Eli's Journey

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 l...

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 CAMERAWOMAN: Melissa CAST: - Elijah (boy fixated on banana puff) - Sophia (narrator) - Grandma Bobbie (prop)

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 muscl...

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 condu...

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! Love, Melissa

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 neighb...

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 occ...