Eli's Journey

The physicians had shown us the light at the end of this tunnel, but last night it was again darkened. Elijah dehydrated, again. He has lost 1.5 pounds and looks really thin and fragile. He reminds me of when he was 3 months old before we discovered his severe milk allergy. His bones are far more pronounced than I would like. He remains in the hospital and our hospital routine is becoming very difficult on the family. To all of you who have helped us in such important ways through these 16 (and counting) days, thank you. For your prayers, for the food, for the gifts, for the visits, for help with Sophia, thank you. All of your kindnesses did not go unnoticed amidst our crises and we are deeply grateful for each one. It truly takes a village to raise Elijah and we’re so glad each one of you are a part. Please continue to pray that Elijah will get hydrated and stay that way! His tiny body so quickly depletes of its nourishment. With love, Melissa

Elijah remains hospitalized tonight. The doctor on the case today ordered more tests and more IV fluids to try to figure out why Eli has not recovered from his original diagnosis of c diff. The infectious disease specialist will be in tomorrow to make sure there isn't anything more going on with our little guy. Your prayers are needed and appreciated. Each time Eli starts to seem better, he has a major set back and nearly dehydrates. Today, he is on a lot of fluid and hopefully he will start to be his old self soon. This 12 day hospital stay has been difficult on us. The unknown is hard and Eli's constant discomfort even harder. Thanks for remembering us. Melissa

Eli's chemicals are starting to balance out again. His Sodium Bicarbonate tested at an 8 on Friday (normal is 20-24) and today he is at 18, a great improvement. He is still fighting the c. diff bacteria. Please pray that the good bacteria in his intestine are able to get the bad bacteria back in check quickly. Elijah is still in the hospital and the idea of us going home really isn't yet being discussed. Elijah is eating a mixture of 3/4 his formula with 1/4 pedialyte at a very slow rate along with his IV fluids. His intestine is giving him fits and causing lots of discomfort for our little guy. He is late for his check up with his skull surgeon in Oklahoma City. I'll likely be rescheduling again as the physician only sees patients on Thursdays. It's been interesting for me to try to stay in front of all of Elijah's scheduled appointments to get them cancelled as the days tick by and he remains in the hospital. Elijah is one of the busiest babies! David remains on ...

Dear Friends and Family: Elijah remains at Saint Francis today. He is lucky enough to be among the first children to use the brand new Children’s Hospital, which started accepting patients today. Elijah is doing much better and his internal chemicals are starting to balance out. He still isn’t eating his usual amounts and continues to rely on IV fluids. The goal is to continue to wean him from IV and increase his eating volume. We have had one of our roughest weeks in Eli history. I know my last post was very alarming, but justified. We expect Eli will be released by week’s end. Thank you for remembering him in your daily prayers. With love, Melissa

Dear Friends and Family, Eli is in urgent need of a personal miracle. He has been in the hospital since Monday and last night went downhill quickly. He became dehydrated due to his IV fluids being stopped. His eyes are sunken with dark circles. He doesn’t look like his “new” self and he whimpers nonstop. I am scared. The tests determined he is low in a certain chemical his body needs, probably a result of his dehydration process. He also may be dumping his feedings (please don’t make me explain that one). Upon admittance to the hospital he weighed 12 pounds 12 ounces. Today, he weighs 11 pounds 6 ounces, which is a lot of ground lost and very frightening to me. David and I are in constant communication with the on-call physicians asking the probing questions to ensure Eli is getting the best medical care. We need your prayers, too. Having your baby in the hospital is not only a physical and emotional drain, it requires your absolute keenest attention to every detail related to his care...

A note from the dad: First off, he's going to be fine. Now for the details. We were having trouble keeping food in Elijah on Monday. For those of you in the know, it's a much less painful affair for Elijah to throw up, due to the feeding tube in his tummy; we just open the port, and his food comes flowing back out. Nevertheless, it's scary when your baby can't eat, so Melissa took him to the kids clinic at Saint Francis. After a few hours, they admitted him to the main floors. The tests are back, and it's Clostridium difficile (C. diff). In a nutshell, the antibiotics he's been taking for five weeks (three weeks before the head surgery, two after) have destroyed the good bacteria in his tummy that breaks down food. So now, he's being monitored while we stop the antibiotics and put him on some new medicine. For those of you on your knees praying, please add Melissa, myself and Mel's sister Lori, who all seem to have acquired the same virus Elijah has. We ...

David says "hi"... You know how every parent thinks their kids are the cutest? And you know how they're all wrong, because YOUR baby is actually much cuter? Well, I won't keep you in suspense... you're all wrong. The Ramirez children are the most cutest. Even the term "most cutest" is more cuter than however you describe your kids' cuteness. Here's the secret to raising (rearing? I never get that write) children who are photogenic: Keep them happy. Oh sure, Sophia has some bad hair days--which usually coincide with her dad fixing her hair--but no matter how many stray strands are in effect, when she flashes that beautiful smile, the camera eats her up. I'm pretty sure the psychologists say you aren't supposed to call your kids "beautiful" or "smart," you can only say they do "beautiful or smart things," but this Sophia is one beautiful little girl, and it's not so much her looks as it is her spirit. So ok...

Elijah has two more teeth to add to his current score of two. He has two additional nearly through, which would put him at SIX. I’m guessing this may attribute to his sometimes foul mood, I know it would pretty much send me over the edge having teeth popping in right and left especially since the only thing he really likes in his mouth is his own pacifier. I’m loving it. Photos to come, I promise. So far, so good on the throwing up. He still gets hot and cranky, but we regulate that with our thermostat. Elijah is back to having medical appointments this week, which will keep David busy. Eli still is not sleeping through the night again. A real drag on David. Eli babbles even more and does things with his feet that amaze me. A real trooper! Thanks for your prayers. May you each have a wonderful week ahead. Melissa Ramirez

Today, the nurse returned, David rested and Eli did his usual laughing and playing. We had a good day. David weighed Elijah yesterday and was so excited to report he passed the 13 pound mark. He’s been hovering in the 12th pound for weeks and weeks. Of course, we aren’t counting the weight of his new titanium plates and screws , we are just happy he’s in a new weight class. The most exciting news to report since Elijah’s skull surgery is that he has stopped throwing up nearly completely. Before his surgery, we had become accustomed to the fact that Elijah will throw up about three times a day. For my sweet Eli throwing up means wretching until we open his feeding tube to release the pressure and let everything out. Then, we simply refeed his...well, you get the idea. Anyway, since his head surgery, he has only thrown up a few times, which is miraculous! When he doesn’t throw up, we keep him on his feeding schedule, which is essential to his weight gain. We plan to try his mechanical sw...

Last updated May 24, 2009 I've learned a TON since having Elijah. I felt compelled to share my tips and tidbits with the rest of you. Most of this is only helpful for those living in Oklahoma as benefits vary state to state. Hope it's useful. The minute you realize your kid might be extraordinary (so this is for those of you in slight denial as I was, put yourself on auto-pilot and make these calls): Sign up for early intervention services (called SoonerStart in Oklahoma, but all states have something) Call the Department of Human Services and speak with a case manager about getting your extraordinary kid qualified for Medicaid. There are multiple programs: Eli is on TEFRA . Your extraordinary kid's Medicaid can serve as primary or secondary insurance, so just apply. If you live in the Tulsa area, get your kid on the waiting list at the Little Light House . You can put off the decision of using their remarkable services, but if you aren't on the list, you'll never ...

Elijah’s recovery from surgery continues. He is smiling and laughing and his incision (from ear to ear across the top of his head) is healing nicely. The Ramirezes are struggling this week because our trusted nurse is down for the count with a nasty bug. Elijah hasn’t resumed his all-night sleeping again since his surgery so David is a bit weary. All things considered, we are doing very well. Eli has two very showy teeth now on the lower level. I just love those teeth! We take nothing for granted at our house. Even the smallest of achievements are celebrated with joy. With gratitude and love, Melissa Ramirez

David Ramirez, father of Elijah, reporting for duty: For those who don't know, a Sherpa is one of the locals who lives around the Himalayas and usually serves as a guide and guard for the visiting climbers; "sherpa" has become a generic term for "the one who carries the luggage." So if my son, Elijah, is on a journey--and he is--then I'm the bellhop following close behind. This kid knows how to fill a car trunk. Of course, those of you aware of Eli's journey know that no one carries more weight than he does, even though he's 13 pounds at 13 months old. When he was hospitalized for 11 days after his birth, his doctors wrote "failure to thrive" on his paperwork, a sort of generic stand-in for "low birth weight, cause unknown." I snicker whenever I see paperwork today that still lists this as his diagnosis... No one I've met or heard of knows how to thrive like this little guy. He understands things they can't teach in books....