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. :)
Tuesday, January 17, 2012
Sunday, January 15, 2012
Saturday, January 14, 2012
Videos From Disney World (part 2)
The continuing saga of our Christmas/Birthday trip to Florida in Dec. 2011:
Part 3 of the Disney Trilogy to follow!
Part 3 of the Disney Trilogy to follow!
Monday, January 2, 2012
Eli's BIG Birthday Party
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? :)
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? :)
Friday, December 23, 2011
Random Disney World memories
We’re back! Did you miss us? Only crazy people would take their kids to Walt Disney World for eight days right before Christmas, and you already think we’re plenty crazy, so we didn’t make a lot of noise about it. But Sophia and Elijah were just so stinking cute this week, I just had to tell you some of the amazing things they did and experienced. Pics and Videos to follow!
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!
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!
Friday, November 25, 2011
Eli is almost FIVE!
Eli will be five years old on December 23. We've decided these five years deserve a BIG celebration. We're having a Birthday Party for Eli on Dec. 31 and we're inviting everyone who has been in Eli's life since his birth. It's been a wild ride.
So, since you read his blog, you are a member of his team and we want to invite you. If you haven't received an invitation it is only because I don't have your address. So send me an e-mail melramirez22@yahoo.com with your addy and expect your invite soon.
Melissa
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
Thursday, November 17, 2011
Eli on KRMG... Prepare For The Cute
Elijah was at LaFortune Park this afternoon to talk on-air with Joe Kelly from KRMG AM740. Joe and the staff of Make-A-Wish were in their second day of collecting donations for the annual fundraiser, and I'm pretty sure they made their goal of $200,000. That doesn't mean it's too late for you to donate! They've decided to send Eli to Hawaii sometime in 2012. (Hopefully they'll decide we can go with him; I'll keep you posted.)
Eli got to look inside a police patrol car, and he talked with several officers, then went right up to a real helicopter and poked his head inside! Then it was time to talk on the radio, and Eli turned on the charm big time. Jeff Summers, CEO of Make-A-Wish Oklahoma, has given Eli the nickname "Hollywood."
We also recorded a "Story Of Light" which has been running on KRMG all this week. We didn't know it at the time we recorded it, but it was actually HILARIOUS. Take a listen by clicking on this link, then scrolling down to the list of names and clicking on Eli's:
http://www.krmg.com/maw/index/
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!
Saturday, October 1, 2011
Elijah at Mini-Laps - THE PHANTOM
It's that time of year again, and all our friends and family made this the most special Mini-Laps event so far. We met and exceeded our fund-raising goal, and the Little Light House raised the largest amount in school history for this event. Every year, the students of TLLH dress up in costumes and walk around a small track behind the school, as hundreds cheer them on and hear their stories. This year's theme was "The Big Apple," and we dressed Elijah up as The Phantom Of The Opera, one of the classic Broadway icons. We turned his walker into a pipe organ, and he really hammed it up.
Watch as he takes his lap for the first time on his own two legs! This accomplishment is the culmination of years of work on the part of Eli's parents (that's me), his teachers and therapists both at school and at home, and most of all Elijah himself. His first year, you may recall, he was pulled around the track in a toy car made up to look like Lightning McQueen, and at the end he scooted over the finish line on his bottom. The next year, he went around in a wagon with some farm animals attached, then he actually walked about ten steps over the line in his walker. This took place ONE DAY after returning from the Shriners Hospital in Shreveport where he received his very first pair of prosthetic legs. There were tears that year, but he made it through with flying colors.
No tears in 2011, just willpower and an adoring crowd. You'll see him take a tumble before he makes the turn, but it's no surprise that he stood up again and kept going, eventually walking the entire track on his own. He loved seeing his mom and sister waiting for him, and he's looking forward to seeing YOU there next year!
BONUS VIDEO: The day before the event, we got a call from Linda, the PT at Eli's school, suggesting we make sure he could navigate in his blue Kid Walk, which he uses all the time at our house but never before at school. This was also my only chance to see him walk his lap, since I went to Boston on Saturday and had to miss the actual event (FROWN). I took Elijah and his nurse Melody to the school, and although he got tired a few times, he never gave up.
Sophia at Mini-Laps... SUPERSTAR!
Are you prepared to behold Sophia singing "The Star-Spangled Banner" at Mini-Laps 2011? NO YOU ARE NOT. It's simply too awesome. This 9-year-old diva-in-the-making worked for weeks and weeks on her phrasing, her breathing, her notes and her diction, and even I was speechless at the utter magnificence of the final result. If you missed it (like I did - I was in Boston!), be sure to come to Laps for Little Ones on Oct. 15 at Cascia Hall, another great opportunity to donate to Elijah's favorite school, The Little Light House.
GO SOPHIA!!!!!
Ramirez Kids In T-Town
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!
Saturday, August 20, 2011
Elijah's Quest
Hello Team Eli!
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
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| Eli and David at Top of the Rock in NYC |
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
Tuesday, August 9, 2011
Please support Mini-Laps!
Our dear friends,
Live from New York, it's Elijah Ramirez! He's ready for his big moment on the stage at the 2011 Mini-Laps! On Sept. 24, Elijah will walk around an oval track while hundreds cheer him on. This year's theme is "The Big Apple," so we'll probably dress the boy up as a big piece of fruit. Back by popular demand for his fourth year, Eli is eager to represent his big sis Sophia and his mother and me. We're his biggest fans, and we know you feel the same.
PLEASE HELP US support Elijah's fabulous school, The Little Light House, and all 64 students taking part in this year's Mini-Laps. The parents of these students (including the one writing this letter) take time during Mini-Laps each year to ask everyone we know to consider a financial contribution to The Little Light House, a private school for extraordinary children who need special care and attention.
The Little Light House is staffed with licensed therapists in all specialties and specially-trained teachers in each classroom. Eli is in the Pink Class where he learns with seven other extraordinary kids. The teachers and classroom associates are remarkable individuals who have such compassion and care for each child. The therapy Elijah receives is developed through strategy sessions involving all of the disciplines. Honestly, Eli couldn't receive a better education anywhere else.
When Eli joined the school at 18 months, he had trouble sitting up, speaking, even lifting objects. Today, he is one of the sharpest four-year-olds on the planet, able to count past 10, memorize lists, sings songs and write his own name. Every day at school he practices walking on prosthetic limbs, eating by mouth, reading books and much, much, MUCH more. Best of all, he loves going to school!
The Little Light House receives no government funding and no United Way support. The Little Light House is 100% supported through the generous financial gifts from caring individuals like you.
This year, they will invest $17,000 in our sweet Eli. Will you help us give back?
I know many deserving charities ask for your support, but this year, will you join us in supporting a Christian school specially designed for extraordinary kids? Kids who didn't ask to be extraordinary. Kids who need a little more attention, a little more help to reach their very best potential. Kids who will succeed thanks to The Little Light House.
With gratitude and love,
Melissa, David, Sophia and Elijah
CLICK HERE TO VISIT OUR MINI-LAPS PAGE: https://sna.etapestry.com/fundraiser/TheLittleLighthouse/minilaps2011/individual.do?participationRef=468.0.4895783
Tuesday, June 14, 2011
The Ramirezes at Walt Disney
Friends, enjoy this video thank you to the generous people who sent our family, along with the Mitchells, to Walt Disney World. We had an amazing time.
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