Eli's Journey

Elijah Ramirez is 2 years old! He absolutely loved all the gifts and exploring new toys. A real treat for us to watch him figure out how to make new toys do what he wanted them to do. He was a real trooper through his birthday party and three Christmas parties. Pics galore to come including Eli eating...licking...icing from his birthday cake. Eli is still throwing up regularly. Not each feeding...so that is actually better, but I remained concerned about that situation. He can even go days without an episode, but it seems to always return eventually. Thanks for your prayers. Love to all! Melissa

Bobbie, Marvin, David and I witnessed Elijah actually hold tight onto a french fry and then lick it repeatedly. He seemed to enjoy it and tiny bits would get in his mouth and he would just smack his little lips. It was simply adorable and if I hadn't seen it myself, I wouldn't believe it. We were at our favorite restaurant . It's actually become a loved tradition for the Groves and Ramirezes to go to this cafe anytime the Groves come for a visit. I swear that they know us in there, but we don't yet say "The usual." Elijah was only happy if he could sit ON the table and explore the wonderful things around him. He would scoot sitting up to go from thing to thing. I had one hand on him and may have given him a few pushes to help him along, but he is really figuring out how to make the best of what he has. He loved looking at the window and seeing the reflection of all the lights and our faces. He really enjoyed pulling on the blinds, which luckily held up throug...

Elijah is feeling well. He isn't throwing up and he is happy and playful. I sense Elijah is frustrated. He wants to do things that I believe his spirit knows he should be able to do, but he cannot yet make his body obey. Elijah was playing in the DVDs in front of the TV and I was in the kitchen. Pretty soon...I didn't hear anything so I walked toward the TV to find Eli nearly to the wood floor of the kitchen. He was on the move to get where he wanted to be. I was really proud, but I know he wants to do more. I look forward to finding and implementing Elijah's mobility solution. Thanks for your continued prayers: Infection free Throw up free Mobile Talking New tubes in ears successful Happy 2nd B-day on Dec. 23. Love to all, Melissa

We are still waiting to hear something from Eli's cranial surgeon. Eli is happy. We've decreased his food intake, which has decreased his vomiting, but that really is not a good solution. Elijah is failing his tempanograms , which is clear indication he has fluid again built up in his ears. It impedes his hearing and further delays his speech development. Tubes in the ears last only a limited amount of time and the ones we placed in Eli's ears about 15 months ago have made their way out. So, we're in talks with Eli's ENT doc too about redoing the tubes and possibly performing a partial adenoidectomy . I was surprised to learn that after the age of about 6 months, one's adenoids do nothing, but fill a space. The fact that they fill a space is pretty important in Eli who had a cleft in his palate. But, we believe the adenoids are one of the causes of his perpetual runny nose. Another dilemma to figure out, but one I know we will get through. We see Eli's EN...

Elijah's eye doc today saw no signs of pressure through Elijah's eyes -- meaning his optic nerves are not under pressure. The news should have sent a sigh of relief, but it did not. Elijah is still throwing up for some reason and he remains sluggish. The eye doc said to totally rule out pressure on the brain, we'd have to do a lumbar puncture. YUCK! I've sent the news to Eli's craniofacial doc and am waiting his reply. Please pray we can find a reason to Eli's nausea and fix it soon. Love and gratitude, Melissa

Elijah's craniofacial surgeon says, "Yes, Elijah has a menigocele ." But, he says it shouldn't be causing him any trouble. They often see menigoceles in kids with craniosynitosis (premature skull suture fusion) and they usually just leave them alone. The surgeon told us to get Eli in with an eye doctor ASAP who can look into his eyes and help determine if their is pressure on Elijah's brain caused from lack of cranial expansion (not the menigocele ). So, in the morning, Elijah will see Dr. Groves. Please pray that if Eli has cranial pressure that Dr. Groves will immediately see it in his eyes. Please pray that we will get an accurate answer to this difficult dilemma. Elijah continues to throw up at each feeding. He is very, very sleepy. But, those of you who know my kid, know that he continues to smile, laugh and make us all overjoyed to know him. Since Eli's throwing up is not a GI issue...the possibilities are not many. We really need an answer so that we...

Elijah was again discharged from the hospital this afternoon. He was diagnosed as having a small cranial meningocele . Best I understand, it is a small bubble filled with cerebralspinal fluid between the brain and skull. Not supposed to be there. We'll be working with Elijah's docs in OKC to determine what needs to be done. Sending a CD of Friday's CT tomorrow and hopefully we'll hear something quickly. We're just doing all we can to help Elijah today and leaving tomorrow in God's hands. Eli is well hydrated and tolerating his feedings. Please pray for a speedy resolution to this new discovery for our little guy. Love you all, Melissa

Docs believe that Elijah's throwing up is caused either from a bug that has really hit him hard or from pressure on his brain. Wow, that's a really big difference. We're still waiting to speak to a brain specialist. Will keep you posted. With love, Melissa

Elijah is back in the hospital tonight. From my last post, you know he isn't feeling well. He's started throwing up every time we feed him. More alarming, he's throwing up through his mouth...okay, so that likely doesn't sound very alarming to those of you less familiar with Elijah's very first surgical procedure. He had a fundoplication where a part of the stomach is wrapped around the end of the esophagus so that one cannot reflux, throw up or burp. I know the outcome sounds pretty awful, but at the time he was starving due to projectile vomiting everything we fed him. Eli's throwing up probably means the pressure in his tummy is so great it overcomes the fundo . Today, the docs have performed a whole list of tests to rule out more severe complications. We're still waiting on some results, but several have come back fine. I have to tell you about the total agony to watch Eli have an upper GI done today. First bummer, he was strapped on a board. Second b...

Well, we've been home since Saturday, but extremely busy with resuming our routine. Elijah has a bug. He isn't feeling well and we hope it isn't anything serious or about to be. He's just cranky, extra sleepy, watery eyes, etc. David will take him to the doc tomorrow if he doesn't improve. He was so well all week for our trip and I really, really want that trend to continue. Please bear with me as I share my heart on two topics: CPR skills and Ripley's shenanigans . Take Red Cross CPR and First Aid, people! You know I work at the Red Cross in Tulsa, but I passionately believe in the work we do. During our trip in Florida, I had to perform back blows on Elijah to dislodge a banana puff that had totally blocked his airway. He wasn't breathing and I didn't panic. I yelled, "He isn't breathing," but I knew exactly what to do. And, shockingly, pretty calmly proceeded to pick Eli up and begin the process of pounding on his back to dislodge the ob...

Mark joined us today for Thanksgiving as a total surprise to all but John. He and Mark made our day. Happy Thanksgiving! Love to all, Melissa

I've included a pic with me in it...didn't want you to wonder if I'm really here. Sophia pics are a special shout out to favorite cousins Makayla and Daniel Reed. Note Elijah doing "rolll it up" in several pics. To those of you out there who questioned if my son could hear: when we say the world "roll," Elijah starts rolling it up with both hands rolling around each other. SO CUTE! Love you all.

It isn't just the season that makes me remember all of my blessings. I am constantly reminded of all I have to be thankful for. I recently listened to a powerful sermon series by Andy Stanley at North Point Community Church in Georgia titled "Why Worry?" Starting the series I was pretty sure I could give Mr. Stanley a pretty worthwhile list of answers to his question. But, listening to his series made me well aware of a wonderful new perspective. By remembering God's faithfulness, what do we have to worry about? The main point I took from his sermon is to do all we can today and not worry about tomorrow. He isn't saying that we can sit around and not work, not be smart or not use our God-given talents to prepare for our future. But, after we've done our part today, there is no reason to worry about tomorrow. We have to remember the God our parents taught us about, the God we taught our children about and the God who has seen us through the dark times IS the SA...

We are having a blast! Special thanks to our house sitters. Keep up the good work. And super special thanks to Red Sky Church Plant! (you know who you are) Love you all, Melissa

Eli's central line was removed yesterday. The doc asked for another round of blood work just to be sure and he put Eli on an oral antibiotic for two more weeks. He had a very low fever this morning. I'm praying for full health, no infection and feeling good (for all of us)! Love and gratitude, Melissa

Elijah and David made the trip to Shreveport on Monday to see Elijah's hand specialist on Tuesday. She says his wrist is fine and that another surgery is not necessary. Ya Hoo ! Plus, she is SURE there is no infection in his bone from his terrible bout with STREP. Hopefully this means that when we see Eli's infectious disease doc on Thursday he will take Eli off the IV antibiotic and we can get rid of that pesky central line coming out of his neck BEFORE we leave for Florida on Saturday. The doc also decided that due to the infection Elijah is not ready for his other wrist surgery in December. That has been postponed to March. For me and David, that is sad news. We want to get through these surgeries so that Elijah can start relearning to use his hands and arms. Plus, we have to get through the wrist surgeries so that we can then schedule the thumb repositioning on each hand (two more surgeries in Shreveport). Elijah deserves to be able to grasp things normally rather than the ...

We had fun! Sophia told this Santa that she wanted a Bratz car. I really am not sure what that is, but the Santa was sure to announce it loudly enough so that someone in the audience would hear. Elijah is doing well. Please pray he remains infection free so that we can go on our vacation as planned. We are all really looking forward to the trip. Love, Melissa

Elijah was discharged from the hospital this afternoon. He came home with his central line still in place with orders for a daily dose of high powered antibiotic for another three weeks. Elijah's infectious disease specialist (that's right, Eli now has an infectious disease specialist...not a doctor you particularly want to get) believes that we should treat Elijah as though his bone was impacted by the STREP infection. Normally, they would have done an MRI to determine if the bone was or was not infected at the beginning of such an ordeal, but since Eli had a metal rod in his arm, an MRI couldn't be done. So, we're treating worse case scenario. In my conversation with this disease doc, I mentioned my concern that this is the second time Eli has gone septic with an infection in his blood (first MRSA now STREP). He agreed that was unusual and worthy of further investigation. So, after we survive this ordeal, we will have a new doctor to see to evaluate Elijah for immune...

Elijah remains in the hospital today receiving IV antibiotics and recovering from yesterday's surgery to prematurely remove the rod in his left arm. Today, I am disappointed to see a more wobbly wrist than I had hoped. The rod was to stay in place until Elijah's bones had fused his wrist straight. That is not the case today. We have applied Eli's splint in hopes of maintaining the correction, but I just do not know if it will work. The docs at Shriners in Shreveport will be the final say next week when Dave and Eli make the trip. Eli is happy until any one in scrubs walks into the room, then he cries until they leave. I don't blame him. He's been through some rough stuff. He isn't sleeping well at night either. Sophia is down right ready for her dad to be home. She and he have a peculiar bedtime ritual that I just cannot fulfill for her. It involves throws, throw downs and walk aways (Sophia's names for the different stuff they do). All I do is read a book...

Elijah is out of surgery. The rod is out. Dr. Ranne and the docs at Shriners consulted to decide the rod must be removed for now. Please pray this doesn't mean another wrist centralization for Elijah's left arm. I think it could go either way. The Shriners would have preferred to have the rod remain another 3.5 weeks, but hopefully the fusing was complete before rod removal today. The Shriner's hope to see us in Shreveport next Tuesday. Eli will remain in the hospital with a central line (also placed today) receiving IV antibiotics. His abscess turned out to be STREP also and not staph. So, he had a STREP blood infection and STREP in the abscess near his elbow where the rod was. I just have to think this was all related, somehow. Today is a gloomy day in Tulsa. It is cloudy and rainy and I think it makes it harder for me to have a sunny outlook. I'm not sure how many times one set of parents can be expected to go through the routine of sending their kid to surgery,...

Eli will not be going to Shreveport today. The Shriner's docs are coordinating with the docs in Tulsa. The Shriner docs do not want the rod to come out today. The x-rays from Friday show the pin in perfect condition and if it comes out today the surgery will likely have to be redone. So, we're considering the options. The Shriners suggest clipping the part of the pin that is sticking out of his arm. Yikes! Please pray for complete healing in Eli's little body quickly with no further complications. Of course, pray that we do not have to do the surgery again. Love, Melissa

Elijah remains in the hospital at Saint Francis in Tulsa. He has STREP in his blood stream and STAPH in the abscess in his elbow, which has been lanced and drained. Eli is on heavy-duty antibiotic through an IV. This evening, we discovered the rod in his arm (placed early September to centralize his wrist) is STICKING OUT of his elbow. You read correctly, we can see the rod, people. So tomorrow we are either headed to Shreveport to have the Shriner docs remove the rod or we'll let the Shriner docs tell a Tulsa doc that he/she can remove the rod. Either way, Elijah is going to have his seventh or eighth surgery (I've lost count). We would really prefer to have the procedure performed in Tulsa, but we just want what's best for Elijah. Pretty scary stuff for our sweet Elijah, but we work through each new issue seeking the best possible solution for our son. We have great support in Tulsa. The long story for the weekend is that I had promised the BEST big sister in the world ...

First of all, the blood culture came back positive. That means Elijah has staph in his blood stream. Now the good news. The best way to treat his situation is with IV antibiotics, and he's been on the best available since Friday night. His fever is still absent, his attitude is great, and he doesn't seem to be in any danger. Also good news: We talked to the GI surgeons this morning, and they explained how to use his new feeding tube button so that he can burp. People, he burped for the first time this morning since last Thursday. That's alarming! So needless to say, he feels much better. Looks like that pin in his wrist is the culprit, both for the bloodstream infection as well as the abcess that was causing him so much pain on his elbow. (We lanced it, and Eli is very glad we did.) So it's Shreveport or bust on Monday. Pray for safe travel, and also, Eli will still have the IV in his foot during the trip (he needs 14 days of IV venkimyicon), so pray that we keep him co...

Friends and family, we could really use some heavy-duty prayer tonight. We brought little Elijah to the emergency room at Saint Francis this afternoon. His elbow is swollen and red, and the pin we placed in his arm is protruding a little. You will recall we straightened his wrist at the Shreveport (LA) Shriners Hospital a month ago, and the pin is keeping his wrist straight as he adjusts to the new bone structure. The first thing they found was that his white blood cell count is very high, which is a laymen's term for "He's sick." One of two things is probably going on. Either he's got a staph infection that's irritating his elbow and skin, related somehow to the pin getting out of place, or there's some actual blood poisoning going on. People, we DESPARATELY don't want it to be the latter. Pray pray pray PRAY tonight that Elijah can get through this quickly and with as little pain as possible. We're staying at the hospital over the weekend, with a...

Elijah's Mickey button is leaking and leaking and leaking. We had a horrible morning on Monday when Elijah's nurse discovered his Mickey button had popped out of his tummy leaving the exposed hole for part of the night. She and David rushed immediately to put in a new button, but Eli started non-stop, screaming. Not fussing, but screaming. The "I'm in PAIN" scream that I clearly differentiate from the I'm bored or I'm tired cry. It was frightening and I was just on the other end of the telephone. They rushed him to the surgeon's office where he was fitted with a new, larger button and the screaming stopped (an hour and a half after it began). Rough morning. But, since, his button has been leaking, which is a real problem because he is leaking important gastric juices necessary for proper digestion of his food and his calorie-containing food too. We'll be headed back to the doctor to seek a solution to this problem. Other than constantly leaking hi...

This photograph was taken before his latest hair cut, but isn't he just adorable! We recently purchased Elijah a new infant car seat. Yes, he is nearly 2, but his size is such that he requires continued use of an infant seat. The one we were using belonged to Sophia and had seen FAR better days. I feel much better taking him on six hour car rides now that he has a more comfortable and secure seat. He has also learned to scoot himself. My mom announced to me "You didn't tell me he could crawl." I was dumbfounded because I hadn't really seen it yet. Although I had heard from Eli's nurse that she had been working on crawling, I hadn't witnessed the magic. He lays on his side, pushes his legs forward and then moves the top of his body along with it. His technique is as unique as Eli himself, but he can fetch toys in his sight and that is a HUGE accomplishment for him. We are also working on his use of his electric chair. Going very well and now we get to convi...

Hello Friends and Family, It has been a while since I've been able to post. Life just seems to keep me hopping most of the time. This evening, I have a brief window of time at home alone. Happens so rarely that I hardly know what to do with it. I suppose I'm busy waiting for the family to return. Today has been one of those days in life that I'd rather delete. Eli is fine. Sophia is fine. David is fine. My dad tells me about the guy who felt sorry for himself because he didn't have any shoes until he met the guy who didn't have any feet. Well, I have to say that I stopped judging my pain against the pain and agony and trials of my fellow man a few months after Eli joined our family and I regained my mental stability. Well, perhaps it was more than a few months...but that's where I am now. I know that some of us have to bear larger loads than our fair share. Some of us are bearing enough for seven or eight lifetimes all hurled on top at once. From there, we just...

I got yelled at today for not posting again once Elijah returned home from Shreveport. Well, it's Friday afternoon, five days after we left, and we finally made it. Just kidding. We got home Tuesday night, and it feels very good to be here. Elijah looks great. He's playing, babbling, sitting-up, and loaning me cash. Dave

Well, we just landed in Louisiana, and boy are my arms tired. But nowhere near as tired as Elijah's arms. We're doing some X-rays on his left wrist, to confirm the position of the rod after the surgery. I'm not expecting any bad news, so pray that we survive this trip with our sleep schedules intact. PEACE. Dave

We visited the monthly meeting of the Tulsa chapter of the Shriners. The building says "Akdar Temple," but I don't know if that makes them an "Akdar Chapter" or "Branch" or "Subdivision." I had enough trouble remembering what Webelos meant when I was in Cub Scouts. They've asked me to join, and although I think they were sort of kidding, I might just have to do it, if only to figure out why they carry those excellent fez hats around in plastic cases. I used something similar to haul my trombone around in high school, but the hats look more expensive. I've got to have one. They meet in the fellowship hall of their building and eat, followed by a stage presentation where they go over monthly minutes and schedules. Melissa and I set up a PowerPoint presentation with 37 pictures of Elijah from over the past 21 months. It's alarming to see how small he was, literally gaunt, frail arms with no muscles, and he hardly ever smiled even whe...

1. Elijah With Cast... Elijah Without Cast 2. Kisses From The Boys 3. This Is Sophia Thanks for watching!

Elijah received an electric chair last week. Technically, it is an awesome power wheelchair designed for a 2 year old. David says I cannot call it an electric chair for obvious reasons. But, I love to make David laugh and since EVERY time I refer to the thing as Elijah's electric chair, David cracks up...it is officially the electric chair. Imagine a seat small enough for Elijah with a little room to grow sitting on top of a large box for a battery and four wheels. That's Elijah's electric chair. As I type this I wonder why I don't just go down stairs and take a picture of the thing...I'll do that soon. The electric chair needs some adjustments, which Elijah's physical therapist is coordinating. Soon, the tiny joystick will be situated in Elijah's lap and he will be taught to make the chair go where he wants. I cannot wait for him to get the hang of it. David and I made the unofficial decision that the electric chair will be for the house only. The thing wei...

I would really like to speak to the person who wrote about their friend with Rapadilino, please contact me directly at melramirez22@yahoo.com or leave me some way to get back in touch with you here. Elijah is diagnosed with two mutations on his RECQL4 gene. The only three syndromes associated with this gene mutation are Rapadilino, Rothmond Thompson Syndrome and Baller-Gerold Syndrome. Elijah's geneticist says Eli has symptoms of all three. I would just love to speak to someone else with Rapadilino...or a parent or a friend. To the rest of you: Elijah has a watery eye. Doc says he has a cold in his eye. This afternoon, after the doctor's visit, David and Eli spiked fevers of 101 and 102 respectively. They truly share everything. : ) Anyway, we need a rapid bounce back from this upset. On a great note, Eli weighed in at 15 poudns 4 ounces today at the doc's office. He's regained any ground he lost during his wrist surgery. Yay kiddo! Love to all, Melissa

To the right, Eli having pure fun! To the left, you can get a great view of Elijah's new wrist. We left the sock over his incision, but I'll give you a visual: stitches literally all the way around his tiny wrist, like a watch. That's a band aid on his elbow. Before, he wouldn't have been able to hold his hand out straight the way it is here. And, whenever he would attempt to move his fingers, he'd only move his hand. To the left, another great shot of Elijah's new wrist. Straight out, baby! Soon, I'll post a photo to show you how with Eli's wrist straightened, his thumb looks even more like a thumb. It needs some surgical intervention to be totally useful, but it just looks like a thumb rather than a finger. Can I hear it for the Shriners? Hip hip hurray! On another note, I received a piece of mail today from the Shriner's Hospital in Shreveport. Do you know the relief I feel to not even have to be concerned that they are sending me a bill? I mean, ...

Not yet 2 years old and Eli has made front-page news in the Tulsa World today. You will enjoy reading his story on line at http://www.tulsaworld.com/news/article.aspx?subjectID=11&articleID=20080920_17_A1_Meliss366349 . We were honored to make the paper and have the chance to share Eli's inspiring story with even more people. If the story today has brought you to Eli's blog for the first time, welcome. Here is where you can learn more about Elijah's journey as we conquer his unique set of challenges. We welcome your comments and encouragement as the days, weeks and months pass and Eli proves anything is possible. He is truly a work of art by our Heavenly Father. Now, he sits in my lap as I type. He sits. I remember the days when I wondered if he would ever be able to sit and today, he's proven he can do it. I know Eli has many, many more of these feats up his sleeve. More video soon and the BIG reveal of Eli's newly constructed wrist and arm very, very soon. Ch...

Elijah loves to clap when someone claps with him. He was a bit leery to clap when his arm was in the cast, but he picked up the habit again right before our last trip to Shreveport. Now that the cast is gone, he is once again an enthusiastic clapper. But he's a bit confused about why his hands don't face each other like they did. Tonight, he stopped clapping and stared at his newly straightened wrist (encased in a plastic brace), just stared, as if to say, "What's the deal here, people?" Then he shrugged, and started clapping again. As you know, the plan is to straighten out his other wrist in early December, to make him a more capable clapper. You have GOT to see this new hand. His fingers are pointed the correct direction, and they're already gripping objects with more success. He's not really feeling any pain at all, as long as we're careful. Even the extension in his elbow has been maintained. It's all very exciting. I'll have to post a pic...

Elijah is so demanding. Here it is, only two weeks since we went to all the trouble of subjecting him to a very nice wrist surgery, and he's making us drive back to Shreveport to get the cast removed. Next he's going to order me to feed him grapes and fan him with palm leaves. Which I would gladly do. I'm writing tonight from La Quinta Hotel, and I think I finally got the kiddo back to sleep. Just wanted to let you know we feel the prayers you send our way, and we're having more fun than we're supposed to. We rode here in the Shriner's van, just the two of us and our new friend Marvin the Shriner. He plays Beatles songs on his classical guitar, so we had plenty to talk about. Also, we share a common interest: buffets. He kept the air nice and cool for The Eli the whole trip here, and we both got some sleep on the way. Eli and me, not Marvin and me. Wish us luck as we get Elijah's cast removed tomorrow, and keep us in your prayers as we travel back home. Davi...

Elijah is home and happy to be there. He is recovering from his wrist centralization surgery. He returns to Shreveport to have the cast removed and a splint put in its place in one more week. He is becoming more accustomed to the cast, but he isn't loving it. He is still experiencing some pain and discomfort. Possibly more from his more severe cold than from his newly reconstructed arm. He laughs and plays, which are very good signs. Thanks for your prayers and we will keep you posted here. Love, Melissa

Elijah is doing so well that the Shriners are releasing us this morning. We'll leave town around 10:00 a.m. and get home early this afternoon. Sophia, here we come! Your prayers have been felt and heard. Thanks for all you do. Keep us in mind as Elijah travels home this morning. We want him to feel as little pain as possible, to be comfortable in his carseat, and to sleep sleep sleep. Plenty of time to play and giggle once we're home. Dave

Elijah is out of surgery. Yes, I'm tardy in posting, but I know you understand. His surgery lasted the expected 1.5 hours. The surgeon's report was that everything went well AND when he came to our waiting room to report, he actually smiled at us. I've been so critical of surgeons (and surgeon assistants) who walk into the waiting room and have a scowl the whole time they are walking up and about to speak. Don't they know that their face speaks a thousand words and that perhaps the scowl is not speaking what they intend. Anyway... Eli slept for a few hours (photo above) then woke to discover his arm is in a cast from top to tip. Turns out I am glad we only did one arm. Can you imagine his anger to wake up with both arms wrapped up? The Shriner's Hospital is nothing less than amazing. The staff's care and concern for every part of the child's experience here is superior. I have to admit the sour taste of reality our first surgery here has been. I know that we...

Elijah is in surgery having his left wrist centralized. The Shriners are certainly the experts in making going to surgery anxiety free. Eli received a cocktail of drugs this morning so that nothing bothered him. His "I don't care" cocktail. It worked wonders. We are waiting and expect he will be finished within the next hour. Much love, Melissa

Elijah will have wrist centralization surgery on his left wrist (not both) tomorrow (Wed., Sep. 3) at 7:30 a.m. The procedure will take about 2 1/2 hours. Blood loss will be minimal, as will the dosage for the anesthetic. He had a great day at Shriners today, he should sleep well, and we expect good things in the morning. Pray that Elijah's surgery is a wonderful success. Pray that he experience as little pain as possible. Pray for the surgeons, nurses, and therapists waiting back home. Thanks a heap. David

Elijah is watching "Finding Nemo" as he fights sleep, lying in his pack-n-play in Shreveport, LA. The wind and rain are fierce outside, but no one seems to notice. I thought I'd take some time and get more footage of our adorable pal on the blog. Enjoy. 1. Elijah in Shreveport - Part 1 2. Elijah receives a special gift from Rhode Island 3. Two Kids Laughing: Our good friends--and heroes to Elijah--Tony and Cherry Cooper are visiting this week from Los Angeles, CA. Tony is Melissa's cousin, and he raised some money recently for Elijah by taking part in a community fundraiser. He brought his son Ayden to meet Elijah, and the results were hilarious.

We are in Shreveport and checked into our hotel for the week. Shreveport has been inundated with evacuees from the gulf coast. Shreveport itself is preparing for floods, tornadoes and high winds. We are happy to be here, nonetheless. The Shriner's Hospital told us that as long as the hospital has power, the surgery will go on as planned. We decided to make the trip with faith all will be fine. Eli has a runny nose and a cough. Ugh! Please pray he makes a miraculous overnight recovery from anything brewing in his body. Right now he is sitting on the big bed watching Finding Nemo on the tiny DVD player. He is so happy. More from us soon. Much love, Melissa

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...