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.
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.
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)!
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.
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!
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.
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.
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.
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.
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
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.
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).
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.
Watch a great depiction of life for Sophia
Ramirez, the sibling of an extraordinary kid. Click here to go to the video on YouTube. Enjoy.
Eli's Prayer Requests
Eli's ability to keep up academically despite interruptions by therapists and doctors
Eli's ability to walk (and run) without assistance.
Ability to talk and listen. Specifically pray around Elijah's constant ear infections and drainage that hinders his hearing.
Perfect eye sight and hearing
Weight gain and growth
Wrist and thumb functionality
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Elijah Ramirez was born on his due date December 23, 2006, at exactly the stroke of midnight weighing only 4 pounds 2 ounces. The nurses immediately ran from the room with my baby boy and, what seemed like an eternity later, the neonatologist returned to tell me my sweet baby appeared to have bones missing in his arms and no thumbs. That was just the beginning.
Elijah is a happy child who will steal your heart. He had his first surgery at one month old to insert a feeding tube in his tummy. At nine months old he had his soft palate cleft repaired and at 13 months he had surgery to open one prematurely fused suture in his skull and reconstruct his forehead. He's had surgery on both wrists and both hands. At 3-years-old he had his feet removed so that one day he can walk using prosthetics. Elijah has had more medical intervention than many late in life.
We realized very soon after Elijah’s birth that we were in for the challenge of our life. A challenge that would take its toll. A challenge we had been prepared for without even knowing. A challenge that we would conquer!
This blog is dedicated to sharing Elijah's story in hopes of raising a legion of prayer warriors on his behalf. I pray that through Elijah’s trials, you will see our Lord taking care of his flock. Check back often to hear about Elijah's victories.