Wednesday, February 27, 2008

Hopes of going home postponed

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

Friday, February 22, 2008

Remaining in the hospital

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

Tuesday, February 19, 2008

Elijah's Balance

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 the night shift with my mother and me juggling days and my job. My sister and friend Marjorie are helping keep Sophia a sense of normalcy through these weeks. She is a real trooper!

Thank you for remembering Eli in your daily prayers. I miss his usual smile and giggle. I really want him to feel good again.

David and I are weary, but we carry on.

Love,
Melissa

Monday, February 18, 2008

Elijah's recovering...again

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

Friday, February 15, 2008

Eli needs your prayers

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. I double check everything the doctors say and make sure they are all on the same page. I question and double question when I am in doubt. Today, it became very obvious that his fluid intake was far too low. I do believe it is being addressed tonight, but Eli’s recovery from his dehydration has not been swift.

Please pray for my Eli.

With love,
Melissa Ramirez

Wednesday, February 13, 2008

It's always something... Eli hospitalized

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 feel terrible, but at least I've still got my looks. Big thanks to the staff at the hospital for EVERYTHING they've done for Elijah this year. Also, we'd be in big, big trouble without Mel's mom Sue holding all our hands this week. Sue, stay well! You're the last one standing. Lastly, keep one person in continual prayer: Cheri Tanner, the day nurse who cares for Elijah 40 hours a week, every week. The sooner we get Elijah home, the sooner she gets back to work.

Dave

Sunday, February 10, 2008

That is one happy baby

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 okay, now you and I are on the same page. And yes, you're right, you do have a beautiful child, unless he kicks me in the shins again. That's something that's neither beautiful nor smart for him to do more than once.

There's been quite a bit of discussion about Elijah's looks the past few weeks, beginning with his cranial-facial surgeon telling us before the surgery that we would need "a few months" to "get used" to how different he looks. That's not something a parent wants to hear. We expected the worst, but you have no idea how RELIEVED Melissa and I were when we saw him post-op. He just looked so... good! Better, you know? Healthier, with the frontal plate of his skull moved forward to protect his eyes, with a more masculine, better-defined ridge above his eyeballs. I think I remember Melissa giving me a high-five before we even shared a hug.

The swelling set in, and there was definitely an angry-furrowed-brow thing going on for about ten days, but now his eyes are as wide open as they were before the surgery, and the definition in the eyebrows is still there, and he's just stinkin' handsome. Handsome, I say!

Frankly, it could have turned out differently, and I thought about that to some degree, but mostly I didn't worry about it, and I'll tell you why. That first week, when Elijah was hopped up on pain meds and antibiotics--the big stuff, with the "-dine" suffix at the ends of the names--even then, he was actively searching for things to smile about. He'd get excited at hearing a voice, or feeling his stuffed dog, or the touch of his mom's lips on his tummy. He was obviously feeling a lot of pain, but that smile kept returning and staying longer and longer.

Maybe I'm convinced that my kids are cuter than other kids because they always (well, exceedingly) smile when I ask them to, and they do because they think I'm funny or kind or safe. But if it sounds like I'm describing myself as a parent who keeps his kids happy at all times, forget it. My brain has been bad recently, suffering sleepless nights and worried evenings, but through it all, Elijah and Sophia keep laughing and grinning at the simplest things. Trust me, you can't be more amazed than I am. Where does a gentle spirit like that come from? How does an infant make the decision to have a good attitude toward life? I'd say we were lucky, except I don't believe in luck.

Score Four

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

Thursday, February 7, 2008

Eli's Uniquenesses

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 swing again and see how he likes it. Before, I’ve been concerned about doing anything that might jostle his delicate intestine. Please pray his “no throw up” continues.

I know that some of you are new to the Eli Journey so I want to take a quick minute to catch you up on what makes my special boy so unique:

  • Eli was born without thumbs or radius bones in both arms. The hand specialist at the Shriner’s Hospital in Shreveport questions whether Eli’s unique formation may actually include a misplaced thumb and a missing finger, but it matters little as the digit that will be used as his thumb will need to be surgically repositioned.
  • Because of his missing radius bones, Eli’s hands are “clubbed” as they call it in the medical world. Just look at his photos and you’ll understand what this means. Because of this, he will be having a wrist centralization surgery and forearm bone straightening in May. That will give his wrists the stability they need so that he can use his fingers.
  • He was born with a cleft in his soft palate, but that’s old news as it was surgically repaired in September 2007. You also may have gathered that Eli had a skull surgery that was to open a prematurely fused suture and reconstruct his forehead giving him a well-defined brow.
  • He also eats through a surgically placed feeding tube in his tummy. At one month old, Elijah started throwing up all of his food (hummmm) so he was hospitalized for loosing weight. The doctors decided to give him a feeding tube and fundoplication (tightening the opening of the esophagus into the stomach to prevent throwing up). So, we started pouring formula into Eli’s stomach only to soon discover he was severely allergic to the milk in the formula. We soon found Neocate for him and he immediately ran right through 5 pounds into the 6s and beyond.
  • Elijah was also born with club feet. The only uniqueness we were warned to expect in our sweet baby. We worked hard with serial casting to realign his feet. Upon his first visit to the Shriner’s Hospital in Shreveport with their leg/foot specialist, we were told that Elijah was born without knee joints. His leg bones are fused at the knee in a near right angle. He is also missing the growth plates in his leg bones near the knee where the legs do the majority of the growing. With this news, we were told that Elijah could have straight legs his whole life, bent legs his whole life or amputate his legs and give him prosthetics. This was a haunting decision. At our next visit in Shreveport, the kind doctor took the decision from our hands and said that what we need to do is surgically straighten Eli’s legs, amputate his feet and fit him with a prosthetic at the end of his leg that would treat his leg like it was just the top half. So, his prosthetic will have a knee, lower leg and foot. His legs are symmetrical. We expect this surgery by year’s end after his hands and wrists are repaired.
  • Wow, that’s not really a “quick minute” is it? But there’s still more. The doctors tell us Elijah has a vision and hearing deficit. Testing as a very tiny kiddo added those to his unique list. He wears a bone conduction hearing aid on his forehead to amplify sound. His vision seems perfect to us. So, we’ll just have to wait and pray that we are right.
  • Although we have searched, we do not have a diagnosis for Elijah. The geneticist thinks he may be one of a kind, but still we hunt for other kids with a similar set of qualities.

We also have very good news! Elijah’s heart, kidney and liver are fine. He is alert, happy and responsive. He is strong and loving. He makes all who know him smile and thankful. He has the world’s best family and is the most loved little boy. He is worth every fight!

I give you this list of unique qualities so that our search for other children like Eli can continue and your prayers will have direction. Thank you for caring!

Extraordinary Kid Resources

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 get to decide.
  • If you live in Oklahoma, get your kid on the DDSD waiting list (through DHS). The wait is LONG, but I hear the payoff is worth it if you eventually get on. It is fine to hope your kid doesn't actually qualify when his turn comes up.

Down the road a bit:

  • Once you have your kid on Medicaid ask about gas reimbursement for medical miles driven. The rate paid is low, so keep track of all medical miles for your taxes and tell your accountant which miles were paid on and at what rate. Leave the number crunching to an expert. The financial impact of this can be significant at tax time.
  • Once you are on Medicaid, ask about per-diem payments for out of town, overnight medical visits. This includes if you live in a different county than your "local" hospital. Again, this isn't much, but every cent can help keep your family on track financially.
  • Attend Extraordinary Connections support group co-founded by yours truly. Our group is for parents of kids who have rare genetic or metabolic issues. We totally get where you are.
  • Once you are on Medicaid, sign up for $1 a month home telephone. Nearly all of the providers have the $1 month program, but Cox offers call waiting and caller ID for another $1 a month.
  • If you get on Medicaid and your kid is younger than 5 years old, go to your local health department office and apply for WIC vouchers. I know, I know, you don't need the help, but think of what you can get for your extraordinary kid with the money you would have spent on what WIC provides. It's generally between $40 and $60 based on the age of your kid. I have to admit, WIC doesn't make it easy to use their services, but stick to it.
  • In Oklahoma, call Oasis about getting respite vouchers. You can use these to pay your child care providers so that you can get some "ME" time.
  • Sign up to get a mentor through Oklahoma Family Network. The OFN staff work hard to match mentors and mentees according to diagnosis or geographic location based on the mentee's desires.
  • If your child's extraordinary issues include anything orthopaedic, contact your local Shrine for access to the Shriner's Hospital network -- the sooner, the better.
  • Start a system to keep your extraordinary kid's paperwork. Paperwork is an understatement for what comes along with your kid. The more doctors, the more paperwork. I have a two-drawer filing cabinet for Eli's paper.

Dealing with the medical professionals...tips from Melissa:

  • The only doctor qualified to talk to you about a diagnosis for your child is called a geneticist. The rest of them will make guesses, which can easily send you into a frenzy, but they are just guesses, although the doctor doesn't call it that when they spout it out.
  • Even in a hospital, most medical professionals are not accustomed to extraordinary kids. Plus each extraordinary kid is radically different. Know that eventually, you will be the expert on your kid. At first, it won't feel like that, but eventually you will realize that you really do know best in many instances. Persist in being heard and speaking for your kid. I still believe that kindness gets me further than anger, but assertiveness is essential.
  • Rely on yourself to coordinate all of your kid's medical intervention. Plan on being responsible for keeping each doctor in the loop on what another doctor is doing or recommending.
  • Write everything down.
  • Medical Residents are an important part of the medical future, but remember that they are learning and in my experience, some of them speak with authority like they know what they are talking about when they really should not. I've learned that I'll listen to the resident and then I double check everything he/she said with the doctor. Good practice.

Tuesday, February 5, 2008

Eli has teeth

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

Sunday, February 3, 2008

Intro from Eli's Sherpa

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.

What do you want to know first, the shopping list of symptoms with which he struggles, or the miracles we've witnessed through his life over the past year? As this blog grows legs, I'm sure we'll swing back and forth between the two. Elijah (I hardly ever call him Eli, but he answers to it) faces daunting challenges in '08, mostly associated with repairs to deficiencies in his arms and legs, so you will hear us asking for your prayers again and again. But if '08 is anything like '07, you'll also hear us announcing repeatedly how your prayers have been answered. I certainly have no reason to expect anything less.

I'm cheating a little by posting the first message to this blog. The honors really should go to my wife, Melissa, who has been responsible for myriad e-mail notices during the past year. In addition to soliciting prayers from a massive network of friends, family, acquaintances and strangers spanning the entire continent, she is also responsible for masterminding our current financial situation. Without her administration of our insurance and government assistance options, Elijah would be in much, much worse shape tonight. With her hands, ideas and willpower, she has saved our son's life, as surely as any surgeon he has encountered.

Melissa's attention to detail is surpassed only by her loving spirit, which she has passed on to both Elijah and our beautiful daughter Sophia (not "Sophie," not until she says it's okay). She is five-years-old, bright to the point of glowing, curious, graceful, and devoid of malice. We would be absolutely lost without her, and she continues to amaze us with displays of patience and comprehension throughout Elijah's ordeal. She’s an essential member of the team.

I'm sure the majority of Ramirez-originated updates in this blog will come from Melissa, not me, so like I said, it's kinda uncool that I'm making the first post. But it's precisely because you don't hear from me as often that I wanted to take this opportunity. Let me be the first to welcome you as you join us on Eli's journey, and to say thank you, thank you, thank you for all you have done for him. Your prayers lift us, and they feed directly into Elijah's Attitude Adjustment System. He radiates peace and happiness even during days of trouble, and therefore, so do we.

That's enough for now; plenty of time to explain it all in further posts. For now, and for always, please continue to pray for Elijah in the following ways:

- Pray that he experience as little pain as possible.
- Pray that he is able to make his mark on this world, in his own way, in his own time.
- Pray that God be glorified because of, not despite, the challenges Elijah faces.

Blessings for you and your families,
Dave