Happy December!

Archie is still eating like a champ (and inspiring Josie to do the same sometimes!). He is still crawling and pulling up and he will plant his feet when we help him to a standing position - he used to pick his feet up and not bear weight on them at all...His therapists are trying all sorts of methods to get him up and walking but his muscle tone is still very low...

We spent Thanksgiving in Taos, a little ski village north of Albuquerque - it snowed about 6 inches while we were there - so we went sledding, listened to a Christmas mariachi band and made ornaments for the town's toy store Christmas tree...we will post pictures up soon!

we are looking forward to Josie's preschool Christmas pageant, Michelle's visit, our birthdays and Christmas of course!

Thanks for checking-in on us and have a peaceful holiday season and a great '08 everybody!

Thankful!

Archie has stayed healthy and has not been in a hospital for over a year! YAY! (this time last year he was getting ready to be discharged from our hospital here in NM)

He is still going to the feeding clinic three times a week, "walking" on a treadmill, and receiving physical therapy at home. He is eating 3 meals a day and drinking milk from a sippy cup (with help from Mom and Dad). He is still on the feeding tube but we are hoping he will be off it this Spring. His weight has stayed the same but he is getting taller! He is showing interest in climbing stairs and is pulling up on everything, including our legs...he refuses to say Momma but loves to say DaDaDa!

New Mexico Donor Services is promoting organ donation this month so our local ABC news team is doing a feature story on Archie for the news tonight - we will try and post a clip here soon!

Josie's preschool is having their Thanksgiving party tomorrow - she is very excited because her class helped make the pumpkin pies! We haven't had any more calls from "Hollywood" but two new movies ("Brothers" starring Natalie Portman, Toby McGuire and "Not Forgetten" starring Simon Baker) are getting ready to start filming in New Mexico and they are looking for extras, so we'll see!

Chris is in the middle of the November sweeps and so far the ongoing writer's strike isn't affecting the ratings (knock on wood).

Robin is looking forward to the best birthday present ever! Chris is flying in Michelle for a visit next month! :) :) :)

Have a safe, happy and delicious Thanksgiving everybody!!!

Pumpkin

We had a great trip to Florida! Archie was a trooper during the 3 1/2 hour flight. Since we were back down at sea level (compared to 5000ft in ABQ) he had a lot more energy and a good appetite (stage 3 baby food!) He loved snuggling with all of his Aunts, Uncles and Grandma Iller and watching all of his cousins run around!

Back at home we went to Balloon Fiesta and took Archie to his 1st Pumpkin Patch! He loved the hay ride the best. We consider this his first official Halloween since last year at this time he was in the hospital...

He is crawling around and getting up on his knees to reach things and his physical therapists have him "walking" on a treadmill now too...He is staying healthy (knock on wood) and we hope he continues to do so especially since cold and flu season has begun!

Chris is getting ready for Fall sweeps and has many promotions planned - so far ratings have been pretty good for the new shows on The CW and My50 TV - Gossip Girl and Reaper are worth TVO'ing in case you are bored with the other networks...

Our neighborhood costume contest/chili cook-off is this Saturday - woohoo! other than indigestion, I'm hoping it will be a success...

last but not least little Josie is ready for Halloween - she's been watching Its the Great Pumpkin Charlie Brown and old Casper cartoons, she helped decorate the house, pick out pumpkins,wants to wear her skeleton costume every day and thinks its silly that Christmas trees are already in stores!

the gift that keeps on giving...

I came across the following story after reading about a little boy who is waiting for a heart transplant. He and his Mom have been staying at a Ronald McDonald House for over a year and a half while they wait for a "perfect heart". It makes our 5 month stay seem like a walk in the park...Organ Donors are heroes because if it wasn't for them, Archie and millions of other people might not be alive today...please read this story:

Don't Take Your Organs to Heaven

On February 19th, 1990, at Memorial City Medical Center in West Houston, a little girl was born one month premature. She was only 3 pounds 9 ounces and worse, she was blue. She was quickly transported to Texas Children’s Hospital where she was diagnosed with several heart complications, the greatest being Pulmonary Atresia. This meant that she did not have a working Pulmonary artery to carry blood to her lungs to become oxygenated. That is why she was blue.

Her parents baptized in the hospital with sterilized water fearing she would die.
Her parents prayed and waited.


For 10 days they couldn’t hold their baby girl. When she was 10 days old the doctors performed a minor surgery to insert a shunt to connect what needed to be connected in order for her to grow strong. Her parents held her for the first time. They were told the only way she would survive long-term was if she received a donor Artery.

When she was 4 yrs old, she was strong enough to receive that precious gift. That little girl stands before you today.


Hello, my name is Katy Portell and I am here to plead with all of you 18 and older to sign up to become an organ donor and to encourage those of you younger than 18 to sign up to donate as soon as you are of age.

The need for organ donors is real.

Today I’ll demonstrate the reality of this growing need by giving you statistics, stories like mine, general information, and also by addressing the most frequent concerns regarding organ donation.

As you drive around in your hometown you may spot the bumper sticker that reads “Don’t take your organs to heaven; Heaven knows we need them here.” That is the issue I’d like to address today; the growing need for organ donors. As of 1:01am yesterday, there were 95,225 candidates listed with UNOS, the Unite Network for Organ Sharing. That means that 95,225 people need some kind of organ transplant. As you can see the need for donors is great.

David J. Undis, the Executive Director of LifeSharers, a non-profit organ donation network, reported the following disturbing statistics in a May 2005 news article. “April is National Donate Life Month. During the month, over 500 Americans waiting for transplants will die waiting. Their deaths will be needless. Americans will bury or cremate almost 2,000 transplantable organs during National Donate Life Month…Only about 30% of Americans are registered organ donors.”
Though this article was published in 2005, there unfortunately has not been a significant increase in organ donors.

Giving an organ is giving life and that, you could easily say, is the ultimate gift. It is the gift that so many have received. The gift I received. I never though much about my donor, until my mom and I joined the local Mended Little Hearts Group. Mended Little Hearts is a support group for families whose children have been born with heart defects.

There we met the Stockwell family. Shawn Stockwell is currently 8 years old and is residing at the Ronald McDonald House at Stanford Medical Center with his mother and two sisters. He has been waiting there for heart transplant for over 322 days. Shawn has amazing strength and perseverance as does his whole family. And yet they are left waiting for the perfect heart; for that miraculous call that will lead to the next road towards recovery. But there is a shortage of donor organs. Not enough people realize what that gift could mean for someone else. Someone like Shawn. Someone like me.
Shawn’s mother recently wrote, “Before Shawn, I would have NEVER even thought of donating my child’s organs – and now I live in a world where my child’s life – as well as MANY others – depends on it.”

The need for organ donors is real. The Board on Health Sciences Policy reported in their book Organ Donation: Opportunities for Action that “the likelihood that over the course of a lifetime a given person or someone that he or she cares about will need a solid-organ transplant is surprisingly high (about 1 in 5).” That means that 1 in 5 people will either need or care about someone who needs an organ transplant.

Now, let me tell you a little bit about organ donation itself. According to the United Network for Organ Sharing, organs that may be donated include the heart, kidneys, pancreas, lungs, liver, and intestines. Also eye, skin, bone, heart valve, and tendon tissues may be donated. On a waiting list for transplants, the financial or celebrity status of an individual is irrelevant. The donated organ will go to the individual who is in the most severe state of sickness, and also according to their time spent waiting, blood type, and other medical issues. You should not decline from becoming a donor due to age or medical history. At the time of death the proper medical professionals review your medical history to determine whether or not your organs may be used. Apart from having “organ donor” noted on your license or carrying a donor card, if you wish to become a donor you must also inform your family of your decision as they will be consulted by medical officials before a donation may occur.

Now, the greatest concern for people with regards to organ donation is where you draw the line. Many people fear that if you’re in the emergency room and the doctor know you are a willing donor that they will not try as hard to save your life. First of all, a serious part of this issue is lack of trust in medical personnel. We must trust that a doctor will make moral and ethical choices with every decision. If you are admitted into the hospital, their number one priority is to save your life. You must trust your doctors even in everyday situations: trusting that they’ll give you the right prescription, trusting that they’ll follow the correct procedure in surgery; you must trust the people who take care of you. However, in reality, this concern is a direct result of the lack of donors. If more people were willing to donate, this wouldn’t be such an issue. Doctors wouldn’t be so desperate for organs.

Another concern is your family being charged with the cost. However, there is no cost to the donor’s family for organ donation. Also, donated organs are removed surgically so as to not change the appearance of the body for the funeral service.

Lastly, a great reason many people hesitate signing up to donate their organs is because ultimately it leads to a discussion of death, their death. We cannot talk about organ donation without touching on this ultimate reality. One thing we know is that every single person will die. The question then becomes what will our last act be on Earth? Will it be selfless? Will it give life? Will it give hope so that a scared family will not have to grieve that day? A family perhaps like the Stockwells.

I hope today I’ve convinced those of you who can sign up that the need to donate is real and dire. Shawn is still waiting for a heart. And he can only receive one if people like you decide to give the gift of life, to… “not take your organs to heaven”; and I’m eternally grateful for the gift someone gave me.

Archie

Archie took part in the University of New Mexico's Childrens Hospital, Early Childhood Evaluation program http://cdd.unm.edu/ecspd/ECEP/evalservices.html He was seen by a team of therapists, interns, and doctors who had never treated him before, so it was completely objective...The team used the Bayley Scales of Infant Development http://www.answers.com/topic/bayley-scales-of-infant-development?cat=health to assess Archie's mental and motor development and behavioral skills. Basically, they watched Archie as he played with some very basic toys and games...the general consensus was that Archie's skills are comparable to a 6-9 month old baby. (The Bayley Scales do NOT take into account that he was hospitalized for 5 months).

The team feels that Archie is behind developmentally because the first few months of his life were centered around surviving and just staying healthy...he's crawling, taking more interest in toys and babbling now because he IS healthy and has been hospital-free for almost a year (knock on wood). They also feel that Archie can be pushed and challenged more with his at-home therapy because he is healthier and stronger. Overall, they feel that Archie is a happy boy, social and has a lot of potential! On the feeding side - Archie ate a whole jar of Gerber butternut squash at his feeding clinic this week and he will start going 3 days a week, next week.

We saw dinosaurs, Albuquerque at 10,000 feet (see photo!), the New Mexico State Fair, Indian Pueblo Cultural Center, Jackalope, Tinkertown, the Aquarium, Zoo and Botanical Gardens and ate at the world famous El Pinto Restaurant and sampled (hot!) green chili with Grandma and Grandpa Haley! We wish they could have stayed longer :) Our photo album will be updated with all of our adventures soon!

Chris's sales presentation for the the CW and My50's new fall season went very well and he's very glad its all over!

Next stop: Orlando and Jacksonville Florida!

Back to School!

Josie started pre-school school last week...same school, teachers and friends she had during "sumer-school"- so she's a happy camper!

Archie starting attending the feeding clinic last week too and will be going twice a week for the next two months...its very slow-going, especially getting him over his fear of swallowing solid food, but hopefully the clinic will be helpful...

I'm the new activities coordinator for our 600 home (!) neighborhood and very busy planning the 2nd Annual Chili Cook-off and Halloween Costume Contest in October. After travelling to Vegas, Orlando and North Carolina this month, Chris is now preparing the annual sales presentation/banquet to launch the new Fall shows on The CW and My50 TV.

Grandma and Grandpa Haley are visiting from upstate NY for the next two weeks too! and then we are off to Orlando and Jacksonville at the end of September! YAY!

Heart-Healthy!

Archie saw his Cardiologist yesterday, she did another echo on him, while he watched Baby Einstein-its the only thing that stops him from squirming while on the table! She said his heart still looks the same and she does not see any open-heart surgery for him in the immediate future. As long as he stays healthy and infection-free his homograft should continue to function well! She also took him off another diuretic so we are down to three meds a day-YAY! Enalapril(diuretic) Lasix (diuretic) and Viagara (for pulmonary hypertension). He used to get 9 meds a day so this is a VAST improvement! Archie also saw his gastro-enterologist yesterday and he is happy with Archie's weight and growth pattern. We are STILL waiting to get into the Feeding Clinic, due to therapist scheduling problems and our insurance company change-over it has been delayed...

Archie is still crawling and he can pop right up into a sitting position easy as pie - makes for difficult diaper-changes though! He says Da-Da ALL the time and some other garbled stuff but mostly Da-Da (he reaches for Daddy when he gets home). He gets fake-angry sometimes and we call it doing "The Hulk" because he clenches his fists, grits his teeth, kicks out his feet and grunts loudly! he doesn't turn green though - yet

Josie is still going to pre-school and we visited the Albuquerque Aquarium/Botanical Gardens with her class yesterday. Check the photo album for new pics...

Chris and I are both on MySpace now - if anyone else has a Myspace just let us know so we can add you to our friends. MySpace is crazy-addicting but fun, we have been able to find a lot of old friends from highschool, college and Disney!

Hope everyone is having a cool summer!

Close Encounters!

We are hoping Archie will start attending the feeding clinic this month...one of his therapists was on paternity leave so when he gets back, Archie will hopefully start going...He is getting very tall and he's been saying a few words, mostly "Da Da/Daddy". He is very healthy and happy, unless he's woken up by the neighbor's barking dogs :( His physical therapists are working on getting his muscles strong enough for him to stand, which he can do but with a LOT of assistance - but he's getting there!

We are also going to Roswell, New Mexico for the 60th Anniversary of the "Crashdown" - Should be fun....they are having a night time parade and party and a UFO might be doing a fly-by (thats what we were told)! If we don't get abducted, we'll take lots of pictures and post em here when we get home...

The picture of our favorite martian, is from a trip we took to Roswell a few weeks ago so Chris could meet with the event organizers. Chris' station is going to be "sponsoring" Mitch from The Daily Buzz - he's flying in from Florida to be the Grand Martian/Martial for the parade)

Hope everyone has a Happy and Safe 4th of July!

Cool!

another sign of global warming? nah! he's just a resident of the Albuquerque Zoo! Its not very often that you see a polar bear in the desert Southwest...and guess what else is pretty cool? Archie is starting to crawl!! If he wants a toy he doesn't roll to it, he crawls/scoots/creeps towards it!

In July, he will start going to the feeding clinic three times a week in the hopes of getting him OFF his feeding tube!

Happy Birthday to Josie and Archie's cousin Emily who is turning the great big ol' 2 this weekend! We wish we could be there!

a GRAND visit with Grandma!

Grandma Iller came for a visit this weekend and we had a fun time showing her around Albuquerque! We went to Tinktertown and Old Town and ate lots of tasty Mexican food - even Archie sampled some spicey stuff! We are looking forward to her next visit because we miss her already! Check out all of the new pictures in our May 07 photo album. Have a Happy Memorial Day!

Happy Mother's Day Weekend!

Don't forget to call your Mom!

p.s. Archie has been accepted into a feeding clinic at a local hospital beginning in June. He will be followed by a whole team of therapists and feeding specialists and hopefully they will be able to make big steps in getting Archie to eat and get him OFF his feeding tube!

Archie News

Archie has had two cardiology appointments from two different doctors in the past two weeks (we like second opinions). Neither doctor feels that Archie will need open heart surgery any time soon...they are hoping his homograft will keep functioning well and it still is :) So surgery has not been scheduled and won't be scheduled anytime soon. One of his heart medications has been dropped too, so now we are down to 4 meds, twice a day...His reflux has cleared up - he no longer spits up formula and he is biting everything! His favorite thing to bite is pickles and our shoulders when we are holding him. He doesn't swallow much though but we are happy that he is showing an interest in wanting to try out his new teeth! We are still working on getting him to crawl and talk and clap and wave, not necessarily all at the same time. He is getting very big and very tall, he loves Baby Einstein and the swings at the park and giving big "air" kisses!

There are some new pictures up from our trip to Cliff's, Albuquerque's very own amusement park! http://www.cliffs.net/ Josie liked the kiddie rides but the rollercoaster was her favorite.

We are looking forward to Grandma Iller's visit at the end of May!

Egg-cited part 2

The Easter Bunny came to Albuquerque this year and Josie woke up to find a bunch of eggs hidden around the house (click here to see video). After Josie found all of her eggs and presents, we woke up Archie (he likes to sleep in) and headed to our Sunday Brunch at the Hyatt (click here to see the video). Here is what it looked like in the dining area (click here to see video). Then we headed outside to the main lawn for the Easter Egg hunt.

Egg-cited!

We're getting ready for a Merry Easter in Albuquerque! (it was snowing this morning)

Our neighborhood is having an Easter Egg hunt at our playground tomorrow morning and then after that we are headed to the Hyatt Regency Resort in Rio Rancho for Easter Brunch. Chris has lost 20 pounds during Lent (no meat, no liquids other then water...which means no Dr. Peppers) so he deserves some tasty treats! We decorated Easter eggs today (click here to see video) while Archie hop hop hopped in his jumper (click here to see the video). Archie is still doing fine without oxygen support and prefers wearing rabbit ears on his head than a nasal cannula in his nose. We have all had a pretty crummy cold the past few weeks but thankfully Archie is handling his like a trooper, - he's definetly getting stronger, more active and more vocal...he is rolling all over the floor and loves to hear himself squawk and yell. Another therapist will be coming at the end of the month to assess his verbal skills because he is not saying any words yet. He is still on the feeding tube and refuses to eat or try anything by mouth, except his hands, feet, toys and plastic easter eggs...hopefully a chocolate easter bunny will do the trick. :)

See our April 2007 photo album for more pictures...

Happy Easter to All of our Friends and Family! and especially to Archie's little cousin Samantha - celebrating her very first Easter!

Good Archie News

Archie had a cardiologist appointment today and when he left the doctor's office, he left behind his oxygen tanks!

We still have to check his oxygen saturation levels a few times a day with a pulse oximeter to make sure he is breathing well and we will have oxygen tanks on hand at home. But unless he's huffing and puffing hard, he doesn't need to wear the nasal cannula anymore! Yay!

He had an echocardiogram done and his heart and homograft still look the same - no better, no worse, which means no open heart surgery anytime soon...

Last week he was also taken off of his medication for anemia, only 5 more meds to go! However, he will always be on some type of heart medication...the other medications are diuretics and prevacid for reflux (which he still has).

Archie has been rolling all over the floor and when we place him in a sitting position he stays and doesnt topple over! which is great progress! And his top two front teeth are coming in to make a grand total of 4!

Happy First Day of Spring!

Our Trip Out West

It took us half a day to drive to California...we drove past the Petrified Forest, some tourist-eating dinosaurs, a meteor crater, saw snow in the mountains, and almost ran out of gas in the Mojave Desert. We made it to Anaheim on Thursday night, slept like rocks and went to Disneyland Friday morning.

The park was a lot different than Disney World in Florida - Sleeping Beauty's Castle is much smaller than Cinderella's but just as pretty. Main Street looks like it did when the park first opened...the penny arcade and the Main Street Cinema (showing Steamboat Willie) are still there! (Disney World replaced theirs with clothing stores :( Our first ride was Snow White's Scary Adventure...Archie took it in stride, Josie was terrified!

We rode King Arthur's Carousel next which was more Josie's speed. Next stop was the Princess Fantasty Faire, we got there just in time for one of Josie's favorite princesses Cinderella was doing story time!

Next stop was the Blue Bayou Restaurant, Chris had always wanted to eat there as a kid! It was very dark inside because its right next to the Pirates of the Carribean ride, we could see the boats going by too. Chris had meatless jambalaya because he gave up meat for lent :( I had a Monte Cristo sandwich mmmm! Josie had a deep fried PB&J and Archie had Pediasure :) We went on the Haunted Mansion after lunch, Archie and Mom were mesmerized, Josie was terrified and Dad laughed. Josie went on a Winnie the Pooh ride next, saw Tigger and Pooh in person and their hugs made her feel much better!

Caught the Parade of Dreams next, Josie was happy to see Ariel, not so happy to see Ursula!

We hung out in Toontown for the rest of the day where Josie met the Mouse!

and Josie rode her first rollercoaster with her Dad! He told her to hold her arms up and scream to show everybody she wasn't scared. She rode it again and again and again....

We went to Disney's California Adventure on Saturday, first stop was the Monsters Inc ride...

"Mike and Sully to the Rescue" Josie did not want to get off...we went to Disney's Aladdin's, A Musical Spectacular - a stage production of the movie, where the genie stole the show and was funnier than Robin William's in the original.





We went to A Bugs Land next and Josie rode bumper cars, ladybugs and chinese food takeout boxes while Archie people-watched.

We headed back to Disneyland that night with the rest of California (it was VERY crowded) and hung out in Toontown til we dropped!

On Sunday we headed for the mountains to visit Chris' sister Maddie and Auntie G.G. - after a very windey and windy ride we found Aunt Maddie, ate some great pizza at Round Table where Chris's second cousins Matt and Tori Vine work (Matt even gave us a family discount - thanks Matt!)








and stopped by Auntie G.G.'s new house for a quick pop-in before we took Maddie to work.

It was a short but sweet visit! We headed back down the mountain and stopped by Chris's old neighborhood in Ontario, CA.





We saw his old school and one of the houses he grew up in...after that we went to Downtown Disney and hung out there for our last night. Brush fires/forest fires were burning nearby, we could smell the smoke and we drove thru a lot of it Monday morning, it was a good thing we had Archie's trusty O2 tanks with us!

All in all it was a good little trip and totally worth the long drive.