Friday, December 23, 2011

Random Disney World memories

We’re back! Did you miss us? Only crazy people would take their kids to Walt Disney World for eight days right before Christmas, and you already think we’re plenty crazy, so we didn’t make a lot of noise about it. But Sophia and Elijah were just so stinking cute this week, I just had to tell you some of the amazing things they did and experienced. Pics and Videos to follow!


Obviously, the main reason we went this week was to experience Christmas (they call it Christmas, NOT “Holidays”) at Disney World, and it was totally worth it. Snow on Main Street, huge Christmas trees in every park and resort, character meetings with holiday costumes, free cocoa and snickerdoodles during a party at the Magic Kingdom, and lights lights lights lights lights LIGHTS! We saw several versions of Santa at EPCOT, including Pere Noel (France), Kris Kringle (Norway) and Father Christmas (United Kingdom).Best of all, it was fantastic visiting South Florida when the weather was closer to 70 than 90. Melissa made fun of me for taking so many sweatshirts and jackets, but she used hers often enough when we walked the parks at nighttime. So there!


The decision to take Elijah’s walker was not a tough one, but carrying it to Florida turned out to be a chore. Once we got to the parks, it was so HOT that we left Elijah’s shoes at the room; the first and only night he wore them, he sweated too much. But at the airports, with the long layovers, Elijah really shone like the star he is. From the first few minutes at Tulsa International, all eyes were on Eli as he darted in and out of crowds in his walker, giggling and talking and making threats to go faster. On they way home, he was so excited to stroll down the runway to the plane that he stood staring at the door for twenty minutes, full of nervous energy, grinning from ear to ear. That’s exactly the attitude we always wanted from him when we asked him to walk in his shoes.


There are so many little moments day-to-day where Elijah needs a big person helping him with more delicate tasks, and his sister Sophia was invaluable this trip for that purpose. On the plane, she held up the DVD player so they could both watch “Mickey Mouse Clubhouse,” and she handed him pretzels and sippy cups. When they met the characters, she would carry him to them, set him down so they could meet him, then step back and let him have his moment. She did that so many times! Sophia pushed the stroller, carried the backpack, held places in lines while we changed diapers... basically, she did it all, and she did it smiling. She is an ESSENTIAL part of Team Eli.


Doesn’t the word just make you cringe? But there’s no getting around this singular, well-known term for “first in line.” The boy got special passes everywhere we went, so that he could sit closer during shows, move to the front of long lines, and get on buses early. So if you wanted to know where you could get “special needs assistance” or whatever they called it over the loudspeakers, and you were in a hurry, you just found a cast member and asked, “Where’s the handicapped section?” Either that or look for the ubiquitous image of the Stick Figure Sitting On A Circle.

The first time we moved to the front of the airplane boarding queue, the old feelings of guilt returned. “Are we using Elijah to receive special treatment we wouldn’t otherwise get?” But no, it’s not that at all. It really DOES take longer to get set up on the plane with Eli. It really DOES take longer to get from ride to ride, and to feed him and change him. It really DOES hurt the back to carry Eli while you stand in a line which requires transfer from the stroller. So yeah, those feelings of guilt were fleeting and forgotten. And we really did have great seats for everything we saw, and we made great time moving from one ride to the next. I don’t know how we could have done any of this without “handicapped” considerations. But that word... yuck.


Who do you think felt luckier when Elijah met Mickey? Was it the boy or the mouse? Because to see it from a few feet away, you’d think Mickey had been waiting all day just to see our big boy. Some of the kids are shy or scared when they meet the big animals in their colorful costumes, but Elijah was absolutely fearless all week long. He grabbed Donald’s bill, he kissed Timon’s nose, he GOT kisses from Cinderella and her sisters and most of the other princesses, and when it came time to ham it up, OH BOY did he deliver.

Within the first few minutes of arriving at the Magic Kingdom, one of the cast members recognized Elijah from our visit this summer. He called me over and invited me to get first in line to meet Pluto. The line was really long, and I was a little nervous about “cutting.” But here’s a phenomenon I encountered again and again throughout our trip: Not only didn’t the other families mind when Elijah jumped to the front, they all smiled and laughed (and sometimes cried) to see how much fun he was having, and if the characters devoted a little extra time to the boy, they were happy to let him. After we finished with Pluto, Elijah turned to the crowd he had just cut in front of and waved and smiled. They all said “Goodbye!” and waved back, some yelling “Happy Birthday!” when they saw the button on his shirt.


Melissa worked harder than any of us this trip, just like she does during the week when we’re at home. There’s a lot of walking, and standing, and transporting, and waiting, and if someone in the group needs a little extra rest, well, it’s easy to forgive. So when we realized that Elijah wasn’t going to be able to keep up with “The Ramirez WDW Pace” that we’ve set for our trips, it was agreed that Melissa would also catch some Z’s and allow the boy to recover in the hotel room.

Nevertheless, Sophia had her mind set on riding as many rides as possible, and truth be told, so did I. And thus, it was daddy and daughter who closed the parks at least twice, one time staying in the Magic Kingdom until TWO IN THE MORNING to ride Splash Mountain and Thunder Mountain and various other mountains as many times as possible. We got up early to see Animal Kingdom, and we went swimming in the resort pools twice while mom and son caught up on their beauty sleep. Best of all, it was just the two of us for a special lunch in EPCOT with five of the princesses. I already told you how generous Sophia was when it came time for Eli to meet the characters, but it was wonderful so see them fawning just over her, listening to her stories and posing for princess pictures. She was beautiful and charming all week.

And for the record, Sophia was so brave this trip! She found her inner daredevil on the Test Track and the Thunder Mountain Railroad, and she was even game for Space Mountain one time. Which was more than enough for me. They made that ride faster than it was, I swear.


That big boy Eli found so many ways to enjoy this trip that it will be hard to list them all, but here are a few.

-- FIREWORKS: That boy is a born pyro. (And a gearhead to boot; I plan on him changing my oil when he grows up.) The first fireworks show at EPCOT includes monster-sized flame-throwers out on the middle of the lake, as well as big torches let up at the perimeter of the water, and Elijah kept shouting, “Oh my gosh! Oh my gosh! I cannot believe it! Oh my gosh!” Then when it was over, he asked if we’d see more fireworks later, and he was just as excited the next time. We paid a little extra to sit in the Tomorrowland Terrace and watch Tinker Bell zip-line from the top of the castle to RIGHT OVER OUR HEADS, followed by the clearest, loudest fireworks of the entire trip. I hope Elijah hasn’t found a new hobby...

-- THE TRAINS: Those of you who’ve met Eli know he has a true appreciation for cars and trains, and that makes Disney World one of his favorite places. First there’s the big steam train at Magic Kingdom, and he probably spent more time on that than any other ride, which is a good way to rest mom and dad’s sore feet for a few minutes. The Monorail was another favorite, and he pointed and squealed every time he saw it coming. In addition, Christmas Time is when they bring out a bunch of gingerbread villages with trains moving through them, and every time we encountered one, Elijah would sit and stare for hours. But nothing could compare to the miniature village outside of Germany in the EPCOT World Showcase. He sat on the concrete and stared at the trains moving for about half-an-hour. At one point he looked up at me and said, “Dad, the trains love me.”

-- PARADES: In case you hadn’t picked up on it, Elijah is a magnet for attention. We know people sometimes stare because they can’t help it, but for the most part they have good intentions, and the kind words of love and support are genuine. There are times you wish people would just find something else to look at, but the big parades they hold at the parks are not those times. All the dancers and characters made a special point to come see Elijah when they saw him on the sidelines, and they would hug him and say Happy Birthday. Only a five-year-old could experience so much attention so fast and not be utterly exhausted, but there he was, grinning from ear to ear, spinning and laughing and saying how great the parade was. And he’s right. It was great!!!


And now we’re home! Elijah went to sleep yesterday at 3:30 p.m., and he's still out, making it a 20-hour nap. Then it's time for more gifts, more food, and more travel. Pray for Elijah’s general ear-nose-throat health this holiday season, and don’t forget to visit him on Dec. 31st for his Birthday Celebration. E-mail me at for more details on that. Merry Christmas!

Friday, November 25, 2011

Eli is almost FIVE!

Eli will be five years old on December 23. We've decided these five years deserve a BIG celebration. We're having a Birthday Party for Eli on Dec. 31 and we're inviting everyone who has been in Eli's life since his birth. It's been a wild ride.

So, since you read his blog, you are a member of his team and we want to invite you. If you haven't received an invitation it is only because I don't have your address. So send me an e-mail with your addy and expect your invite soon.


Thursday, November 17, 2011

Eli on KRMG... Prepare For The Cute

Elijah was at LaFortune Park this afternoon to talk on-air with Joe Kelly from KRMG AM740. Joe and the staff of Make-A-Wish were in their second day of collecting donations for the annual fundraiser, and I'm pretty sure they made their goal of $200,000. That doesn't mean it's too late for you to donate! They've decided to send Eli to Hawaii sometime in 2012. (Hopefully they'll decide we can go with him; I'll keep you posted.)

Eli got to look inside a police patrol car, and he talked with several officers, then went right up to a real helicopter and poked his head inside! Then it was time to talk on the radio, and Eli turned on the charm big time. Jeff Summers, CEO of Make-A-Wish Oklahoma, has given Eli the nickname "Hollywood."

We also recorded a "Story Of Light" which has been running on KRMG all this week. We didn't know it at the time we recorded it, but it was actually HILARIOUS. Take a listen by clicking on this link, then scrolling down to the list of names and clicking on Eli's:

We have another ear tube surgery on Monday. No big thing, right? But he'll be under general anaesthetic, and he only weighs 26 pounds, so it makes me nervous. Pray for Eli!

Saturday, October 1, 2011

Elijah at Mini-Laps - THE PHANTOM

It's that time of year again, and all our friends and family made this the most special Mini-Laps event so far. We met and exceeded our fund-raising goal, and the Little Light House raised the largest amount in school history for this event. Every year, the students of TLLH dress up in costumes and walk around a small track behind the school, as hundreds cheer them on and hear their stories. This year's theme was "The Big Apple," and we dressed Elijah up as The Phantom Of The Opera, one of the classic Broadway icons. We turned his walker into a pipe organ, and he really hammed it up. 

Watch as he takes his lap for the first time on his own two legs! This accomplishment is the culmination of years of work on the part of Eli's parents (that's me), his teachers and therapists both at school and at home, and most of all Elijah himself. His first year, you may recall, he was pulled around the track in a toy car made up to look like Lightning McQueen, and at the end he scooted over the finish line on his bottom. The next year, he went around in a wagon with some farm animals attached, then he actually walked about ten steps over the line in his walker. This took place ONE DAY after returning from the Shriners Hospital in Shreveport where he received his very first pair of prosthetic legs. There were tears that year, but he made it through with flying colors.

No tears in 2011, just willpower and an adoring crowd. You'll see him take a tumble before he makes the turn, but it's no surprise that he stood up again and kept going, eventually walking the entire track on his own. He loved seeing his mom and sister waiting for him, and he's looking forward to seeing YOU there next year!

BONUS VIDEO: The day before the event, we got a call from Linda, the PT at Eli's school, suggesting we make sure he could navigate in his blue Kid Walk, which he uses all the time at our house but never before at school. This was also my only chance to see him walk his lap, since I went to Boston on Saturday and had to miss the actual event (FROWN). I took Elijah and his nurse Melody to the school, and although he got tired a few times, he never gave up.

Sophia at Mini-Laps... SUPERSTAR!

Are you prepared to behold Sophia singing "The Star-Spangled Banner" at Mini-Laps 2011? NO YOU ARE NOT. It's simply too awesome. This 9-year-old diva-in-the-making worked for weeks and weeks on her phrasing, her breathing, her notes and her diction, and even I was speechless at the utter magnificence of the final result. If you missed it (like I did - I was in Boston!), be sure to come to Laps for Little Ones on Oct. 15 at Cascia Hall, another great opportunity to donate to Elijah's favorite school, The Little Light House.

Ramirez Kids In T-Town

Here are some pics of the kids at the new Route 66 park in west Tulsa. They have the biggest oil derrick (non-working) in North America, and a decommissioned train with the biggest wheels I've ever seen! The main engine barreled down the tracks toward Super-Sophia, but she was just too fast for it. Look at her go!


The gentleman who acted as our Make A Wish volunteer, Wade, is also the fire chief at Station 32 on 91st St. (near Hunter Park). He invited Elijah and Sophia to tour the facility, and they had a great time! Thanks to everyone for making our morning so special, and for your service to the City of Tulsa.


Eli absolutely loves to spend time at Therapy Works, on 91st Street near Memorial. We see Suzette on Wednesdays at 5:15 for occupational therapy, and on Friday we see Kara for speech pathology and Kathy for feeding therapy. All three of them are highly knowledgeable, exceptional with their applications, and very patient and kind with my little boy. When we tell him we're going to Therapy Works, he sings and laughs the whole way there. Watch as he works with Kara at blowing bubbles in a bowl, a very difficult task for a boy with a deviated septum, weak pallet and under-used jaw and tongue muscles. He's getting stronger every day! Before this video was taking, Elijah spent most of his time blowing bubbles with a soft rubber clip holding his nostrils closed, to make it easier to direct air through his lips. This also makes it easier to pronounce consonants like B and P, which he is ALSO successfully doing without the clip. We're amazed by his progress and grateful to Therapy Works!

Saturday, August 20, 2011

Elijah's Quest

Hello Team Eli!
Eli and David at Top of the Rock in NYC
The Ramirezes have had a very busy summer. First, we visited the Elk River with the McManus clan. Then, we went to Walt Disney World for five nights of action packed Mickey.  Then, we went to New York City primarily to visit David's parents and secondarily to visit the world's coolest city. We've had fun. I tell Sophia that we've made up for having to miss some summer vacations since Elijah's birth.

Elijah is learning more and enjoying his time at home. He starts public school for a few hours a day on Monday and back to the Little Light House on Wednesday. We're excited to get the routine rolling again.

A few weeks ago Eli had his 16th surgery. New tubes put in his ears and a scheduled adenoidectomy. But, the ENT discovered Eli didn't have much adenoid tissue so the adenoidectomy didn't happen. That led us on an adventure analyzing Elijah's immune system since the adenoids and tonsils are part of the lymph system, which feeds immunity. The infectious disease doc doesn't think Eli has an immunodeficiency, which is very, very good news.

My apologies for our long stints between posts. Honestly, since I started the new job that I love, I haven't posted as much. Those two things might not be related, but who knows.

We love you all and appreciate your prayers for Eli. Please pray for his ability to walk. For those of you tracking, you know it's been about a year that he has had prosthetic legs...he still isn't able to walk independently. He is making progress, but it is extremely slow. Keeping my positive attitude about it is being tested for sure. He deserves to be able to walk where an when he wants. I want that for him.

Love and gratitude,

Tuesday, August 9, 2011

Please support Mini-Laps!

Our dear friends,

Live from New York, it's Elijah Ramirez! He's ready for his big moment on the stage at the 2011 Mini-Laps! On Sept. 24, Elijah will walk around an oval track while hundreds cheer him on. This year's theme is "The Big Apple," so we'll probably dress the boy up as a big piece of fruit. Back by popular demand for his fourth year, Eli is eager to represent his big sis Sophia and his mother and me. We're his biggest fans, and we know you feel the same.

PLEASE HELP US support Elijah's fabulous school, The Little Light House, and all 64 students taking part in this year's Mini-Laps. The parents of these students (including the one writing this letter) take time during Mini-Laps each year to ask everyone we know to consider a financial contribution to The Little Light House, a private school for extraordinary children who need special care and attention.

The Little Light House is staffed with licensed therapists in all specialties and specially-trained teachers in each classroom. Eli is in the Pink Class where he learns with seven other extraordinary kids. The teachers and classroom associates are remarkable individuals who have such compassion and care for each child. The therapy Elijah receives is developed through strategy sessions involving all of the disciplines. Honestly, Eli couldn't receive a better education anywhere else.

When Eli joined the school at 18 months, he had trouble sitting up, speaking, even lifting objects. Today, he is one of the sharpest four-year-olds on the planet, able to count past 10, memorize lists, sings songs and write his own name. Every day at school he practices walking on prosthetic limbs, eating by mouth, reading books and much, much, MUCH more. Best of all, he loves going to school!

The Little Light House receives no government funding and no United Way support. The Little Light House is 100% supported through the generous financial gifts from caring individuals like you.

This year, they will invest $17,000 in our sweet Eli. Will you help us give back?

I know many deserving charities ask for your support, but this year, will you join us in supporting a Christian school specially designed for extraordinary kids? Kids who didn't ask to be extraordinary. Kids who need a little more attention, a little more help to reach their very best potential. Kids who will succeed thanks to The Little Light House.

With gratitude and love,

Melissa, David, Sophia and Elijah


Tuesday, June 14, 2011

The Ramirezes at Walt Disney

Friends, enjoy this video thank you to the generous people who sent our family, along with the Mitchells, to Walt Disney World. We had an amazing time.

Wednesday, June 1, 2011

Update On (virtually) Everything

I see that our last post to the blog was April 5! That's criminal of us, but the good news is, Elijah has been doing really GREAT. He's been attending two schools each week, along with six therapy appointments outside of school. Best of all, he spends almost every evening playing with the neighborhood kids. They come to see Sophia, and when they drag her to their houses, Eli asks if he can go play, too. Either I or his nurse brings him to the friend's yard. It's to Sophia's eternal credit that she goes out of her way to include Eli, and so do the other kids. It's all girls, except for a kid named Nathan up the hill. Recently, Elijah saw Nathan playing in a blow-up pool, and Eli asked to put on his swimsuit and get in the water, which we allowed him to do. A swimming pool is a great equalizer; Nathan had no problem at all finding things to do with Eli that were within his range of abilities. Even better, after they finished swimming, Nathan assumed that Eli should come inside and play, you know, like any other kid would do. They watched TV together, played with cars and trucks, and pretty much had an hour-long conversation. Nathan, you're awesome.


First thing's first: It's time once again for the talent show at Sophia's elementary school. This year, our star performer closed the show and all this implies. Also, she made the honor roll for her good grades, she received a citizenship award, and she BROKE the class record for most levels passed in the school's Geography study program. Behold our little wonder:


More videos, now with the boy. Elijah found himself too fascinated by "Star Wars" to look away, even though he clearly didn't care for the big guy in black. But he watched the whole thing with me, and I think he's a fan. Then he took a stab at filmmaking for himself. More importantly, just listen to Eli talk! He's one articulate little 4-year-old! Great observations, great questions, very intuitive conclusions. ("Are they on a spaceship?") We saw Dr. Hall, the ear-nose-throat guy, at his office today, and he noted how much clearer Elijah's speech has become since he was last seen. It's downright obvious that Eli is continuing to grow at an alarming rate.


We really need you guys to pray for a miracle in Elijah's life. First, there's some good news, in that we were accepted by the Make-A-Wish Foundation to do something amazing for our little guy, and we'll figure out what that might be in the coming months. In the meantime, I took some time to investigate all the particulars of Eli's genetic syndrome so I could make the case to Make-A-Wish for our qualification. As you may know, they only help kids who have a terminal illness or are at risk for one. I wouldn't call myself blaise about it, but it's definitely been years since I seriously worried Eli might be at risk for anything serious. For one thing, all the documentation on RECQL4 was contradictory on the suggestion that its sufferers might be at risk for cancer, and there was even some erroneous speculation that these patients had an increased risk of Down's Syndrome-type symptoms, which I've seen no evidence of anywhere.

All that to say, I looked at the most recent data, and I made a list of all the symptoms for the three main RECQL4 syndromes -- Baller-Gerald, Rothmon-Thomson, and RAPADILINO. For the record, the concensus these days is that there aren't three syndromes, but one syndrome with three variations, so that any single patient can have symptoms from any of the three classifications. Well, drumroll please. Elijah has EVERY SYMPTOM from all THREE syndromes, except for one -- osteosarcoma, or bone cancer.

It's obvious, then, why we set up an initial consultation with a pediatric oncologist. And this is what I learned: Among all recorded cases of RECQL4 mutation, 30 percent develop osteosarcoma before the age of 11. Among all victims of osteosarcoma at any age, the survival rate is 80 percent. That's the reality, and it really stinks. But here's the rest. We don't see any signs of tumors anywhere on Eli, and we're going to investigate further to rule out any possibility whatsoever. Also, the key to stopping and curing this cancer is early detection, and that's great news for us.

We just need one more thing, and that's your prayers. Pray that osteosarcoma never, ever, EVER be a concern for our little warrior, Elijah. We claim the victory in advance.

More posts to come.


Tuesday, April 5, 2011

A Day In The Life

The following events took place on Tuesday, April 05, 2011. No animals were harmed during the filming of this motion picture.

3:45 a.m.
Elijah wakes up crying. I, his father, hear him on the Appliance Formerly Known As Baby Monitor. We burp through the feeding tube to get rid of the painful gas, get a new diaper, then rock back to sleep. Dad is back in bed by 4:30.

7:00 a.m.
All four Ramiri wake up. Dad makes two bottles of formula, one for now and one for at School No. 1, AKA The Little Light House. Elijah gets dressed, watches the Max Fleischer "Superman" cartoons from the 1930's, gets his prosthetic legs put on, and goes to Mom's car.

10:00 a.m.
Dad would love to go to stay asleep, but he has to go downtown and see if an event program is finished printing. It isn't. 11:30 a.m. Pick Elijah up from The Little Light House and go to Saint Francis Children's Hospital. (Elijah starts crying, until I tell him, "We aren't going to see the doctors. We're going to a party!") There's a banquet being held for donors to the Oklahoma Family Network. The News On 6 (CBS) is there, filming all the kids in a row, wearing matching OFN T-shirts. Most of the kids are a bit camera-shy, but when the anchor gets to Elijah and asks his name, Eli spots the videocamera and shoves his face into the lens. "CHEESE! CHEESE! CHEEEEEEESE!" Everyone laughs hysterically. The anchor asks, "Do you like the camera?" Eli answers, "Yes I do! What's your name?" Twenty minutes later, it's time for Elijah and the other kids to serve cupcakes to the banquet attendees. Meanwhile, the emcee for the event reads a paragraph to the crowd about Elijah's condition, struggle and current triumph. Eli waves to the crowd and says hello. Everyone laughs hysterically. He gets his picture taken with the current Miss Oklahoma, as well as Volt, the fox-themed mascot for the Tulsa Shock. His highlight of the day is when he goes down the long, long tunnel to the parking garage. Elijah loves tunnels.

1:30 p.m.
Pick up Elijah's home health nurse, Jodi, at the Ramirez home. Fill the gas with car.

1:50 p.m.
Drop Elijah and Jodi off at School No. 2, AKA Washington Elementary in Sapulpa. He receives occupational therapy (focusing on adaptive technology in the classroom) with Ms. Julia. Meanwhile, I go to Ace and pick up repair parts for an electrical problem at the house, all the while speaking on my cellphone with the authorization coordinator at Therapy Works, where Elijah attends each week for five hours (on every weekday except today). The call is interrupted by our case worker at the Oklahoma Health Care Authority, who has questions about our Therapy Works situation. Everyone's a bit psychic today.

3:00 p.m.
I take Elijah home, cut his hair with the no. 3 guard, trim his neck and sideburns, then give him to Jodi for a bath. He must finish the bath by 3:30 so he can meet with Miss Amanda, our home-visit physical therapist (focusing on mobility and strength training with the prosthetic limbs). Meanwhile, I go to School No. 3, AKA Freedom Elementary in Sapulpa. I meet with Elijah's soon-to-be classroom teacher Miss Kim, who is also Eli's speech pathologist. Eli receives three sessions of state-funded therapy during school hours, and we might be attending Freedom four days a week, starting as soon as next week, if all the Medicaid contracts land correctly. Elijah's sister, Sophia, attends Freedom, and I grab her and take her home at 3:50.

4:30 p.m.
Elijah is just finishing his third formula bottle of the day, at the same time he's wrapping up his physical therapy. Seriously, he's standing in a walker taking step after step, while Jodi follows along, syringe in hand allowing gravity to pour his formula into his tummy through the feeding tube. Sophia rushes to have a snack and gather her piano books and dance uniform (tights and shoes). For reasons you'll soon see, I must gather up Elijah and Jodi and take them with us to Sophia's voice and piano lesson. (Normally, Eli would stay at home with the nurse.) We arrive at Miss Missy's home for lessons; Sophia receives instruction in the living room, while Elijah watches cartoons and receives his fourth bottle of food in Missy's den. He also changes out of his sporty tank top and puts on a collared shirt. We finish strong by watching Sophia perform the singing and choreography for her next big recital piece. Elijah claps the loudest for his sister.

6:15 p.m.
We drive two blocks to Hardesty Library where the Vet Sette (a Tulsa club for Corvette owners) is presenting a check to The Little Light House for over $6,000. Elijah and one of his classmates is on-hand to receive the check. They ask me to say a few words, and I stand in front of about 300 people and introduce Eli. While I'm trying to speak, Eli (in my arms) keeps waving and saying "Hi! Hi! Hi!" He blows kisses and blows hugs. I tell the crowd, "When Elijah first started attending the Little Light House, he couldn't sit up, couldn't speak, could barely smile. With therapy and classroom instruction, they helped turn him into the attention hound you see today." Everyone laughs hysterically.

7:00 p.m.
We drop off Sophia (who has changed clothes in the moving car) at dance rehearsal. Elijah asks, "Where is Sophia going?" For the very first time since he woke up at 7:00 a.m., Eli is sad. He's hit a wall, and so have we. "I want to go home and rest," he tells us, holding back tears. We arrive at home. Despite being super tired, he fights off sleep and watches some more cartoons. He's earned a little TV time, says his paternal guardian.

9:00 p.m.
Elijah lays down in bed with Mom and Sophia. Everyone's laughing and playing, and then, as soon as the lights go out, the boy is out like a birthday candle. His dad carries him to his crib, where Jodi the Nurse finishes his fifth bottle of the day. This reinsertion of the tube usually bothers him to some degree, or at least causes him to fuss, but he's so tired he doesn't even wake up during it. We turn off the lights in his room, and turn on the inappropriately named Baby Monitor. Soon after, Jodi leaves for the night, ready to return tomorrow at 2:00 p.m. so we can get ready for his 2:45 therapy appointment (focusing on forearm/digit extension and strength).

10:30 p.m.
Elijah wants his pacifier, which has fallen out of his mouth and gone missing in the dark. I've been asleep for about an hour, and the power-nap is enough to keep me awake. I talk to my brother, get some design work done on the computer, change another diaper for Eli, and type this post for you people, whoever you are.

1:00 a.m., the next day
We're done. ..... For now.

So how was your day? As busy as Elijah's? How about when you were four? Hopefully you now have a better idea of how much harder, and at the same time more awesome, Elijah has it than his peers. For better and worse, and nowhere in-between, Elijah is now a full-time superhero. Pray for Eli!


Friday, April 1, 2011

The Postman Always Walks Twice

Special delivery!

Wednesday, March 30, 2011

Tears of Joy, part 62

Gene Siskel said that the best way to criticize a bad movie is to make a better movie. Thus do we overcome the crushing sadness of the recent altercation (see previous post, or better yet, skip it) by moving on to the kind of inspiring moment we've come to expect from our little hard-working superhero. Today Elijah went to occupational therapy and had a lot of fun playing with toys and jumping and flipping and stuff. I had to step out to make a phone call, and when I came back, our new friend Suzette said she had something to show me. I assumed she had some kind of exercise she wanted me to do with Elijah at home, so I took it in stride. I sat down and watched as he picked up a ball, aimed it quite carefully, and threw it at three "dinosaur bowling pins," knocking them all down with impressive accuracy. We clapped and cheered. But that's not what Suzette wanted to show me. Elijah crawled up a set of benches into his own chair (an impressive feat on its own) and sat at the table. Then Ms. Suzette helped him prepare to show me something new. When I saw him start to do this, tears sprung to my eyes. I'm weepy watching it again right now. PREPARE TO BE AMAZED...

That's right. Elijah is now capable of holding a regular-sized marker and drawing on a piece of paper with it. This has been THE goal of our OT time for the past two years. He won't be able to truly keep up in the public school classroom until he is able to manipulate writing utensils at his desk. And now, that day has arrived. It's one thing to have faith that what you pray for will come to pass, but there's something miraculous about witnessing it first-hand. I saw a miracle today.

By the way, Melissa hasn't seen this video yet, so don't tell her. She's getting a phone call from me right now.


Tuesday, March 22, 2011

I'm not a monster

We went to a park last night...all four of us. Two other 4-year-old children at the park immediately became interested in Eli. They squated in front of him staring. Eli said "I am four and this is my mom (waving to me). My name is Eli." Eli was the only polite one of the bunch. They just watched him.

One asked me, "Where are his feet?" I said, "We left them at home." I heard one comment to another later, "He has three fingers and one thumb." A bit later, one said "He looks like a monster with those feet." My sweet Eli said to no one in particular, "I'm not a monster." David corrected the kid telling him that was unkind to say and he should never say that about another person.

I knew Eli's spirit was untouched by the incident.

I was mad at the kid, but heart broken that Eli heard the declaration. Sophia missed the exchange, but later caught on that some kids were treating her brother unkindly. She is very protective. Love her.

Today, Eli doesn't know he's any different from anyone else. I'm basking in that.

Love you all,

Thursday, March 10, 2011

Sophia Sings, Sets The Gold Standard

VIDEOS TONIGHT of Sophia's very first piano and voice recital. You have GOT to see the performance that all of Tulsa will be talking about for the next month-and-a-half. Prepare yourself for "The Glory of Love," which is the rendition the kid sings in the movie "Beaches." Our darling girl makes the song her very own, and the crowd actually gasped with delight at how she nailed it.

And here's her piano recital. She's only been playing the piano for about eight weeks, so we're all super-proud of her for playing "Twinkle Twinkle Little Star" flawlessly and by memory in front of this big audience. She was the least experienced pianist in the show, so she played first. And since she was the MOST experienced vocalist (even performing next to teenagers), she also closed the show. We're just absolutely bursting with pride tonight.

BONUS VIDEO: I know you're asking, "So when does Elijah start singing professionally?" It won't be long now, and here's the proof. He accompanied us to Sophia's voice lesson this week, and he couldn't wait to take the microphone.

Many of you wonder, though few have asked, How does Sophia deal with her brother always getting the spotlight? Honestly, her mother and I worry about that as well, but on nights like these, it's clear there's nothing to worry about. Not only is Sophia making her own mark in the world, but she's always comfortable -- nay, looking forward to -- sharing the spotlight with her best friend Eli. And if you saw how attentively Elijah listened during his sister's performances tonight, you'd know he considers her an important part of his life as well.

So Proud!!!

Monday, February 28, 2011

That's okay, Daddy

If you have a four-year-old, you know what a terror the Well Child Checkup is at the four-year mark. Elijah had three vaccination shots in his legs, then they drew blood to test for lead (I mean, as if).

Meanwhile, Elijah has been in all kinds of other discomfort this week. He's losing weight because we're experimenting with his formula, trying to find something with more calories but still tolerable to his little tummy. He may or may not have strep throat (if not, then he definitely has something), and his sleep schedule is off again. So when I tell you we jabbed him with needles today, you can understand why I just wanted to scream. Instead, I cried a little.

I caressed his little head and kissed his cheeks as I held him down and watched them vaccinate him. Then, when Eli thought we were done for the day and going home, I took the elevator up, not down, to the phlebotomy lab. They couldn't find his veins in his arms, because they've never been able to, so they sliced his fingertip open with a razor and literally squeezed the required number of drops out of him. Once again, I held him tightly to my chest even as I forcably held his arm out for the technician to assault. I realized that, although I intended to whisper to Elijah, "It's okay, Daddy's here," I was actually unable to speak.

After they had enough blood, the tech put a little band-aid on Elijah's finger. With tears still streaming down his face, he perked up and said, "Oooh, I like a band-aid!" Then he looked straight at the guy and said, "Thank you for my band-aid!" Well, that did it. I just broke down in tears. The tech didn't know what to do with a grown man crying, so he just left the room without a word. Then I did the same.

In the car, Elijah said, "I'm tired, Dad." I asked if he wanted to go home, and he said, "Can we go home and sleep? I want my blue blanket." To this I responded, "Elijah, I'm sorry you got hurt back in that office." Before I could explain further, he answered in his very most chipper voice, "That's okay, Daddy." Then he sort of slumped down into his seat and said, "I still tired, Daddy."

I saw a documentary recently about how sand falling through an hourglass builds up in a cone at the bottom of the glass, until the cone collapses and it all fills up at the bottom, only to have the cone build up again. The documentary says the scientists found there's always a faultline that reaches from the center of the cone interior to the base of the cone exterior--or any sand structure, really--and although the sand is pouring through rapidly, the cone stands intact until one grain, EXACTLY one grain of sand strikes that faultline in EXACTLY the wrong spot. Out of all those grains falling together in a pouring flow, only one of the grains is responsible for the collapse.

So yeah, my sand castle shattered this morning, but the good news is, Elijah kept on going, and right away he started building the cone back up. When I tell you I don't know how he does it, I mean that literally. Even I'm amazed at what he's able to withstand, let alone accomplish, and I'm the one who's standing there every day watching him do it.

Pray for Elijah this afternoon, if you think about it. And don't forget to pray for my friend Lee Ann, whose father passed away very unexpectedly and rather quickly, just a few months before her wedding. We're simply heartbroken for her.


Sunday, February 20, 2011

Here's your Eli fix

Eli walking (physical therapist is hiding behind him).

Eli and Sophia washing mommy's car.

Thursday, February 10, 2011

Eli's Greatest Hits

Elijah's Video Time Presents: Another action-packed episode of... "Eli At Play"

This week's episode: Elijah plays with a train, builds a track and a tunnel, COUNTS TO FOUR, says please and thank you, then eschews politeness and demands more blocks, figures something out, has an idea, and finally, gets excited when a friend calls. "It's all very uplifting." - Owen Liebermann, Entertainment Weekly

Thursday, February 3, 2011

Snow is Scary - Eli is Awesome

The Four Ramiri have been trapped at home since Monday night, and we're pretty okay with that. Sophia has been in snow drifts up to her neck (literally!) since the temperature rose above 14. Meanwhile, Elijah has been intimidated by the sight of all that strange white stuff outside, as any sane person would be. He has definitely made the best of the situation, eating and playing and watching shows. His favorite thing to do now is watch a Thomas clip loaded on YouTube, then pick from the four clips that show up which one he wants to watch next. He's pretty bright, this one.

We're praying for all of you! Stay safe, and stay home!

P.S. I don't have any videos right now. Why don't you send us some of yours, huh? Huh?

Monday, January 17, 2011

Eli stands

I love this shot of Elijah STANDING.

That's nurse Courtney watching over.

Love you all,

Tuesday, January 11, 2011

New Shoes!!

Today was a great day in the journey of Elijah Ramirez. He received new prosthetic legs. We call them shoes...since everyone wears shoes. They are innovative and creative. Eli's new prosthetist from OKC is our hero. Check these out.

Soon, you will see Eli walking.

Here's a note from Eli himself:

We love you all,