plight. We are told that the act of sucking is very difficult and takes a great degree of coordination. Which in somewhat of a backhanded way proves my long argued point that Tommy Grady (Utah, 05-07 QB) and Steve Tate (Utah, 04-07 DB) are great athletes simply by deducement of the degree which they suck/ed ergo great coordination and capacity of that which is difficult. Comprende? Editors note: Rob is excited for Football to start Aug. 30th.

However sucking as it is related to Charlie is improving albeit at a glacial pace. Last night Ångel gave me a bottle of formula while I was enjoying my snug w/ Char just to see what would happen. Tantamount to the crimson team on the hill Charlie did some good sucking. Off and on for near a quarter hour he worked the bottle not w/ what would be considered calf like proficiency but was entertaining the idea that relearning sucking might not be a bad idea. It was only about an ounce of formula but most of it was extruded by his own power and all of which was swallowed nicely w/o any ill effects i.e. gagging, choking, aspirating.

Good Dream/Tender Moments
Last week Rob and I were cleaning the house at 11:30 at night (We both do better at night than in the morning). Charlie was in a deep sleep on the couch with his heavy exhaling snore. As I came over to check on him I saw a twitching smile. It reminded me of a newborn when they are in a deep sleep and they smile due to gas bubbles or dreaming or just because they need to exercise their mouth. Whatever was causing it, the corners of his lips turned up and then returned almost immediately to a relaxed stone face. This happened 3 times for a split second each and then I ran out to the garage yelling "Rob come quick, Charlie’s smiling". He sat down on the couch and saw 2 more split second smiles and then Charlie was done. Probably off dreaming of something else. I love knowing he still can smile even if it isn’t in response to anything

As I’ve said before, Coop gets meds at 8pm and then falls asleep for a while, he then gets more meds at 10:00 to help him stay asleep. Occasionally Rob and I delay the 10:00 meds an hour or so, on purpose, so we can enjoy a little cuddling when everything is calm and we can just attend to Charlie. He will calmly wake up and look around and seems to connect with us more so than in the day. His body is not very active this late at night but his eyes seem to be more active than usual and he will just stare at our faces.

A week ago during this time, I was placing my finger at the base of his fisted palm. In the past, in order to get him to hold onto your finger we have either wiggled it into his fist or waited until he opened his hand and then quickly put it in. This night, however, he purposefully (a word we use sparingly because we aren’t sure he means to do most movements) opened his hand and then tightened it around my finger 8 times in a row. (That is why I can say purposefully). It was like he had figured out that if he wants to grab something he feels that he first needs to work against the stiffness/tone in his body and open his first and then close the fist again. What a discovery for him.

Emily in PA

I've been reading Charlie's blog for a while now...some friends of mine had a link to it on their blog, and I was immediately drawn in. You guys have been a huge inspiration to me, especially as I've faced physical challenges with my little boy. Our son (our first baby) was born last April with a congenital defect in his right eye that left it sightless and malformed to such an extent that doctors thought it best to remove it last August. He has a prosthetic eye and is otherwise a healthy, happy boy, but the process of acceptance and understanding has been such a rollercoaster for me. And although I was only 2 at the time, my older brother passed away after contracting meningitis when he was 4. That has been a trial some members of my family have never been able to quite get over. You are so blessed that Charlie was able to fight through it, even though it brought a different set of trials into your life.

I know that physical and mental ailments come in all shapes, sizes, and levels of severity, but that doesn't lessen the impact these ailments have on family members who are trying to cope. And I think your family has done an unbelievable job of coping and being obvious supports for those around you. I'm sure you have been bouyed up through prayer and support from others, and my husband and I have also experienced the blessings that come when others pray and fast on your behalf. I just wanted to say how much I admire your strength and your determination to move on in life, because, really, what else can you do? You've been such an example to me and helped me come to terms with the fact that everyone has their own trials and Heavenly Father has a plan for each of us--our children are His children and He knows what will be best for them, even if it sometimes causes us some pain or heartache as parents. And we are His children and He knows what's best for us, even if we hope and pray the outcome might be different. Our little boys are so precious to Heavenly Father that He knew they could handle whatever this life threw at them, and so could we.

Your family is in my prayers constantly and although I'm sure there's a "creepy" factor to getting random emails like this, I hope you know your family is an incredible example to those of us who hear of Charlie's story through the grapevine!

Sincerely,
emily (in Philadelphia, PA)

Angie Nadauld

You all don't know me from a whole in the wall, and you probably will never know me. I have been following your story for quite some time. Call me a blog stalker if you will, but I get really intrigued by stories of young children. I got to your blog through little Andrew Mathis, who also has no clue who I am but I know Andrew's Gramma as she lives in my ward.

Anyway, I will cut to the chase, little Charlie has touched my heart. I mean that with all sincerity. I have a son his age, and a son who is four years old. I often times would get frustrated with my two little naughty boys, and I still do, but I have such a greater appreciation for them. I saw what happened with little Charlie, how he was healthy and happy, to now being deaf and blind. How devastating. But the way in which you handle the trials you have been given, have touched me beyond belief. I am sure you have gone through many stages of grief, but I am so touched at the complete dedication you have to that little guy. It is amazing to see how you have accepted the trials you have been given, and enjoy the best parts of life.

I am a huge Ute fan. THis is another area of major change of thought. I have NEVER been a fan of BYU. I don't know why, maybe it is the fact that I am a U of U Alumnus, or maybe I just don't like the color blue, and the fact that their QB cried on TV after losing a game had a huge impact on my outlook on the team. But the fact that both of those football teams came and spent time with Little Charlie, have changed my out look. BYU is as cool as the U Of U.

So to summarize, Charlie and your whole family has taught me to appreciate what I have. I now appreciate that I have two boys that are capable of being naughty. I appreciate that I have two little dudes that will fight and steal toys from one another, because, who knows what may happen. It is all in the Lord's hands. I have learned to be grateful for what I have, and because of that I enjoy my boys that much more!

Sincerely, Angie Nadauld, a complete stranger!

Marilee Christian

Fortunately for you all we have had some good response to my plea to help w/ the blog and now you will be able to hear more from competent, sane folks and less from me. There are great stories out there and starting w/ today’s post you’ll get to hear them. Those of you who are thinking about contributing hopefully in the next few days you’ll hear what is shared and you’ll stop thinking and start doing.
This first offering is from Charlie’s Aunt Marilee who lives in lives in “The Volunteer State” and was up here this summer and had a chance to see Charlie for the first time live. She has been a frequent commentor on the blog and I always appreciate her wit and humor. Marilee is no stranger to the angst of full-time care as a few years back her husband David suffered a stroke and she has since served the mission of a selfless caregiver. Thanks for the submission.

My Charlie Story


To quote Rob “We’d love to hear how Charlie has influenced you, whether big, small or not at all.” You asked for it—you got it.

I first heard of Charlie’s illness and blog through an email from Susie. What a terrible thing for Charlie, a child I had never met or held or seen. But my heart was also broken for the people I did know: my precious nephew and his wife and his grandma, my sister, who has always put her family above all else. Day after day—no, hour after hour, I checked the blog for some word that Charlie would be okay. Alas, that was not to be. But then something else happened. I found my family again.

By following the progress, the ups and downs, the gains and losses I gained what I had thought I had lost; an everyday connection with my sisters, brothers, cousins, nieces and nephews. Is that selfish? There lies a sick child, a gift from heavenly father, suffering and struggling and I’m glad that there is a blog to give me a way to connect with the sorrow and pain of my family.

And, whoa, there were pictures. There, standing by Charlie, was my family. My sisters and brothers, children I remembered as babies--grown, and some, like Charlie, I saw for the first time.

Then, as word of the blog spread, there came many more. These were people who were inspired to comment and share their thoughts, as well as prayers, for a child they did not know. But for one reason or another, they could empathize with Charlie and his family’s plight. As I read their stories, along with Charlie’s, I was amazed at the faith and resilience of the human experience. Now, I had always understood that in theory, but there it was, in the comments of families of other children who had suffered in illness or accident.

I have not always been strong and I didn’t expect to spend my golden years as a caregiver, but reading the excellent adventures of Charlie and his family have given me the great blessing of –hey, my life ain’t so bad!