Eli's Journey

Enjoy a Laugh

2012-01-17T18:48:00.000-06:00

This evening I had to take Elijah's latest prescription to a new pharmacy because our "usual" was out of the drug we needed. The cashier putting the prescription in their system and setting Eli up as a new patient asked me "is he allergic to any drugs or have any medical concerns?" I looked at her and thought for a moment. Do I dive into my son's medical concerns? I replied "no" with a smile like I was really getting away with something. It has had me giggling all night.

I also picked up some hearing aid batteries. For those of you who are long time Eli Journey Members, you know that when he was teeny tiny, he had a bone conduction hearing aid. That's the type that just sits on your head with a strap. It literally sounds like a microphone in your head (I've tried it). David thought we should try it again because of how often Eli says a very genuine "what?" in our conversations. I put a new battery in the five year old device and it came to life (thank you Lord). I placed it on Elijah's head and started talking to him in a subdued voice and the child smiled from EAR TO EAR. He asked if he could keep it on and if he could take it to school. Maybe David is on to something. We'll see.

A dear friend of mine, at the young age of 55, died last week after finding out she had cancer only days before. I will miss her posts on this blog and her encouraging phone calls to me. mhh you will be missed.

Love you all,
Melissa

P.S. Aren't David's videos amazing. I watch them over and over so impressed with his abilities. :)

Videos from Disney World (part 3)

2012-01-15T18:30:00.002-06:00

And here's the last movie! Hope you enjoyed them.
Dave

Videos From Disney World (part 2)

2012-01-14T21:06:00.003-06:00

The continuing saga of our Christmas/Birthday trip to Florida in Dec. 2011:

Part 3 of the Disney Trilogy to follow!

Videos from Disney World!

2012-01-14T17:31:00.003-06:00

Because you demanded it! Enjoy!

Stay tuned for Part II...

Eli's BIG Birthday Party

2012-01-02T20:48:00.000-06:00

If you read this blog, we invited you to join us in celebration of Elijah's 5th birthday. The party was Saturday and more than 80 of you joined us to wish Eli the most special birthday wishes ever. Thank you to those of you who took your time to attend...it means a lot to us. To those of you who couldn't make it, we know you were here in spirit and heart.

I rarely think about the night Eli was born. That night and the days that followed are not pleasant memories for me. In fact, I cannot think of much during that time to make me smile. Yes, I was introduced in a profound way to the kindness of friends, family and strangers, but the uncertainty around Elijah overshadowed everything during that time.

I wanted to celebrate Eli's fifth birthday to overshadow the holiday of 2006. For now on, I'm going to remember the look on Eli's face as 80 people sang a hearty Happy Birthday to him. He loved every minute of it.

One of Eli's gifts, a new Clifford

Eli ready to open presents!

Eli and Grammie Ayers

Blowing out candle (with a little help)

Basking in the song

Eli and Ms. Brooke from the Little Light House

Did you notice in these photos how Sophia is always right at Eli's side making sure he has what he needs. She is his biggest fan and the best big sister anyone ever could have.

Thank you everyone!
Melissa

P.S. Eli starts full-time public school tomorrow at Holmes Park. Pray for him as he makes this transition from the safe place that is the Little Light House to a little more unknown situation. He is ready. Holmes Park is ready. Am I ready? :)

Disney Pics

2012-01-02T15:55:00.000-06:00

Random Disney World memories

2011-12-23T10:56:00.002-06:00

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 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!

ELI ON THE MOVE

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.

BIG SISTER TO THE RESCUE

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.

“HANDICAPPED”

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.

EVERYBODY LOVES ELIJAH

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.

LATE TO BED, EARLY TO RISE

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.

OLD ENOUGH TO LOVE IT

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!!!

SEE YOU REAL SOON

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 davidramirez01@yahoo.com for more details on that. Merry Christmas!

Eli is almost FIVE!

2011-11-25T09:24:00.000-06:00

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

Eli on KRMG... Prepare For The Cute

2011-11-17T19:21:00.002-06:00

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:

http://www.krmg.com/maw/index/

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!

Elijah at Mini-Laps - THE PHANTOM

2011-10-01T22:32:00.000-05:00

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!

2011-10-01T21:29:00.000-05:00

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!!!!!

Ramirez Kids In T-Town

2011-10-01T21:28:00.000-05:00

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 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!

Elijah's Quest

2011-08-20T16:48:00.000-05:00

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,
Melissa

Please support Mini-Laps!

2011-08-09T13:07:00.003-05:00

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

CLICK HERE TO VISIT OUR MINI-LAPS PAGE: https://sna.etapestry.com/fundraiser/TheLittleLighthouse/minilaps2011/individual.do?participationRef=468.0.4895783

The Ramirezes at Walt Disney

2011-06-14T20:59:00.000-05:00

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.

Update On (virtually) Everything

2011-06-01T22:01:00.004-05:00

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.

SOPHIA'S TALENT SHOW

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:

ELIJAH DOESN'T LIKE VADER

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.

PRAY FOR ELI - ONCOLOGY UPDATE

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.

A Day In The Life

2011-04-05T21:23:00.004-05:00

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!

Dad

The Postman Always Walks Twice

2011-04-01T15:28:00.001-05:00

Special delivery!

Tears of Joy, part 62

2011-03-30T16:15:00.003-05:00

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.

Dave

I'm not a monster

2011-03-22T17:11:00.000-05:00

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,
Melissa

Sophia Sings, Sets The Gold Standard

2011-03-10T23:48:00.003-06:00

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!!!
Dad

That's okay, Daddy

2011-02-28T13:43:00.003-06:00

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.

Dave

Here's your Eli fix

2011-02-20T16:25:00.000-06:00

Eli walking (physical therapist is hiding behind him).

Eli and Sophia washing mommy's car.

Eli's Greatest Hits

2011-02-10T18:33:00.002-06:00

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

Snow is Scary - Eli is Awesome

2011-02-03T21:36:00.002-06:00

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?

Eli stands

2011-01-17T14:59:00.000-06:00

I love this shot of Elijah STANDING.

That's nurse Courtney watching over.

Love you all,
Melissa

New Shoes!!

2011-01-11T18:56:00.000-06:00

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

Videos

2010-12-11T14:41:00.004-06:00

1. CHEERIO!

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.

2. FUN WITH RANDI

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.

3. IMAGINATION

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.

Videos

2010-12-11T14:41:00.001-06:00

"How Is Eli?"

2010-12-07T01:24:00.003-06:00

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!

Sophia Vids!

2010-11-20T16:23:00.002-06:00

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)

2010-11-20T16:22:00.008-06:00

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!

2010-11-20T13:32:00.006-06:00

BECAUSE YOU DEMANDED IT...

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 (http://www.toddmacdonaldmusic.com/) 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.

Coming Along

2010-11-08T19:15:00.001-06:00

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!

Love,
Melissa

How's the walking?

2010-10-17T10:01:00.003-05:00

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,

Melissa

Eli Meets the Mouse

2010-10-05T17:22:00.000-05:00

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!

Love,
Melissa

Midnight in Elijahville

2010-10-02T23:47:00.002-05:00

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.
Dave

DAY SIX: Victory at Mini-Laps

2010-09-25T14:55:00.003-05:00

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

"Where's Granna?"

2010-09-24T22:03:00.002-05:00

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.

Dave

DAY FIVE: Home Sweet Home

2010-09-24T19:48:00.008-05:00

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.

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

2010-09-23T18:14:00.009-05:00

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!

Dad

DAY FOUR: Going The Distance

2010-09-23T11:55:00.003-05:00

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.

Dad

DAY THREE: Eli's Power Workout

2010-09-22T17:53:00.013-05:00

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!

Dad

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: http://littlelighthouse.donordepot.com/civicrm/contribute/pcp/info?reset=1&id=52

DAY TWO: First Steps

2010-09-21T17:11:00.002-05:00

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.

Dad

DAY ONE: Meet the Feet

2010-09-20T18:14:00.004-05:00

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.

ELI WEEK IS COMING

2010-09-19T00:18:00.009-05:00

IN THIS POST:
= 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: http://littlelighthouse.donordepot.com/civicrm/contribute/pcp/info?reset=1&id=52

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.

NEW PICTURES:

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 (http://images.pictureshunt.com/pics/c/charlie_brown_cartoon-5355.jpg) and the cherubs at the bottom of Raphael's Sistine Madonna painting (http://en.wikipedia.org/wiki/Sistine_Madonna). 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.

My New Legs

2010-09-11T08:11:00.000-05:00

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 this...my 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. http://littlelighthouse.donordepot.com/civicrm/contribute/pcp/info?reset=1&id=52.

Eli will walk!

With love,
Melissa

Eli playing

2010-09-02T18:33:00.000-05:00

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

The splint game

2010-08-29T13:42:00.001-05:00

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,
Melissa

"Don't Hurt Me, Daddy"

2010-08-25T23:05:00.008-05:00

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: http://littlelighthouse.donordepot.com/civicrm/contribute/pcp/info?reset=1&id=52

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!

David

Eli's new legs

2010-08-18T18:16:00.000-05:00

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,
Melissa

Legs revealed

2010-08-15T18:03:00.000-05:00

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,
Melissa

Sophia, The Older

2010-08-10T21:08:00.000-05:00

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.

"How Is Elijah Doing?" You Ask

2010-08-02T20:16:00.003-05:00

From the desk of David:

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

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

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

Please continue to pray for Eli!

--- The Dad

Elijah Plays with Cars

2010-07-31T08:31:00.000-05:00

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

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

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

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

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

Melissa

Elijah receives Hero status!

2010-07-25T08:35:00.000-05:00

Friends,

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

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

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

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

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

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

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

We had already forgotten.

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

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

Home

2010-07-24T07:14:00.000-05:00

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

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

love you all,
Melissa

Difficult Day

2010-07-22T20:33:00.000-05:00

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

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

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

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

Love,
Melissa

Triumphant

2010-07-21T20:25:00.004-05:00

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

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

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

Dad

Eli's resting

2010-07-21T16:34:00.000-05:00

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

Love all,
Melissa

Surgery Complete

2010-07-21T09:55:00.000-05:00

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

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

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

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

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

Love all,
Melissa

Surgery in progress

2010-07-21T08:19:00.000-05:00

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

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

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

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

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

I love you all.

More to come.

Melissa

Checked in

2010-07-20T09:47:00.000-05:00

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

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

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

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

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

More soon.
Melissa

Eli In The Sink; Surgery Next Week

2010-07-16T17:26:00.007-05:00

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

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

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

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

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

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

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

Encouraged

2010-07-13T21:22:00.000-05:00

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

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

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

Love you all,
Melissa

Pass the salt, if you must.

2010-07-10T16:00:00.000-05:00

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

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

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

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

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

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

With love and gratitude,
Melissa

Super Cute Late-Nite Plea

2010-07-03T20:59:00.002-05:00

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

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

An Eli conversation

2010-06-29T18:49:00.001-05:00

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

Great day!
Melissa

Sick

2010-06-19T09:21:00.000-05:00

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

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

I love you all,
Melissa

Circle Feet

2010-06-14T19:20:00.000-05:00

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

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

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

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

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

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

Thank you for praying.

I love you all!
Melissa

Elijah Swims!

2010-06-05T00:37:00.003-05:00

No words. Just... magnificent.

16 Steps To Victory

2010-06-01T23:27:00.003-05:00

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

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

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

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

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

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

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

Trucking along

2010-05-29T09:02:00.000-05:00

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

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

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

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

Love,
Melissa

Defeated

2010-05-21T17:58:00.000-05:00

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

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

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

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

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

With love,
Melissa

Sophia's Talent Show! (2nd Year)

2010-05-20T14:29:00.002-05:00

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

(Insert "American Idol" comment here)

No News is Good News

2010-05-15T11:56:00.000-05:00

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

Love you all,
Melissa

New job

2010-05-04T20:15:00.000-05:00

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

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

Love you all,
Melissa

Sophia wins grandest hat

2010-04-24T20:02:00.000-05:00

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

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

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

Love you all,
Melissa

The Newest Ramirez

2010-04-17T16:47:00.005-05:00

Friends,

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

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

Such a cute dog (think teddy bear, folks)...and adorable girl.

Elijah on Easter.

Eli, Sophia and Charlie on Easter.

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

Love you all,
Melissa

New Thumb II - The Sequel

2010-03-23T22:23:00.006-05:00

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

And now for something completely different...

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

Signed, Dad

Eli is Houdini

2010-03-20T09:10:00.001-05:00

David and Eli arrived safely home about 4 p.m. on Tuesday. I met the two of them at the QT down the road for drop off from the Shriner's van after a 6 hour trip. I saw Eli and commented "that cast isn't going to stay on." Little did I know that he'd have it off by 6 p.m. (Houdini has nothing on Eli) and we'd be on the phone to Shreveport figuring out what had to be done. By 9 p.m., we were back in the car headed to Shreveport...we stopped in Paris, Texas at midnight to sleep and then finished the remaining 3 hour drive the next morning...had a new cast applied and headed home making it about 9 p.m. Miserable for all of us, but especially Eli. The new cast, designed solely to keep his new thumb immovable for about 5 more weeks, will not be coming off!

Tubes in ears surgery moved to April 5. That one is in Tulsa.
Back to Shreveport April 19 for cast removal and thumb check on April 20.
We get May off.
To OKC on June 19 for a cleft palate clinic where they will determine if he needs anything else done in his mouth.
To Shreveport on July 19 to prepare for leg straightening surgery on July 21.

Nothing scheduled after that. Ya Hoo! We know we'll have follow up in Shreveport 4-6 weeks after July 21 surgery and then we'll have to return for prosthetics and prosthetics checks and prosthetics adjustments, etc. Clearly, we should find a prosthetic person in Tulsa to work with us too. Shouldn't be a problem.

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

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

Love you all,
Melissa

To Shreveport...again

2010-03-14T14:55:00.000-05:00

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

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

Love you all,
Melissa

Eli's first visit to the CIRCUS

2010-03-06T15:23:00.001-06:00

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

And, today, we enjoyed the nice temperatures. Eli has grown to LOVE his outside swing.

As you can see, this arm-in-a-cast thing is hardly even a bother to Eli. He just lugs it around like a normal thing. Of course, Clifford was along for the swing.

Love you all,
Melissa

Eli eating gravy

2010-03-05T19:36:00.001-06:00

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

Love you all,

Melissa

Pollicization

2010-03-04T08:20:00.000-06:00

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

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

During pollicization the index finger metacarpal bone is cut and the finger is rotated approximately 120 to 160 degrees and replaced at the base of the hand at the usual position of the thumb. The arteries and veins are left attached.. If the thumb is congenitally absent other tendons from the migrated index finger may be shortened and rerouted to provide good movement.
--------------------------------

The surgeon said this is a very difficult procedure, but one with a lot of satisfaction. We are expecting greater functionality from his new THUMB!

I'm amazed at how EVERY employee at this wonderful hospital has high spirits. No one wakes up on the wrong side of the bed or brings personal baggage that impacts their attitude. I'm amazed at how they not only treat us (and especially Eli) with extreme respect and compassion, but also each other. This is a great place to be (if you have to be here that is).

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

Hopefully we will go home today.

Love you all,
Melissa

In Surgery

2010-03-03T09:11:00.000-06:00

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

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

Love you all,
Melissa

Checked In

2010-03-02T11:22:00.000-06:00

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

Thanks for your prayers.

Love,
Melissa

Ready for Check In

2010-03-01T19:54:00.000-06:00

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

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

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

Love you all,
Melissa

Winter, you are dismissed

2010-02-24T18:11:00.000-06:00

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

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

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

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

My brother and his precious Somer are expecting a baby...any day now...pray for baby Sawyer...no surprises...boring entry into this wonderful world...that prayer has far more meaning to me since Eli's radical entrance.

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

Love you all,
Melissa

This Year's Tasty Valentine

2010-02-14T14:47:00.000-06:00

Every year, David makes my valentine. This year, it is an edible bouquet made of fruit especially for Sophia and me. He melted chocolate too, which Eli even enjoyed.

I cannot be sure if any of the chocolate actually made it to Eli's taste buds, but he enjoyed the smearing on his face. We had a ball.

Thanks, Valentine, for the wonderful treat.

Love,
Melissa

Photos of the kiddos

2010-02-14T11:22:00.001-06:00

Sophia is going to see Sleeping Beauty Ballet today with her Girl Scout Troop. Isn't she SO cute! Yes, there is another dusting of snow on the ground today, but that never factors into Sophia's selection of clothing...we did decide on boots, which kind of match the outside conditions.

Eli's using his walker to "walk, walk."

Love you all,

Melissa

Eli can wink

2010-02-10T18:05:00.000-06:00

I'm sure you all enjoyed David's video as much as I did (see below). Can you beleive that wink? Since then, when we ask Eli to close one eye and someone who can wink shows him, he can do it. That won't be me, I CAN'T WINK. When Sophia was a tiny tot she winked by switching back and forth between winking each eye about 10 times. I was shocked. Looks like Eli has the RAMIREZ winking gift.

We are in pursuit of Elijah's recertification for his medicaid coverage. We have to go through some paperwork every year to keep him covered. This year, we are required to get him a psychological evaluation including an IQ test. Eli is so smart, but we're hoping he won't show his best skills during this particular evaluation. (wink, wink)

Eli slept better last night. We take it one night at a time and are hoping for more of the same tonight. Go Eli!

Grandma Edna (my mom's mom) is in the hospital again. This time she was visiting Dallas when she was admitted to a hospital there. She is in bad shape after a staph infection in that fluid around her lungs. Keep her in your prayers.

Love you all,
Melissa

Super Cute Late Night Eli

2010-02-04T04:42:00.005-06:00

Eli just happened to be up late -- AGAIN -- and he wanted to say hello to you. This video includes a closer look at Elijah's feet post-op, as well as some philosophical thoughts from Dad and a few entertaining moments from the boy, including a ridiculously cute surprise at the end.

ADDITIONAL CUTENESS:

And now a classic from the Elijah Video Blog playlist... Eli and his Granna during the Christmas vacation playing in the evening on the living room floor. Those family members out there who know Anna best will appreciate her selection of hand puppet.

Drum roll, please...

2010-02-01T19:23:00.002-06:00

Presenting the most beautiful legs in the world!

Eli is much more comfortable without the splints. Will he sleep? That is the question yet to be answered.

Love you all,
Melissa

In Shreveport

2010-01-31T17:15:00.000-06:00

David and Eli are in Shreveport this evening. I'm sure hanging out at the hotel trying to get sleep. Sleep has become a strange thing for Eli. He sleeps when he is at the end of his very long rope, but restlessly and for short stints. I am hoping the removal of his leg splints will help him regain his confidance and comfort.

Please pray for David and Eli. None of us have seen Eli's new legs. David will be the first. It will be dramatic, I am certain. I know we have a whole host of angels who are with us at all times. David's angels will be on overtime tomorrow. Pray that Eli will experience minimal pain as the splints are removed. We are told it will hurt. Why does everything have to hurt?

We will post pics tomorrow evening after they return home.

I love you all.
Melissa

To Shreveport We Go

2010-01-31T09:33:00.002-06:00

Eli and David are on their way to Shreveport on the Shriner's Van with a volunteer driver. What a lifesaver! They left out this morning from the house at 7:15 to meet the driver at 8 a.m. Eli's appointment is in the morning at 8 a.m.

Please pray for safe travel, headache relief for David, restful travel for Elijah and overwhelming peace as Eli's new legs are revealed tomorrow.

Love you all,
Melissa

To Shreveport We Go...Hopefully

2010-01-30T10:14:00.000-06:00

Today, we are snowed in. Tomorrow is the day that David and Eli are supposed to ride the van to Shreveport. I feel like we need to get the splints off of Eljah's legs. He still isn't sleeping well, which means David isn't sleeping well. It's really tough on all of us, but especially Elijah. I'm not sure if the Shriner van will be cancelled or delayed due to the roads. Pray we get to go as planned without any problems.

We've certainly had more than our fair share of snow and ice this winter in Oklahoma.

Love you all,
Melissa

Sleep, Eli, Sleep

2010-01-24T08:51:00.000-06:00

Eli is anxious. He cannot rest comfortably and has been keeping his dad up long hours every night. I am certain he knows what has happened and he's none too excited to let something like that happen again. Eli and David go to Shreveport a week from today for a Feb. 1 appointment to have his splints removed, sutures removed and new legs revealed. I hope after that Eli can start to feel like himself even more.

I saw the movie Extraordinary Measures yesterday. It's about two kids with Pompe MD and their amazing parents who work tirelessly to find a cure and succeed. The movie showed some of the hardship, but not all. I'll reflect on it later. I recommend the movie.

Love you all,
Melissa

2010-01-18T18:31:00.000-06:00

Eli Scoots

2010-01-18T10:01:00.000-06:00

Yesterday, Eli wanted to get where Sophia was. I told him to scoot to her. He did. He is MUCH slower than his former scoot, but he was able to go. He was proud of himself.

He still cannot go from sitting to laying or vice versa, but mainly because his legs are too big around from the bandages and wrap for him to sneak them from in front of him to behind. That's a bummer, but he just might get it to happen before he's relieved of the bandages and wrap on Feb. 1.

Eli will return to the Little Light House tomorrow. This will be his first day since before Christmas. He's been gone a long time and gotten really used to having mom or dad around, so I'm sure there will be an adjustment in the morning. I have no doubt he will get right back into the swing of things though.

We go to the ENT this afternoon.

Tomorrow is my sweet husband's birthday.36. Be sure to wish him a happy birthday if you see him. I, unfortunately, will be working from morning to night. We'll celebrate, of course, just not tomorrow.

Love you all,
Melissa