Eli's Journey

For those of you who don't know my husband personally, what you miss is that he is extremely resourceful and creative (perhaps you pick that up in his writing). David figured out a way for Elijah to sit in his chair (it's a plastic chair with high sides and back, not far off the floor) with his TV tray across the arm rests with our ottoman holding it in place so that Eli could play with his cars on the TV tray top. I was very impressed and Eli sat there like the big boy he is playing and playing. 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...

Friends, 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 ...

We are home. Made the journey yesterday. Elijah slept most of the trip, which was a huge blessing for us. He was excited to be home, but as soon as we finally pulled into the garage, he started to cry because he knew he would be picked up and it would  hurt. He was picked up, and it did hurt. I just cannot describe how it feels to watch your child endure such pain. Unless you too have experienced this,  I'm not sure one can even imagine it. When we change Eli's diaper he begs us not to, "No momma." With all of my heart,  I want to leave the diaper alone, but that would just lead to other problems. 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, Melissa

Elijah is in a great deal of pain. Perhaps the most pain after any of his nearly 15 surgeries. He cries in terror whenever we change his diaper or pick him up. He remains on the pain pump, but his pain persists. I also think he is scared of the potential pain. I know it will improve day by day, hour by hour, but it is very hard for us to watch. 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. Love, Melissa

As I was helping the nurses change Elijah's diaper a few minutes ago, I had my first real opportunity to hold his new legs in my hands. In that instant, I felt a blessed release from the apprehension and slight depression I've been feeling ever since we amputated his feet earlier this year. Back then, I had the sense that we'd been conquered somehow, that Elijah had lost an important battle so that he could eventually win the war. Well, the war is won. His new legs don't just look good, they look VICTORIOUS. His grandpa Ken said he looks taller and longer, just like any other three-year-old. I was too fatigued to register the concept at the time, but now, I couldn't agree more. 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 ...

Eli has been comfortable today. His pain pump has remained active and he's been sleeping most of the day. Doc says all looks well. Pray Eli will sleep tonight. Love all, Melissa

Elijah is in recovery. He will likely be there for 1.5 hours before we can see him. Dr. Gates said everything went very well. He removed a wedge of Elijah's fused bones plus a little to give the veins and nerves room. He is in splints and a strap around his thighs to keep his legs together since he's used to a sprawl. 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. Love all, Melissa

Elijah is in surgery. Dr. Gates began about 7:40 a.m. We're expecting the whole thing to take 2-3 hours, but it's hard to predict before the surgeon gets in there. 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 th...

Elijah is checked into the hospital. He's experienced the flurry of tests he's used to the day before surgery -- blood pressure, oxygen level, temperature, OT, PT, x-ray, etc. I think he knows the tests aren't really that bad even though he cries. I think he knows what comes next... 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 ...

Movie time! Here's 10 minutes of Elijah having a fantastic time in the kitchen sink. You'll see him master sarcasm and feign surprise, play in bubbles, turn the faucet on and off, and sing with big sister Sophia. We had a great time. 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'...

This evening, I am encouraged. I am overflowing with peace and anticipation. God is good. Eli is in His care. We will all survive the coming week with flying colors. 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, Melissa

Sometimes it hits me out of no where. It's like a knife stabbing deeper into my unsuspecting heart. Today, while minding my own business at the nail salon (one of my few indulgences), I was watching a little girl and her mother as the mother worked to keep the child entertained while she had her pedicure. In my mind, this child was at least 6. The nail technician asked the child, "how old are you?" I didn't hear her response, but I heard her mom say "no, you are THREE." I gasped. The child four times the size of my Eli is his age? Shoot! My eyes automatically filled with tears and the salt poured into the open wound. When will it heal? 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 being...

Last night was a humdinger, with both kids staying up watching TV until 11:00. Sophia finally started to drift off, but Elijah was going strong, playing on the floor with his big cardboard blocks, mostly setting them up and knocking them down. I saw my chance, so I swooped down and scooped Eli up. He instantly went from giggling and talking to the block to saying, "Help me, Sophia! Help me, Sophia!" over and over with his hands stretched out toward his sister, who was groggy and oblivious. I couldn't help laughing but tried to keep it to myself; if he heard me, he'd think it was still playtime. (By the way, Eli passed out as soon as his head hit the bed.) "Help me, Sophia! Help me, Sophia!"