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...