Eli's Journey

Eli is doing well. He is getting better and better every day. Our biggest challenge right now is keeping the splints on Eli's legs. His legs seem to swell up on occasion and then cause extreme discomfort, which requires us to remove the too-tight splints. Other times, his legs un-swell and his splints fall right off. We've been told to simply mange the splints...on, off, on, off (bath!!), on, off, on, etc. For the most part, Eli prefers them on. Either way, he still cannot get comfortable to sleep. He's used to tummy sleeping with his booty in the air. Now he cannot stick his booty in the air. And, when he rolls over he has blanket issues. Plus, most of the time he cannot roll himself over and he'll yell, "roll me over." To sum it up, David and Eli are sleep deprived. We are counting down to the next Shreveport trip on Sept 20. We expect Eli to come home with prosthetic legs that he is learning to use. This will be my next big life moment...seeing my son wal...

Dad here: Lots of good news this evening, but I'm also feeling a tad introspective after the events of the last two weeks, so I'll get that part out of the way. You would think I'd be better prepared for those long stretches where Elijah is dealing with severe discomfort, but the mind sees what it wants to see, and when Eli's in a good mood I like to tell myself we're finally past all the trial and hardship, at least for a little while. But ever since the feet amputation this year, I've spent a lot of time dwelling on all the hard work Elijah has ahead of him. It's true that all these surgeries have been gruelling on him, but as an infant he at least had the benefit of knowing he could just lay back and relax while Mommy and Daddy managed his pain and tried their best to make him comfortable. (Forget for a moment about how unfair it is to be bedridden.) Now, however, we are interweaving the surgeries and myriad evaluations with a concerted program to get Eli...

I know, I know, the wait has been too long. Here's a photo of one of the new legs. The only reason I was able to snap this photo is because the splint fell right off. At the Shriner's Hospital, Elijah's splints were removed and x-rays taken. The x-ray showed that the bone needed more time to fully set so after molds for prosthetics were made, new splints were set. Less than 24 hours later, one of the splints slipped right off. Eight more hours and the other splint slipped right off. Eli's reaction, "put it back on." So at the doc's recommendation, we have attempted to reattach the splints to protect his bone. On September 20, Eli will receive his new prosthetics. He will spend a week at the Shriner's Hospital learning how to use them and return home with his finished legs. Until then, he is immobilized for the most part, which breaks my heart. The pain is lessening, but I see it in his eyes at times, it still hurts. He improves every day. Eli...

Eli will have his new legs revealed tomorrow. David and Eli are in Shreveport for Eli's appointment tomorrow. Eli will have x-rays and molds made for his prosthetics.We're all very excited for Eli to become comfortable with his new legs. Grandpa Ken asked him yesterday if he was going to "walk walk" when he got his splints off. Eli emphatically answered, "NO" and shook his head to emphasize his decision. He still fears it will hurt. I cannot blame him. He will walk though and he'll wonder why he ever doubted himself. With love, Melissa

First, Eli is improving every day. Every day we can tell he is less frightened for the safety of his new legs. Every day he is even more brave than the day before. And, every day his smile is even bigger. Now for the reason for this particular post. The focus of this blog is the extraordinary Elijah Ramirez. But behind every extraordinary little boy there is an extraordinary sibling shining through...okay maybe not behind EVERY extraordinary little boy, but behind this one for sure. Elijah's Granna wrote about Sophia and her part in Elijah's magnificent journey. Her words made me realize that Sophia is my hero. She is the most unselfish and kind human being I know. She cares for her brother more than anything in the world. She is also extraordinary in her own, unique right! By Anna Ramirez on August 6, 2010 Older Sisters For the first three years of my life I was an only child. Perhaps I felt entitled and was spoiled a little. I can imagine that my parent’s world rev...

From the desk of David: Thank you so much for all the prayers and encouraging words on Elijah's behalf. I cannot drive to the perimeter of my neighborhood without someone waving me down to ask, "Is Elijah doing well after his surgery last week?" I continue to believe your prayers are being heard and answered on a daily basis, so keep them coming. Honestly, it's been a rough few weeks, although the most important thing is this: Eli really is doing very, very well. His sleep schedule is a mess, as always happens after a major surgery, part of a package deal including a grueling road trip to Shreveport and pain medicine that affects his sleep and digestion. But if you ask him if it's affecting him, he'd look at you like you're crazy. He's sitting up for long stretches of time, playing loud and hard with all manner of toys. He's eating nicely, and we've been able to reduce his dosage of pain med significantly since we returned. Even though he's...