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.