Saturday, April 26, 2008

Picture Time 1 of 4 - Eli and Friends

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.)

Wednesday, April 23, 2008

Baby is go, I repeat, Baby is go

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 got the results from today's labs, and his levels are all looking great, which is not something we take for granted anymore. He's even starting to gain weight very, very slowly. Now that the wrist surgery in May is postponed, we don't really have any pressing schedule demands that make us have to hurry and bulk him up. It's nothing but eating, playing and watching the Red Sox until the summer's over.


I must admit -- and I think all of you can relate -- that I'm tempted to only focus my energy on prayer and request for your prayers when Elijah is suffering, and when he's not, I tend to forget think about other things. Call it denial or escapism, but when I know he'll soon be back in the operating room, I try to ignore the sense of need and just have fun.


But it's important that I, and all our friends and family, continue to keep Elijah in our prayers. We must ask Jesus to protect him as he faces challenges that no one, let alone a baby, should have to face, but even more importantly at times like tonight, when he's sleeping soundly and I'm watching old movies between feedings, we must say thanks to God for the blessings he's given us. Elijah is God's gift to us, and freedom from pain and illness is God's gift to Elijah, and we praise him for his mercies.


We've modified Elijah's eating schedule slightly, so that I'll start sleeping through the night again very soon. That means you'll have to visit someone else's blog for the kind of esoteric ramblings you expect from Late Night Dave. Just know that we continue to need and appreciate your support, and that little Elijah is enjoying a rare season of peace and quiet. Thank God for small favors.


Dad


P.S. This post's title is an homage to "Thunderbirds Are Go," another classic military drama. Except instead of aircraft carriers and Kirk Douglas, they had space rockets and marionettes. Same song, different verse.


P.P.S. I've got to get out more.

Bright eyes

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 unlisted)!

Thursday, April 17, 2008

Pray For Elijah's Tummy

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 danger or not. We're going to slowly increase his food amounts, but if we do it too quickly, well, you can just guess how much we'd like to avoid another hospital stay.

PRAY LIKE CRAZY that we find the correct procedure for feeding Elijah, day-in day-out, so that he gains weight, doesn't have any problems absorbing food, keeps all his levels (blood sugar, bi-carb, iron) at appropriate levels, and doesn't dehydrate. We've come too far to move backward now.

Elijah's Shriner's surgery for May has been postponed due to his current nutritional crises. We will have a new date after May 20. We are discouraged by this, but want Elijah to have everything working in his favor for an incident free surgery.

Dave (Daddy)

Saturday, April 12, 2008

Lucky 21

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

Friday, April 11, 2008

E-mom discovered

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, he’s coming home from the doctor where he’s likely been stuck, jabbed and poked. Still, his arms fly and his smile shines when he sees his car seat being prepped for his arrival. Eli is a “glass half full” kind of guy. For this and a slew of other reasons, I just love him!

My great news: I met an e-mom with an almost 11 year old daughter with Elijah’s same condition (or very close). They live in Belgium and I communicate with her via e-mail. My heart is filled with joy! She reports not being able to find a child like her’s when her daughter was young, but now she is willing to be my long-distance kindred spirit. One who has traveled this barely-traveled road before me. This has been a deep desire of mine for nearly 16 months. God has answered my prayers for a friend with a deep understanding of my trials. I hope one day our families will meet in person.

Other exciting news: David and I have been searching for avenues to earn the financial resources our sweet Elijah will need in the coming years and decades to make his life the absolute best it can be. Although we are pursuing several avenues, one of them lies in a direct marketing endeavor that the company won’t let me name its copyright-protected name in a blog. That un-named awesome, health and wellness company launched new products this week that are simply amazing. If you are willing to let me share the details of this endeavor with you personally (think redirect the money you already spend on skincare, cosmetics, weight loss, vitamins, etc. to a line of safe and beneficial products that you order directly on-line at a discount), send me an e-mail at melramirez22@yahoo.com.

I promise I won’t leave you wondering about that bicarb number for long, so check back on Eli’s blog soon.

With love and appreciation,
Melissa

Tuesday, April 8, 2008

Home Sweet Home... and I mean it

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

Monday, April 7, 2008

Still still still in the hospital

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

Friday, April 4, 2008

Elijah = Chemistry Experiment

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 steps to produce the perfect ratio of formula to IV fluids, as they prepare Eli to once again go home without the IV. They've also given him a new formula to replace the Neocate (remember, the anti-carb stuff), and tonight he starting a THIRD formula, one that's much less exotic (e.g. easy to buy at Wal-Mart) and soy-based. Still, it's new to him. What's more, they're adding different sugar compounds to see what he'll tolerate, in order to bolster his carb intake. Reminds me of chem class in high school, all those measuring flasks and bubbling beakers and whatnot. I never knew what those guys were talking about, either.

Elijah has slipped slightly in his weight, to 11 lb. 10 oz. His weight is a genuine roller-coaster ride, and the only thing that will stop the cycle is regular formula-only feeds and lots of sleep. The goal is to go home on Monday or Tuesday of next week, but we know what it means to go home TOO soon. Trust me, as long as he's getting really good care from the nurses and docs, we're in no hurry to leave.

Just the same, keep those prayers going full force.

David