Eli's Journey

A gaggle of smiling Ramiri, mugging it up for the camera. I've added some fun ones as well. Notice how my wife doesn't care how tired I am... When it's picture time, it's picture time. Watch what you say. Or he will lick you. Sophia is one of Elijah's favorite things to look at. I agree. Gotta love that tongue poking out from behing Clifford! He's going as Gene Simmons for Halloween. (For those Baptists in the audience who have never heard of Gene Simmons or Halloween, it's all on Wikipedia.)

I'm watching "The Final Countdown" starring Kirk Douglas as the commander of a modern-day aircraft carrier that's sent back in time to the day before Pearl Harbor. It's a ridiculous sci-fi premise, but I must admit I'm totally stoked watching all the strum and drang of our fighting men in battle. Just look at those fighter jets taking off! WHOOSH! I'm such a sucker for that. Without sounding ridiculously maudlin, my family is going through a battle of its own, and at the moment we're winning. Elijah, of course, is the real soldier in all this. We drew some blood from his skull today, and although he screamed during, he was back to his happy self moments afterward. Cheri, his nurse, and I agree that his tolerance for pain must be exceptionally high. "Great that he has it, sad that he needs it;" Melissa says the same thing about our handicapped parking tag. Anyway, I think he'll make a great Navy SEAL someday. He's already my hero. We g...

Today, Elijah had his blood work done and he was “normal.” This is very good news for his little body. He is still hanging in the 11 pound area, which is about 1.5 pounds less than his January weight, but the docs tell us not to worry about that right now. Easier said than done, but we are trying. His eyes are bright and his smile contagious and that’s how we like it. For now, we continue to wait for Eli’s next surgery schedule. Thank you for your prayers. Elijah is sporting an annoying runny nose and hoarse throat so please add that to your list for our guy. Such simple things can have a devastating impact for him. Pray it moves on our swiftly with no complications. Love, Melissa P.S. Special thanks for recent acts of kindness to these precious people in our lives (I hate to make a list because it could go on forever, but here’s just a few from the last week or so): Aunt Nina, Grandma Bobbie and Grandpa Marvin, Salt Jones, the Van Meters and Nellie Kelly. We love you all (listed and...

It's been yo-yo-esque the past two weeks, as we try to get a correct reading on Elijah's blood lab levels. You'd think it would be a simple thing -- draw some blood, stick in that thing you see on "C.S.I." that spins in a circle, sit at the computer and read off some numbers -- but it turns out, the numbers are different if you draw from the heel versus an IV in the head, and also how long you wait to stick the blood vial in the spinner, and what time zone you're in, and what's the first letter of you're mother's maiden name... We can't even get a consistent weight. At home he's 10 lb. 13 oz., but today at the pediatrician's office he was 11 lb. 0 oz. For those of you keeping score, neither number is encouraging. On the positive side, he's still in a good mood, still sleeping well at night, and still taking as much food as we pour down him. So there's definitely a mystery happening here, as we aren't sure whether he's in...

Elijah's bicarb was 21, which is in the normal range! He is doing well. We have to feed him every 3 hours around the clock, which makes for a long night, but at least we are home and remaining here. Thanks for your prayers! Melissa

Dear Friends and Family, I hope you have been waiting for an update on sweet baby Elijah. This minute, David has taken him back to the Saint Francis Hospital urgent care clinic to have his blood drawn to check his bicarbonate levels. He’s still out of wack. We checked it last night and it was 19. The doc gave him a quick IV fluid “drink,” but thankfully he was not admitted to the hospital. This morning his bicarb was rechecked to be even lower, so tonight we’re checking it again and hoping for a higher number. His good mood indicates he will receive a lucky “22” on his bicarb, which would be an 8 point increase over this morning. Anyway, I’m pulling for 22! Any time Elijah realizes he’s about to go into his car seat to go somewhere he gets crazy happy. Understand that exactly half the time Elijah is strapped into his car seat, he is being carted to the doctor’s office where he will likely be stuck, jabbed and poked. Exactly the other half of the time he’s strapped into his car seat, h...

We brought Elijah home today. It now takes about two hours to carry all of his paraphenalia from the car into the house. I wonder if this is how a celebrity entourage feels. Bet they get paid better. I'm sure there are a bunch of medical facts I could fire at you all, but it's hard to focus on the bad or the pressing when Elijah is smiling and eating and waving. He's asleep, I'm going to bed, and I pray all the big boys and girls reading this take a moment to reflect on the good things in their lives for a few moments. If that constitutes a state of denial, I figure, hey, everyone's earned the right for one night. More soon, Dave

Seven weeks. Seven weeks in the hospital, including the skull surgery in early February. Seven weeks and counting. Elijah is happy as a clam today, and looking more healthy every day, but there are still several questions about his nutrition and the chemistry in his guts. Basically, the doctors are being extra-cautious. They've tried to send him home twice, both times believing he was all set, only to see him return, and they don't want it to happen again. I couldn't agree more. Pray like crazy. Dave

Note from Dave: I am embarrassed to say that I don't know how many days we've been in the hospital this time, but I never was that good at math, so I'm not excessively embarrassed. On the bright side, I know how to spell "embarrassed." Elijah is back to his old happy self, and it's really neat to see. He laughs instead of cries when the nurses come in, and he isn't in any pain when the food is going either in or out. You have no idea, or maybe you do, what it does for our state of mind to know he's at least moving in the right direction, and he knows it. So what are we still doing here? It all comes down to nutrition. The events of the last two months have burned away the lining of his stomach and intestines. There's supposed to be a bunch of hair-like things (vilia, I think) that absorb food, and make the walls look like a shag rug, but at the moment Elijah's lining is more like a lead pipe. The gastro-intestinal docs are taking extraordinary ...