Eli's Journey

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! CHRISTMAS TIME AT DISNEY WORLD 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 c...

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 melramirez22@yahoo.com with your addy and expect your invite soon. Melissa

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 ...

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 e...

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. GO SOPHIA!!!!!

ROUTE 66 PARK: 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! OUR FRIENDS AT FIRE STATION 32: 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. ELIJAH AT THERAPY WORKS: 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 appli...

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...

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 special...

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.

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 shoul...

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'r...

Special delivery!

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...

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 protecti...

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 b...

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 ...

Eli walking (physical therapist is hiding behind him). Eli and Sophia washing mommy's car.

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

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

I love this shot of Elijah STANDING. That's nurse Courtney watching over. Love you all, Melissa

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: 5ygggr,,4,5r,5,l4,e,r,rr,,,,,,,,,r,rw,r,,, We love you all, Melissa