Friday, January 17, 2014

Elijah Will Be Represented at Boston Marathon 2014

Our dear friends the Sperou family in Massachusetts recently asked if we'd be interested in seeing Elijah represented by a runner during the upcoming Boston Marathon in April 2014. Of course we said yes! What a fantastic opportunity, to know that someone has dedicated themselves to running 26.2 miles, thinking about Eli the entire time, working to raise money for children like Eli who are dealing with rare diseases.

Kelsey Hoontis, our new superhero, is sponsoring Eli as part of an organization called "Running For Rare Diseases." They recently spoke with Christopher and Laurie Sperou about sponsoring their precious daughter, Shauna, who became a good friend of Eli's during our visit to the Rothmund-Thomsen Syndrome conference in Washington, D.C. Kelsey is one of three (for now) runners who will be representing RTS kids, and I'll tell you honestly, it feels so good to see Eli's syndrome garner more attention. We felt so alone in those early days when we had just learned what Eli's syndrome was, and there was little chance of meeting someone else who had the disease. Now we're part of a network, an extended family, and the support from a legitimate support system is, well, supportive!

Would you be interested in sponsoring the runner who's sponsoring our son?

Click on this link to see the Running For Rare Diseases blog. You'll learn how you can financially support Kelsey during her run, and in turn sponsor medical research for rare diseases in general and RTS specifically. Forward the link, and spread the word! It would mean so much to me personally, and it will be a great way to be a part of Eli's life.

Write back with questions! I'll tell you what I know so far about the Marathon. If we're able, we'll be in Boston for the run. That would be amazing!


Monday, December 23, 2013


It's here. Eli's big day. Today, Eli turns 7 years old. The feelings and emotions I have for this day are overwhelming. It's been a long, long 7 years, but I can remember this day in 2006 like it was yesterday...and the months to follow. They are etched in my memory with Sharpie...never fading. Some of the memories, honestly, I wish I could erase. The hurtful ones. Some I've written about on this blog, but most I keep hidden.

We hosted a birthday party for Eli on Saturday. He invited his entire regular class and his entire special needs class to his party. I began first thing in the day warning Eli that he might not have a lot of kids come. I wanted him to be prepared for the worst. Though Eli was confident his friends would come...I wasn't sure. When party time arrived, five precious kids came to celebrate Eli's birthday. I was relieved and Eli had a marvelous time with those five great kids. That same day, we had a family celebration where we all doted on Eli.

Despite his Saturday celebrations, Eli woke up this morning ready to celebrate his "real" birthday. I told him he was receiving a shopping spree from his mom and dad and that we'd leave for Wal Mart so he could pick out toys to his heart's desire. (I mean seriously, just because your birthday is two days before Christmas does not mean you shouldn't get the full gift benefit of the anniversary of your birth...I'm sure you all agree.)

Eli was wearing his shoes and the nurse and I toted his back pack full of medical supplies and his walker to Wal Mart. Eli enjoyed walking around the toy department looking at this and that and picking out two new train sets, two new trains, a set of tractors and (a mommy selected) learning toy. The basket was overflowing and Eli was tired and ready to ride. The nurse and I were rearranging and making room for Eli to sit with his haul when an older man approached me, handed me a one hundred dollar bill said Merry Christmas and walked away. My first reaction was "no, no, no," then I said "thank you." And, the man in the green coat was gone. I stood stunned for a few minutes...unsure of what my next move would be. I looked way down the aisle to see the man headed to the grocery department and so I told Eli that a nice man wanted to buy his birthday presents and he needed to say thank you. So, I CHASED the nice man in the green coat. He obviously was unsure about where he was going because he took many turns to end up at a canned food area. I found him and Eli told him thank you and that today was his birthday. The man said, well, it was meant to be. Merry Christmas. And he was gone again.

Earlier as we were walking through the store, I was noticing all of the smiles being sent Eli's way. Eli doesn't acknowledge the looks. I'm unsure if he doesn't notice or he just knows they are his normal. But, I do know that Eli radiates wherever he is. I thought, I'm glad I could bring Eli to Wal Mart today to brighten everyone's day. And then, someone brightened my day. Eli brings out the best in people and I'm honored to be his mom.

So, Eli, here's to another year ahead. Your year as a 7 year old boy. The year you will learn to walk without a walker. The year you will learn to read and master math (that's giving him trouble right now he's telling me). The year you will start to eat by mouth (I continue to tell him how great it is to eat pizza and biscuits and gravy). The year you will brighten the day of countless strangers, unknowingly. I love you my precious son.

Here's some pics of Eli's year:


Tuesday, July 23, 2013

He knows

Last night, Eli asked me if his toes would grow back when he grows up. I had about three seconds to carefully formulate my reply as a knot formed in my throat and I blinked back tears. My reply: no. I immediately heard the distress in Eli's voice. I'm certain he expected a different answer.

"You mean I will always have these circle feet?"

My reply was a simple yes though I wanted to say much more.

Yes and I am so sorry. If I could change it, I'd do whatever it took. If I could give you my feet and toes, I would do it 10,000 times over. Whatever it took. But I didn't offer him a glimpse of hope that he might eventually have plain, ordinary feet.

My mom is the one person I know who will never lie. She was the one person I always knew I could count on to tell me the honest truth. If mom says it, it is. If someone was joking with me, mom would never join in the joke. In fact, she'd ruin the fun and put my mind at ease with the truth. I decided well before Eli's birth that I wanted to be like that for my kids. It was something I really valued about my mom.

So when my 6-year old Eli asked me about the likelihood of his toes growing back. I told him the truth...even though it broke my heart into a million tiny pieces.

The conversation continued as he asked me, "how will I walk?" I told him he will have his cool shoes. He was worried that they won't fit when he grows up. I assured him that he will have new shoes to fit.

I know his little brain worked that conversation over as he drifted off to sleep. I hope one day he will appreciate that I will always tell him the truth. In the meantime, I do hope he doesn't ask me if he is having surgery on August 2nd.


Thursday, April 18, 2013

Eli's First Birthday Invitation

It's been an emotional day for me, and it's only 10:00 a.m. We were getting Elijah ready to meet the bus to school, which means grabbing his bottles of formula from the fridge and zipping them up in his backpack. Nurse Melody was at her own home last night, so this was the first time anyone looked in the backpack since yesterday. The first thing I noticed was an envelope on top of the backpack contents. "What is this?" I said, although I suspected right away, and my existence shifted a bit, everything everywhere all at once, the way the world is lit differently during a solar eclipse when the moon bends all the light, and it's orange and lovely and glowing but still essentially the same light.

Melissa was standing beside me as I opened the envelope and saw a card with Optimus Prime from the Transformers, and the words "You're Invited" underneath. My hand trembled, and I looked at Melissa. Tears jumped to my eyes, then more, and suddenly I was sobbing beyond my control. Sophia ran over to ask Melissa what the card said, and I stumbled into the dining room and wept. After Melissa shared the card with Sophia, she joined me in the dining room and embraced me. I got hold of myself and gave her a kiss, then Melissa left me there to go share the invitation with Eli. He didn't know about it, so it was a wonderful surprise for him.

Sometimes when I'm lying in bed, I allow every inch of my body to feel the covers above and below me, to open my sensation of touch to expand to its full capacity. I experience the strange paradox of feeling both compressed, smaller from head to toe, but also expanded, able to sense more of what's around me than what my body is actually feeling. This is a sensation with which I'm well aware from my time with Elijah. So very often, day to day, you and I allow some of our senses to shut down while one of them -- sight, mostly -- takes command of our attention and beams only the current circumstance into our heads. Often this is a good thing, like when we swerve around a fallen branch when driving; you don't want to be distracted from that single object. But when you can afford to open yourself up to the entirety of your life's story, or to your son's, it's a humbling and overwhelming thing. It buckles your knees, drops your jaw, fills your lungs. It's in these moments when I most fully experience the supernatural, what I believe is the presence of my Creator, although I always pragmatically believe even when life is more mundane.

Put yourself in my shoes. One moment, I was running around trying to fulfill Eli's routine, as well as Sophia's and my own. The next moment, the very next one, I'm remembering the time when Eli was born and I wondered if anyone would ever play with him, or appreciate him, or love him like I did. I wondered if he'd speak sentences, or taste food, or listen to music. I worried that he'd been in constant pain, or sit quietly and watch the world leave him behind, struggling with loneliness and anger and confusion. I braced myself for the possibility that he would never forgive me for making him be born sick, and that I would never forgive God for the same thing. (We recently learned that doctors in Europe will be featuring Elijah's case in a textbook, because he suffers from a rare version of one of the world's most rare diseases. It's one thing to suspect, and quite another to see it in print.)

To feel all that massive, heavy past superimpose upon the present day, where Elijah is RUNNING down the halls of his school, learning to add and subtract, singing the songs from Wreck-It Ralph, cracking jokes, and begging for one more minute of toy time before getting into bed... It's a compacting feeling, almost crushing. Even opening yourself up to all the good things in life is a spiritually draining task, and it's even more impressive when you never saw it coming. There I was, just pretending like it was completely normal for Elijah to see 20/40 with glassess and use his hearing aid to hear all the way across the house, to ride a big yellow school bus all alone and never feel scared in the least, to never get angry, to never display jealousy, to always say "thank you" for even the smallest of gifts. To say "thank you" when the nurse has just pulled out the needle, and he's terrified and unsure how must longer this will take. To have a spirit like that, to be a person like that.

Elijah received an invitation to a birthday party last year, from a little girl in his class that thinks he's fantastic. We met her because her sister is Sophia's friend, and I know the parents very well. But now, Eli has gotten a birthday invitation from a kid I've never met. His parents don't know me, either. The only connection is the one that Eli built from scratch at his new school. He walked into the classroom, participated in the learning and the fun, spoke when he was spoken to, and showed his peers how much he appreciated them. And when it was over, one of his friends asked him to come take part in a special day where Eli's friendship would be rewarded with food, games, prizes, and apparently a few laps around a go-cart track. Don't forget, Elijah has only recently been given the height he needs to ride go-carts, thanks to new prosthetics from Sabolich in OKC. Nothing, nothing, nothing, nothing, nothing in Eli's life can be taken for granted... but we still do it, all the time.

I envy the moms and dads of children with special situations, who never doubt that their kids will achieve just as much as anybody else in life, and when these triumphs occur, the parents cock their heads and say, "Well, what did you expect?" Then they go on with the routine of helping the kid rise above any and all limitations. I envy them, but I could never be like that. My doubts and fears are something I've had to overcome, and they drive me to worry about Eli, to investigate all the resources and possibilities, to navigate around the pitfalls even when they aren't that close. (You can be sure I'd never have made it this far without the organizational genius of my wife, Melissa, and the calming stability of my daughter, Sophia.) And I admit, even after all the success, even after all the hard work Elijah has performed on his own behalf to achieve what he must somehow have known he would one day achieve, I still had doubts. Even though I know everyone loves my boy, I wondered how long we'd wait for the first party invitation.

The answer was: kindergarden. Not too shabby.

Saturday, March 23, 2013

What is going on with that cute kid, you ask.

Easter Picture with a chick that Eli wouldn't actually touch. :)
Hello Friends! I am delighted to share with you about Eli's recent progress. We moved! It's a big deal and we didn't really talk about it in our social media because it was pretty stressful and the reason we were moving might have been offensive to some. Let me explain.
We moved for two main reasons 1. Eli needed some home modifications. The steep driveway, drop off on the side of the driveway and the layout of the house was not ideal for our sweet kid. 2. We felt that Eli needed to be in a different school. This  was a big deal. It's not that his former school was bad...they just didn't have the resources to care for Eli the way David and I wanted. We wanted him in a regular classroom so he could learn at the same pace as his peers and his old school would not accommodate our request. He was also in a room with a child who was allowed to be aggressive toward other kids and she scared Eli really, really badly. So badly, in fact, that he stopped loving school. We certainly don't blame the child. She is non-verbal. But, to allow her to "bully" Eli and the school administration to blow off our concerns was not acceptable to us. He didn't want to go any more. So, we moved!

I'm so happy to report that we made the right decision.  Eli's new school is spectacular. He is loved and adored and the special teacher TOLD US that Eli needed to be in the regular classroom more. It was like the third day he was there so we hadn't really told them yet about our high expectations....but they blew them out of the water without even knowing them. His teachers (both regular class and special class) are the most amazing human beings and teachers. Eli LOVES going to school again. Eli is teaching his peers about accepting people the way they are and how to be compassionate and patient.
The first day we went  for a tour of the school, the principal came out to greet David and me with hugs then she sat down on the floor in front of Eli and started talking to him about swimming with a dolphin in Hawaii....because she had read his blog! Then the special teacher Amy comes around the corner and the almost first thing out of her mouth is "I saw you swimming with a dolphin, Eli." We knew, at that very second, we had found the perfect place for Eli's education. What an amazing group of educators! Thanks Jenks West Elementary!!

At his new school, they did some testing on him to qualify him for special education services. They discovered that his social and emotional level is at 10 years 1 month.  That means that he is as socially and emotionally mature as his older sister. And, I believe it! It's not necessarily a good thing that the circumstances of Eli's life have caused him to mature and deal with things beyond his age, but it makes him such an amazing human.
Eli's new Physical Therapist at school told us that we should be sharing Eli with more people because he is such a brightener. It is so true. If you haven't had the pleasure of meeting Eli in person, you are really missing out.

We are in the process of getting Eli new "shoes." In fact, we are using a brand new prosthetics clinic in OKC called Scott Sabolich Prosthetics and Research. Again, we feel like we have hit the jackpot. Soon, I'll be able to post a picture of Elijah wearing some new legs .
We love you all!

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,

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

Check out the action!
Main Web site:
Straight Talk Facebook:
Straight Talk Twitter: Use #StraightTalkWish
Make-A-Wish Facebook:
Make-A-Wish Twitter:
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


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 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.


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.


Tuesday, May 22, 2012

Eli updates (and Goodbye Todd)


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...


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.


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.

Sunday, April 1, 2012

The Glass Child


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.