Saturday, July 31, 2010
Eli is very tense when we pick him up. David taught him to say "be gentle." I think that makes him feel better even though we would be gentle with or without his request. He remains on pain medication, but he is feeling better every day. Just two more weeks and he'll be back in Shreveport to have his new, fabulous legs revealed. Can't wait.
It's so invigorating for us to be able to focus on something NEW rather than the NEXT surgery....there is NO next surgery. I will interject that Elijah will need new tubes in his ears, but come on folks, that's nothing compared to his list of procedures so I can hardly call it surgery. Now, we get to focus on helping Eli learn to LOVE to eat like the rest of us. Learn to use his new legs to help him walk. Learn to better articulate his sounds so that we can understand every word of his constant talking. We can focus on potty training and sleeping through the night. These things are all so important to Eli's life, but until we could see past this long list of surgical intervention and everything that comes with that, they had to be on the back burner. Now, they are front and center! In fact, in August Eli will begin a weekly food therapy program and have a swallow study. He will see the ear doctor for a plan for new tubes. And he will begin school again in a class for more advanced little fellas like him. August is buzzing!
Thank you for continuing to pray for Elijah's comfort and healing. Joy bubbles up inside me to see Eli smile and thank God, he is smiling again constantly.
Love you all so very much. Thank you for keeping up with Elijah. You will never fully know how your prayers and concern have changed his life, but know that they have!
Sunday, July 25, 2010
This morning, Eli woke up with a smile. A huge victory for the whole Eli team. Elijah's Granna, my mother-in-law, wrote an inspiring rendition of our week in Shreveport that I know you will enjoy reading.
From Granna (Anna Ramirez)
If you have been following the blog you know that Eli had another surgery last Wednesday. Thank each and every one of you for your prayers and help. He is home now and doing well.
John, Mark (our son), and I traveled to Shreveport to be with Eli and his family and Melissa's parents, Ken and Sue. We know he recognizes the Shriners Hospital when they pull up to the gate. We know that his knowledge of what will happen must be sparked by the six hour drive preceding arrival at the familiar gate. After all he is a really smart guy.
When we arrive we all are always greeted by the most friendly people at the front desk and walking down the halls we encounter many smiles, some looks of frustration from children and parents who are working on physical therapy. There are some protective looks from kids who know what it is to be in this facility of good and bad things. The most unbelievable happy greetings come from nurses, especially when they know we are here to see Eli Ramirez.
The best part is walking into the play room where David and Eli are and hearing this kid scream, "GRANNA!" Excuse me but that is such unspeakable joy. That's just me. (He does the same for John and Mark but for now, I'm the one writing and I get to tell it my way.) There are kisses and hugs all around and then we're on the floor playing non-stop. Finally, Eli climbs the steps to sit in front of the lighted bubble tower that changes colors. As he climbs down he makes it down the first step and falls asleep on the second. This is going full throttle and running completely out of steam. We've stayed past visitation hours but it was worth the only negative word we received the whole visit from the security guard who had to let us out. Tomorrow will be a long day full of unknowns, prayers and waiting. Eli will be the focus and God will be in control.
I don't know that I've really ever had a hero. I just never trusted people that much. I've had people I admire, those I love more than life itself, and those I am grateful for. Hero status just hasn't been something I attached to anyone I've ever known, until now. I have found my hero. He's pure and innocent and he doesn't seek anyone's permission or admiration. He doesn't pretend to be brave and he lets everyone know when it hurts or when he's mad about what's happening to him. In the same breath he can say I love you, thank you, bye bye or give a high five. He gets it and doesn't flaunt the fact that he's been brave, courageous or incredibly amazing. He's not famous and doesn't get millions of dollars for his talent. He teaches himself to do the impossible and makes others see that they are just lazy if they don't try as hard as he does. We have learned so much about God's definition of perfection from a little guy who is very different from the run of the mill people around him. Because of him we get to be around his friends and compatriots who are as unique and incredible as he is. This guy is going to show us all how to live our lives without rewards or trophies. He is teaching us that satisfaction is something as small as getting a drink of water and as huge as pushing through the pain to walk...to run!
Yesterday we walked into the room and his eyes were bright and his smile was huge. We knew he had a six hour ride home in a car that would toss him over each bump. He kissed us goodbye and gave us high fives. We got in the car for our own ten hour drive and at the end of the day we were complaining about being cramped, hungry, and tired.
We had already forgotten.
This morning as I was writing this, Melissa called to report on how things went last night. She said she woke up to hear Eli yelling "No, Daddy NO!". David needed to change his diaper and he knew it was going to hurt. Melissa and David and Eli got the diaper changed and they all went back to sleep.
Hero status granted to Eli Ramirez...and I get to be his granna.
Saturday, July 24, 2010
The pay off for this pain will be fabulous, but for now, it just hurts really badly. Please pray for Elijah's recovery to speed like a freight train.
love you all,
Thursday, July 22, 2010
Elijah's experiences age him. I know I haven't experienced the level of pain he has endured in 3.5 years. Wish I could go through it for him.
We are unsure if we will be making the journey home tomorrow or having to stay another night. I know the ride home will be very hard on Eli.
Thank you all for praying for our sweet child. We treasure you.
Wednesday, July 21, 2010
How to describe what I'm feeling? It's like opening a package on Christmas, and instead of finding socks or cleaning supplies, or even the toy you asked for, it's the most thoughtful, most appropriate gift you've ever seen. The gratitude is so profound you're reluctant to say thank you because the words fall short. It's odd to be sitting here at the Shriner's hospital, pushing Elijah's pain medication button and fussing over his slightly high tempurature, but feeling something other than sadness. There's this joy in me that I plan on carrying with me over the next few months as all the players in Eli's sphere work almost as hard as he does to get him UP and walking. God's always had a plan for Elijah's life, but sometimes I didn't feel like I could see it. And tonight, I do. So there it is.
We've got a couple more sleepless night ahead of us, and there will definitely be some discomfort as Eli recovers from this very difficult surgery. KEEP PRAYING!
Doc says Elijah can stand up as soon as he's ready. His bones are strong with a metal plate and screws.
He'll be on a pain pump until the IV in his head goes bad, which is usually pretty quick, then pain med through the g-tube.
I'm excited for Eli. He'll get to walk! What a miracle!
The pain is coming, it's hard to watch.
The best news we received yesterday is that Eli will be in prosthetics within 2.5 months! Walking by Halloween! That news makes today's surgery less horrific for me. I'm actually excited to get past today and onward to walking. I know, if he could, Eli would thank us.
He was scared this morning. His "I don't care" cocktail gives him less relief than the first time he had it. His body metabolizes so quickly such drugs. It did help. He wasn't screaming in distress as he was wheeled away.
We have some of our dearest loved ones here helping us endure this part of the journey.
Keep praying for Dr. Gates. Pray he makes the exact right decisions. Pray Eli's nerves and blood vessels are protected and take to the new formation with ease. Pray he forgets and remains pain free. Pray for those of us here who will have to see his pain. That's not easy.
I love you all.
More to come.
Tuesday, July 20, 2010
Many of the in-patient unit staff know Eli and say "Hi Eli, you're back." Eli likes that. We're treated like family here.
Sophia is busy entertaining Elijah with all of her might. Smiles. Hugs. Fun ideas. Songs. She's the greatest big sister. As I write, Eli and Sophia are riding in a wagon around and around the unit. Anything to take Eli's mind off of where he is and what that means.
Pray for Eli's peace. Pray he remains pain free. Pray he sleeps tonight. Pray he forgets this stay in Shreveport. Pray for Eli's doctor, Dr. Gates. Pray for his wisdom and his skilled hands. Pray for the kind nurses here as they care for Eli. Pray for safe travels for us and our supporters.
Special thanks to the family house sitting for us and the family dog sitting Charlie. Love you guys!
Friday, July 16, 2010
Now let's take a moment to say farewell to the 45-degree angle in Elijah's knee joints. For those of you who don't know, he'll undergo a major surgery next week. Although it's technically elective, it's the very definition of invasive. Our goal is to straighten the knees, giving him one long limb from hip to ankle. This is the last big surgery needed to allow Eli to walk. Melissa tells people he could walk by Christmas, and it literally blows my mind, and I have to sit down. There's just so much hard work ahead for him. Please pray for Elijah on Wednesday morning, July 21, starting around 7:00 a.m.
I know it sounds odd that we would miss these bent knees -- with no cartiledge or growth plates around the patellas, he's never been able to bend them -- but Elijah has learned to do so much with them. For instance:
- He can sit in the sink, because his legs fit.
- He can climb up the stairs. He can climb down the stairs.
- He can crawl on his knees just like other kids.
- He can stand on his knees and reach up onto the furniture and some chairs.
- Most importantly, his knees have frozen his legs in the "criss-cross" style that so many of us take for granted. This is how he learned to stay sitting, to raise into a sitting position, and everything he now knows about balance. I've often marveled at the fact that, while his underdeveloped inner ears may cause him problems with his equilibrium, his amazing leg structure has allowed him to compensate as quickly as needed. It's possible he'd still be lying on his side if not for these knees.
Still, there's no doubt this is the right thing to do. Elijah is ready to walk long distances, and he certainly does try. This week he demanded we allow him to scootch from his classroom to the school's front door on his own power. But he must either crawl, scoot on his bottom (causing a lot of friction on the underside of his legs; the callouses are profound) or hop in the air using all the strength in his thighs. It's time to give him the legs he deserves.
Despite how unfair all this is, it's a genuinely great thing to have a son I can call my hero.
P.S. It's time again for Mini-Laps, the Little Lighthouse fundraiser. We'll make a more formal request for your help, but don't wait to donate if you intend to. Small gifts mean a lot, and it's important that you tell your friends about Eli and what the Lighthouse has done for him. Donate at: www.littlelighthouse.org
Tuesday, July 13, 2010
We are blessed. We are blessed to be the parents of a magnificent child (two of them) who touches people around the globe with his smile and tenacity. We are blessed that our Savior uses us to show his love and compassion to those we know. Thank you, God, for caring about us with such depth we can hardly comprehend. Eli is cherished by many.
Eli is still sick. He needs to heal so his body will be ready for invasive surgery (no laparoscopic here).
Love you all,
Saturday, July 10, 2010
Are you ready for more honesty from the Ramirez home? We are dreading Eli's next surgery. I cannot think of one surgery that we've looked forward to. It's such an interesting frame of mind: we work like mad to make sure Eli is prepared and healthy for surgery, but we dread every minute of it with our entire beings.
This surgery for Eli is not one well practiced even at the Shriner's hospital. I'm not even sure our precious and brilliant Dr. Gates has performed such a surgery in his career. Eli's knees are stuck at a 90 degree angle. His knees do not bend. He has no knee joint. His bones are fused at the right angle. One week from Wednesday, Dr. Gates will open Eli's leg, remove a portion of his fused bones and then reset the bones straight. When the bones, skin, muscle and leg heal, Eli will have a completely new leg structure.
He's known nothing but these stuck-in-a-bend legs. These legs, though, give him great balance and the ability to scoot around on the floor to his heart's desire. We'll be taking away some of his abilities, but it's a trade up...eventually. I wish it could happen with great speed that Eli will move into the ability to walk, but I know he will need a lot of time to heal before he can take that on.
Please pray for our family as we prepare for another difficult adventure with the Shriner docs and nurses in Shreveport. Today, Eli has an ear infection and a lot of congestion. Pray for his complete healing. David has pneumonia. Everyone is on the rebound, but time is limited...we need quick, miraculous recoveries.
In my heart, I know Eli will be walking by Christmas. Come on Christmas, we're ready!
With love and gratitude,
Saturday, July 3, 2010
"Help me, Sophia! Help me, Sophia!"