Family Fun

Since becoming nearly complete shut-ins, family outings are challenging. No, they are nearly impossible. We always have to look for ways to take the family out to experience the world, yet be safe from illnesses around us.

This past weekend presented us with one of those rare opportunities where getting out and keeping safe were both possible. ClovisFest begins their days with a hot air balloon launch early each morning. So Sunday morning, we gathered up the kids at 5:30 and headed up to Clovis to see the launch.

We watched the sunrise over the mountains as we drove up. Paige found that really fascinating. Here we are all bundled up waiting for the balloons to inflate.


It was fun to teach Paige how the balloons worked. She loved to see the fire go into the balloons.


Eli sat and watched quietly, yet completely engaged He was fascinated with the balloons.


We had a great time watching the balloons! Someday, I'd love to go for a ride in one.

Happy Birthday Paige!

4 years ago, we were blessed to be called parents with the arrival of Paige Elizabeth. Only other parents can understand how your life changes in an instant with the birth of a child. She brings all of us so much joy and happiness, and we see God doing amazing things in her life already. Happy Birthday Little Monster. We love you so much!!

July 1, 2006

1 year

2 years

3 years

4 years

Our Little Hero!

Yesterday, I (Tanya) stepped outside for a brief moment to close the gate to the backyard. During that time, Eli began to have a reflux episode and was beginning to struggle to breath. Paige was inside and noticed, so she came out and said to me, "Mommy! Eli needs oxygen!!"

After getting Eli through his episode, I was very intentional in letting Paige know how proud I was of her. She got lots of praises and hugs, just to be sure she knew how much of a hero she was in helping Eli out. During this time, she says to me, "I saw he was choking and came and told you quickly!" She makes me more than proud!

Jason and I are so proud of the little hero that Paige is. She is always watching out for her brother. We are very thankful to how in-tune she is to Eli's care. She is our little nurse and is so responsible and loves to help us take care of Eli's needs. Yesterday's event made us realize even more what a special gift she is in our family and we are very thankful for her! She's really is Eli's Hero!

Living with No Regrets; From the Heart of a Heart Mommy

This past winter has been a challenging one in many ways. As you all know, we have been living as shut-ins since September. We have chosen to do this to keep Eli healthy. I’m so proud to say that since then, Eli has NOT been sick once! When you stop to think about it, it really is a miracle. Most pediatricians will tell you that kids will get an average of 10-12 colds a year. Eli had one in August, and none since! WOW!! We receive some relief in knowing that our hard work is really paying off.

While living as shut-ins, I know that we have offended many, hurt others, and broken some hearts. We have said "No" to visitors more than we could have ever wanted. We've even suffered permanently broken relationships because of family who do not understand our measures. Trust me, there is nothing worse than telling the kids’ grandparents they can’t come see their critically ill grandson. Jason and I haven’t been to a social function since September. No birthday parties, no Christmas parties, no church, no family gatherings….nothing! It has been so incredibly difficult not to be a part of the social world. I have learned to do most of my shopping online. Grocery shopping, Costco runs, and picking up prescriptions have all been added to Jason’s list. The only places the kids and I go are to doctor appointments.

The hardest part of all of this is seeing Paige miss out on so much in her developmental years. She hasn’t seen many of her friends in months... so long, many are forgotten. She's can't even tell us what color hair they have, any more. She doesn’t get to go to the park, the zoo, or AWANA. She doesn’t go to the grocery store. A fun outing for her is CHCC for one of Eli’s doctor appointments. How fun can that possibly be for a 3 year old? We so badly want to enroll her into gymnastics, but can’t. She should be in pre-school, but can't. She should be freely playing with her friends. Instead she can’t, “in case they have germs.” And she knows it. Paige has a great imagination and loves to play with her brother. She watches over him like the wonderful big sister that she is. She is an amazing kid, and we are so very thankful that she has an easy going, curious, fun, loving character. It certainly makes dealing with our situation so much easier.

I know many have wondered why we've taken such extreme measures. "Why can’t you come to church?" "Why can’t Paige play with her friends if they have been healthy?" "Why can’t the grandparents come see their grandkids? It’s only a short while." Trust me, we’ve heard them all. We’ve often asked ourselves the same question. But we always come back to the same realization. What if? What if a visitor has a cold or flu virus that isn’t infecting him/her, but infects Eli? Just because you're not sick, doesn't mean you're not a carrier.What if Tanya gets sick with a simple cold? Who will care for the kids? Jason has to work. Due to babysitting limitations, Paige actually had to stay with a friend once, and only once. She got sick, and was quarantined with grandparents and friends without kids for two weeks! What if Eli were to get sick a few weeks before his next cath lab? Will that make him fail yet again, meaning there is NO chance at surgery? As parents we have to weigh all of these options. Every single time we're asked if someone can come visit, or if Paige can go to a party, or we are offered dinner, we consider all our options. The only answer has always been the same answer. We cannot compromise. We have to live our lives with no regrets for Eli’s care. I don’t want to fail the next cath lab having a “what if” in the back of my mind. I have to give Eli the BEST CHANCE POSSIBLE to be a candidate for his next surgery.

If you are one of those people who may have been offended in the process of us living with no regrets, please look at our situation from our point of view. If you think you understand, multiply that burden by 100. It has not been easy for us. But so far, we have no regrets for what we have done. And we will continue to live this way, until we feel it’s no longer necessary.

Making Daddy Proud

A few weeks ago I (Tanya) was listening to Blue Man Group while tidying up the house. Last week after dinner, Paige asked to dance to the "boom boom" music. I had to think what she might be talking about, and figured she must be referring to Blue Man. I found our DVD of their concert and played it so she could see the characters, but also the fun instruments they play. All four of us were rocking out to a very loud in-home concert of Blue Man Group. Paige started dancing around, eventually leading to head banging. Eli laid on the floor watching intently, and often laughing at his silly sister. Both of the kids enjoy listening and moving to rhythmic music, following Daddy's drumming and rocker footsteps.

March videos

Here are a couple videos from this week, at home. Eli loves to laugh, and Paige loves mommy.

Spring is in the air

It's March, already! The whole family spent the weekend outdoors getting ready for everything to come back from its winter sleep. Pulling weeds, trimming trees, mowing the lawn, fertilizing everything, and even starting the vegetable garden because Lowe's already had stuff in stock. It might be a little early, but we're so anxious for spring, we planted them anyway. Tomatoes and artichokes, so far. There's still room for zucchini and one more vegetable, unless we don't do the giant pumpkins this year... then we'll have lots of space!

We almost forgot to bring out the camera, so there aren't a lot of pictures. But here's our Super #1 Helper, Paige, helping to clean up the weeds. She loves to help!

Home again, with a catch

We made it back home today. Eli has slept terribly at the hospital, never more than 15 minutes at a time. When we started heading home, he was sacked out in the car in very short order. We brought him, fed him, and he slept for 3 hours. There's just nothing like your own bed, huh?

Paige has spent the last few days staying at a few different friends' houses. Today, she picked up a low grade fever. She's feeling fine, and just like we thought, it hasn't slowed her down at all... but it means she can't be near Eli for a while. She'll be staying with Nanna & Nanno until Monday night. Maybe we'll get to be an entire family unit soon!

On a different note, Eli is a notoriously difficult "poke." It's extremely difficult to get IVs in him, partially because he's been stuck so many times in his life, it's hard to find a clean spot. We've actually reached the point where the phlebotomists aren't allows to poke him any more, they always call in a PICU nurse. One area they've never touched is his head, where the veins are HUGE, shallow, and plentiful. As one nurse stated "His head's like a gold mine!" The downside is they have to shave his hair to get to them. Poor little guy! :)

Here he is at home, tonight.

Christmas Photos

This Christmas was obviously a quiet one at home for us. With our need to keep Eli safe, it really limits our options. A couple weeks ago, we were able to see Christmas Tree Lane, since it didn't require us leaving the car. We have also had tremendous support from two of our dearest friends, who have taken our precautionary practices upon themselves, so they are able to be at least one piece of "social" for us. There's simply no way we could communicate how humbling and great this is for us, nor offer enough thanks.

Here are some glimpses into our Christmas this year, Eli's first. He continues to be such a happy, smiley boy, and continues to bring us so much joy. With Paige now three years old, we've begun to forge our own holiday traditions. Paige helped make candies. Below, she dips pretzel sticks in caramel before also dipping them in chocolate then crushed almonds. Yummm!!! Randy and Laurie brought Paige a few games for Christmas. Paige really looks forward to seeing them, and they're so great at having the time and patience to enter her world and play with her. Here, Paige is beating Randy at a game of Ants in the Pants.

Also below, Paige now helps decorate the tree. And, Santa brought her the blue fork and spoon she asked for. Eli is all smiles, as usual, and completely captivated by the blue light on his first Christmas present.

Modeling with Paige

Montana de Oro, just before sundown.

After a 1/2 mile hike down to the oceanic cliffs of Montana de Oro for some family photos, Paige first warmed up the camera on one of the grassy hills. I'm just an amazingly proud daddy, that's all. I love this little girl!

November Photos

Being an unusually warm day, and probably the last of the year, we decided to make the trek to Woodward Park a couple weeks ago for their annual cultural event in the Japanese Gardens. Fall colors were in full splendor and very few people were present. Afterward, we had a picnic lunch and Paige and daddy climbed over the rocks near the stream, and went "sploring" to find new stuff. Paige loves exploring.

Also, this week was Eli's 9 month anniversary. We figured he was due for another photo session. Eli's pictures were taken this afternoon.

Halloween 2009

We had a very quiet Halloween at home this year. Paige got to wear her Cinderella dress, complete with tiara and wand. She got her hair curled and even wore some of Mommy's makeup. To complete the theme, Eli was Gus the mouse. Here are a few pics of them all dressed up.

Jason acquired a green thumb and grew some giant pumpkins in the backyard. In his first year, he harvested a 68 pounder and a 70 pounder! It'll be interesting to see what he will grow next year, with all the things he learned from his rookie year. He also had fun carving the pumpkins. His are his works of art:

Fall Pictures

Eli likes both sweet potatoes and grandma Ruth. Paige is both an artist and a super hero. We just thought we'd share some of our autumn, so far.

Return to Morro Bay and Clean Air

We had the opportunity for another long weekend in Morro Bay last weekend. While, surprisingly, not a very relaxing weekend for us, there were some high points and new discoveries with Eli's health.

We took the kids to the Santa Barbara Zoo and met up with my aunt Dani and cousin Bennett. Bennett is a genius 8-year-old who served as a great tour guide. Paige latched onto Dani, and they walked hand-in-hand all day. This was Eli's first trip to any zoo. It's just been too hot this summer to take him to Fresno's Chaffee Zoo, yet. Paige wanted to make sure we saw the "elphlants" first.

We also got to spend the weekend with our closest friends Randy and Laurie, who were in as desperate need of a getaway as we were. When we told Paige they were coming, she said "Oh! I'm not shy to Randy and Laurie and Randy's a punk kid." We don't know where the latter started, but it's been a fun joke for Paige for quite some time. Randy did a great job teaching Paige how to build sand castles on the beach. We all shared some of the best laughter any of us has had in a VERY LONG time. Tears rolling down your cheeks kind of laughter.

Eli responded very well to the clean air, more than ever before. For three days, he only required oxygen while sleeping. Even that was at a lower level than ever. Our last day out, we even worked up the courage to remove his canula altogether, and he traveled through Morro Bay, up and down Embarcadero Blvd and to the beach with a completely naked face all day. We've now been home two full days, and are still able to go without oxygen while he's awake. We don't know if this is a good sign, or any indication of his health, but it's certainly helping us see him as a real boy, not a medical patient. He's also getting much bigger very quickly. He's well past 13lbs, now.

We talked to Dr. Fields about the clean air and oxygen support. Could clean air alone make such a difference? We know we live in some of the dirtiest air in the nation, but could it make that much of a difference? Could this revelation open any doors to further understanding of his condition? Dr. Fields was also intrigued, and we're going to experiment in the area of allergies. We'd like to see if perhaps all the junk in the air is irritating Eli's lungs more than most, causing them to tense up. Could this also effect his pulmonary hypertension? Most certainly so, yes. We are starting Eli on a daily dose of Claritin, of all things, and we'll see what happens. The only real way to know if it's going to make a difference is to simply try it, and note his progress.

As I type this at home, I'm looking over to his monitor. He's off of air, and all his numbers are exactly where we'd like them to be. We pray we may have just discovered another piece of the puzzle.

Paige's Water Park

We pulled out Paige's pool yesterday and created a water park with her swing set. At first, she was scared to go down the slide, but eventually did. There was no stopping her after that! In fact, first thing this morning she asked to put on her swimsuit to play in her pool. Free admission for any friends that want to join her at her new water park.

Paige & her park

Last summer, we found a swing set on clearance, so we bought it. We've been working real hard on redesigning the backyard, so it wasn't until last week that we got the swing set built. Paige LOVES to swing, or "go to the park," as she calls it. Paige finally has her very own park, at home! She'd love to have friends over to play with her, that's for sure! Here are some pictures of her exploring her new park.

Playtime with Paige

One of the biggest hurdles during Eli's recovery is trying to figure out how to be a parent to two kids who can't ever be in the same place. Eli's in the PICU, and Paige is anywhere that's not in the hospital. It's RSV season, so she's quarantined away from this place. A friend of ours is a charge nurse in the PICU. For the last several weeks, we've been using her information and expertise to prepare us for this ordeal, as well as possible. One of the things she said was "We're the most expensive baby sitters in the world, and we're good at it. Let us take care of your baby, and make sure you take care of yourself and Paige."

This morning, we invited her friends to meet us at Pump It Up. There's one just a mile from CHCC! $7/kid and all adults are free. What a deal! We had a blast... but I may have gotten a little TOO into it. :)

New Camera

Paige got a new digital camera from Grandma and Grandpa Salt. What a long way technology has come, when you're giving 2-year a digital camera! After they spent some time getting her to understand how it worked, she was off to the races! She takes it with her everywhere now. Here are a couple of the shots from the first "roll of film." These are all uncropped, to properly display her entire creative eye.