Eli's Journey

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

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.

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 OneM...

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

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 ...

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...

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 i...

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

Enjoy!

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 2...

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

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 an...

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

The continuing saga of our Christmas/Birthday trip to Florida in Dec. 2011: Part 3 of the Disney Trilogy to follow!

Because you demanded it! Enjoy! Stay tuned for Part II...

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 t...