Sunday, October 21, 2012

Did I Mention He is SMART?

David pulls up to the drugstore to pick up Elijah's prescription. He rolls down his window and says "pick up for Elijah Ramirez." Eli says from the back seat, "roll down my window." David obeys. Eli says out the window "Eli Ramirez, four-one-two-zero dogwood lane sapulpa oklahoma." For those of you who don't know....that's our exact address! What fun for David to get surprised by Elijah's brilliance!

Love those boys,
Melissa

Monday, October 1, 2012

Sophia's new cell phone

The kind people at Straight Talk sent us a phone to review in support of their sponsorship of Make A Wish. Straight Talk is giving $1 to Make A Wish for every person who demos an LG Straight Talk phone. It only takes one minute at your local Walmart.

The phone is awesome. Sophia is becoming a real pro at using her texting, Internet and phone. She's adding contacts and apps. She is 10 years old and is learning the phone easily. It's very intuitive. The service has been perfect with no problems. Please stop by Walmart this Saturday and demo a phone. It's an easy way to give Make A Wish $1.

Friday, September 28, 2012

YOU! Help Grant a Wish

Hello Team Eli!

Today, I'm giving you an opportunity to raise money for Make a Wish without even opening your wallet.
The Display at the Glenpool Walmart.
Straight Talk Wireless is encouraging consumers to go to their local Walmart to show their support for Make-A-Wish by taking part in a brief demonstration of a Straight Talk Wireless Android smart phone. For every shopper who participates, Straight Talk will donate $1 to Make-A-Wish, with the ultimate goal of $1,000,000.

The event will take place over four consecutive Saturdays starting September 22, 2012 at over 3,000 participating Walmarts under the banner "One Minute One Million." Every Walmart in our area is participating! And, it only takes a few minutes to do your part.

The One Minute One Million effort provides a unique way for consumers to 'feel richer' and help grant wishes of children with life-threatening medical conditions.

You can find a participating Walmart near you by visiting OneMinuteOneMillion.com.

Check out the action!
Main Web site: www.OneMinuteOneMillion.com
Straight Talk Facebook: facebook.com/StraightTalkWireless
Straight Talk Twitter: twitter.com/MyStraightTalk- Use #StraightTalkWish
Make-A-Wish Facebook: facebook.com/makeawish
Make-A-Wish Twitter: twitter.com/MakeAWish
Let's help make a wish come true for another deserving child suffering a life-threatening medical condition.

With love,
Melissa (and Eli who still constantly talks about our amazing trip to Hawaii)

Wednesday, August 15, 2012

Videos!!

Thanks, David, for these awesome videos of our fabulous trip to Hawaii

Part One of the Ramirezes in Paradise!

Part Two ... with Dolphins!!!

Part Three

Part Four

Part Five

Love, Melissa

Friday, July 27, 2012

You must be very special!

David, Eli and I spent a few days last week in Virginia at a conference for people with RTS and their families. Rothmund-Thomsen Syndrome or RTS is a very, very rare genetic disorder that causes a list of things to be different. All people with RTS have the skin rash you see on Eli. They can have radial ray defect (missing radius bones and thumbs, like Eli). They can have short stature (meaning they grow slowly, like Eli). They can have missing patellas. The list goes on. Actually, I'm not sure a comprehensive list of everything an RTS person can have even exists.

We really enjoyed the trip. I loved it when Delaney, a 7 year old, met Elijah for the first time. Quickly after sitting by each other Delaney says to Eli, "I only have four fingers." David, standing behind Eli tells Delaney, "Eli only has four fingers, too." Delaney's eyes bugged out and her mouth dropped open. She didn't say anything for a few beats and then exclaimed excitedly, "You must be VERY special to only have four fingers." What a treat! I could tell so clearly how Delaney's parents have nurtured her. Eli, on the other hand, doesn't yet realize that if he counted fingers on someone else's hands that they would have one more than he does. He'll know soon enough, but I'm guessing he's going to think there's something wrong with the rest of us.

We were also able to take a few excursions into D.C. Eli got to see the Air and Space Museums and the American History Museum. He loved the exhibit with the trains...so much, in fact, the rest of the museum was of no interest. Even the "real" Kermit the Frog...huge let down after seeing giant trains.

I told David during our trip that I should be wearing a T-shirt that says "Yes, you just stared at my kid and then looked up at me to see me staring at you staring at my kid. Awkward!" But, the honest truth is I know most people mean good when they see Eli.

Those of you who know Eli (and his dad) know that they are rather loud people. You can be a distance away and know where to locate Eli. In the airport terminal, people watch Eli. This particular time, he was playing in the floor with his new airplanes from the Air and Space Museum waiting to board his plane home. Ironic. Anyway, when we finally arrived in Tulsa at 10:10 p.m., David and I did our usual decide who's doing what so we can conquer this scenario and decided I would go get the car and pull up to the front to get Eli, David and the luggage. I took off pulling one suitcase with me. A woman about my age (very, very young), chased after me in the terminal, "ma'am, ma'am" (I should have told her we are the same age and very young and "hey" would have been fine.) I turned to see what the clamor was...not thinking she wanted me. But she ran up to me and said "Can I give you a hug?" I agreed and she hugged my neck saying "you all are doing a great job." I teared up. I said, "it's not easy." We exchanged a few more words and I knew that she (and a whole host of others) had watched me and David and Eli do our thing where we embrace what we have and make the best of it. And because we've done that for the last 5.5 years, Eli shines!

I have this special friend who lives in OKC named D. I can always share my deepest feelings with her. Recently, after listening to me describe how sometimes my life is just hard, she reminded me that God is building a Kingdom. I've thought about that a lot since. He's not just building my family...if he were, I suppose life would be super simple...but rather he is using us to reach many, many more in his work of Kingdom building. I'll keep pondering this, but I really like it.

I love you all and I appreciate your continued prayers for Eli. Of particular interest to us right now is that we pray Eli will never have to face cancer of any kind. His genetic syndrome poses a predisposition to childhood cancer. A really, really scary thing for me and David.

Melissa

Sunday, June 24, 2012

Sophia hits double digits

Sophia turned 10 this week. We had fun anticipating and celebrating and reminiscing. We looked through her baby book and it brought back so many wonderful memories of her birth and first year.

Re-living Sophia's first year, made me realize how cheated I feel about Eli's first year.

When I was caring for my newborn Sophia, I tried to savor each moment. I wanted to remember. I can remember what was on TV and the song I was singing to newborn Sophia when I consciously thought "I'll get to do this again with my second child." Now, it seems so ironic to me that I did not get to do it again. In fact, my "same song second verse" was nothing like the first. It was nothing like I had planned and imagined and dreamed.

The week before Eli was born I saw the movie Click. So maybe it's not too surprising that when Eli was born I longed for the magical remote that could fast forward our lives three years. It wasn't like with Sophia where I wanted to savor every moment. I wanted to skip forward...not too far, just three years. I thought when we got Eli to 3 years old we would be past the surgeries and the pain and the unknown. But, consciously, I was glad I didn't have a fast forward button because I was fearful I would get to three years later and Eli wouldn't be there. I knew I had to live the next three years and live them to the fullest and make certain that every thing was done to keep Eli alive and help him thrive. I'm so glad I did!

Tonight, Eli and Sophia are gone with Daddy buying a snow cone on a hot summer night. I know Eli is enjoying licking the ice and pretending to swallow it just like his big sister. One day, he will swallow it. :) Eli is 5 years old now and I still live on edge dreading the next discovery that will throw us for a loop. Those discoveries, thank God, come much less often than they did that first year, but they still hurt us deeply.

Our faith remains strong and the grace and mercy poured on us remains potent. Thank you all for keeping up with Eli here on his blog. I am sorry we don't write more often, but sometimes living takes all the time.

God bless you.

Melissa

Tuesday, May 22, 2012

Eli updates (and Goodbye Todd)

SOPHIA SINGS

Here's Sophia singing a song by our good friend Todd MacDonald, who passed away on May 14. I am simply amazed by her poise and grace, singing on the fly at Philbrook Museum this afternoon. More about Todd in a minute...



ELI NEWS

We're so proud of Elijah for graduating from pre-school with flying colors. He'll attend kindergarten next year, and he'll be amazing! We're sad to say goodbye to our teachers, but such is life. Here's hoping we'll be with new teachers who are as kind, loving and understanding as those we have known at Holmes Park in Sapulpa and during our years at the Little Light House.

On the medical front, there's a bit of sad news: Our little guy has "lazy eye" (Amblyopia) in his left eye. To force the muscles in that eye to strengthen, we must put an eyepatch on his RIGHT eye, where the vision is 20/40. Insanity. To his credit, he's dealing with the discomfort to the best of his ability. Which is to say, he hates it, but he's a very good boy who suffers through all the indignities we pour on him.

Eli has a big summer ahead of him, including our Make-A-Wish trip to Hawaii in July. That's right, I said Hawaii! All four of us love beaches, pools and oceans, and it never hurts to have a luau or two thrown in for good measure. Before that, though, we will be visiting several specialists for our annual checkups, including dermatology, gastrointestrology and oncology. As long as he doesn't get jabbed with a needle, Elijah will keep a playful attitude during any doctor visit. Still, keep little Elijah in your prayers as he faces his trials and his triumphs this summer.

OUR GOOD FRIEND, TODD MACDONALD

On May 14, my friend Todd MacDonald passed away after a long struggle with mesothelioma. Long before he learned of his sickness, he touched me with the beauty of his first album, "Changes." Todd was a songwriter of breathtaking skill and tenderness, as well as a magnificent singer and amazing guitarist. When Elijah was born, it was Todd's words that brought me comfort in the face of a struggle I simply couldn't understand, the struggle between my comprehension of how the world should work and the realities of living in God's will for better or, sometimes, worse. After he got sick, Todd continued to write songs of unquestioning loyalty to "God's perfect and wise purpose," as he put it.

Todd came to Tulsa to stay at my home for a week, as he promoted his album "Pilgrims Here." All the Ramirez clan fell in love with Todd, with his gentle spirit and his razor-sharp wit. I think Todd's dearest friend during his visit was my dog, Charlie. I'm not surprised that Todd had a soft spot for animals; I suspect Adam in the garden must have communicated with nature with the same effortlessness. Most profoundly, I was awestruck by the understanding Todd showed Elijah, never mentioning any comparisons between his own plight and our son's but rather speaking and singing consistently about the love of God and the rightness of standing in his presence, no matter the cost, no matter the circumstance. Todd infected me with his evangelistic fervor, and I will try to honor him by seeking out others to love as Todd loved.

I hadn't spoken to Todd since Christmas, when we had a long talk about that trip in 2010 to Tulsa. I told him I grieved for his pain (the cancer, which had been in remission but then returned, was now resisting all chemo), and he tried his best to comfort me instead of making me console him. I tried to get a recording of Sophia singing his song "Faithful and True," to present to him as a gift, but the audio equipment was just never right. I regret not getting the video to him in time, but Todd lived without regret, and it seems somehow wrong to feel such a thing when thinking of him. Besides, I believe he can hear her singing now, and that in itself is an answer to prayer.

I've been flooding Todd's Facebook page with my final thoughts about him, and I think this post on my own blog should constitute my final post for at least a while. I just couldn't let go for the past few days, you know? Anyway, here's a link to a concert he did in the summer of 2009 to promote "Pilgrims Here." He was amazing, in every regard.

Wednesday, April 25, 2012

Eli Who?

Eli and I were watching Dora together. We pretended that he was Boots and I was Dora. So, we had some various things that were our stars to catch. We put them in my pretend pocket. I said "Estrellas" and Eli says, "those aren't estrellas, those are stars." I cracked up and realized that I should not count on Dora to teach Elijah RAMIREZ Spanish.

Please pray for Eli. He has pneumonia! It's a scary diagnosis, in my mom-opinion.

Love you all.
Melissa

Sunday, April 1, 2012

The Glass Child

Enjoy!

Thursday, March 15, 2012

How's Eli?

I thought it would be nice to give everyone a recap on how the boy is doing and who he's been doing it with. For those of you who have friended me on Facebook, you've seen some of this already, including several wonderful pictures of Eli and his big sister Sophia, living life and taking charge. Overall, things are going very well, and Eli is doing better than ever. But we still face some big challenges, so continue to keep us in your prayers.

The most recent news is also the most pressing: Elijah had a temperature of 104 a couple of days ago, as well as a painful ear infection and some serious fatigue. He's doing much better since the antibiotics got into his system, and he's back at school today. This is last day before fall break begins tomorrow, and we have big plans for him day-to-day in and around Tulsa, so pray that he stay healthy so he can have fun!

Elijah is edging toward 28 pounds, which is phenomenal. The main reason he hasn't been able to push past the 27 lb. mark is that he is burning so many calories every day. How is he doing that, you ask? Why, by playing longer and working harder than ever before! He now spends his entire day at Holmes Park Elementary School in Sapulpa, and he uses his prosthetic legs and walker ALL DAY LONG, to move from classroom to classroom, to play on the playground at recess, even to play kickball and freeze tag in the gym. I'm told he likes to run around the bases. Can you imagine? It's a testament to the grace of God in our lives that he is doing so well and having so much fun. He's learning his numbers and his letters, and all the kids at school treat him like a superhero.

He is now wearing his BAHA hearing aid around-the-clock, and it really seems to make a difference. Since it's been a while, I'll recap all the hearing issues he faces. First of all, he was born with a radically underdeveloped inner ear structure (laterally; both sides, both ears), resulting in shortened cochleas and too few cilia (hairs) inside. Also, his Eustachian tubes do not drain properly, which means the fluid behind his eardrum doesn't pour into his throat like it does for you and me, but rather stays packed in back there. This makes it hard to hear, but it also allows the nasty bacteria to stick around much longer than normal, causing ear infections all the time. The tubes in his ears are functioning well, but there's only so much they can accomplish. Fortunately, his brain is hearing just fine. That is to say: the physical hearing structure (the ear) doesn't do all it should, but the part of his brain that interprets sound works perfectly, if the sound can just get to it. And so, the BAHA presses against his forehead with the help of a headband, and turns his entire skull into a big speaker. Pretty cool! When he's older, we'll surgically insert an anchor for the BAHA, removing the need for the headband, but for now his skull isn't thick enough for the surgery. The headband is bright red, and I think he looks a little like John Rambo when he wears it, which kicks butt.

His current obsession is trains, and he has almost completed his empire of wooden Thomas and Friends railway toys. He also collects Chuggingtons and wooden Cars 2 toys, and he can tell you the difference between a steamie, a diesel, an electric, a bullet train and a mag-lev. I thoroughly enjoy sitting on the floor and playing trains with him, but it's almost as much fun watching him play alone, having the engines talk to one another about the cars they're pulling and where they are headed to next.

Melissa and I appreciate each and every one of you for sending prayers out on Elijah's behalf, indeed on behalf of all four of us. They are much needed, especially for whatever comes next. Pray that we provide Eli with the best walking process possible, which is currently the walker but might be crutches or even unassisted walking in the weeks and months to come. Pray that he stay healthy enough to enjoy this beautiful Oklahoma weather we're having. Feel free to drop us a line anytime.

David

Thursday, March 1, 2012

The film about Sophia Ramirez

Follow this link to read the article about the young man who made a movie about Sophia Ramirez. You may watch the movie about halfway down the article. Enjoy!
The Glass Child

Melissa

Tuesday, January 17, 2012

Enjoy a Laugh

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. :)

Sunday, January 15, 2012

Videos from Disney World (part 3)

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


video

Saturday, January 14, 2012

Videos From Disney World (part 2)

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

video


Part 3 of the Disney Trilogy to follow!

Videos from Disney World!

Because you demanded it! Enjoy!

video

Stay tuned for Part II...

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? :)

Disney Pics