Saturday, December 11, 2010



Look who's eating! Elijah has made amazing progress taking food by mouth, even though it's all baby foods and sauces. He especially likes barbecue sauce. So imagine my surprise when I walked into his afternoon class at Freedom Elementary and saw the scene below. He was enjoying snacks and juice with his friends, which usually means he licks the food and sticks his tongue in the juice. But this time--and almost too fast for me to get my video camera out--he popped a Cherrio in his mouth, chewed it up and swallowed it! It's a sign of great things to come. I had no idea it was about to happen, and I'm still thrilled just thinking about it.


Our friend Randi, a former Little Light House volunteer, came by to say hello and play with Elijah. She hadn't seen her favorite boy since before his leg amputation, and she was amazed to see him walking on new prosthetics. Let's face it, we're all amazed.


It's true that Elijah is unique, special, extraordinary, et cetera, but he's also just like you when it's time to play with cars on the back porch on a sunny day. Watch his imagination run wild as his daddy unsuspectingly videos him and posts it online for all to enjoy.


Tuesday, December 7, 2010

"How Is Eli?"

Late Night Dad:

It's one of those times during the year when I seem to run into lots of old friends and distant family, be it during lunches or over the phone or at the holiday parties. And even though the people in my life come from any of hundreds of past lives -- schools, jobs, events -- the first question they ask is very, very consistent: "So, how is your little boy doing?"

There's just no getting around the fact that Elijah Ramirez is a force of nature in the lives of each person he's encountered, but I admit I'm surprised at how he dominates the width and depth of my life, as well as those of Melissa and Sophia. I believe it's a testimony to how successfully the members of the Ramirez clan have worked to fill our address books with good-hearted people who love God and believe in the power of prayer. (Even the atheists we know seem to understand there's something mighty at work in Elijah's life; you know who you are, and hopefully you aren't shocked to hear my theory. Grin.)

There are two answers to the question, one general and one that's a snapshot of how he's feeling right this week. First the snapshot: Tonight, he's recovering from an MRSA infection in his ear, which is either the root cause of nine weeks (!) of antibiotics, or a symptom of the cure being as brutal as the disease. In any case, I know how scary that sounds, but we don't believe it's gotten down past the eardrum, and now all we have to do is keep him happy during all the allergies and runny nose sufferings. Elijah really does seem to be feeling great these days, and if you've seen him, you know his vocabulary is IMMENSE. It’s late night right now (or, if you prefer, early morning), and he thought he wanted to play, but I coaxed him back to sleep after half-an-hour.

Now for the general: Elijah is healthy in ways I never could have imagined, or at least, I thought it would be years before he'd see this kind of success. He sees therapists at Sophia's public school two days a week, and they believe Eli's so cognitively on-track that he could benefit from enrolling in afternoon pre-K full time. What an exciting development! What an answer to prayer! As for his prosthetic legs (the no. 1 thing you guys ask about), we have met with the prostheticist in OKC who completed the fitting for our new pair of truly hi-tech shoes, and those could arrive anytime. Don't worry, when Elijah masters the new shoes, I'll have plenty of video for you. In the meantime, he's still doing a great job learning to balance in the current shoes, and he's taking bigger and bigger steps every week. Most importantly, he ENJOYS wearing his shoes and look forward to working and playing in them, at home, at therapy, and during school at the Little Light House.

Elijah's birthday is December 23, and I'm stunned to think it's been four years since that uncertain night he was born. I still carry some measure of guilt at not having the joyous memory of that night the way every parent should, but I'm consoled by the fact that each Christmas since that first one has been better than the one before, and I simply can't wait to see how awesome Elijah will be this year. There are so many levels in which he will succeed: As a spectacle of a little kid entertaining the masses; as a living testimony to the success of prayer; as a demonstration of the efforts his teachers and family have poured into his protection and development; as a reminder of the true meaning of the season; and as if that weren't enough, as an instant dose of goodwill infused into the cerebral cortex of every single person he meets, especially the strangers at the stores during our holiday shopping (they can’t stop smiling). People fall instantly in love with him; perhaps you’ve seen it for yourself. And if you'd told me the night he was born how happy and healthy he’d one day be, I couldn't have believed it, just because I felt so little hope during those days. Guess you told me, God.

A NOTE ON SOPHIA: I'm sure many of you are wondering how Sophia holds up against all the attention her little brother receives, and I can honestly say she is a stronger person for it. Perhaps in an alternate universe there's a version of Sophia who resents being ignored when her brother is around, but in this plane of existence, she’s Elijah’s favorite person, and she’s the one who plays with him the most. It would be impossible for Elijah to succeed as he has without Sophia's outpouring of faith and love, her comprehension of the situation, and her ability to weather the storms that rage through Eli's life from time to time. Most of all, Sophia is so good at bringing joy into her parents lives at all times, she makes it look effortless.

Having said that, we still want the focus of this blog to be on Elijah and not necessarily provide "equal time" for Sophia. She's developing in all the ways your kids are, and one day soon she'll be old enough to decide whether she wants her life broadcast week-by-week the way her brother's has been. Just trust that we're helping her with homework, keeping her friends lined up to play with her, and finding extracurricular activities to keep her interested and interesting. And you can bet she's going to have just as much fun as Elijah this Christmas, but not as much fun as I'll have watching them enjoy the festivities. Maybe we’ll see you around.

Keep praying for Eli!

Saturday, November 20, 2010

Sophia Vids!

Our little girl is doing a lot of performing these days. Here are two videos, the first from her recent Veterans Day program at her elementary school, and the second just last night with her Jenks Dance Academy class. Sophia is in the Superstars class, which means she sang the music she was dancing to! (To which she was dancing...)

Some of you already know the story of how Sophia saw "Wicked" last week. The week before, she went to see her voice teacher, Miss Missy, to show off her performance of "Popular" from the musical "Wicked." Missy asked if Sophia was going to the Tulsa PAC to see the show, and I regretted to inform that the tickets were just too expensive and none left close to the stage. Missy told me how another student of hers won a lottery before the performance, and that they might be holding one again.

I called the box office the night of the first performance, and they told me to be at the coat check window at 5:00. I arrived, put my name in a hat, and waited until 5:30 for the drawing. They called my name, and I got two tickets for that night's performance! Sophia was one block away at Tulsa First Baptist for GA's (Girls in Action to you non-Baptists), but I had to drive to Sapulpa and get her a nice dress, then come back and tell her the surprise. She couldn't believe it when her mom broke the news (over the phone). The show started at 7:30, and we both loved it.

Melissa had already seen the show with some of my family members, so it was a date night with Dad and daughter. I had deliberately not listened to the musical because I wanted to be surprised by any plot points that were different from the novel, and the only song Sophia knew was "Popular." When Galinda started singing that song, Sophia grabbed my arm and squeeled. That pretty much sums up the evening. :)

Good things are happening!

Halloween Pics (nd medical updates)

Pray for Elijah on Monday, Nov. 22 as we head back to Oklahoma City to get fitted with even more advanced prosthetic limbs. We are working with Jonathan Day, the only prostheticist in the state who has any experience with bi-lateral amputees, and he is the very nicest guy.

We're getting stronger glasses for a newfound astigmatism, but we kind of suspected that would happen eventually. In the meantime, we were please to see how well his eyes are tracking, and anyone who spends time with him knows he's seeing so much these days. The dentist also gave both kids thumbs-up on their oral health, and I'm pretty sure all four of us are done (for the moment) with sinus and ear infections. But do please keep praying for the Ramirezes.

Now for some HALLOWEEN PICS!

Look for:
Sophia as the Red Queen
Elijah as a Puppy Dog
The Grandkids with Great-Grammie
Eli meets Thomas the Tank Engine!

Videos! Videos! Videos!


1. Elijah Makes Strides

Here's video of Eli arriving at feeding therapy. Miss Tara is helping him "walk-walk" from the car to the front door, and he wants so badly to succeed. Tara has moved on to another home due to scheduling changes, but she was with us for over a year, and we appreciate everything she did for little Eli. Best of luck, Tara, and God bless you.

2. Eat, Elijah, Eat! (3 videos)

We're having great success with Kathy at Therapy Works, as we slowly learn to eat by mouth. Elijah is practicing how to ask for different flavors, how to put the food in his mouth with both his fingers and a spoon, and how to close his lips around food so he can swallow it. For the first three years, any kind of intrusion into Eli's mouth past the teeth made him gag, so even the small progress we've made is amazing.

And also... DRUMROLL PLEASE! I actually witnessed him put a Cheerio in his mouth, chew it and swallow it last week, for the first time! He'd eaten some peach puffs in the past, but they had been crushed, mixed with water, and we're dubious as to whether they were swallowed. He is growing up so fast!

3. Sophia and Elijah at the Fair

Everyone in the Ramirez household loves the Tulsa State Fair. This year, Elijah came with us and had a really great time, although he grew sleepy before the rest of us. Fortunately, Dad was around to take care of the boy, while our friend Todd MacDonald ( rode all the fair rides with Sophia, and I'm talking about the crazy-fast ones. I was more than content to let Todd enjoy his first fair in a long time.

Todd came to stay with us for a week while he toured some Oklahoma churches and promoted his new album, "Pilgrims Here." He spent most of his downtime with me and the kids, and the week after he left, I picked Eli up from school one day and he asked, "Where's Todd?" Anyway, at the fair, Todd saw a teenage boy walk by with a cowboy hat so ridiculously big, Todd had to ask, "Do you think he won that at one of these booths?" I had to point out to him that he was part of a group of kids, and one of the others had a cowboy hat on as well, still big but not monstrously so. I'm glad we Okies make an impression.

Monday, November 8, 2010

Coming Along

Halloween came and went, but Eli isn't walking. We did have a really good time though. Since our last post, we have found a new prostheticist who will help Eli learn to walk. We are expecting a new set of legs pretty soon.

Eli, for the first time in his life, pulled himself up on his legs. We are thrilled. I expect he will be walking on his own legs before he learns to use the prosthetic ones, which is fine.

Eli has had a cold since before the cold temps even set in. He has an ear infection now. Winters are hard on Elijah.

Thanks for your prayers!


Sunday, October 17, 2010

How's the walking?

The question I hear most often, "how is the walking?" I have to tell you that the walking is SLOW. Those of you who read every post know that my optimism had Eli walking by Halloween. I'm pretty sure the likelihood of that is nada.

Here are our problems:
  • The folks here think the prosthetics are too big. So, our current "help Eli walk" PT isn't even putting the legs on him. Not good.
  • The prosthetics are held on Eli by that strap around the waist. It does a very poor job of keeping them where they are supposed to stay. 
We are meeting a local prostheticist this week. I hope we can figure out some solutions to help Eli master this new skill quickly.

I'll add this: He is healthy and happy and that makes my heart leap. Last night at dinner, David was telling Eli, "I'm going to kiss your head." Then, he would come at Eli making smooching noises. Eli said very definitely "No you are not!" With a giant smile and an arm up in defense from the smooching. We both sat with pride bubbling up. Whenever Eli declares his desires, we can hardly not adhere. I remember a time when I was unsure if he'd be able to ask for things specifically. Praise God he can!

He will walk!

Love you all,

Tuesday, October 5, 2010

Eli Meets the Mouse

Eli might be ready for WDW!!! The Mouse came to Eli's school for a visit. Look at that giant "I'm not scared of you one bit" smile!


Saturday, October 2, 2010

Midnight in Elijahville

I don't know what you worry about when you obsess over your kid's future, but I worry about Elijah's eyesight. We've had a lot of conflicting opinions over the years as to how poor his vision is, but for the most part, he seems to see what he wants to see. He recognizes every person, every color, every TV show, every toy. Still, the worry nags at me.

Tonight, Eli called out to me in the dark, just a few minutes ago, in fact. Since he was a little wired, we decided to take a nighttime stroll in the backyard. I thought we might see the moon, but she won't appear for another few hours. And here's the first thing Elijah says to me:

"Ooooh, stars! Hello, stars! We love you, stars! Clifford loves stars! Ruff ruff!"

That was with his glasses off. I took my own glasses off and couldn't see the stars. So his vision was better than mine tonight. And for a final poignant note to the story, I'll add this. Last night about 2:30 a.m., after I got Eli back to sleep, I took the dog out for a walk and looked at the stars myself. I saw a shooting star, and instead of wishing on stars, I always say a prayer, because why waste a wish on a deaf universe when its Creator is listening? I asked God to show me a sign that Elijah is doing well and everything's going to be alright. And one night later, same back porch, same blanket of stars, voila.

Good night.

Saturday, September 25, 2010

DAY SIX: Victory at Mini-Laps

Today, hundreds of people arrived at the Little Light House in Tulsa, OK, to see 64 students walk around a small race track. Each student is under the age of 6 and is dealing with an extraordinary situation like our little Elijah. The crowd cheered for the kids as they made their way around the track, the cheered for the staff who helped them accomplish so much, and they cheered themselves for raising the largest fundraising amount the school will receive all year.

Big sister Sophia was on-hand to pull Elijah around the track in his big wagon, and you can see he thrived on the attention of the crowd. Rumors were flying that Elijah would walk across the finish line, but no one knew what to expect from our big boy until it happened. Just like the rest of the week, he exceeded those expectations. Take a look!

THANK YOU to everyone who shared their prayers and tears with us this week. We'll see you again soon!

Love, Dad

Friday, September 24, 2010

"Where's Granna?"

It's 10 p.m. central, and Elijah spent the last half-hour speaking quietly and sweetly to me as I held him in my arms, wrapped in a blanket in the dark. At one point, he asked, "Where's Granna?" I reminded him that his grandmother had to go home, but we'd see her again soon. Guess she made an impression.

My mom, Anna Ramirez, made the 10-hour drive from Atlanta, GA, to be with Elijah during his historic week in Shreveport. She made everything easier, and she also kept things light and fun. We couldn't have succeeded like we did without her there. Not only did she effortlessly resume her role as one of the only people on the planet who knows how to tube-feed Elijah and mix his formula correctly, she also mastered the updated Eli-Speak in just a few short minutes. With the TV blaring Playhouse Disney and the motorized Thomas engines criss-crossing the hotel room floor, she kept her dignity and her sanity for five long days. Most importantly to everyone reading this, she was a fantastic videographer, and she made it simple for Eli's Dad to concentrate on helping the boy learn his new walking skills.

This morning, she started her 10-hour trek back east before Elijah went to Shriners for the last time. When she sees the video in the previous post, she'll be seeing this footage for the first time, same as all of you.

Mom, you were magnificent. Thanks so much for the hard work and the hard play. We love you thi-i-i-i-i-i-i-is much.


DAY FIVE: Home Sweet Home

HOME! Thank you Lord Jesus. We arrived in Sapulpa just in time to greet Grandma and Grandpa Groves at the door. They're staying with us so they can attend Mini-Laps in the morning. Then we ate dinner, came home and WALKED for Momma, Sophia and a big crowd including Grammie and Grandpa Ken.

1. OPENING NIGHT (MORNING): Elijah arrived at Shriners and immediately got to work. Watch him take steps as Leslie does little more than steer the walker from behind. You'll also see him chattering about what he's looking forward to this morning. He was just in such a good mood, until we put him in the walker. We were all as tired as he was. BUT HE DID IT. (He also says hello to all our family members, with a little help from his Dad.)

2. TRANSITIONS: We meet a new friend in the therapy room, we say goodbye to our awesome therapy team, and we say HELLO to Sophia and our very own living room.

3. THE MAIN EVENT: Elijah takes his first steps for Momma and Sophia. Then, we invite some friends and family to the back porch and do it all over again. It was a special gift to Melissa that she could watch Elijah's progress throughout the week with the uploaded videos, but there's nothing like the real thing. Elijah is THRILLED to be home with his Mom!

See you tomorrow at Mini-Laps! Dad's going to pass out now.

Thursday, September 23, 2010

DAY FOUR (p.m.): We Are The Champions

A special THANK YOU to everyone who followed Elijah this week on Blogspot and Facebook. I know many of you wonder why we spend so much time posting our child's face all over the Internet, and these are the three reasons I always give. First, we want you to PRAY FOR ELI. All we've ever wanted from the legion of Elijah Fans is prayer that he will be happy, pain-free and well cared-for by our medical teams. Second, we want to connect with other families who are dealing with the same ordeals we are. We have learned a lot, but we also have a lot to learn. Third, we want to tell the world about the kindness and generosity of Eli's school, The Little Light House in Tulsa, and Eli's surgical team, The Shriner's Hospital in Shreveport, LA. Please consider a financial gift to either of these fine organizations.

Tomorrow is our final day on the road. Be sure to tune in Saturday for footage from Friday, as well as Elijah's amazing appearance at Mini-Laps!

1. WE ARE THE CHAMPIONS (parts 1 & 2): Before the afternoon session, Granna treated both Ramirez boys to new Red Sox ballcaps, and Eli wanted to keep his on all day. As we entered the building, she was singing "We Are The Champions" by Queen, partly because the word "CHAMPIONS" was emblazoned across her Red Sox t-shirt. Watch our final "walk-walk" of the day and see if you don't agree we've found our champion for all time.

2. STRENGTH TRAINING: Time to teach Elijah how to keep his upper torso muscles strong when he's pushing his walker forward. Good thing we have a few of these exercise balls at home.

3. ELIJAH-MOTIVE: Let's finish the day with Elijah riding a robot pony. I kid you not, this thing is called the iGallop. And you thought your iPad had features. Last but not least is a bit of screaming, as we complete the fitting for Eli in his walker. The amazing therapy team at Shriners set aside an entire hour to build FROM SCRATCH the pelvis-and-trunk stabilizer you see here. We love the Shriners!

Tired? Yes. Ready to go home? Yes. WORTH IT? YES.

Seriously, people, tune in Saturday night for Mini-Laps footage. WORTH IT? YES!


DAY FOUR: Going The Distance

It all comes down to this. You're about to see Elijah move his own feet as he walks across the Shriners play area from start to finish.

1. AMAZING STRETCHES: Eli does some fabulous leg lifts, then says hi to Rose the Dog again.

2. GOING THE DISTANCE (Parts 1 and 2): Time to bring the thunder! Cheer for Eli as you watch these videos.

In case you're wondering, Eli and Dad and Granna are exhausted. But we're not giving up! Not when Elijah is "getting it" so well. Can you believe how much he's participating? We'll return to therapy this afternoon for more walking a few more brace adjustments.


Wednesday, September 22, 2010

DAY THREE: Eli's Power Workout

Almost an hour of footage tonight! My mother, Anna Ramirez, known to Eli as "Granna," did the filming today, and she decided EVERY moment was worth preserving for posterity. She was right, of course.

1. PLAY TIME: Elijah gets the day started with a puzzle. Super cute.

2. STRETCHES: We have a lot of work to get the tendons on the outside of Elijah's legs limbered up. Right now, whenever he tries to bring his legs together, these tight tendons naturally pull outward and resist him. But we'll get there. Meanwhile, look at what a great attitude he has.

3. DOGS AND STRETCHES: Before we finished our morning stretches, we got a visit from Rose, a rescued puppy who came to the Shriners Hospital to spread some cheer. She had no idea what a great dog owner Elijah already is, and she was in for a treat. Rose would come back later for another visit...

4. ELI'S WALKER: It's all smiles as Elijah works to master his newest walking tool. We are bursting with pride at this point in the day.

5. THE RETURN OF ROSE: Finally, it's time for Elijah to walk the dog. What an awesome big finish to the morning.

6. AFTERNOON WORKOUT: Elijah picks up the pace! Would YOU be in such a good mood after a long day of work? Would I?

7. HEAVY LIFTING: Watch Elijah finish the day with leg lifts. What a show-off! Bonus: Enjoy a a discussion about adjustments to the braces which will help Eli perform even better tomorrow.

EVEN MORE video tomorrow! Pray for Elijah!


P.S. It's not too late to donate to Elijah's Mini-Laps fundraiser for the Little Light House! Click here for more details:

Tuesday, September 21, 2010

DAY TWO: First Steps

The moment you've all been waiting for: Elijah takes his first steps.

Pray for Elijah tonight. He's working harder than Congress this week.


Monday, September 20, 2010

DAY ONE: Meet the Feet

Elijah arrived at the Shriners Hospital and immediately asked to play on the floor. We found a big plastic train, and we made a Lego tunnel for it to go under. Look at those new legs! He's really learned how to move around on them.

Drumroll please... THE NEW LEG BRACES! They look great, people. We'll start learning how to walk on them tomorrow. TOMORROW. Elijah was screaming because he didn't want to go back to the room, not because he's being hurt. It wasn't long after I turned off the video recorder that he started laughing and joking around.

More video on day two!

-- Dad

Sunday, September 19, 2010


= Upcoming events (Rehab and Videos)
= Elijah Stories
= Pictures Galore!

SHREVEPORT AND MINI-LAPS (Videos all week long!)

Next week, Elijah will be in Shreveport for five days. He'll have his splints removed from his legs, and we'll proceed to teach him how to WALK in his first ever set of prosthetic feet. The rehabilitation will be a lot of work, more work than a 3-yr-old should ever be expected to perform, but the rewards are immeasurable. Eli's grandmother Granna will be with us to provide shift relief for the dad and moral support for the boy. Pray for us all week long.

And come back to the site EVERY DAY for new video from throughout the week. We'll conclude the week with video from the Mini-Laps event on Saturday morning. Don't forget, it's not too late to donate to Mini-Laps on Eli's behalf:

STORIES (or, Can your 3-yr-old do this?):

I ran across Sabrina, the preschool director at FBC Tulsa. Our boy promoted to a new Sunday School class a few weeks ago, and he's now hanging out with kids his very own age. Sabrina recalled peeking her head in to see how things were going, and she told me that Elijah was by far the "most vocal, most articulate" kid in the class. That put a real lump in my throat. "Every kid has his strengths," she said.

And here's a taste of his brilliance just from this evening:

1. COSMOLOGICAL EVENTS: Elijah walked from the mailbox to the house with me. He said, "Look, Daddy, the moon!" I asked him to point at it and he did. "The moon is following me," he said, and I'm still amazed. "Come with me, Moon!" he shouted. I told him, "The moon goes around the earth, Eli. We live on the Earth." When he got inside, he told his momma, "The moon goes around!" and he made a circle with his hands.

2. BEDTIME LIST: When he gets in bed, he runs down his list of needs, and he's always quite comprehensive. "I need my pacie." "I need Clifford." "I need my movie." "I need my blanket." "I'm wet, daddy." "I need Thomas." (He now sleeps with a model train. You read that right, people.) And last but not least, "Thank you, daddy! Love you!"

3. BAIT THE HOOK: I went in to turn off his movie and help him fall asleep. I put my hand on his face and said, "Night night." He whispered, "Night night." I walked away, and he said, "Wait!" I came back and asked, "What is it?" He said "Night night," and I couldn't help but rub his little head again. I walked away again, and he said, "WAIT!" I thought I'd missed something, so I returned. He cooed at me once more, and I held his hand for a minute. When I tried to leave, he said "WAIT!" This time when I came back, it was obvious he was giggling at me. For ten minutes I pretended to leave as he barked his "WAIT!" order at me. The comic timing on this guy.


Elijah and his cadre of huggable dogs (Charlie and Clifford):

Here's Elijah making his "Oh Wow" face. I love when he positions his hands like this. It always reminds me of two things: Charlie Brown leaning on the wall ( and the cherubs at the bottom of Raphael's Sistine Madonna painting ( He really is just too cute.

Elijah is impressing us all during feeding therapy at Therapy Works in Tulsa. Our therapist, Kathy, is a genius. She has all kinds of fun tricks to get Elijah to eat and drink (remember that his swallow study says he can take anything by mouth he wants), and now there's no stopping him! He keeps his water cup with him all day long at TLLH. It's a game-changer.

Elijah and big sister Sophia doing the "Chicken Dance" at Incredible Pizza Company. These two kids really do get along very well. Sophia is so kind and giving, and Elijah wants to do everything his big sister does. He laughed and clapped as she rode the go-carts, and she made sure she saved money to buy him a balloon. And of course, everyone smiled uncontrollably as Elijah swayed, clapped and stomped during the dancing portion of the night.

Saturday, September 11, 2010

My New Legs

Elijah has become comfortable showing his legs off. When I walked in from work and his splints were off he emphatically said "See my new legs!" I, of course, gushed with my approval and love for his new legs. He gleamed with pride. I can only imagine how he is making sense of all legs were fine, but now everyone loves them...

Just 10 days and ELi will begin a very important part of this remarkable journey. He will learn to walk. The thought of seeing him walk brightens my spirit to blinding. I know you are all cheering for him just as we are.

If you are able, please consider giving to Elijah's Mini Lap to support his amazing school. Be sure to actually list Elijah's name in the "honor or memorial" section so your donation gets credited to his lap.

Eli will walk!

With love,

Thursday, September 2, 2010

Eli playing

Eli's enjoying his evening playing with Thomas the Train and gang.

Sunday, August 29, 2010

The splint game

Eli is doing well. He is getting better and better every day. Our biggest challenge right now is keeping the splints on Eli's legs. His legs seem to swell up on occasion and then cause extreme discomfort, which requires us to remove the too-tight splints. Other times, his legs un-swell and his splints fall right off. We've been told to simply mange the splints...on, off, on, off (bath!!), on, off, on, etc. For the most part, Eli prefers them on. Either way, he still cannot get comfortable to sleep. He's used to tummy sleeping with his booty in the air. Now he cannot stick his booty in the air. And, when he rolls over he has blanket issues. Plus, most of the time he cannot roll himself over and he'll yell, "roll me over." To sum it up, David and Eli are sleep deprived.

We are counting down to the next Shreveport trip on Sept 20. We expect Eli to come home with prosthetic legs that he is learning to use. This will be my next big life moment...seeing my son walk. Can hardly wait.

Love you all,

Wednesday, August 25, 2010

"Don't Hurt Me, Daddy"

Dad here:

Lots of good news this evening, but I'm also feeling a tad introspective after the events of the last two weeks, so I'll get that part out of the way.

You would think I'd be better prepared for those long stretches where Elijah is dealing with severe discomfort, but the mind sees what it wants to see, and when Eli's in a good mood I like to tell myself we're finally past all the trial and hardship, at least for a little while. But ever since the feet amputation this year, I've spent a lot of time dwelling on all the hard work Elijah has ahead of him. It's true that all these surgeries have been gruelling on him, but as an infant he at least had the benefit of knowing he could just lay back and relax while Mommy and Daddy managed his pain and tried their best to make him comfortable. (Forget for a moment about how unfair it is to be bedridden.) Now, however, we are interweaving the surgeries and myriad evaluations with a concerted program to get Elijah back on his legs and moving. If he doesn't work as hard as possible, he won't build up the strength he needs in his muscles and bones. So those days of weathering the storm are behind him.

I can't tell you how many rewards there are to arriving at age 3 with him. He has more personality and animation than ever before, his vocabulary and context are deeper, and he knows not only how to ask for what he wants but also how to get them for himself. But I confess, I miss the times when we had to perform painful tasks (i.e. changing his diaper when his legs are still in great pain) without hearing him plead, "Don't hurt me, daddy, don't hurt me, don't hurt me." I honestly didn't see that coming. Those words haunt me at the oddest moments, like when I was pumping gas today. "Don't hurt me," I kept thinking to myself, as the number on the pump ratcheted upward. (Insert long pause while I struggle to compose myself...)

Today was a really good day for Super Eli. First we saw Dr. Scott Cyrus, who is a superhero himself. Cyrus spoke with Dr. Gates at the Shreveport Shriners and saved us the trouble of another emergency trip to Louisiana this week. Cyrus put Eli's legs back into the fiberglass splints, and he was so gentle that Eli was actually laughing and talking while the doctor finished the second leg. We've been very worried about these splints ever since they slipped off the day I returned from Shreveport, but both Cyrus and Gates have given us the confidence and the instruction we needed to keep Eli's legs safe until our return trip next month. The new splint setup will also be much more comfortable around the clock; we previously had to deal with the fiberglass cutting into Eli's flesh, but Cyrus smoothed out the rough edges.

As soon as we were finished with Cyrus, we headed for the Little Light House and our first day of school in the Pink class. Our new teacher Mrs. Brooke and our returning friend Ms. Lindsay were waiting to greet us in the gym, and Elijah jumped right into the fray with his new classmates. We miss the Orange class already, but it's so good to be surrounded by other kids who are a bit more advanced in their communication skills. Also: We completed a swallow study recently that confirmed Elijah is risk-free when he eats and drinks by mouth, so we'll step up our eating therapy every week at TLLH as well. At the end of the day today, I asked Elijah if he had a good time, and he said, "Yeah! I like my new class, Daddy!"

Finally, some business: Please consider making a donation to The Little Light House during the Mini-Laps fundraising season. Elijah will make an appearance again this year, working his way around a track while throngs of admires cheer him on. Click here for details on how to donate:

Thanks to our LIFE Group at FBC Tulsa for being such mighty prayer warriors during all our struggles. And thank you, big sister Sophia, for loving Eli so much and playing with him every chance you get. I can honestly say that, no matter how tough Elijah's tribulations seem, there is always enough love and kindness in our lives to set the ship to rights. Keep it up!


Wednesday, August 18, 2010

Eli's new legs

I know, I know, the wait has been too long. Here's a photo of one of the new legs.

The only reason I was able to snap this photo is because the splint fell right off.

At the Shriner's Hospital, Elijah's splints were removed and x-rays taken. The x-ray showed that the bone needed more time to fully set so after molds for prosthetics were made, new splints were set. Less than 24 hours later, one of the splints slipped right off. Eight more hours and the other splint slipped right off. Eli's reaction, "put it back on." So at the doc's recommendation, we have attempted to reattach the splints to protect his bone.

On September 20, Eli will receive his new prosthetics. He will spend a week at the Shriner's Hospital learning how to use them and return home with his finished legs.

Until then, he is immobilized for the most part, which breaks my heart. The pain is lessening, but I see it in his eyes at times, it still hurts. He improves every day.

Eli will return to school on Wednesday. Pray for his smooth transition into his new classroom with new friends and a new teacher.

Love and gratitude,

Sunday, August 15, 2010

Legs revealed

Eli will have his new legs revealed tomorrow. David and Eli are in Shreveport for Eli's appointment tomorrow. Eli will have x-rays and molds made for his prosthetics.We're all very excited for Eli to become comfortable with his new legs.

Grandpa Ken asked him yesterday if he was going to "walk walk" when he got his splints off. Eli emphatically answered, "NO" and shook his head to emphasize his decision. He still fears it will hurt. I cannot blame him. He will walk though and he'll wonder why he ever doubted himself.

With love,

Tuesday, August 10, 2010

Sophia, The Older

First, Eli is improving every day. Every day we can tell he is less frightened for the safety of his new legs. Every day he is even more brave than the day before. And, every day his smile is even bigger.

Now for the reason for this particular post.

The focus of this blog is the extraordinary Elijah Ramirez. But behind every extraordinary little boy there is an extraordinary sibling shining through...okay maybe not behind EVERY extraordinary little boy, but behind this one for sure.

Elijah's Granna wrote about Sophia and her part in Elijah's magnificent journey. Her words made me realize that Sophia is my hero. She is the most unselfish and kind human being I know. She cares for her brother more than anything in the world. She is also extraordinary in her own, unique right!

By Anna Ramirez on August 6, 2010
Older Sisters

For the first three years of my life I was an only child. Perhaps I felt entitled and was spoiled a little. I can imagine that my parent’s world revolved around me and making sure I was given every little thing I could want.

Then, suddenly, I was no longer the only apple of their eye. Or maybe I remained the apple and along came a chocolate covered donut. Whatever, everything changed. I had a little sister.

If I could tell the story I want to tell, I would present myself as the most adoring, welcoming, gentle sister this child could ever want. Instead, I have come to realize that I was annoying, jealous, mean, selfish, and resentful. In the beginning it was probably to be expected. After all, once you’ve been adored as I was, it’s hard to find a new place of recognition outside the spotlight.

To add to the challenges I was facing as an older sister, SHE was pretty sick. SHE needed lots of time and attention and they even left me with “people” to rush her to the doctor. SHE needed lots of medicine and breathing treatments and special things to eat. SHE didn’t have to eat some things because SHE was “allergic”. (I learned the word early on but it took a while to know what it meant. To me, it only meant SHE was very special.)

I’d like to say that as I got older and understood more that I understood more. Actually, I refused to understand and made some really manageable mole hills into mountains. It took 50 years for me to give it up and that is when SHE became my best friend. We talk every day. SHE knows all my secrets and SHE tells me when to back off or step up. SHE knows my history and where I’m coming from, fundamentally.

Today, I’m a better, older sister.

My granddaughter is an older sister and I have kept a close eye on her for eight years now. I don’t live close enough to be in her daily life but I know what to look for when we’re together. When she was five (many more years than I had to be entitled) she was given a little brother. And, he was, is, very special. He was born with a genetic make up that affected his whole life. He’s never known a day without challenge and he has learned to do some amazing things with his limited abilities. Wow, did my granddaughter ever get slammed with challenges to her older sister status.

How’s she done? She is exceptional, somewhat typical, but never resentful, selfish or mean. Oh, God. How good you are to show this child how important she is in the life of her little brother and her Mom and Dad. Together they work so hard to make their family all it can be with all the challenges they have.

When baby brother was being wheeled down the hall for surgery, this little older sister climbed up on the rails of his bed and whispered, “Don’t worry. I will never leave you. I’ll be right here.”

No one could love a little brother more than she does. She is so patient with all that comes with meeting his needs and even though it’s hard at times, she still lets him be part of her neighborhood “club”. All her friends make sure he’s right there when they play. She defends him when ignorant people ask thoughtless questions and she’s become compassionate in ways no eight year old should have to understand. She’s brave and funny and teaches us all how not to be afraid. After all, this is just her little brother.

Wish she had been around when I got my little sister. I bet my little sister does too.

Monday, August 2, 2010

"How Is Elijah Doing?" You Ask

From the desk of David:

Thank you so much for all the prayers and encouraging words on Elijah's behalf. I cannot drive to the perimeter of my neighborhood without someone waving me down to ask, "Is Elijah doing well after his surgery last week?" I continue to believe your prayers are being heard and answered on a daily basis, so keep them coming.

Honestly, it's been a rough few weeks, although the most important thing is this: Eli really is doing very, very well. His sleep schedule is a mess, as always happens after a major surgery, part of a package deal including a grueling road trip to Shreveport and pain medicine that affects his sleep and digestion. But if you ask him if it's affecting him, he'd look at you like you're crazy. He's sitting up for long stretches of time, playing loud and hard with all manner of toys. He's eating nicely, and we've been able to reduce his dosage of pain med significantly since we returned.

Even though he's doing great and playing hard, he has his moments. The day mostly looks like this: Wake up, play super hard, then feel worn out in the afternoon and need a 3 or 4-hour nap. Wake up again, play super hard until well after midnight, then crash again. It's tempting to leave him off the pain med for longer and longer periods, but we're always surprised by how swiftly he begins to feel discomfort after having seemed unaffected for hours. Many of you know what that roller coaster is like, so you can only imagine what it feels like when you're a 3-year-old.

Please continue to pray for Eli!

--- The Dad

Saturday, July 31, 2010

Elijah Plays with Cars

For those of you who don't know my husband personally, what you miss is that he is extremely resourceful and creative (perhaps you pick that up in his writing). David figured out a way for Elijah to sit in his chair (it's a plastic chair with high sides and back, not far off the floor) with his TV tray across the arm rests with our ottoman holding it in place so that Eli could play with his cars on the TV tray top. I was very impressed and Eli sat there like the big boy he is playing and playing.

Eli is very tense when we pick him up. David taught him to say "be gentle." I think that makes him feel better even though we would be gentle with or without his request. He remains on pain medication, but he is feeling better every day. Just two more weeks and he'll be back in Shreveport to have his new, fabulous legs revealed. Can't wait.

It's so invigorating for us to be able to focus on something NEW rather than the NEXT surgery....there is NO next surgery. I will interject that Elijah will need new tubes in his ears, but come on folks, that's nothing compared to his list of procedures so I can hardly call it surgery. Now, we get to focus on helping Eli learn to LOVE to eat like the rest of us. Learn to use his new legs to help him walk. Learn to better articulate his sounds so that we can understand every word of his constant talking. We can focus on potty training and sleeping through the night. These things are all so important to Eli's life, but until we could see past this long list of surgical intervention and everything that comes with that, they had to be on the back burner. Now, they are front and center! In fact, in August Eli will begin a weekly food therapy program and have a swallow study. He will see the ear doctor for a plan for new tubes. And he will begin school again in a class for more advanced little fellas like him. August is buzzing!

Thank you for continuing to pray for Elijah's comfort and healing. Joy bubbles up inside me to see Eli smile and thank God, he is smiling again constantly.

Love you all so very much. Thank you for keeping up with Elijah. You will never fully know how your prayers and concern have changed his life, but know that they have!


Sunday, July 25, 2010

Elijah receives Hero status!


This morning, Eli woke up with a smile. A huge victory for the whole Eli team. Elijah's Granna, my mother-in-law, wrote an inspiring rendition of our week in Shreveport that I know you will enjoy reading.

From Granna (Anna Ramirez)
If you have been following the blog you know that Eli had another surgery last Wednesday. Thank each and every one of you for your prayers and help. He is home now and doing well.

John, Mark (our son), and I traveled to Shreveport to be with Eli and his family and Melissa's parents, Ken and Sue. We know he recognizes the Shriners Hospital when they pull up to the gate. We know that his knowledge of what will happen must be sparked by the six hour drive preceding arrival at the familiar gate. After all he is a really smart guy.

When we arrive we all are always greeted by the most friendly people at the front desk and walking down the halls we encounter many smiles, some looks of frustration from children and parents who are working on physical therapy. There are some protective looks from kids who know what it is to be in this facility of good and bad things. The most unbelievable happy greetings come from nurses, especially when they know we are here to see Eli Ramirez.

The best part is walking into the play room where David and Eli are and hearing this kid scream, "GRANNA!" Excuse me but that is such unspeakable joy. That's just me. (He does the same for John and Mark but for now, I'm the one writing and I get to tell it my way.) There are kisses and hugs all around and then we're on the floor playing non-stop. Finally, Eli climbs the steps to sit in front of the lighted bubble tower that changes colors. As he climbs down he makes it down the first step and falls asleep on the second. This is going full throttle and running completely out of steam. We've stayed past visitation hours but it was worth the only negative word we received the whole visit from the security guard who had to let us out. Tomorrow will be a long day full of unknowns, prayers and waiting. Eli will be the focus and God will be in control.

I don't know that I've really ever had a hero. I just never trusted people that much. I've had people I admire, those I love more than life itself, and those I am grateful for. Hero status just hasn't been something I attached to anyone I've ever known, until now. I have found my hero. He's pure and innocent and he doesn't seek anyone's permission or admiration. He doesn't pretend to be brave and he lets everyone know when it hurts or when he's mad about what's happening to him. In the same breath he can say I love you, thank you, bye bye or give a high five. He gets it and doesn't flaunt the fact that he's been brave, courageous or incredibly amazing. He's not famous and doesn't get millions of dollars for his talent. He teaches himself to do the impossible and makes others see that they are just lazy if they don't try as hard as he does. We have learned so much about God's definition of perfection from a little guy who is very different from the run of the mill people around him. Because of him we get to be around his friends and compatriots who are as unique and incredible as he is. This guy is going to show us all how to live our lives without rewards or trophies. He is teaching us that satisfaction is something as small as getting a drink of water and as huge as pushing through the pain to run!

Yesterday we walked into the room and his eyes were bright and his smile was huge. We knew he had a six hour ride home in a car that would toss him over each bump. He kissed us goodbye and gave us high fives. We got in the car for our own ten hour drive and at the end of the day we were complaining about being cramped, hungry, and tired.

We had already forgotten.

This morning as I was writing this, Melissa called to report on how things went last night. She said she woke up to hear Eli yelling "No, Daddy NO!". David needed to change his diaper and he knew it was going to hurt. Melissa and David and Eli got the diaper changed and they all went back to sleep.

Hero status granted to Eli Ramirez...and I get to be his granna.

Saturday, July 24, 2010


We are home. Made the journey yesterday. Elijah slept most of the trip, which was a huge blessing for us. He was excited to be home, but as soon as we finally pulled into the garage, he started to cry because he knew he would be picked up and it would  hurt. He was picked up, and it did hurt. I just cannot describe how it feels to watch your child endure such pain. Unless you too have experienced this,  I'm not sure one can even imagine it. When we change Eli's diaper he begs us not to, "No momma." With all of my heart,  I want to leave the diaper alone, but that would just lead to other problems.

The pay off for this pain will be fabulous,  but for now, it just hurts really badly. Please pray for Elijah's recovery to speed like a freight train.

love you all,

Thursday, July 22, 2010

Difficult Day

Elijah is in a great deal of pain. Perhaps the most pain after any of his nearly 15 surgeries. He cries in terror whenever we change his diaper or pick him up. He remains on the pain pump, but his pain persists. I also think he is scared of the potential pain. I know it will improve day by day, hour by hour, but it is very hard for us to watch.

Elijah's experiences age him. I know I haven't experienced the level of pain he has endured in 3.5 years. Wish I could go through it for him.

We are unsure if we will be making the journey home tomorrow or having to stay another night. I know the ride home will be very hard on Eli.

Thank you all for praying for our sweet child. We treasure you.


Wednesday, July 21, 2010


As I was helping the nurses change Elijah's diaper a few minutes ago, I had my first real opportunity to hold his new legs in my hands. In that instant, I felt a blessed release from the apprehension and slight depression I've been feeling ever since we amputated his feet earlier this year. Back then, I had the sense that we'd been conquered somehow, that Elijah had lost an important battle so that he could eventually win the war. Well, the war is won. His new legs don't just look good, they look VICTORIOUS. His grandpa Ken said he looks taller and longer, just like any other three-year-old. I was too fatigued to register the concept at the time, but now, I couldn't agree more.

How to describe what I'm feeling? It's like opening a package on Christmas, and instead of finding socks or cleaning supplies, or even the toy you asked for, it's the most thoughtful, most appropriate gift you've ever seen. The gratitude is so profound you're reluctant to say thank you because the words fall short. It's odd to be sitting here at the Shriner's hospital, pushing Elijah's pain medication button and fussing over his slightly high tempurature, but feeling something other than sadness. There's this joy in me that I plan on carrying with me over the next few months as all the players in Eli's sphere work almost as hard as he does to get him UP and walking. God's always had a plan for Elijah's life, but sometimes I didn't feel like I could see it. And tonight, I do. So there it is.

We've got a couple more sleepless night ahead of us, and there will definitely be some discomfort as Eli recovers from this very difficult surgery. KEEP PRAYING!


Eli's resting

Eli has been comfortable today. His pain pump has remained active and he's been sleeping most of the day. Doc says all looks well. Pray Eli will sleep tonight.

Love all,

Surgery Complete

Elijah is in recovery. He will likely be there for 1.5 hours before we can see him. Dr. Gates said everything went very well. He removed a wedge of Elijah's fused bones plus a little to give the veins and nerves room. He is in splints and a strap around his thighs to keep his legs together since he's used to a sprawl.

Doc says Elijah can stand up as soon as he's ready. His bones are strong with a metal plate and screws.

He'll be on a pain pump until the IV in his head goes bad, which is usually pretty quick, then pain med through the g-tube.

I'm excited for Eli. He'll get to walk! What a miracle!

The pain is coming, it's hard to watch.

Love all,

Surgery in progress

Elijah is in surgery. Dr. Gates began about 7:40 a.m. We're expecting the whole thing to take 2-3 hours, but it's hard to predict before the surgeon gets in there.

The best news we received yesterday is that Eli will be in prosthetics within 2.5 months! Walking by Halloween! That news makes today's surgery less horrific for me. I'm actually excited to get past today and onward to walking. I know, if he could, Eli would thank us.

He was scared this morning. His "I don't care" cocktail gives him less relief than the first time he had it. His body metabolizes so quickly such drugs. It did help. He wasn't screaming in distress as he was wheeled away.

We have some of our dearest loved ones here helping us endure this part of  the journey.

Keep praying for Dr. Gates. Pray he makes the exact right decisions. Pray Eli's nerves and blood vessels are protected and take to the new formation with ease. Pray he forgets and remains pain free. Pray for those of us here who will have to see his pain. That's not easy.

I love you all.

More to come.


Tuesday, July 20, 2010

Checked in

Elijah is checked into the hospital. He's experienced the flurry of tests he's used to the day before surgery -- blood pressure, oxygen level, temperature, OT, PT, x-ray, etc. I think he knows the tests aren't really that bad even though he cries. I think he knows what comes next...

Many of the in-patient unit staff know Eli and say "Hi Eli, you're back." Eli likes that. We're treated like family here.

Sophia is busy entertaining Elijah with all of her might. Smiles. Hugs. Fun ideas. Songs. She's the greatest big sister. As I write, Eli and Sophia are riding in a wagon around and around the unit. Anything to take Eli's mind off of where he is and what that means.

Pray for Eli's peace. Pray he remains pain free. Pray he sleeps tonight. Pray he forgets this stay in Shreveport. Pray for Eli's doctor, Dr. Gates. Pray for his wisdom and his skilled hands. Pray for the kind nurses here as they care for Eli. Pray for safe travels for us and our supporters.

Special thanks to the family house sitting for us and the family dog sitting Charlie. Love you guys!

More soon.

Friday, July 16, 2010

Eli In The Sink; Surgery Next Week

Movie time! Here's 10 minutes of Elijah having a fantastic time in the kitchen sink. You'll see him master sarcasm and feign surprise, play in bubbles, turn the faucet on and off, and sing with big sister Sophia. We had a great time.

Now let's take a moment to say farewell to the 45-degree angle in Elijah's knee joints. For those of you who don't know, he'll undergo a major surgery next week. Although it's technically elective, it's the very definition of invasive. Our goal is to straighten the knees, giving him one long limb from hip to ankle. This is the last big surgery needed to allow Eli to walk. Melissa tells people he could walk by Christmas, and it literally blows my mind, and I have to sit down. There's just so much hard work ahead for him. Please pray for Elijah on Wednesday morning, July 21, starting around 7:00 a.m.

I know it sounds odd that we would miss these bent knees -- with no cartiledge or growth plates around the patellas, he's never been able to bend them -- but Elijah has learned to do so much with them. For instance:

  • He can sit in the sink, because his legs fit.
  • He can climb up the stairs. He can climb down the stairs.
  • He can crawl on his knees just like other kids.
  • He can stand on his knees and reach up onto the furniture and some chairs.
  • Most importantly, his knees have frozen his legs in the "criss-cross" style that so many of us take for granted. This is how he learned to stay sitting, to raise into a sitting position, and everything he now knows about balance. I've often marveled at the fact that, while his underdeveloped inner ears may cause him problems with his equilibrium, his amazing leg structure has allowed him to compensate as quickly as needed. It's possible he'd still be lying on his side if not for these knees.

Still, there's no doubt this is the right thing to do. Elijah is ready to walk long distances, and he certainly does try. This week he demanded we allow him to scootch from his classroom to the school's front door on his own power. But he must either crawl, scoot on his bottom (causing a lot of friction on the underside of his legs; the callouses are profound) or hop in the air using all the strength in his thighs. It's time to give him the legs he deserves.

Despite how unfair all this is, it's a genuinely great thing to have a son I can call my hero.

P.S. It's time again for Mini-Laps, the Little Lighthouse fundraiser. We'll make a more formal request for your help, but don't wait to donate if you intend to. Small gifts mean a lot, and it's important that you tell your friends about Eli and what the Lighthouse has done for him. Donate at:

Tuesday, July 13, 2010


This evening, I am encouraged. I am overflowing with peace and anticipation. God is good. Eli is in His care. We will all survive the coming week with flying colors.

We are blessed. We are blessed to be the parents of a magnificent child (two of them) who touches people around the globe with his smile and tenacity. We are blessed that our Savior uses us to show his love and compassion to those we know. Thank you, God, for caring about us with such depth we can hardly comprehend. Eli is cherished by many.

Eli is still sick. He needs to heal so his body will be ready for invasive surgery (no laparoscopic here).

Love you all,

Saturday, July 10, 2010

Pass the salt, if you must.

Sometimes it hits me out of no where. It's like a knife stabbing deeper into my unsuspecting heart. Today, while minding my own business at the nail salon (one of my few indulgences), I was watching a little girl and her mother as the mother worked to keep the child entertained while she had her pedicure. In my mind, this child was at least 6. The nail technician asked the child, "how old are you?" I didn't hear her response, but I heard her mom say "no, you are THREE." I gasped. The child four times the size of my Eli is his age? Shoot! My eyes automatically filled with tears and the salt poured into the open wound. When will it heal?

Are you ready for more honesty from the Ramirez home? We are dreading Eli's next surgery. I cannot think of one surgery that we've looked forward to. It's such an interesting frame of mind: we work like mad to make sure Eli is prepared and healthy for surgery, but we dread every minute of it with our entire beings.

This surgery for Eli is not one well practiced even at the Shriner's hospital. I'm not even sure our precious and brilliant Dr. Gates has performed such a surgery in his career. Eli's knees are stuck at a 90 degree angle. His knees do not bend. He has no knee joint. His bones are fused at the right angle. One week from Wednesday, Dr. Gates will open Eli's leg, remove a portion of his fused bones and then reset the bones straight. When the bones, skin, muscle and leg heal, Eli will have a completely new leg structure.

He's known nothing but these stuck-in-a-bend legs. These legs, though, give him great balance and the ability to scoot around on the floor to his heart's desire. We'll be taking away some of his abilities, but it's a trade up...eventually. I wish it could happen with great speed that Eli will move into the ability to walk, but I know he will need a lot of time to heal before he can take that on.

Please pray for our family as we prepare for another difficult adventure with the Shriner docs and nurses in Shreveport. Today, Eli has an ear infection and a lot of congestion. Pray for his complete healing. David has pneumonia. Everyone is on the rebound, but time is limited...we need quick, miraculous recoveries.

In my heart, I know Eli will be walking by Christmas. Come on Christmas, we're ready!

With love and gratitude,

Saturday, July 3, 2010

Super Cute Late-Nite Plea

Last night was a humdinger, with both kids staying up watching TV until 11:00. Sophia finally started to drift off, but Elijah was going strong, playing on the floor with his big cardboard blocks, mostly setting them up and knocking them down. I saw my chance, so I swooped down and scooped Eli up. He instantly went from giggling and talking to the block to saying, "Help me, Sophia! Help me, Sophia!" over and over with his hands stretched out toward his sister, who was groggy and oblivious. I couldn't help laughing but tried to keep it to myself; if he heard me, he'd think it was still playtime. (By the way, Eli passed out as soon as his head hit the bed.)

"Help me, Sophia! Help me, Sophia!"

Tuesday, June 29, 2010

An Eli conversation

Eli: "daddy, daddy, daddy"
Melissa: "Hi Eli."
Eli: "Where's Daddy?"
Melissa: "He's outside watering the plants."
Eli: "Let's find him."
Melissa carries Eli to the front door window.
Melissa: "Do you see him."
Eli: "No."
Melissa carries Eli to the window in the next room.
Melissa: "Do you see him."
Eli: "There he is."
Melissa takes Eli out the front door. He sits on the front porch. David is half way down the front yard, pulling the water hose. Melissa's in the house watching Eli through the front door window.
Eli: yelling "Daddy, I want to help you. I want to help you, daddy. Daddy, I want to help you. I want to help you, daddy."
Melissa yells through a cracked door, "David, Eli wants to help you."
Eli: "Close the door. I will tell him."
Eli: yelling "Daddy, I want to help you." Sly look back to make sure the door is still shut. "Daddy, I want to help you."
And, he helps!

Great day!

Saturday, June 19, 2010


My circle feet boy has a diagnosis of bronchitis. He had a 103 temperature on Thursday evening after spending the day at the cleft clinic. Dad reports he was miserable all day, but they made it through with Grandma Bobbie's help. He's on meds and was already feeling better yesterday evening. It's rest and relaxation in the forecast for Eli although I'm sure he'll ask to go outside, upstairs and play in the water...we'll likely oblige.

Continue to pray for Eli's complete health to come quickly so he is prepared for surgery in July. It's tough on us when we've had a surgery scheduled for 6 months to have to reschedule...these docs are extremely busy.

I love you all,

Monday, June 14, 2010

Circle Feet

Elijah loved the river. We'll post pictures soon.

Another 3-year-old little boy asked me about Eli's "circle feet." He commented that he didn't have circle feet himself and before I could help myself I had said "too bad for you." Perhaps horrible of me, I know. But the 3-year-old is family and I figure I'm forgiven for the transgression. Later, I tried to convince myself that calling what is at the end of Eli's leg "circle feet" just might work.

Eli made it onto the growth chart. He is in the .01 percentile. It probably means he is among the lightest of 3 year old children, but he's never been on the chart before. Honestly, I'd convinced myself I didn't really care about that, but being on the chart seems like a step forward. I remember when he was born and the months ticked by and they showed me the chart and said "uh...Eli's down here some where." Geez, thanks for the boost of hope there.

Five weeks to Elijah's next surgery. Another big one. Really big.

I see visions of Elijah running, eating and asking for more...lots more... and speaking clearly for all to hear and understand. Elijah's first steps will inspire me... and the world.

Pray for Elijah's health in these weeks leading up to his leg straightening surgery. Pray that when Eli visits the cleft palate team in OKC later this week that if there is additional intervention they can do for his speech that it be identified and a plan developed. Pray for safe travels as Eli and David go to OKC and Sophia and family travel home from the river later this week. Pray that Elijah continues to improve his finger/thumb pinch on his left hand to perfection.

Thank you for praying.

I love you all!

Saturday, June 5, 2010

Elijah Swims!

No words. Just... magnificent.

Tuesday, June 1, 2010

16 Steps To Victory

Dad reporting in, late at night (11:27 p.m.):

Not a creature was stirring, until from the baby monitor there arose such a clatter, Elijah sitting up in his crib talking to himself at the top of his lungs. Seriously, a conversation complete with questions, answers, exclamations and thoughtful responses (i.e. "Hmm! Yeah!") I just had to get him out of bed and play with him, and also give him some more to eat.

On the way upstairs, he asked me to put him on the floor of the foyer. Before I knew what was happening, he had climbed the first three steps of the flight leading to our second floor. These first steps curve and each have about twice the surface area of the other steps, so when he got to the first proper stair, I thought he might slow down or ask me to pick him up. Instead, he bore down on the step and said, "I'm climbing, Daddy!"

And climb he did. One step, then the next, and although I had a hand hovering behind him the whole way, I never once had to use it to catch or steady him. The process went like this: 1) He would swing his left leg onto the step, 2) reach up TWO steps ahead with his right hand, 3) pull forward with the hand while he lifted with the foot, and 4) lift his entire body with the remaining right foot and left hand. Then, 5) once his whole body was on the step, resting forward on his elbows, he would carefully scoot his bottom underneath his torso, because HE KNOWS he can't sit up until he has cleared the entire step. And my friends, he did that 16 times, one after the other, never slowing down. The whole climb only took about five or six minutes.

About halfway through his quest, he needed to take a little breather. Instinctively, I said, "Don't give up, Eli!" And he responded with, "Don't give up, Daddy!" He kept repeating this until, inevitably, he reached the balcony and demanded to know where his stuffed Clifford doll was. I didn't know whether to laugh or cry, cheer or just stand there speechless. I'm still swimming in a little hazy cloud of Impressed.

Now we're going to watch "Clifford's Big Movie," which Elijah has MEMORIZED from beginning to end. He finishes every sentence, he sings the songs, and whenever the characters act startled by the Big Red Dog, Elijah always participates. "OH WOW!" he shouts then throws up his hands, as though it's the first time he's ever seen Clifford hop out of the trees.

It's nights like this I remember: For all our efforts to make life easier for Eli, for all our work and planning to provide him with joy and happiness and a loving home, it is he who has brought joy to our home; it is Eli who has improved our quality of life. And as for you, Eli's prayer for you tonight is this... "Don't give up!"

Saturday, May 29, 2010

Trucking along

The thought of Eli having to deal with RP on top of everything else he has to deal with is still overwhelming to me, but I'm focusing on the NOW and the positive. So, don't ask me about the RP. I really don't want to talk about it yet. I'm just not ready. I know that is very unlike me, but I will tackle it with all my might soon...just not yet. Thanks for understanding.

Eli is on break from the Little Light House. Sophia's last day of 2nd grade was yesterday. She is thrilled to be a third grader. We are proud of both the kids.

Eli enjoys "swimming." I think he actually enjoys saying "I want to go swimming" more than he enjoys it once we get him in the kiddie pool. The biggest thing is if he hears Sophia is swimming....he must then swim. He will say everything Sophia says. He just repeats her. It is so cute. We love it.

Happy Memorial Day, friends. I'll be in touch.


Friday, May 21, 2010


My general philosophy about Eli's blog is not to post when I'm feeling defeated. Today, I write to you in my despair. Elijah's optometrist told us that he sees signs of retinitis-pigmentosa in his eyes. RP runs in my family. My kids have a 50/50 chance of inheritance. I was sure Eli wouldn’t have to deal with that too. RP can cause blindness in men. I know that the concept of fair really is a figment of our imagination. Life is not fair. Should Eli really have to deal with anything more?

DON'T TELL MY GRANDMOTHER, please. I've decided that I'd prefer she not know. So, blog world, let's keep this to ourselves.

I have to put on a really brave face tonight as Sophia is having 13 of her closest friends over for her sleep over birthday party. I’d prefer to go hide and cry.

Please pray that Dr. Groves was wrong. Pray that Eli doesn’t have RP. That is my fervent prayer and request of you, my friends.

Thanks for going through this with us....the ups and the downs....there are plenty of both. We trust in our Lord to bring us through this, too.

With love,

Thursday, May 20, 2010

Sophia's Talent Show! (2nd Year)

EVERYONE has been asking how Sophia did at this year's talent show. See for yourselves! Her mommy and daddy are so proud of her.

(Insert "American Idol" comment here)

Saturday, May 15, 2010

No News is Good News

From the Ramirez home, no news is usually good news. That's the case this week. We are trucking along as usual. Eli is doing well. Sophia performed beautifully on Wednesday and we were all there to watch. We are starting to think about Elijah's July surgery. It will be in the top three most difficult surgeries for our sweet boy (along with skull suture opening and foot amputation). I'm not looking forward to the procedure, but excited for great outcomes. I cannot wait to post pictures of Elijah's first steps!

Love you all,

Tuesday, May 4, 2010

New job

I started a new job on Friday. After 12 years in one place, it is so odd to be the newbie. I'm observing more than I'm contributing, which is so anti-Melissa. Soon, that will change. I love my new job! Love it!

We are doing well. Eli is loving school and learning. He is coming along. Sophia will be in this year's talent show again. I bet we'll tape it and show you here. Keep an eye out.

Love you all,

Saturday, April 24, 2010

Sophia wins grandest hat

Today, thanks to Granna and Grandpa's generosity, Sophia and I attended the Little Light House's annual fundraiser called Garden Party. The ladies are invted to wear a hat. For those who take it a little far, grandest hat awards are given. This year, Sophia won Grandest Hat in the little girl category. She was thrilled. I will post a picture of her hat for you soon. She adorned it herself.

Eli is doing great. He has an ear infection and we need to get that whipped. He isn't moving his new thumb yet although the cast is off. Please pray Elijah will thrive with his new thumb soon.

I turned 35 this week. Thank you for all of the b-day wishes.

Love you all,

Saturday, April 17, 2010

The Newest Ramirez


I apologize for our too long wait between posts. This time it simply means we've been super busy.

You may remember that we told Sophia she could have a dog after the major surgeries. David and I decided that with only one left, we could take the plunge early. So, one week ago, Charlie the Yorkiepoo joined our family. He is 10 weeks old now and so sweet and fiesty.
Such a cute dog (think teddy bear, folks)...and adorable girl.

Elijah on Easter.

Eli, Sophia and Charlie on Easter.
On Monday, Eli and David travel to Shreveport. Eli will have his cast removed on Tuesday. Then, we won't be back in shreveport until July 21 for leg straightening. Eli is thriving!

Love you all,

Tuesday, March 23, 2010

New Thumb II - The Sequel

Finally, as promised, pictures of Elijah's new thumb. To recap: The first thumb operation on the right hand needed only the relocation of a few tendons from one side of the hand to the other, but the left hand's first digit had much less in common with a thumb (number of muscles and bones) than on the right hand. So we did a true pollicization, which meant moving the entire first digit further down on the plane of the hand and turning it about 90 degrees. Melissa and I are very, very pleased with the results. These pictures were taken just before we replaced the plaster splint with a fiberglass cast. Take a look:

And now for something completely different...

Sophia and a friend at the Tulsa Zoo. A day of high class adventure and elegant discovery.

Signed, Dad

Saturday, March 20, 2010

Eli is Houdini

David and Eli arrived safely home about 4 p.m. on Tuesday. I met the two of them at the QT down the road for drop off from the Shriner's van after a 6 hour trip. I saw Eli and commented "that cast isn't going to stay on." Little did I know that he'd have it off by 6 p.m. (Houdini has nothing on Eli) and we'd be on the phone to Shreveport figuring out what had to be done. By 9 p.m., we were back in the car headed to Shreveport...we stopped in Paris, Texas at midnight to sleep and then finished the remaining 3 hour drive the next morning...had a new cast applied and headed home making it about 9 p.m. Miserable for all of us, but especially Eli. The new cast, designed solely to keep his new thumb immovable for about 5 more weeks, will not be coming off!
  • Tubes in ears surgery moved to April 5. That one is in Tulsa.
  • Back to Shreveport April 19 for cast removal and thumb check on April 20.
  • We get May off.
  • To OKC on June 19 for a cleft palate clinic where they will determine if he needs anything else done in his mouth.
  • To Shreveport on July 19 to prepare for leg straightening surgery on July 21.
Nothing scheduled after that. Ya Hoo! We know we'll have follow up in Shreveport 4-6 weeks after July 21 surgery and then we'll have to return for prosthetics and prosthetics checks and prosthetics adjustments, etc. Clearly, we should find a prosthetic person in Tulsa to work with us too. Shouldn't be a problem.

We have pictures of the new thumb. They will be posted soon.

We are waiting on snow today...maybe EIGHT INCHES. Yes, it is March 20 and Spring has taken a last-minute nap before her grand entrance. Old Man Winter has seized the opportunity for a final farewell. WAKE UP SPRING!!!

Love you all,

Sunday, March 14, 2010

To Shreveport...again

Tomorrow, Eli and David will be heading to Shreveport on the Shriner's van. We expect the docs in Shreveport to remove Elijah's splint to review his surgical outcome on his thumb. Then, I think they will recast it for a while. I plan to send the camera with David so we are sure to get a first look at the new thumb. I am hopeful that we can get the new cast removed in Tulsa rather than another trip to Shreveport in four weeks.

Eli is scheduled for his next surgery on April 12...that's for new tubes in his ears. We can tell that his hearing is impaired. His set of tubes placed 15 months ago are either falling out or out. They are no longer draining the fluid in his ears. They tell us it's like he's under water listening to what we say. So, it's mumbled and directionless. We knew it was an issue when we opted to have his thumb made rather than tubes placed the first week of March, which meant the ears would have to be 6 weeks later due to general anesthesia not being allowed that closely together.

Love you all,

Saturday, March 6, 2010

Eli's first visit to the CIRCUS

Thank you Wally and Louise for the circus tickets. Eli had a great time!
For the rest of you, we went to the Shriner's Circus that raises money for the transportation department, which we use frequently. The circus was the weekend before Eli's surgery last week. He really enjoyed himself. He's getting to the point where we can take him to events like this. So much fun for all of us.

And, today, we enjoyed the nice temperatures. Eli has grown to LOVE his outside swing.
As you can see, this arm-in-a-cast thing is hardly even a bother to Eli. He just lugs it around like a normal thing. Of course, Clifford was along for the swing.

Love you all,

Friday, March 5, 2010

Eli eating gravy

We have a favorite spot between Shreveport and Sapulpa where we like to eat. We hit it for dinner on the way there and Eli enjoyed gravy. I will share more magical moments from this trip soon.

Love you all,

Thursday, March 4, 2010


Elijah's surgery finished yesterday right on time. He came back to me with a little nausea, which he overcame shortly. He slept with one eye on me making sure I was bedside. He progressively came around and even gave me a few laughs as we watched Dora together.

The procedure yesterday was far more invasive than what he had done on the other hand. It is called Pollicization. Here's a definition:
Pollicization is a plastic surgery technique in which a thumb is created from an existing finger. Typically this consists of surgically migrating the index finger to the position of the thumb in patients who are either born without a functional thumb (most common) or in patients who have lost their thumb traumatically.

During pollicization the index finger metacarpal bone is cut and the finger is rotated approximately 120 to 160 degrees and replaced at the base of the hand at the usual position of the thumb. The arteries and veins are left attached.. If the thumb is congenitally absent other tendons from the migrated index finger may be shortened and rerouted to provide good movement.
The surgeon said this is a very difficult procedure, but one with a lot of satisfaction. We are expecting greater functionality from his new THUMB!
I'm amazed at how EVERY employee at this wonderful hospital has high spirits. No one wakes up on the wrong side of the bed or brings personal baggage that impacts their attitude. I'm amazed at how they not only treat us (and especially Eli) with extreme respect and compassion, but also each other. This is a great place to be (if you have to be here that is).

I told Eli upon his arrival "every time you leave this place, you are better." It is true. What would we have done without this place where the experts gather to help children with unique issues? I'm glad I didn't have to find out. Thank you Shriners.
Hopefully we will go home today.
Love you all,

Wednesday, March 3, 2010

In Surgery

Eli is in surgery. They took him back about 7 a.m. and just called to tell me it will be one more hour. He was a little anxious this morning.

David is back at the hotel getting his sleep before we are needed bedside.

Love you all,

Tuesday, March 2, 2010

Checked In

Eli is checked into the Shriner's Hospital and ready to be the first surgical patient in the morning. He has done really well today considering the stressful situation of being poked on.

Thanks for your prayers.


Monday, March 1, 2010

Ready for Check In

We are in Shreveport this evening after a long day of visiting Eli's doc, packing and driving.

Best news of the day, I am an aunt, again! My brother's baby was born today about 1:40 p.m. Her name is Sawyer and I cannot wait to meet her in person. I was disappointed to miss the excitement today at the hospital. I am overflowing with gratitude for no surprises. My brother's birthday was yesterday. What a fabulous day-after-b-day gift. Congratulations Greg and Somer. Welcome Sawyer!

Tomorrow, we'll check Eli into the all-too-familiar hospital. Our routine will begin with Elijah's tummy tying up in knots. He won't be able to keep food down most of the day. I hate it that Eli experiences stress at 3 years old. Surgery will be Wednesday. This one will be on his right hand to give him more strength in his thumb.

Love you all,

Wednesday, February 24, 2010

Winter, you are dismissed

We've been on over drive the last bit.
David has pneumonia.
Eli has an ear infection.
I'm recovering from a cold that David caught which gave him pneumonia.
Sophia is fighting off the cold, which she caught from David or me...who knows.
The positive side, we are a very sharing family.
For those of you close to us just finding out the above via the blog, I apologize. We are all on the mend and no real need to sound any alarms. We are ready for a germ-free spring and summer!

Eli had an appointment today. Doc says he might still be ready for surgery on Wednesday if things clear up in his head a bit. We'll take him back in Monday morning to be sure. If doc clears Eli, we'll head to Shreveport for Eli's next surgery. This one will be a duplicate of the pinky muscles being moved to the thumb side on the other hand...that'd be the right hand.

I'd love to skip this surgery. I feel like we just now recovered from the Jan 5 surgery. But, it's so tempting to see the end of this list of surgical interventions and so we are forging ahead.

We are planning to go to the Shriner's Circus on Saturday. We plan to take Eli. This will be his first experience with something like this. I bet he loves it.

My brother and his precious Somer are expecting a baby...any day now...pray for baby surprises...boring entry into this wonderful world...that prayer has far more meaning to me since Eli's radical entrance.

Grandma Edna is still in the hospital in Dallas. Thanks for remembering her.

Love you all,

Sunday, February 14, 2010

This Year's Tasty Valentine

Every year, David makes my valentine. This year, it is an edible bouquet made of fruit especially for Sophia and me. He melted chocolate too, which Eli even enjoyed.
I cannot be sure if any of the chocolate actually made it to Eli's taste buds, but he enjoyed the smearing on his face. We had a ball.
Thanks, Valentine, for the wonderful treat.