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