Saturday, August 30, 2008

Preparing for Shreveport

We are gearing up for Elijah’s wrist centralization and forearm bone straightening surgery on Wednesday.

We are watching Hurricane Gustav closely. The Shriner’s Hospital in Shreveport is the emergency evacuation plan for the Shriner’s Burn Hospital in Galveston. If that hospital has to evacuate, the patients and staff go to Shreveport and hand surgeries for this week are cancelled. We really do not want Elijah to have to wait any longer for this important procedure. Scheduling has been very difficult. Please pray we get to keep our date and the children in Galveston's hospital get to stay there where their treatment can continue.

I hope you enjoyed Elijah’s video. Expect many more of those thanks to our new high-tech gismo.

Please keep us in your prayers this week as we travel, endure surgery and recovery and return home.

Specific requests for your prayer time:

  • That Elijah will remain healthy through surgery week and not have to fight any bugs.
  • Pray that Sophia will be comforted left behind with Auntie Lori, Uncle David and her favorite cousins.
  • Pray for traveling safety for the three Ramirezes and my parents Ken and Sue as we make our way to Shreveport and back home.
  • Pray that Elijah’s surgery will be incredible and that his recovery will be pain-free and fast.
  • Pray that the doctors will find that doing both arms at the same time is best for Eli. As parents, we hope he will be put through as few surgeries as possible, but we definitely want what is medically best.

We love you all and value your prayers and concern. We will update the blog throughout the coming week...hopefully with check back often.


P.S. We have someone spending the week at our house while we are gone.

Wednesday, August 27, 2008

See Eli Eat

We have a real treat for you today, people. Here's a video of Elijah eating a Gerber Banana Puff. Melissa did zoom out, but she got the shot. Great work, Mel. This is the end of the video; it took the boy about four minutes to lift the puff and push it into his mouth, but he pulled it off. Last night, he was sitting in his high chair, and he leaned down and picked one up. He does NOT care what you think he can or cannot do. He sticks his tongue out at you in defiance. Or hunger. Or both.

CLIP: Eli Eats
- Elijah (boy fixated on banana puff)
- Sophia (narrator)
- Grandma Bobbie (prop)

Thursday, August 21, 2008

Did someone say 15 POUNDS?

You may have noticed some sudden changes in our blog. I have to admit that I deleted our last two entries. They were okay for the most part, but I just didn’t feel good about my entry and I told David to post over me and get things right and I think he made it worse. Anyway, please excuse our weird-ness today.

I have to tell you that Elijah is doing better than ever before. He had a bout of MRSA staph infection on his skin and he fought it off and it didn’t turn into anything worse. I had that sinking feeling that a hospitalization was on his horizon…any time you say the word MRSA I auto-think: hospital. Thankfully, Eli did great and he is over it, which, of course, is a very good thing considering his next surgery is on September 3…only two weeks away.

I think my dad put it best last night when he said, “I’m getting so excited for Eli.” You see, this surgery will be one that will help Eli’s ability to do stuff. His wrist will not be so floppy, which will make him able to use his muscle to move his hand rather than to move his wrist. You would be so impressed to see Eli make the absolute best of what he has right now. But I am thrilled that we can give him more resources to accomplish whatever it is he wants to do: shake a rattle, stick a pacifier in his mouth or scratch his head.

PLUS, THE BEST NEWS OF MY DAY! ELIJAH WEIGHS 15 POUNDS!!!!!!! He literally blew through the 14s. I know my kid and he might fall back below 15 for a week or so, but to even see 15 on the scale is a HUGE accomplishment for his little body, which is pumping so hard to grow, grow, grow. Please keep praying that Eli will grow in length and weight.

Honestly, I am not worried about the surgery in Shreveport at this time. I know it will creep in as the days count down, but Elijah has survived so much and fought so hard, I expect this upcoming surgery will be no different. Please pray for Eli to have a quick and easy recovery as well as remarkable results!

We took Elijah to church on Sunday and we were able to stay to the very end. It cracked me up to hear Eli say "da da da" right in the middle of the sermon. David swore he said da da the other day, but wouldn't do it again for me. I'm counting the church da da though! Yay Eli!

Sophia started first grade on Wednesday. Special shout out to the Grahams for providing her school supplies. Thank you!

To a fabulous week for all!

Tuesday, August 5, 2008


Today, I write to share great news, great news indeed!

Elijah Ramirez can hear unaided. HE CAN HEAR!

Today, Elijah had an ABR test done to determine his hearing abilities. He was put to sleep with an oral sedation medication. Then, sound was piped into his ears and electrodes measured his brain’s response. Eli’s results were awesome! His right ear is normal and his left ear has minimal loss. I cannot describe to you our joy! Eli deserves this miracle! I’ve included Eli’s hearing on every prayer request I’ve made even though doctors and therapists told me that your hearing is as good as it gets at birth. It may get worse, but it won’t improve, they say. They are wrong.

Elijah originally failed his newborn hearing screening in the hospital the day before his discharge. He failed his first ABR a month later at the ENT’s office. He was then diagnosed with mixed (conductive and sensorineural...the only two kinds) hearing loss in both ears. We were devastated! He was fitted with a bone conduction hearing aid. He hated it. It is no more!

Even more good news on the Eli front. Yesterday, he sat, unassisted, in his bath water playing with his new bath toys for FIVE minutes. The photo with this post is of Elijah sitting on our kitchen counter (don’t worry, helpful hands were nearby although cropped from the photo).

Elijah is thriving! His surgery is less than one month away to correct one or maybe both wrists at the Shriner's Hospital in Shreveport.

Please accept my sincerest appreciation for continuing to remember sweet Eli in your prayers.

Love you all!

Sunday, August 3, 2008

Elijah’s Favorite Things

Elijah’s favorite movie: The Incredibles
Elijah’s favorite color: red
Elijah’s favorite person: daddy
Elijah’s favorite thing to do: GO
Elijah’s favorite sister: Sophia, of course
Elijah’s least favorite thing to have done to him: (this could be a long list, but for today...) brushing his teeth
Elijah’s favorite thing to do with his nurse: ride in the wagon
Elijah’s latest achievement: turning the pages of a book without being asked (he was watching Sophia flipping pages in a small book and he just reached down and flipped the page)
Elijah’s favorite toy: Clifford
Far second: his rattle that lights up

Elijah has personality!


Saturday, August 2, 2008

When the Abnormal Becomes Normal

Yesterday evening, Sophia rediscovered a ball pit toy that we had stored in our attic. The ball pit was a gift for her second birthday. I was actually amazed when she acted as though she’d never seen it. I mean we didn’t put it in the attic the day after she received it. The giant thing hung out in our play room for years being ignored. So, yesterday, the ball pit had its second chance in the play room. (the normalcy is coming)

David came up where I was blowing the pit up (don’t worry, I was using a small air pump that Granna so smartly bought for David a few years back). He sat Elijah in the pit and Eli just thought that was grand. He sat there watching as the air made each section expand and play its part. David moved the balls around Eli and he liked that.

I teared up watching my son be normal and then I realized, he is my normal. He is normal. We are normal again. No outsider would call us normal. In fact, early in the evening I was answering probing questions from our sweet neighbor kids who will watch Eli grow up, too. One asked why Elijah needs “all this” to eat as she pointed at his IV pole and the odd bag on it. I just responded “he needs it to gain weight quicker.” She and I were fine with my normal answer. Another child asked why he has so many boo boos on his skin. I said “that’s just his skin and it doesn’t hurt him, here touch it.” She and I were fine with my normal answer. “Why are his hands like that?” My response, “They just are.” (okay, I admit that one is a really hard one to answer, but still a pretty normal answer.)

I'm really glad they didn't ask me why he's been a baby for such a very, very, very, very long time. No way to really make that normal.

So, from the at least "semi-normal" Ramirezes, thanks for your prayers. Elijah has a way to go.

With love,

Friday, August 1, 2008

Perception vs. Reality

Why do I always give my blog entries such pretentious titles? Because I'm pretentious.

I'm not at my best this evening. It's five 'til 2:00 a.m., and my little man Eli Bo Beli has been awake for about two hours, first with stomach pains (pretty routine, just gas), then with hunger, and finally wanting to play. He sat in my lap and batted my hand back and forth while I watched an episode of "Arrested Development." I'll have to re-watch it later, because I'm not even awake enough to tie my shoes. Also, I have a particularly bad headache, which is (surprisingly) unrelated to the lack of sleep. No one really knows what triggers them, just that when they hit, they hit hard.

I had the headache earlier today when I spoke to my grandmother. She asked how Elijah is doing, and there was real excitement in her voice. Everyone knows that the boy is fast approaching 14 pounds, and Melissa and I know better than anyone that his weight gain is something that only occurs when he is in the best of health. What a chubby little kid! So many factors have to fall into place like puzzle pieces, and right now, they are. I rewarded my grandma with the news she wanted to hear: that he's been in a really good mood all day, playing well with Miss Kim (his wonderful nurse), wearing his arm braces without fussing, practicing sitting up on his own.

There's no way to type these achievements without feeling a real sense of joy, and yet, I just feel crumby tonight. If I allowed myself, I could just as easily rattle off the list of challenges (that's corporate-speak for "problems") Elijah faces in the weeks ahead. For example: His mobility is of primary concern to his in-home therapists, and when they get to work on him, he'll be sore and cranky and perhaps even feeling some real pain in his delicate limb joints. I believe in my deepest soul that I'd take that pain from him if given the chance, but if that's true, then why do I whine so much about my headache?

We have a propensity for blowing things out of proportion, for both selfish and noble reasons. If I want you to feel sorry for me, I'll complain more than I should. If I want to convince myself I'm not feeling bad, I can exert some willpower to improve my attitude, but the pain still lingers; this is why people who break their index finger don't go to the doctor for weeks. Maybe the toughest challenge we face as frail humans is the mighty task of describing a situation accurately, without hyperbole, but also without denial.

So here's the most honest assessment I can make of the current situation: No matter what else is going on in my life, no matter how I feel tonight or tomorrow or ten minutes from now, I know that Elijah is getting stronger and stronger every day. He's not strong enough to crawl, but he wants to crawl, and that means he's strong where it counts. The people who care for him day by day, hour by hour, know what it takes to examine his little body objectively and with compassion, and that allows them to make not just good decisions but the best decisions about how to make him feel better, how to keep him healthy, and how to improve his situation in the present as well as the future.

So if someone calls me and asks how Elijah's doing, and I feel like griping about my head or painting a picture about Elijah's woes, but instead I say he's doing great, no matter what's going on in his life or my life, I'll be telling the truth.

And here's another thing I know to be true: No matter how much I wish the situation were different, I know God has Elijah in the palm of his hand, and everything's going according to His plan, and yeah, there's a plan. It's so great that God's promises don't depend on how we feel toward God and his promises.

What do you know! My head is clearing. Drugs are awesome.

All of a sudden, I just want to crawl in bed. So I'm gonna.

Dave out.

P.S. Manny Ramirez is no longer on my Christmas card list.