30 Days of Thanksgiving: Day 23

'Nuff said! :)

30 Days of Thanksgiving: Day 22

This morning we had a check-up with Eli's pacemaker, and we didn't even have to leave the house! In fact, we were still in our pajamas! Technology is awesome. We have a device here at home that has a modem and a pacer reader. It reads the data recorded on the pacer and then transmits it directly to our cardiologist through the phone lines. I'm so thankful this technology exists so we don't have to make frequent regular trips to CHCC and his cardiologist.

30 Days of Thanksgiving: Day 21

Grandma and Papaw came for a visit on Sunday. They played with Eli. He showed them how he can say thank you, spin in circles, and told them some great stories. Paige played paper dolls with Grandma and Play-doh with Papaw. Samuel woke up for a short bit and cooed and smiled for them both. We had a great visit. And ate some yummy Mexican food. I love it when the kids can see their grandparents!

30 Days of Thanksgiving: Day 20

For 6 months this year, Jason was working 6 days a week. Only when Samuel was born, did he finally have a Saturday off since March. He took 6 weeks off but when he returned to work he went back to a 6-day week. The past 2 Saturdays Jason has been home. It's so nice to have him home for 2 days instead of just 1. I'm thankful for the overtime he had, especially since it's so rare with his job. But I'm even more thankful to have him home and rested for 2 days on a weekend.

30 Days of Thanksgiving: Day 19

Weekday mornings, I wake up with Jason, make him a lunch and send him off to work. After he leaves, I usually get back into bed and try to get an hour or so more sleep. Paige is pretty good about letting me sleep more. She knows that she isn't supposed to wake me up until it's 8:00. To her, that means the alarm clock starts with an 8, and often it's more like 8:30. Lately she's been playing with Eli and letting me sleep even longer. I usually wake when Samuel is crying to eat. Friday morning was a little different. I heard a soft whisper, "You're the best!" and then tip toes creeping out of the room. How could I not smile and be warmed by such a sweet awakening!
I'm so thankful of sweet moments from the sweet girl that we have. Thanks Paige for making my Friday start perfectly.

30 Days of Thanksgiving: Day 18

Just over 2 years ago, we learned of Eli's heart defect. Exactly 21 months ago we began his journey. We have had many ups and downs in the past 21 months. Of all the things that Eli has taught me over the span of 2 years, the thing I'm most thankful for is his joy. Eli is a happy boy. Rarely is he fussy or cranky. The pictures you see are genuine Eli. Often smiling. Often laughing. Often babbling away. He is my daily reminder to find joy in the trials. His heart is working hard to survive. His lungs are fragile and weak. But that's all on the inside. You can't see it. On the outside, you see a fun, happy, almost 2 year old boy. Thank you Eli for showing me and reminding me to find joy in the little things. No matter how tough it is, there is joy somewhere. All I have to do is look into your face. You are my joy.

30 Days of Thanksgiving: Day 17

Last night I got to watch Cinderella while sitting in the presence of Cinderella herself. Paige put on her Cinderella dress (which I didn't know still fit her) and came out prancing around. She spins and twirls her way into the kitchen to her daddy and says, "Daddy will you be my prince?" I witnessed Jason's spine fall out of his back! :) Then we sat together and watched her favorite movie. After the movie she asks when we can go to Disneyland to see Cinderella in her pretty blue dress and "I want to show her my pretty blue dress too!" Some day, Paige. Some day.
It's moments like these I'm thankful for Paige's innocence and easy-going personality. She really is a sweet girl. Thank you Paige for being our princess!

30 Days of Thanksgiving: Day 16

Several things happened yesterday that reminded me to be thankful for Children's Hospital. First, a former schoolmate of mine had her 3 year old daughter diagnosed with leukemia. They are in the beginning stages of treatment for her. Secondly, I caught a short segment on a talk show about a teenager who had a rare form of bone cancer. For treatment, she had to travel 6 hours to St. Jude hospital. This made me realize that we only travel 40 minutes to get great care for Eli. I'm so thankful that we have a great hospital with all the resources we need just a few minutes away. Eli spent the first 4 months of his life at Children's. I can't imagine how difficult that would have been if we had to travel to LA or San Francisco for that. There are times when we can't wait to get out of the Central Valley. But, honestly, Children's Hospital is one of the reasons we stay anchored here.

30 Days of Thanksgiving: Day 15

We have many projects going in the house. We are still working on the painting and trimming in Paige's room. We are painting the trim on the outside of the house, which includes the entire underside of the patio. We are also in the beginning stages of a kitchen remodel. Jason is sanding down the cabinets to refinish them. A lot of days, Jason comes home from work and winds down by working on a project around the house. Monday was different. Instead, he came home with Toy Story 3. We had dinner together, and then all 5 of us sat in the living room and watched a movie. It was a spontaneous evening and it was wonderful! Eli sat in my lap cuddling with me for a while. Paige sat in her daddy's lap cuddling with him. Samuel slept in his swing, but he was in the room with us. I'm so thankful for spontaneous moments with my entire family. It was a great evening!

30 Days of Thanksgiving: Day 14

Today we had visitors. The kids' Nanna and Nanno (my mom and her husband, Ceasare) were able to come for a visit. They don't get to visit often, so we treasure the times when they do come. When they first arrived Paige was still napping so they spent some quality time with the boys. Eli told them lots of stories and Samuel slept in Nanna's arms. When Paige woke up they read stories, built bridges with blocks and gave each other lots of hugs. I'm so thankful for the visit! Paige loves her Nanna and Nanno. She misses them lots during the school year. We look forward to the next visit.

30 Days of Thanksgiving: Day 13

Monday, a very important man passed away. A man who we've never met, but has basically saved Eli's life. Dr. Richard J. Bing was a leading cardiac researcher in the 50's and 60's. He explored many things that Eli has benefited from. I'm thankful of leading scientists like Dr. Bing. Because of their experiments and knowledge, Eli is alive. If you'd like to read Dr. Bing's full obituary, click here. He was not just a cardiac researcher, but also an author and composer. What an amazing man! Thank you Dr. Bing!

30 days of Thanksgiving: Day 12

Jason took the day off today, giving him a 4 day weekend. It's so nice to have him home. We all miss him so much when he is working, especially Paige. I'm so thankful that he has some flexibility with his job and he is able to take days off to spend time with his family.

30 Days of Thanksgiving: Day 11

Today is Veteran's Day. Of course today I'm going to be thankful for all the Veteran's who have served or are serving our country. Thank you for your sacrifice for my freedom. We have several Veteran's in our family who have served in the Gulf War, Vietnam, and Afghanistan. Thank you isn't enough.

Today I continue to pray and be thankful for those who are still serving overseas.

30 Days of Thanksgiving: Day 10

Tonight Paige, Daddy and I had a little movie night. We all cuddled on the couch with some popcorn and watched a movie. Paige even got to stay up a little later than normal. I'm so thankful that we can spend time together with just Paige. She deserves a little time with just us.

30 Days of Thanksgiving: Day 9

It's been several months since Eli has had any food orally. Sometime in the spring, he began choking and gagging on his bottled formula. Fearing he'd aspirate, we stopped feeding him orally until after his heart cath in June. Shortly after, we tried again. Only to have him still choke. We had a swallow study done and saw an Ear, Nose, Throat specialist to make sure everything was okay. Since Eli has a mid-line defect, we needed to be sure his swallow, tongue, tonsils and throat were not affected. Everything came back normal, telling us all of Eli's swallow issues can be overcome with some therapy.
First step: getting used to food. The texture. The taste. His occupational therapist recommended we start with some pureed sweet potatoes on the tray. Tonight we experimented with that. We gave him a spoon and a dallop of potatoes. He immediately stuck his finger in them and took it straight to his mouth. "mmmmm!!!" he says! It was fun to watch him smear the potatoes, lick his fingers, put some on the spoon, lick the spoon. He obviously does not have an aversion to food. This is huge! It's a major obstacle we won't have to overcome.
And that's exactly what I'm thankful for. I'm thankful Eli likes food. I'm thankful he doesn't mind having things in his mouth. I'm thankful for the first step of getting him to take in some nutrition orally.

Also: Be sure to look back to Day 3. I added a picture of Samuel!

30 Days of Thanksgiving: Day 6, 7, and 8

This weekend was busy with family visiting from out of town, so that's why I'm a little behind. And that's exactly what I'm thankful for, too. My dad and Deb flew in from Montana Friday morning and spent the weekend with us. They were finally able to meet Samuel. Saturday, all of us went up to the Fall Festival at Shinzen Gardens (the Japanese garden in Woodward Park). I'm thankful for the beautiful fall weather we had. The rain held off just long enough for us to enjoy the park, the beautiful fall colors, and listen to the music. It really was a great chance for our family to get out.

I'm also thankful for the great quality time we got to spend with Dad and Deb. They really had some great chances to bond with all the kids. The greatest thing was how sweet and taken Eli was to his Grandpa. Saturday night, Eli was really cuddling and just chatting up a storm with him. It was really fun to watch Eli interact with someone so intimately. I'm so glad they were able to come for the weekend!

Today I'm thankful for our home. Although many people see it as small, I love it's size. I love the fact that it forces us to live simply. We don't have a ton of room to store things, so we live without. It makes us live inside our means and not get stuck on material stuff. I'm thankful that we have been blessed with a roof over our heads that we love and live comfortably in.

30 Days of Thanksgiving: Day 5

I'm thankful for the little developments and changes I see in the kids everyday. Today Samuel giggled for the first time. And Eli was up on his hands and knees for the first time. I'm so thankful that I have a hubby that works hard which allows me to stay home and be a part of all the firsts. Today reminded me how precious each moment is and made me so thankful that I can be here to be a part of it all.

30 Days of Thanksgiving: Days 3 and 4

So I already missed a day. Oops! But don't think that I wasn't thankful all day for Day #3!! On the third, I am thankful for my youngest Samuel. He is 2 months old already! I'm thankful that he is here and completes our family. He is such an easy baby. He rarely cries, and mostly sleeps. When he's awake he's cooing and smiling. He is such a handsome boy! Samuel is a true blessing and shows God's love and creation to me everyday. My favorite thing about Samuel is that he loves to cuddle and sleep on me. Paige and Eli never really did that. I finally got my cuddly baby! :)

For Day 4, I'm thankful for the little outing I got with Paige. She's been a little needy lately, especially since Daddy went back to work. We decided she needed some alone time with one of us, and she chose to go to the shoe store with me over Home Depot with Dad (that's my girl!). We went to Payless, just us two, and she was allowed to pick out some new shoes all by herself. She chose some glittery pink sneakers with blinking stars! They are flashy and so much fun! She was giggling the whole way home. I'm so thankful that we both got a little break, and finding joy in Paige's joy.

30 Days of Thanksgiving: Day 2

Today I'm thankful for something simple. I'm thankful that all 3 kids are beginning their naps at the same time. I usually get about 1 hour of kid-free time a day. Today looks like I may get 2 hours! Yippee!! Now I'd better get off the computer to make good use of my extra hour.


Lord thank you for giving me a little extra quiet time today. It's one of those days where it's so needed. Thank you for providing all that we need!

30 Days of Thanksgiving: Day 1

We all know that we celebrate Thanksgiving in November. It's always a chance to become aware of your blessings and acknowledge what God has done in our lives. I've decided for each day in November, I'm going to name one thing that I am thankful for.

November 1, 2010: I'm thankful for my first born, Paige. Her birthday falls on the first, so it's only fitting I'm thankful for her on her 1/4 birthday. Paige is an extraordinary girl. She's smart. She's witty. But best of all, she's easy-going. These past 2 years have not been easy for any of us, and she's been a champion of rolling with the punches. I'll never forget her often asked question when Eli was in the hospital. She'd often wake up in the morning and ask, "Where's we go today?" She was so used to going somewhere in the afternoons so we could go visit Eli. She never grew tired of being in different places everyday. And now that we are shut-ins, she never grows tired of being home. She loves both her brothers and is an amazing second mommy. God is doing great things in her heart, and she's told me she wants to be a doctor when she grows up. The way she cares for her brothers, I know she'd be great at it!

Lord, thank you for blessing us with Paige. She is tender, intelligent, and perfect for our family. Your work in her never ceases to amaze me.

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.

Welcome Samuel Joseph!

You're sure to have noticed the complete lack of updates over the last few weeks. Life has been extremely busy, and keeping everyone updated has taken a back seat to other priorities. So... the most important news of the last few weeks:

Samuel Joseph was born on Friday, September 3, 2010 at 8:42am. He weighed in at 8lbs and 10oz and measured 20" long.

Wednesday afternoon, Tanya had her weekly pregnancy checkup and was told by her doctor "You're not making it through the weekend. And this baby's going to come quickly, so don't hesitate to come at the first sign of regular contractions."

Thursday evening, Tanya knew it was time. We've struggled with a middle name for a boy. Here, at the 11th hour, we still hadn't decided on one. Tanya had the kids packed up in the car, headed to a friend's house where they'd be staying the night. Along the way, she asks Paige "What do you think we should name the baby if it's Samuel?"

"Samuel Joe," says Paige.

Tanya told me, and we laughed at Paige's humorous ways. She always makes us laugh. Then, for some reason, the name seemed to work. Tanya had just finished reading a study about Joseph's story in the Bible. It's a great story of of God's faithfulness and of redemption. Samuel Joseph. And
it stuck. If it was to be a boy, his name would be Samuel Joseph. And that's exactly what happened. Paige officially named her youngest brother.

Everything from there went relatively quickly. We checked in to the hospital around 11:00pm. She got her epidural around 3:30am, water broke a little after 7:00, and Samuel arrived at 8:42am after only a few minutes of pushing. Tanya's epidural wore off around 8:00, and it was too late to give her another dose. Poor Tanya... she gave birth to Samuel with no pain management! I'm completely amazed by how strong she is. After waiting the mandatory 12 hours for a hearing test and blood work for Samuel, we were on our way home the same day!

Here are the first few photos of the little guy. In the hospital, and at home.

Paige: 4 years, Eli: 18 months, Samuel: 34 hours

Mic Check

Thump, thump, thump.

{the squealing sound of feedback}

Is this thing on?

... more to come. Thanks for listening.

My Trip to Holland: A perspective from a mother

A friend of mine shared this story with me, and it really gives you a great feeling of what we have gone and continue to go through. I thought I'd share, since so many of our readers can probably relate in some way or another.

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.

By: Emily Perl Kingsley

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!

Wedehase on Safari!

First, a warning. There are a lot of pictures in this post, and the blog doesn't really afford great management or control of photos, so things may be a little jumbled. We'll see what happens. Don't forget to click on each image to see it full screen.

This weekend, the Wedehase family went on safari. Safari West, that is. However, our first stop was in Fairfield, for a Jelly Belly factory tour! We got off to a late start, so we arrived at the hotel around 9:00pm. We unpacked. What a process this is for us now that we're germaphobes! Then we all went straight to bed. We'd be up for a long day on Sunday.

Sunday morning, first stop... the Jelly Belly factory! Paige was so excited to see how jelly beans were made, and to try all the wonderful flavors. It's hard to say exactly what Eli was doing in the picture below. We think maybe he's turning into a sun worshiper.

Once inside, we tried some samples. We pretty much had to force Paige to try a piece of fudge. We had been running so late, we ended up skipping breakfast, so she was in a pretty grumpy mood. Seeing the factory store with all the gifts and, more importantly, candy, she began to cheer up in a hurry. Here, she was amazed by all the gummy worms.

More colors! More candy! I want them all!

Paige and mommy start the tour. To the right, we weren't supposed to have cameras on the tour. With Paige being so cute, hanging onto mommy's neck, I decided to flex the rules a little. They weren't in production, so I don't think I've compromised any secrets in the background.



Safari!
First step: Check in and unpack. The tents were really wood framed buildings with canvas walls. Electricity, running water, and a full bathroom were standard. It was great! Our tent was directly across the path from the giraffe and crowned crane enclosure. We were serenaded by the sound of African wilderness all night. Here, the entire family sits at the front steps of our weekend home.

Paige had a great time exploring ("Daddy, let's go sploring!") and seeing all the animals, real and man-made.

Our precious little children. They love each other so much.

After dinner, we did some more "Sploring." We found baby "falingos," monkeys, and all sorts of other animals. We even saw a baby giraffe that was born that very day! Otto, that was his name, was already taller than daddy. Here, the wild Paige monster is held back by some black bamboo, just like we have at home. While we were out exploring, mommy was getting big hugs from baby brother Eli. He's becoming quite a cuddly little boy.

Paige and daddy roasted marshmallows at the campfire. We've had lots of practice with this at home. We've roasted s'meeps so many times over this last winter, so she's a real pro. What's a s'meep, you ask? It's like s'mores, but it's made with Peeps, those little, yellow, sugar coated marshmallow chickies we all have to endure for Easter. They're horrible treats, as packaged, but it turns out they're AWESOME in a s'meep. The sugar coating caramelizes and offers a wonderful crunch over the top of the gooey marshmallow goodness. The orange ones are the best. But I digress....

Next to our tent was a small pond with Lemur Island in the middle. 4 ring-tailed lemurs slept only feet away from our tent, and we had a great time watching their morning and evening activities. Paige took a walk around the pond and found another really cool giraffe sculpture. And of course, she's become anything but shy in front of the camera.

Safari, Day 2
Breakfast time in the dining room, then off to our departure point. We rode in large, off road safari trucks. Here, Paige poses on the truck. No, she wasn't upset. The sun was in her eyes, and she was doing the best she could to keep those eyes open.

To the left: Dozer was a friendly giraffe! He wanted to have an up-close look at Eli. As we traveled through our safari, we came across many animals. We saw rhinoceros, wildebeest, cape buffalo, oryx, addax, ostrich, elan, red river hogs, warthogs, and so many more. To the right: Eli and I on safari, with impalas in the background. We learned they can leap 10 feet vertically and 34 feet horizontally in a single bound!

For days, Paige wouldn't stop talking about the zebras. They had a dazzle of 16 zebras, and we were lucky enough to have come upon them all in the same place. And, while zebras are notoriously skittish and tend to flee at a moment's notice, these 16 zebras all maintained their position as we approached. Some were only an arm's length from the truck.

After our tour, we had lunch, and headed out. Before we left, Paige wanted to climb a huge, lumpy tree. Once up there, she made silly faces for the camera.



We took Highway 101 home, so we could swing by the Golden Gate bridge. There's a great photo spot just on the north end of the bridge. Unfortunately, we passed by it just as we recognized it (it's unmarked). So we made an adventure of the trip across the bridge itself. Then we made our way through San Francisco, though we never left the car. We even took the kids up the HUGE hills and down Lombard Street, since we were so close. Unfortunately, we don't have any pictures of any of this.

Great getaway? YOU BET! Priceless.

The Many Faces of Eli

Since it had been so long since we'd taken pictures with Eli, we decided to have a mini photo shoot today. He's always laughing and always smiling, it's just so easy to get a good picture. Here, we'd like to share a few of the faces of Eli, and ask that you continue to pray for positive results from his next cath lab, June 7th.

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.