5K tomorrow!

Hey everybody,
The BIAU 5K is on Saturday at 8am. We are so excited for this event and can't believe the turnout supporting Charlie. We have talked to the people at the BIAU and they plan to stop online registration tonight... So, if you haven't registered but plan to run, register tonight at http://www.biau.org/ or you may be out of luck. The BIAU is a little overwhelmed having been inundated with so many Charlie fans - there are over double the amount of people this year than ever before!! Here are a few details about the race for those who've registered...

Liberty Park is located at 600 E. 1300 S. in SLC. The race starts and ends at the south east corner of the park. They ask that you use the south entrance. Parking is limited, so please carpool if you can. The race will begin at 8am, but you have to get there early enough to park, get your race apron and race t-shirt. If you signed up for a Charlie shirt you will be receiving those in the next couple of days. We want to have a picture taken of all of Charlie's fans before the race because we will lose people if we try to do it afterward. So, please get there early enough to park, check in and get your stuff and be ready for a group photo at 7:40am. We will only take the photos with one camera, but will make those photos available electronically.

Charlie plans to be at the race and is very excited about all of his friends being there to support him and his family. We would ask that you please be considerate of them and try not to overwhelm them or overstimulate him. He is also still trying to get used to the germs at home and from his family, so we would ask that you not touch him as it is risky for him to be around so many wonderful and random people.

Again - we can't thank you enough - those of you donating the shirts, art, water, time, etc. and those of you supporting this wonderful little man by running and walking for such an important cause to us. You are all heros to us.
-meghan - charlie's aunt

Coop and Trisha :-)

When I decided to come over last minute to spend my four-day off work with Cooper I didn't think that I'd be trapped in by the duty to post on our little superstar's blog. Anyhow, I did manage to get out of the state without doing so and back to Colorado, but my family guilt prevails and I know that before I go back on shift in the morning I must post of my incredible time with Charlie and his amazing family.

I hadn't been able to come over to visit during the time Coop was on holiday in the PCMC suites due to school, fire academy and work. It was hard being so far away and not being able to "help" with all that my amazing family did during the last three+ months. Rob and Angel were generous to a fault (again) and offered me some travel vouchers they had to come over. It was a last minute plan and yet nothing could have been more perfect. Thanks Rob and Angel for being such amazing people!

During the last four days I got to experience first hand the bumm-patting that must not end. Cooper knows what he likes and has no intention of letting his holder slack off. I learned all of Coopers meds, routines, bathtime, dressing changes, feedings (and to be absolutely certain that all the caps are on really tight), venting, and positioning fairly quickly and was able to take some of those tasks over for a couple of days. Cooper, Britt and I spent some time alone together while mommy ran some errands and we even got Rob and Angel to go out on a proper dinner date! We had big plans to go for some good walks but the weather had different plans and brought rain nearly each day. We'll get those walks in on my next visit in June.

I know that you all have some idea of what an incredible person Angel is, but you have no idea how organized she is with Charlie's care and with what simple grace she glides through her days. In addition to caring for Charlie, she manages to dedicate quality time to play with Britton; playing hide and seek, race-cars, shooting of various weaponry, computer learning games and more. She is on top of everything, has a clean and tidy house, laundry is always done, appointments are made, errands run, everyone is fed and she never loses her bright smile through it all!

Rob, Angel, Britt, and Charlie... Thank you so much for allowing me to share your gorgeous new home, your positive outlook on life and all that it brings, your glimpse of fame as a "Wasatch Woman", your massive bag of Cinnamon Bears (damn them!), and most of all the truest little angel I've ever known...Charlie.
In early January I was in town and spent some good time with all of my fantastic family. Charlie and I played lots at Grandma Cheryl's house, played peek-a-boo, bounced, and we ate lots of dinner together. Charlie is a huge fan of food and the best little eater ever. his smile would brighten a room no matter how large and he was the happiest little guy in the world. As sad as it was initially to see him lying so locked up deep inside, it's not so terrible in reality. Charlie is still the sweetest little guy in the world, I know that smile is still in there and hope to see it again sometime soon. I loved my time holding him, soothing him in whatever way I could find, talking to him and gazing into those bright blue eyes. My very favorite time with this little angel was after Rob and Ang had gone to sleep at night and Coop and I had a few hours to ourselves. He would get so upset, have a hard time being soothed and we'd end up lying side by side on Britton's bed, with Charlie cooing and me patting him and talking to him about all kinds of things until he calmed and could go to sleep for the night. I am certain that he knows how loved he is and perhaps he can even hear what we are saying or see us loving him. He is a remarkable little spirit, has a big brother who adores him, dotes on him, and loves to help in his care, two of the best parents any child who wish for, an extended family who'd do anything in the world for him, and an endless network of friends across the globe that continue to pray for and cheer him on.

I know that I'm a better person for having spent a few days with Super Cooper and have a renewed sense of exactly what is important in life.
I love you Coops!!!
~Aunt Trishie

Thanks Sport.

Trish (sister of Rob) just left to the airport to fly back to Colorado. She has been with us for the last four days and has helped us out immensely. Angel and I so thankful and well rested. Trisha has promised to post later today about her days here w/ Char so we can all wait w/ baited breath for that epistle. Thanks Trish.

Who Is The Super Nice Person?

All right folks, I can’t stand it anymore. The gnomes in my dome are going crazy with something I just can’t get a handle on and I am soliciting all in blogland for your help. First of all I think that it is meet that you get updated on my sweet little boy’s last few days before I bother you all with what may seem benign trivialities but in my world find appropriateness as a vexed obstacle. Charlie is a champion. We’re slowly getting better with the administration of his care even to the point I was found bragging about the streamlined capacity and competence in which I am able to provide that care. That was, however, all well and good until this morning when I woke at 0600 to furnish required meds for Char and proceeded with the 0800 schedule and completely air balled the 0600 schedule. Gave the meds, thought nothing of it, and by some omnipresent act of luck the egregiousness of my error came to me just in time to stop my wife who was about to give the 0800 dosage and stopped what would have been a double/over dose for our little hero. Karma. She, with hardly a whinge acknowledged her husbands gross incompetence, gave the 0600 doses in lieu of the premature 0800 meds and by no help of his father Charlie is well. His mental and physical condition is largely unchanged since we left the hospital with his best hours coming at night (thank the Almighty) and his days full of bum patting, pooping and irritability induced squeals that at times are only audible to Champ (the dog). He still is super handsome and when I hold him and he is content I swear that he’s looking at me. I just wish they had a test they could do to tell us if his peepers are working and really why can’t they? I saw on the tube today that they can wipe a ducks rear end and determine its country of origin but they’ve yet to develop a way to test eye sight in uncooperative infants. Travesty.

Lest we digress there is a mystery in the House of Char and I need your help. Saturday morning a most unbelievable gift was dropped at our front door. Some selfless saint of a person has completely restored my faith in humanity. Throughout this experience w/ Charlie I am continually impressed by how many truly good and kind people are out there and Saturday was no exception. Someone out there canonized our blog and anonymously delivered it to our home. Understand, this gift is a compilation of every lame and blathering post that has been put on this blog, every picture and the compliment of all the priceless comments you have all added (In my opinion the comments are the only thing worth reading) bound in journal like fashion page protected and all. But here is the kicker, on the first page of volume one this nameless individual included a hand drawn picture of Charlie that if nothing else caused a grown man to weep like a little girl. It is a spectacular likeness and a gift we always treasure. Thus my issue, I want to thank you. I want to shake your hand and let you know how grateful we are for not only this gift but for the hours, energies and assets spent on its construction. Admittedly I am a proud man but not so proud that I can’t or don’t realize when a debt of gratitude is owed. Thank you for thinking of our family and caring enough about Charlie that you would provide this gift for his parents. It will always have a place in our home. Now someone out there has to know who did this and I want to know. Maybe you were in on it, maybe a little bird told you, either way it’s time to let the cat out of the bag. Credit should be given for such an undertaking. The floor is yours, talk amongst yourselves.

SUPER B-day Bash :)

So after a week of hanging out in exotic locals i.e. Blackfoot, Dubois, Dillon, Navy and Montpelier I was quite excited to return home and see how the new life of having a chronically ill child would be. I missed my boys and the smok’in hot mom that takes care of them. Charlie is in great shape, considering, and Angel reeks of brilliance. You’d never guess that she was the one that was hesitant while still at PCMC to bring Char home. She has this whole 24/7 care stuff down pat, charts and lists and alarms and schedules and all without any apparent twist in the knickers. I had both boys Saturday morning for a few hours, ALONE, and long story short it went off like a fart in church. I don’t know how she does it or how any of these rare breed of mothers in similar care situations do it for that matter.
I didn’t think that I’d be the one to say this but I miss the folks at NTU. Not merely for the top notch care that we received but also the friends we made. I know some of you up there are blogstalkers so when you read this spread the word that Charlie’s dad said thanks and he was totally bummed that he couldn’t be there to say good bye in person this last week but somebody had to go to work in order to pay their salaries. No work = no insurance and well we know that that dog just won’t hunt. By the way, tell Judy and Dear Joe that you all need raises, big ones, except Dave and in that case his tech should get double. We know who does the heavy lifting. Now if you are at work, get off the computer and go save lives.
Now that things are getting settled here’s the word according to Rob on why it sucks to have a kid in the hospital.

1. Duh! Your kids in the hospital.
2. Driving back and forth from home to hospital and vice versa.
3. Rainbow Café.
4. IHC cable tv.
5. Having to bug Ramon for slushies.
6. Naugahide couch/bed’s.
7. Duzy’s sense of humor.
8. Battery Boy being clueless.
9. Randa doesn’t work every day.
10. Neale and Janine only come once a day and think they need weekends off.
It would only be prudent to also include an itemization of positives since returning home as far as I have deduced them.
1. Duh! Your kids not in the hospital.
2. Sleeping in your own bed, next to a super hot lady.
3. Don’t have to worry about where Britton is all the time.
4. It smells way better here.
5. No more Nauga’s will die for our comfort.
6. You can see outside.
7. It doesn’t take ½ hour to park.
8. Unbelievable acts of kindness from strangers.
9. Charlie not getting bugged every 2 hours for vitals and random checks.
10. It’s about 3000% cheaper to be home.

Last night the Christensen house was bumpin for Char’s birthday party and I’d like to kindly thank the neighbors for not alerting the authorities when things got out of hand and the techno got too loud. We had a great time even if it was just our small mild mannered family that thrives on respectability and tact. Charlie got a whole new wardrobe, all of which is very G-tube friendly. You see our little man isn’t so little any more and whilst in the hospital he has skipped a size so he was looking a little homeless for a bit but no more. All new duds that I’m sure over time you will be privy to through upcoming pictures. Angel had the party all Super Man themed and a huge cake with the Super Man logo and it said “Happy Birthday Super Cooper.” He slept through most of the party due to some professional bum patting. The whole fam is getting rather proficient w/ the old booty slap leading me to believe that some may have some prior experience. Anyone willing to fess up?
Here’s some pic’s I am keenly aware that you’d rather see them than continue to read my uneducated blather.

Family Picture

Clark Kent and Superman or RyRy and Britt

Getting his 8:00 Meds

Everyone got birthday cake except the birthday boy. He had delicious meds.

Aunt Susie

HAPPY BIRTHDAY CHARLIE !!!

The big man turns uno today. We'll post some pic's later of his rage'in party tonight and update you all on how great it is to be home. Thanks for the continued support.

We're home :)

Turning on the cochlear implant. It took 2 hours for programming and teaching. Dr Such-Neibar stopped by because she was expecting him to be more irritable but we didn't see any change.
Testing the car seat to make sure it supports his head. When we came in to the hospital he was in an infant carrier but since he has grown we needed to upgrade


Coop was so sad to say goodbye to the "baby whisperer" Janine
Goodbye Shannon- We will miss you
Rob had been looking forward to taking Coop in the wagon ride ever since we got here but we never made it so I had to use it to take him to the car just for a picture. Daddy- Coop has missed you this week.
Britt woke up from his nap and was really excited to see his little bro was home. He immediately went and got a stuffed animal for Charlie and placed it in his bed and then tried to tickle his toes when he was fussing. He's going to be such a great big brother.Sweet dreams.

Coop has done fantastic since yesterday morning. He has had several hours where he has been awake and calm. He slept the whole way home and was great pretty much all day. The home health nurse came by to set up the feeding tube and assess him. She said everything looks fine so we probably won't need to see her again. He is also set up to go to speech therapy, physical therapy and occupational therapy once a week. We go back to see Dr. Such Neibar in one month and will get the g-tube changed to a smaller button at that time. Last night it took me 30 minutes to figure out the 8:00 medication but luckily I have already gotten better. Charlie did really well throughout the night and today with only a couple periods of fussiness. I am loving having him home again!!!

Last Day :)

This morning has been a whirlwind. Charlie threw up again last night at midnight, the exact time he did the night before. It was after being off of feeds for hours so I haven’t really found a connection yet. We’ll see what tonight brings. This morning we went up to the audiology department for 2 hours to program the implant. He slept the whole time so the audiologist programmed it to average comfort zones. We are supposed to experiment with 3 different programs and different volumes over the next two weeks and meet with him to reprogram. The process usually takes 6 months to find the correct program with a healthy person so Jason thinks Charlie could take a year to find the right parameters and teach his brain to recognize it. We are looking to be leaving around 1:00 this afternoon. I will definitely keep posting about our transition however it will be less frequent so please be patient while we figure out our new normal. Thanks again for everyone’s support and love. We rely on it daily!!!

GOODBYE PCMC. We will miss you!!!

Last Night at PCMC :)

Well, as I sit in the hospital for the final night I have a bitter sweet feeling. I don’t think it has hit me that we are actually leaving. My car only knows how to get to the hospital and home anymore. We have been looking forward to this day since we came into the hospital and now I hate to leave even though I have been well prepared. It’s like the training wheels have been taken off and we are now supposed to ride by ourselves. The freedom will be great but I liked the reassurance of something to fall back on.

I have been a little crazy lately with getting all of the last minute things figured out for our return home so I haven’t posted much (or returned phone calls- sorry everyone), but not much has happened with Coop either. He has been pretty well behaved today and even slept through his bath. He has had a lot of his new friends stop by for some last goodbyes. Everyone is so sweet! I feel such a strong bond with the people here because they have helped Charlie get better and I can feel the love they have for him.

To everyone involved in Charlie’s care at PCMC. THANK YOU!!! And WE LOVE YOU!

T Minus 1 day!

Coop is having a nap right now while Meggie is doing some rocking. He has had some PT this morning in his room in an effort to learn to live without the gym. Last night our little man was able to hurl (threw up) to the end of the bed so Auntie Susie is going to get a bath on the afternoon schedule. Grandma Kathi reported that his tummy has been a bit rumbly today so we are grateful for the venting tube. The goal is to blow this joint tomorrow afternoon, but we aren't going to get too excited yet as Super Cooper has a way of doing things his way!

Thanks for all the prayers and support. Keep your fingers, toes, (and maybe eyes) crossed that all goes as planned.
--Auntie Susie

The End is in Sight :)

He had another good night and has been awake for 2 hours and is semi-content. Our plan is to start getting everything in order for discharge on Wednesday afternoon. We have ordered more of the venting g-tube bags so hopefully they will arrive by Wednesday. The ear surgeon came by and said everything looks good so we are clear to turn on the cochlear implant. We will meet with the audiologist on Wed for the programming. We are also having the eye doc come check out his vision before we leave so we know where we stand. We are excited to finally have a discharge date!!!

3 month Anniversary :)

Today Charlie has been in the hospital for 3 months straight. Here are some pictures to compare. He now weighs 24 lbs (19.4 lb when we came in) and is 29 1/2 inches tall.

3 months ago this is how Charlie looked. An IV in every limb, breathing with a vent and not doing any voluntary movements.

This is how he looks today. Only 2 tubes and 1 will come out tomorrow

IRob is not allowed to be by Charlie because he has a cold. He hates it, but maybe I can convince him to post from home but in the meantime I'll update (Angel). Charlie had a great night, only waking up once at 4:00am. He is now fully titrated over to the g-tube (all of his formula is going in his stomach) so the tube in his nose will probably be removed tomorrow. We will keep him on continuous feeds even after we go home and then down the road we will try bolus feeding (feeding all at once like meals). I haven’t seen any liquid or air in the bag yet but he is tolerating his feeds well so the venting tube must be working. Rob bought Coop some flavored lip smackers (chap-stick) to encourage positive feedback for sucking his lips. He seems to like sucking on his bottom lip.

Susan and John spent their "date night" visiting with Coop!Cami Poulson Lane (married Rich Lane). Rob and I went to school with Rich. Such a small worldLouie & Rodrigo- the coolest kids in PCMC. They have races down the hallway in the middle of the night and Rob is often found in Louie's room playing guitar hero until the wee hours of the morning. We will miss them.

Since the weather is so nice today we went outside for a walk to let him get some fresh air. Charlie hasn't been outside for so long and he really seamed to like it. By the fountain in front of Primary Children's Hospital

I saved this picture for last because it was my favorite part of today. When he was basking in the sun his pupils reacted and became the same size as mine were at the time.

A Day at the Gym with the Christensens

Britt thrilled to hang out with his little brother.

Rob desperately trying to teach Britty to balance...

and teaching him the ways of killer ball.

Britty only gets to play "hard" with daddy.

He loved playing on all of Charlie's rehab equipment and especially loved trying to crash into Grandma on the bike.

Coop was not hating the stander!

Britty being attacked by the tickle monster.

We know who is the better looking of the Christensen men!

Angel power lifting her big boy.

Beautiful baby boy

It might be working?!?

Mom and nurse Becca after the Farrell Valve was connected.

They hooked Charlie up to the vent tube about 5:00 p.m. last night. They started by having 40 cc's go through the NJ tube and 10 cc's through the GT tube which sends the formula into his tummy. The red extensions of the tube sends formula to his tummy or problematic stuff up to the vent. I was worried that he would have a tough night since he hasn't had food in his stomach for a long time. Good ole Char is doing fine. He slept from about 11:00 - 4:30 and has responded to the bum pats thoughout the morning. Right now he is getting half of his feeds through each tube. Holding him is a challenge since there are loops of tubes all over. All in all, he's having a good morning.
G-ma Cheryl

It Arrived :)

Coop had another possible seizure last night while Jared was rocking him. He gagged a little, immediately started sweating, eyes were wide open with a blank stare. It only lasted 5-10 seconds and then he was back to fussing. Neurology said he is already on 4 seizure meds so they aren’t going to change things unless they become problematic. Other than that, things were fine again until 2:30 when he woke up crying and could not be consoled until the Motrin kicked in at 5:30. When I talked to Dr. Such-Neibar this morning she was unaware that it could take 2-4 weeks for the tube to arrive so we made a plan to try to get everything in order to go home next Tuesday. We have an out-patient appointment with Dr. Warren(surgeon) and Dr. Norby(audiologist) to turn on the cochlear implant next Wednesday so she will try to move that to Monday while we are still here. Then an hour after we made these plans to go home guess what arrived…. the venting g-tube. Becca, our nurse, is finding out how to connect it right now.

PS to Troy=Rob is coming back today so he should be posting the whole weekend. I think I look forward to his posts more than anyone.

In Limbo

Grandpa Brian said last night went really well. Charlie fell asleep around 11:00 and didn’t wake up until 5:30. The nurse assessed him and then Charlie took a nap in Grandpa’s arms for a couple more hours. He didn’t have any more seizures and we still haven’t received the venting g-tube so it looks like we will be here at least throughout the weekend. Im getting bits of the story with the tube. I guess the hospital does not stock this item, possibly because it is new or rarely used and they would need to buy a case of 30 which is $500. Currently the hospital only needs two (one for Charlie and one for another pt in the PICU) so they have asked for 2 samples to be sent. Dr. Jackson called Material Management on Friday April 11th. Materials department called the floor on the next Monday to verify to order it and were told we no longer needed it. A few days later it was realized we were in fact waiting for the tube and it was ordered either Thrursday of Friday last week. Now for the kicker...it takes two to four weeks for delivery and there is no way to track it!!! So if that is true the soonest we would expect to see it would be a week from today. I'm not sure that Terry Such-Neibar realizes this part of the story because she told us Monday that she expected it to be here Wednesday. When I see her in the morning I'll try to clarify everything and get to the bottom of the story.

Since stopping the Miralax yesterday Coop has been crying less and sweating less. Maybe now that his sweating has decreased we can start dressing him. We just got back from PT where he was pretty upset so he didn’t do very well at trying to lift his head. Because he was mad already we tried the stander again and he was bugged but not totally ticked off. That has been our day so far.

last chance

so it's your last chance to sign up for shirts for the Brain Injury 5K May 17th. click the link on the right side of the page to make your requests. I need to have all the requests in by Sunday 4/27. And don't forget to go to www.biau.org to register for the race. we're excited about the race all of the support you've shown. -meghan

Sweet Potatoes :)

The day was better than last night. He has been relatively calm and very responsive to the bum pat. Yea! This morning we went with Janine to physical therapy/speech therapy. He tried a small taste of sweet potatoes with the same technique as the pudding yesterday. The fact that he didn't clamp his mouth closed is considered a positive sign. He is not opening his mouth and swallowing like a normal kid but when the therapist's finger is in his mouth with food on it he investigates it with his tongue. Because he hasn’t passed his swallow study we are limited to giving him a taste of something once a day. Janine said he is holding his head up a little again and is calmed with patting his bum, lips or chest.

Dr. Brockmeyer, the neurosurgeon, came by to let us know he looked at the CT and there are no changes. So there is not a good explanation for the breakthrough seizures. I also should have been more specific on the CT results from yesterday. I said they were normal and that is not necessarily true. Charlie’s brain will never be normal. I should have said “the shunt is working normally” because there is not any increased pressure in the ventricles. The CT looked like the previous scan – no change. Dr. Henrie stopped by on his way out and told me that Charlie’s seizure medication level is within therapeutic ranges so we will probably not increase his medication at this time. He also talked to neurology about the episodes and they feel the seizures are probably partial-complex because of the eye twitching. Either way they were not too excited about them and if they happen again we are to give Ativan to stop them and then check the level again. I told Coop that he had to continue to behave for Grandpa Barlow tonight.

Since Charlie has become a celebity he has had all of his cute girlfriends come to visit.Andrea and Ashley

Andrea and Jada Rose