Saturday, December 27, 2008

Eli is 2

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 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!

Wednesday, December 17, 2008

Eli eats a fry

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 through the tugging. He even reached down and picked up the pink sweet and low package. I was SO proud.

Today, Eli saw his geneticist. He will be starting calcium. We will also do a blood test to check his growth hormone levels to determine if therapy is needed there. We will also soon be sending my and David's blood to the lab in Finland...we haven't done that just yet.

He turns TWO on Tuesday and I bet he's going to LOVE the cake I let him play in. I recalled today that the first six weeks felt like six months and now that two years have nearly just feels like two years...two long years. I cannot really explain it. Time is a peculiar thing.

I love you all and thank you sincerely for your care, concern and prayers for Elijah. You make the world of difference in his extraordinary life.


Monday, December 15, 2008

Feeling well

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
New tubes in ears successful
Happy 2nd B-day on Dec. 23.

Love to all,

Friday, December 12, 2008

Waiting to hear

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 ENT again Dec. 31.

Please pray I hear from Dr. El Amm soon. I will keep you posted.


Thursday, December 11, 2008

Bitter Sweet

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,

Wednesday, December 10, 2008

Eli's head

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 can work on a resolution. With the holidays fast approaching (and Eli's 2nd birthday, I might add), I really want to know how serious of a situation we are dealing with and get it fixed in a timely fashion.

I sincerely appreciate your prayers and interest in my sweet, sweet baby. I was thrilled to capture Elijah's mischievousness on film. Below you see him after he has scooted himself to our entertainment center where we store the DVDs. One by one he gets the DVDs off of the shelf and moves them out of his way. He works his way through the entire stack of DVDs. Then we re-stock the shelf and he starts over with such glee. I LOVE IT!

Love to all,

Sunday, December 7, 2008


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,

Saturday, December 6, 2008

Hospital Update

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,

Friday, December 5, 2008

Hospital Routine Resumes

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 bummer, a GIANT machine was hovering over him and the radiologist was moving it around. It totally scared my little guy. He was screaming his sweet head off and I reached under to touch his arm in condolence. He literally jumped and screamed even harder. I felt awful and tried to talk him down from the cliff. Speaking of "cliff" he had his little friend Clifford, but I had to hold Clifford on Eli's head so that he didn't get in the x-ray and Eli didn't much approve of that either. It was plain terrible. Just isn't right to put a little kid through so much.

My motto is that David is the one to help Eli through these terrible tests. Okay, that's not my motto, but I've decided to adopt it after today. I pray God will protect my sweet child's dreams. I can only imagine the horror of that big machine moving over the top of his little body and how he must have felt. I pray his conscious and subconscious forgets.

Well, I'll keep you posted here on the blog.

Few special shout outs: Carl in Arkansas thanks for the sweet card to "Master Eli Ramirez." He received it today and it brought tears to his mom's eyes. I literally sent Eli and his dad off to the Emergency Room and checked the mail to find your kind note. And, to Mrs. White's junior and senior class, thanks for praying for my sweet kiddo. Soon, I'll have to bring him to meet you.

Love you all,

Tuesday, December 2, 2008

Home again

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 object. It worked and Elijah began breathing again. Looking back, I'm impressed with myself. I really believe that you simply have to be prepared for that kind of thing. Most people who use the skill, use it on a friend or family member. I hope all of my family learns so that if ever I need it or Eli needs it while I'm not around, someone will know what to do with calm precision.

Never go to Ripley's Believe It or Not!
My second soap box: I took Sophia to see the Ripley's Believe It or Not museum in Panama City Beach. I remember fondly watching the show as a child with my family. I cannot recall particulars, but I certainly didn't have any qualms about going to the museum. What I found was replicas of extraordinary individuals who lived in the middle of the 20th century. One man who was born without legs. One man who was born with an overgrowth syndrome who grew to 8 feet tall. A woman born with a dwarfism syndrome who grew to 3 feet. I was appalled that our society still accepts such mockery of individuals who were born with extraordinary challenges to overcome. The presentation of each was tasteful as it could be...often complimenting the individual on his or her achievements, but what gives us the right in 2008 to marvel at their uniquenesses? What gives Ripley's relatives the right to make a buck on their memories of what must have been very difficult lives? Show me the car covered in pennies, show me the boat carved from Jade and show me the tiniest radio ever invented, but don't show me a human being who was forced to make the world of his time accept him for who he was as if to surprise me at his uniqueness. So, the museum had lots of other stuff, but I was so taken back by the section about the individuals that I couldn't enjoy any of it. I should have demanded a refund for the total disrespect the museum shows to individuals who don't meet Ripley's definition of "typical," but instead I bought Sophia the souvenir I promised and left in disgust. I vowed then I would urge my blog family to boycott Ripley's museums in most of our tourist cities, which I have done. Sophia and I will definitely pass next time, too.

Thank you for praying for Elijah. We are constantly watching his health.

Love to all,