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 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

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 passed...it 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.

Melissa

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

Love to all,
Melissa

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.

Love,
Melissa

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,
Melissa

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,
Melissa

Sunday, December 7, 2008

HOME!

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

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,
Melissa

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,
Melissa

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 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,
Melissa

Thursday, November 27, 2008

Look who joined us!


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

Wednesday, November 26, 2008

More Florida Pics

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.



































Happy Thanksgiving Blog Family

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 SAME God who has held us as we faced whatever came our way.

It reminds me of how I sat in the parking lot before taking our 4 week old mystery child up for a vision test with the super specialist in the state. I BEGGED my Heavenly Father to spare his sight. I begged. During the appointment we were told the devastating news that his retinas did not respond to light. His sight might slightly improve, we just don't know. Have I told you how each time we get horrible news, one of us is devastated and the other is calm. This was my turn to be calm. At the time, it didn't even enter my mind that the test could actually be wrong. I didn't realize at the time that doctors are sometimes wrong and sometimes they give really horrible news that just isn't right. Today, Elijah can see. He can see! He can see! They were wrong! My Father held me through that time of uncertainty and he was faithful to reveal Eli's sight. I remember that often as we move through Elijah's journey.

I still have no answer for why my family was selected to have a child with such extraordinary circumstances, but I do know that the same God I've trusted my entire life is the same God who created my son in His likeness. That's good enough for me.

Honestly, having Elijah in my life puts everything else in perspective. I don't worry about the small stuff. The electric bill comes in far higher than expected, oh well, it's just money and Eli must stay cool. The ice maker stops working, oh well, we'll buy ice (until dad makes it over to let the ice maker have it). Life is very different having such an extraordinary kid. The formerly insignificant blessings in life are now colossal and the formerly big problems are far less overwhelming.

I hope you all can find some perspective in your life WITHOUT having something as life-altering as an extraordinary kid join your family. : )

We remain on the beach. I'm watching the waves crashing as I write from the 11th floor of the condo high rise we're in. So much fun. So relaxing and so great to watch God's glorious creation. Eli is faring well. Sophia is having a ball. Granna and Grandpa are such a huge help to making our vacation an actual vacation.

I must again thank Red Sky Church for helping to make our trip possible. The kindness of strangers will never cease to amaze and truly bless me.

Love you all,
Melissa

Monday, November 24, 2008

Florida!



















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

Friday, November 21, 2008

No more line

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

Wednesday, November 19, 2008

Good News for Eli

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 struggle he goes through each time he wants to pick something up. Of course, he doesn't know there is an easier way yet.

David and I never want Elijah at any greater risk than necessary when he goes into surgery, so postponing is the best option.

Funny, I remember telling people when Elijah was three months old that I expected him to have five surgeries before he was 1: One on each wrist, one on each thumb and his cleft palate. He may have had five surgeries before he was 1, but they weren't the five I was planning. : ) Turns out I'm not a doctor. Hum!

I have been joking a lot lately that I didn't go into nursing for a reason. I'm not a nurse and dealing with a central line coming out of Eli is a bit much for me. But, I am a loving mother and from that perspective a central line is nothing but another means to an important end.

Thanks for your prayers for Eli. Please pray he remains INFECTION FREE! Pray that his immune system will receive a healthy boost this cold and flu season and that we will make it through without additional hospital stays.

I love you all,
Melissa

P.S. I absolutely couldn't wait to post with the title "Good News." Feels so good.

Sunday, November 16, 2008

Silver Dollar City






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

Thursday, November 13, 2008

Eli's Home

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 deficiency. Please pray his immune system is well and that two blood infections was simply a coincidence.

We are still planning to board a plane next Saturday and head to Florida with David's folks. We'll just take our antibiotic, syringes and gauze with us along with feeding tubes, feeding syringes, his special formula...oh my...I really need to start a list.

Eli is happy to be home! Sophia is thrilled to have her daddy and baby boy home. David is so pleased to get to sleep in his own bed. I'm just glad to return to a more normal routine. Hospital routine for me goes like this: get up, go to work, go to the hospital, go home, go to bed, get up, go to work, go to the hospital, go home, go to bed, get up, etc. It's rough.

Thanks to everyone who helped us through this hospitalization either nearby or far away. Please pray we stay out of the hospital! Please pray that Eli's central line remains infection free.

Eli's wrist is definitely wobbly. Not the word I had hoped to use to describe it. I was hoping for more like "stuck" or "stiff," but we have wobbly. I expect the Shriner's will have to redo the left wrist surgery, which is really disappointing. David's grandma said she bets it hurts us worse than it hurts him. I sure hope that is true.

Good news: Eli weighed in at exactly 16 pounds upon his arrival home. I could attribute that to his 10 ml/hr IV drip while he was in the hospital, but I'm giving God the credit. Pray he keeps that weight on!

Special birthday shout out to second cousin Gavin turning 4 today! Happy birthday!

We'll be in touch.

Love you all,
Melissa

Tuesday, November 11, 2008

Keeping Hope Alive

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 and it just doesn't measure up. Docs say we'll be here a few more days before Eli will be considered for release.

Thanks for your prayers!

Love to all,
Melissa

Monday, November 10, 2008

Surgery complete

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, waiting for the call he's out and then going to his side in surgery recovery. To see your kid in pain will truly break your heart over and over. It wears on the soul.

Please pray for quick recovery for Elijah. Pray we are all set for our R&R trip later this month.

Love to all,
Melissa

Eli's Staying in Tulsa

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

Sunday, November 9, 2008

Eli's ordeal

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 that I would take her to Silver Dollar City for the weekend, then Eli ended up in the ER Friday afternoon. My super husband was extremely persuasive in convincing me that I should feel okay about leaving Dad and Eli in the hands of the capable staff at Saint Francis. I felt awful about that, but equally awful at the possibility of letting Sophia down. My dear friend Nellie stepped in and helped us by not only watching and caring for Eli for hours at a time in the hospital, but also advocating on his behalf while she was his caregiver. She filled my absent shoes quite well and we are indebted. Thanks, Nellie.

Further, we've been planning a vacation for the whole Ramirez family to Florida for late November and now we have this to get squared away in advance of leaving in only two weeks. We need the break. We need a healthy kid.

Please pray:
Pray for Elijah's speedy recovery from the superbugs infecting his little body.
Pray for our upcoming trip and that everything goes as planned.
Pray we get the rod out of Elijah in the right manner and that Elijah is healed completely.
Pray his corrected bone is unaffected by this hiccup.
Pray he is well for his upcoming Dec. 3 wrist centralization on the other side.
Pray that Sophia continues to know in her heart that she is the best big sister in the world. Let her not feel overlooked by the extraordinary brother she was blessed with.

Thank you to Elijah's large community of support.

Pictures from Silver Dollar City soon.

Love to you all,
Melissa

Scary diagnosis, but everything's better

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 comfortable and painfree.

Thanks for praying this weekend. We could really use some more.
Dave

Friday, November 7, 2008

Elijah's in the hospital... AGAIN??

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 antibiotics and IV fluids getting pumped into him. Frankly, it's been a miserable day -- needles, X-rays, vitals taken every twenty minutes. But we seem to have a LOT of friends here at the hospital, and they got us admitted to our room faster than it's ever happened before. I'm comfortable, he's resting, and we just have to sit back and wait for the blood culture results in the morning.

If this goes down like we expect it to, we'll be on the road Monday to Shreveport to operate on the arm and remove the pin. It was scheduled for December, but there's really no harm in doing it now. Let's just hope and pray (I said pray already, didn't I?) that the current antibiotic battery will do the trick. He doesn't deserve any more bad news.

Dave the Dad

Wednesday, November 5, 2008

Icky Leaky

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 his stomach contents, Elijah is doing really well. He continues to master his side scoot and is officially mobile for the firs time in his life. Where he can go is very limited due to the nature of his scoot, but I'm counting this in his long list of impressive accomplishments. He also blows kisses, says hi and loves those who love him. He's a joy.

Other family update: Sophia has a (5 week old) sinus infection and David has bronchitis. My grandmother will have a heart valve replaced and David's grandfather has a new pacemaker (which is doing great).

Sunday, November 2, 2008

Eli Smiles and Scoots


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 convince his insurance to buy us the device. Photos and video soon.
Love you all!
Melissa

Thursday, October 30, 2008

Sorrow on top of Sorrow

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 have to learn to put one foot in front of the other foot every day and pray that the load has reached its maximum, but not its tilting point. It isn't easy. In fact, it is really hard.

David and I endured a lot of bad news today as we felt pain along with our dear family members. None of today's news was about Eli.

Today, my dear cousin Stacie received devastating news about her healthy kid Garrett. Gavin continues to fight brain cancer and now the load on her and Jeff and the rest of their family has been quadrupled. There is nothing about this that is fair. No one can understand why. It is really horrible.

I know you will join me in praying for their lives. Pray for Gavin and Garrett and their health. Pray that today's diagnosis was WAY off for Garrett. Pray for Jeff and Stacie as they face even more unbelievable challenges as a couple and parents.

My grandmother will spend tonight in the hospital to have some tests run tomorrow on her heart to rule out any problems. She was experiencing shortness of breath and chest tightness today. David's grandfather will have a pace maker installed tomorrow in OKC. Please pray for both of them. They both mean a great, great deal to David and me.

Elijah saw a new ear, nose and throat doctor yesterday. The tubes in his ears are not functioning. They are on their way to falling out and are far enough in the process that they are not working at all. This means that Elijah is missing all low-frequency tones in his hearing, which will further delay his speech. The new ENT says he needs to see Eli in another 2 months and then decide if he needs new tubes and what to do about his pesky adenoids, which are likely culprits in Eli's non-stop runny nose. To complicate things, Eli's former cleft palate makes adenoid removal risky and far more difficult. Please pray that we can come to a solution for his ear, nose and throat situation. I cannot remember a day that Eli didn't have snot running. He is fed up with having his nose suctioned, wiped or touched and I don't blame him. Then, David tells me he had a friend growing up whose nose was malformed from being wiped too much. WHAT! So, now the snot should just run into his mouth? We need win-wins not lose-lose.

Please remember sweet Gavin and Garrett in your prayers tonight and be thankful for the good things in your life.

Love to all,
Melissa

Friday, October 24, 2008

We're back home!

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

Monday, October 20, 2008

Greetings From Shreveport

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

Saturday, October 11, 2008

Thank You, Shriners


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 when he was laughing. The pictures went in order from oldest to newest, and it's heartwarming to see how he's grown and improved. By the way, he weighs 15.94 pounds today!!! He's magnificent.


First the Shriners fed us, and I was leery at first of the pepper steak -- it's always iffy eating someone else's homemade recipe -- but I was stunned by how good it was. Mel keeps making fun of me for the yummy sounds I made. But it was great! Although I don't want you to get the impression that Melissa doesn't feed me. Because she does. Constantly.


After the meal, they invited Melissa up to tell the crowd about the impact the Shriners have had on our precious son. Without using notes (she's such a professional), Melissa started at the start, talking about how scared we were the night he was born. She talked about how a couple of doctors in Oklahoma, who seemed to know what they were talking about, turned out to be wrong and only the Shriners in Chicago and Shreveport had the expertise to figure out Elijah's entire story. At one point she told the story about how we went to Chicago to have Eli's cleft palate examined, and they told us, "But first we'll need to do something about his head." She put a bit of a comedic spin on the story, because there really is an element of slapstick to the whole thing, since there's always a new surprise and if you don't laugh you'll cry. I did laugh, like I was supposed to, and so did Melissa's friend Nellie Kelly who sat at our table. Nellie used to be the medical reporter for the Tulsa World, and she and the Shriners go way back. I believe she made the first call to them so they'd get Elijah's paperwork underway. So anyway, Nellie and I are snickering at the story, but no one else in the room is. It wasn't really until after Melissa was done that we remembered how horrifying it was to face some of that news the first time, especially about the fused sutures in the skull. So no laughter, but there were tons of smiles, and this is why. Melissa would describe something we recently had done to Elijah's wrist, and there he was sitting on the first table in the room with me playing peek-a-boo with him with a paper napkin (that was so cute). And everyone is watching Elijah play with his hands even as Melissa is describing them, and you could feel the outpouring of affection they had for him. He gets that a lot.

Here's the gist of Melissa's presentation: If it weren't for the Shriners Hospitals, we don't know where Elijah would be today. They have the experts, they have the facilities, they have a nursing staff that treats Elijah like a little boy and not a frightening puzzle, and when they send us a letter in the mail, we know for certain that it's not a bill. They are superheroes.

After the speech, about 40 people gathered around to say hello to Elijah. They wanted to see him laugh and clap and interact, and he didn't disappoint. A couple of Shriner big-wigs asked Melissa if she'd be willing to give her speech again for other Shriner groups, and I'm certain they weren't kidding. She really did a magnificent job. The woman just doesn't know how to do something half-way, whether it's advocating on behalf of Eli in front of a crowd or getting her hands on funds and resources that will improve his health and comfort. She's Queen of the Superheroes.

My job was to keep Elijah occupied and happy, and I did a great job as well. Women kept saying, "Oh look at how cute he is," and I'd say, "Why thank you. But what about my son?" I used that line about six times, and it worked every time. I'm able to sell it because I actually believe I'm cute.


Keep praying for Elijah, as he travels back to Shreveport on Oct. 21 to have an x-ray on the pin in his arm.

Dave

Saturday, October 4, 2008

Tonight's Triple Feature

1. Elijah With Cast... Elijah Without Cast


2. Kisses From The Boys

3. This Is Sophia

Thanks for watching!

Thursday, October 2, 2008

Electric Chair

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 weighs 150 pounds and we definitely do not have an "electric chair friendly" vehicle...or house for that matter. I anticipate we will be in for some structural changes eventually, but for now, he will learn the great art of "going" around our home. I just know he is going to love it.

Elijah is doing great. He claps any time I say "yay" and he now makes a smooch with his lips when we blow kisses to him. SO CUTE PEOPLE. I know David will post a video soon.

Elijah continues to laugh and make all of us smile. Sophia is proud of Elijah's power chair. She told me that she wished she could have one too. I told her I was so happy she didn't need one. She asked why. I just changed the subject. I am sure some therapist out there could give me better guidance on how to deal with the 6-year-old sister of an extraordinary kid like Elijah, but for now I follow my instincts. My instincts say that I don't elaborate on Elijah's limitations. I focus on his accomplishments not only with Sophia, but also in my own head and heart. Elijah's accomplishments mean so much more than those of ordinary kids. I'd give anything for ordinary, but since I got extraordinary I'm celebrating the clapping hands, smooching, weight gain, sitting up, rolling over, hearing and every single giggle. Today, you should celebrate your ordinary...however extraordinary it may be.

Much love,
Melissa

P.S. Please keep praying for my cousin Stacie, her husband Jeff and their two kids Gavin and Garrett as Gavin fights brain cancer for his life.

Wednesday, September 24, 2008

To the commentor on the last entry

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

Saturday, September 20, 2008

Eli's new hand revealed


















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, there is just no way. I know for a fact that it isn't a bill. I can open it with that peace. After Elijah's birth, I found myself dreading the walk to the mailbox wondering what incredibly unreasonable bill I would find next. I don't have that fear any more and I definitely don't have it with the Shriners.

To all the Shriners who might stumble upon this, to the Shriner's families, to the dedicated and selfless physicians, nurses, aides, housekeepers, volunteers, donors and friends: please accept my heartfelt thanks for the amazing work you make possible.

With love,

Melissa Ramirez

Front page news

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. Check back here.

With love and gratitude,
Melissa

Wednesday, September 17, 2008

Applaud for Eli!

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 picture or two soon.

Thanks to everyone.
Dave

Tuesday, September 16, 2008

On the road again

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.

David

Saturday, September 6, 2008

Eli is recovering

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

Thursday, September 4, 2008

Time to go home

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

Wednesday, September 3, 2008

Eli in Shreveport, Pt. 2

Eli is out of surgery

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 have a minimum of five more just like this week. This week will require our return in two weeks to have the cast removed and another return in four months to have the pin removed.

At the Shriner's Hospital I see other children who are dealing with their uniquenesses in such amazing ways and I am touched and very, very sad. To see kids have to adapt and struggle and work to accomplish such simple tasks, breaks my heart. To know that Eli will have to work and struggle and adapt is sobering. To know that this hospital is here to help him work and adapt means more to me than I can express.


David stayed at the hospital with Eli last night while I slept at the hotel. Today, David is at the hotel sleeping while mom, dad and I work with Eli. David and I have become accustomed to this relay race handing off responsibilities to the other time and time again. We are near masters.

Other things I am thankful for today:
My shoe squeaked on the floor in Eli's hospital room soon after his return from surgery and his eyes popped open. HE CAN HEAR!
I saw a boy here with nothing below his elbows typing faster than me.
Dr. Pepper.
Sleep.
Weak hurricanes.
My parents for being here, my sister for keeping Sophia and all of you for thinking about us today.
"I don't care" pre-op drugs.
Kind nurses and brilliant surgeons.

Thank you all for your prayers and concern for our sweet little guy. He is a fighter and proven that once again.

I've taken more video. David is our video-up-loader so I bet you will see that tonight.

Love you all,
Melissa

Eli's in Surgery

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

Tuesday, September 2, 2008

PRAY FOR ELI - Surgery Tomorrow

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

Monday, September 1, 2008

Eli Arrives in Shreveport

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.

In Shreveport

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

Saturday, August 30, 2008

Preparing for Shreveport

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 left behind with Auntie Lori, Uncle David and her favorite cousins.
  • Pray for traveling safety for the three Ramirezes and my parents Ken and Sue as we make our way to Shreveport and back home.
  • Pray that Elijah’s surgery will be incredible and that his recovery will be pain-free and fast.
  • Pray that the doctors will find that doing both arms at the same time is best for Eli. As parents, we hope he will be put through as few surgeries as possible, but we definitely want what is medically best.

We love you all and value your prayers and concern. We will update the blog throughout the coming week...hopefully with video...so check back often.

Melissa

P.S. We have someone spending the week at our house while we are gone.

Wednesday, August 27, 2008

See Eli Eat

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)


Thursday, August 21, 2008

Did someone say 15 POUNDS?

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 muscle to move his hand rather than to move his wrist. You would be so impressed to see Eli make the absolute best of what he has right now. But I am thrilled that we can give him more resources to accomplish whatever it is he wants to do: shake a rattle, stick a pacifier in his mouth or scratch his head.

PLUS, THE BEST NEWS OF MY DAY! ELIJAH WEIGHS 15 POUNDS!!!!!!! He literally blew through the 14s. I know my kid and he might fall back below 15 for a week or so, but to even see 15 on the scale is a HUGE accomplishment for his little body, which is pumping so hard to grow, grow, grow. Please keep praying that Eli will grow in length and weight.

Honestly, I am not worried about the surgery in Shreveport at this time. I know it will creep in as the days count down, but Elijah has survived so much and fought so hard, I expect this upcoming surgery will be no different. Please pray for Eli to have a quick and easy recovery as well as remarkable results!

We took Elijah to church on Sunday and we were able to stay to the very end. It cracked me up to hear Eli say "da da da" right in the middle of the sermon. David swore he said da da the other day, but wouldn't do it again for me. I'm counting the church da da though! Yay Eli!

Sophia started first grade on Wednesday. Special shout out to the Grahams for providing her school supplies. Thank you!

To a fabulous week for all!
Melissa

Tuesday, August 5, 2008

Aid-less

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 conduction hearing aid. He hated it. It is no more!

Even more good news on the Eli front. Yesterday, he sat, unassisted, in his bath water playing with his new bath toys for FIVE minutes. The photo with this post is of Elijah sitting on our kitchen counter (don’t worry, helpful hands were nearby although cropped from the photo).

Elijah is thriving! His surgery is less than one month away to correct one or maybe both wrists at the Shriner's Hospital in Shreveport.

Please accept my sincerest appreciation for continuing to remember sweet Eli in your prayers.

Love you all!
Melissa

Sunday, August 3, 2008

Elijah’s Favorite Things

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

Saturday, August 2, 2008

When the Abnormal Becomes Normal


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 neighbor kids who will watch Eli grow up, too. One asked why Elijah needs “all this” to eat as she pointed at his IV pole and the odd bag on it. I just responded “he needs it to gain weight quicker.” She and I were fine with my normal answer. Another child asked why he has so many boo boos on his skin. I said “that’s just his skin and it doesn’t hurt him, here touch it.” She and I were fine with my normal answer. “Why are his hands like that?” My response, “They just are.” (okay, I admit that one is a really hard one to answer, but still a pretty normal answer.)

I'm really glad they didn't ask me why he's been a baby for such a very, very, very, very long time. No way to really make that normal.

So, from the at least "semi-normal" Ramirezes, thanks for your prayers. Elijah has a way to go.

With love,
Melissa

Friday, August 1, 2008

Perception vs. Reality

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 occurs when he is in the best of health. What a chubby little kid! So many factors have to fall into place like puzzle pieces, and right now, they are. I rewarded my grandma with the news she wanted to hear: that he's been in a really good mood all day, playing well with Miss Kim (his wonderful nurse), wearing his arm braces without fussing, practicing sitting up on his own.

There's no way to type these achievements without feeling a real sense of joy, and yet, I just feel crumby tonight. If I allowed myself, I could just as easily rattle off the list of challenges (that's corporate-speak for "problems") Elijah faces in the weeks ahead. For example: His mobility is of primary concern to his in-home therapists, and when they get to work on him, he'll be sore and cranky and perhaps even feeling some real pain in his delicate limb joints. I believe in my deepest soul that I'd take that pain from him if given the chance, but if that's true, then why do I whine so much about my headache?

We have a propensity for blowing things out of proportion, for both selfish and noble reasons. If I want you to feel sorry for me, I'll complain more than I should. If I want to convince myself I'm not feeling bad, I can exert some willpower to improve my attitude, but the pain still lingers; this is why people who break their index finger don't go to the doctor for weeks. Maybe the toughest challenge we face as frail humans is the mighty task of describing a situation accurately, without hyperbole, but also without denial.

So here's the most honest assessment I can make of the current situation: No matter what else is going on in my life, no matter how I feel tonight or tomorrow or ten minutes from now, I know that Elijah is getting stronger and stronger every day. He's not strong enough to crawl, but he wants to crawl, and that means he's strong where it counts. The people who care for him day by day, hour by hour, know what it takes to examine his little body objectively and with compassion, and that allows them to make not just good decisions but the best decisions about how to make him feel better, how to keep him healthy, and how to improve his situation in the present as well as the future.

So if someone calls me and asks how Elijah's doing, and I feel like griping about my head or painting a picture about Elijah's woes, but instead I say he's doing great, no matter what's going on in his life or my life, I'll be telling the truth.

And here's another thing I know to be true: No matter how much I wish the situation were different, I know God has Elijah in the palm of his hand, and everything's going according to His plan, and yeah, there's a plan. It's so great that God's promises don't depend on how we feel toward God and his promises.

What do you know! My head is clearing. Drugs are awesome.

All of a sudden, I just want to crawl in bed. So I'm gonna.

Dave out.

P.S. Manny Ramirez is no longer on my Christmas card list.

Tuesday, July 29, 2008

Breaks my heart

Since Elijah’s birth, I’ve learned that mostly people mean well. They likely do not know what to say to me and sometimes they say things that hurt me deeply.

First, let me clarify that I am over it. Really. Please don't sensor your words in my presence or avoid talking to me for fear of ending up on my blog. But, this evening, I have this desire to share with you those stingers that will not leave my memory. Perhaps knowing I’ve charted them will send them from my brain making room for far more important information.

Stinger 1
The day we were taking Elijah home from the hospital the very first time, the discharge nurse was required to walk us clear to our car and watch us strap our newborn in the back seat. It felt as though we had to pass the test (which we did, by the way). I remember so clearly as she and I stood waiting for David to fetch the car she said, “Well, with most babies you have to worry about their arms and legs getting in the way, at least you don’t have that.” I hope you get how absurd her comment without my further explanation, but I’ll share my emotion anyway – NO, I AM NOT IN ANY WAY RELIEVED THAT MY KID CANNOT GET HIS ARMS AND LEGS IN THE WAY OF A FEEDING OR DIAPER CHANGE OR HOW ABOUT AROUND MY NECK. Oh, how I wish...

Stinger 2
A friend of mine visited me in the NICU and said, “I sure don’t envy you.” I’m not even sure what this friend meant by that. Geez, I’m not even in the running for that award.

Stinger 3
The last one I’m going to share and by far the most hurtful to me. Elijah had surgery to place his feeding tube. After the surgery the careful anesthesiologist refused to take him off of the breathing machine and Eli was admitted to the Pediatric ICU unit in critical condition. David and I were walking in a semi-daze up to where we were told we could find our son. We were buzzed into the PICU area and we wondered up to Eli’s room. We found about six nurses around his bed. I found this REALLY odd, but this was my first time into the PICU. The nurses were discussing Eli and questioning his need to be in PICU. As we came within ear-shot the CHARGE nurse said as she held up Elijah’s blanket to show off his body, “Look at all of this.” She didn’t say it with a hint of compassion or care, but rather not wanting anyone in the room to miss the chance to gawk at MY KID. An embarrassed member of the nursing staff whispered, “Here are the parents.” The charge nurse then turned to me and introduced herself started the orientation process with David and me. She didn’t acknowledge what she said. I assume, to this day, she either thinks we didn’t hear her expose our kid and flat out make fun of him or she doesn't care and treats all of her families with complete disrespect.

I guess I’m feeling pretty feisty tonight. But the most important thing for you to know is that my skin is much, much thicker than it was in the early days. I do not let such things get to me. In fact, I don’t think I would walk away without addressing the sheer absurdity of each without retort. I can assure you there have been others since this time, but I just cannot recall them. I actually have made a conscious decision not to be bothered by either insensitivity or sheer carelessness.

Nothing more to “get off my chest” I suppose.

Thanks for indulging me tonight.
Melissa

Saturday, July 26, 2008

Elijah sleeps...but not for long

David found Elijah in middle of the night snuggled in on his side sleeping away (don't misinterpret that to mean Eli is sleeping well, because he ain't). David thought it so cute, he had to take a pic and I agreed so I had to share. You see, Elijah has a flat spot on the side/back of his head due to his preferred sleeping position (and that pesky prematurely fused suture, but for now, we'll just talk about the sleeping position). It doesn't matter what we do, Eli will sleep on that one spot on his head. He is a determined little guy! So, when David discovered that Elijah had rolled to his side on his own, he thought it worth a photo.

Yes, that is a personal DVD player that apparently Elijah is snuggling with. He loves watching movies. My guess is that when Eli did wake from this slumber, he realized Clifford was out of reach and he began to holler, "Who took Clifford and left me this DVD player?" David and I both missed the outcry, but I betcha that sums it up.

Elijah is hanging on to his 13 pounds. He's sitting up more and getting stronger daily. Such a trooper!

David and I are still considering an "escape" with Sophia. The fact is that life with Eli is all work and no play. To add play to our lives takes drastic measures and a lot of planning, but we'll do what it takes.

Love you all,
Melissa Ramirez

Saturday, July 19, 2008

Lucky 13, same song second verse

Elijah officially made it to 13 pounds...13.18 pounds to be exact.

Elijah is enjoying eating peach puffs (a baby food item). He reaches out for them and works diligently to get them in his mouth one at a time. So cute. We’re still working on finding other things he will eat by mouth.

He is still sitting up for about 2 minutes at a time. He actually finds much fun in the falling over so getting him to sit up for longer periods of time is proving challenging. Elijah finally enjoys bath time! For his entire life, he has screamed through bath time, but the new nurse has implemented a new method and he’s starting to love it.

Thank you for your continued prayers for our sweet baby boy!

Much love,
Melissa

Sunday, July 13, 2008

The 90 Second Achievement

I am proud to announce that Mr. Elijah Ramirez successfully sat on his own for 90 seconds. I know, I know, 90 seconds doesn’t seem like very long, but for Elijah it is a huge accomplishment showing his bright future.

Elijah has many obstacles to overcome in a successful sitting experience as his legs are so short he has to really concentrate on balancing. I am SO proud...if that wasn’t obvious.

We are working diligently on getting him to eat by mouth. He still struggles with this, but we’ve come a long way because he doesn’t gag anymore, he just spits it out of his mouth in disinterest. We’re trying to introduce new textures and tastes to find the combination that will tempt his taste buds. He is exactly 12.93 pounds and if you were to ask my dear husband he’d probably go ahead and round that up to 13. Elijah had originally reached the 13 pound mark right before his skull surgery in January. We are just thrilled to be back!

We are still on track for Elijah’s next surgery to be in Shreveport early September to centralize one or both wrists. This will give Elijah greater control of his hands.

Elijah loves toys. He loves to explore something new that is just his size. Elijah also has some favorite words: go, daddy (of course), Sophia, upstairs and outside. He flares with joy when he hears his favorite words.

Elijah’s Sooner Start team (Oklahoma’s early intervention program) is searching for a mobility solution for Elijah to give him some freedom. I see it in his eyes – he wants to go! We are excited about the possibility. I’ll keep you posted on this front.

David and I are exploring the idea of taking Sophia on another vacation before Elijah is old enough to really despise the idea of being left behind. David and I truly cherish our time with Sophia and know it is very important as we near a season of surgeries for our precious son.

Please keep praying for Elijah!

  • Pray we keep getting great reports on the vision and hearing fronts.
    Pray that Elijah’s elbows will reach full extension (he’s made progress since my last request for prayer here).
  • Pray that Elijah’s arms and legs will grow.
  • Pray that Elijah will grow in weight and height.
  • Pray that Elijah will begin to communicate with us more fully.
  • Pray for Elijah a mobility solution both short term and long term.
  • Pray for Elijah's development catch up.
  • Pray for Elijah’s bright future!

With love and great appreciation,
Melissa Ramirez
melramirez22@yahoo.com