Saturday, December 27, 2008
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!
Wednesday, December 17, 2008
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.
Monday, December 15, 2008
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:
Throw up free
New tubes in ears successful
Happy 2nd B-day on Dec. 23.
Love to all,
Friday, December 12, 2008
Elijah is failing his tempanograms, which is clear indication he has fluid again built up in his ears. It impedes his hearing and further delays his speech development. Tubes in the ears last only a limited amount of time and the ones we placed in Eli's ears about 15 months ago have made their way out. So, we're in talks with Eli's ENT doc too about redoing the tubes and possibly performing a partial adenoidectomy. I was surprised to learn that after the age of about 6 months, one's adenoids do nothing, but fill a space. The fact that they fill a space is pretty important in Eli who had a cleft in his palate. But, we believe the adenoids are one of the causes of his perpetual runny nose. Another dilemma to figure out, but one I know we will get through. We see Eli's ENT again Dec. 31.
Please pray I hear from Dr. El Amm soon. I will keep you posted.
Thursday, December 11, 2008
I've sent the news to Eli's craniofacial doc and am waiting his reply.
Please pray we can find a reason to Eli's nausea and fix it soon.
Love and gratitude,
Wednesday, December 10, 2008
Sunday, December 7, 2008
Eli is well hydrated and tolerating his feedings.
Please pray for a speedy resolution to this new discovery for our little guy.
Love you all,
Saturday, December 6, 2008
Friday, December 5, 2008
Today, the docs have performed a whole list of tests to rule out more severe complications. We're still waiting on some results, but several have come back fine.
I have to tell you about the total agony to watch Eli have an upper GI done today. First bummer, he was strapped on a board. Second bummer, a GIANT machine was hovering over him and the radiologist was moving it around. It totally scared my little guy. He was screaming his sweet head off and I reached under to touch his arm in condolence. He literally jumped and screamed even harder. I felt awful and tried to talk him down from the cliff. Speaking of "cliff" he had his little friend Clifford, but I had to hold Clifford on Eli's head so that he didn't get in the x-ray and Eli didn't much approve of that either. It was plain terrible. Just isn't right to put a little kid through so much.
My motto is that David is the one to help Eli through these terrible tests. Okay, that's not my motto, but I've decided to adopt it after today. I pray God will protect my sweet child's dreams. I can only imagine the horror of that big machine moving over the top of his little body and how he must have felt. I pray his conscious and subconscious forgets.
Well, I'll keep you posted here on the blog.
Few special shout outs: Carl in Arkansas thanks for the sweet card to "Master Eli Ramirez." He received it today and it brought tears to his mom's eyes. I literally sent Eli and his dad off to the Emergency Room and checked the mail to find your kind note. And, to Mrs. White's junior and senior class, thanks for praying for my sweet kiddo. Soon, I'll have to bring him to meet you.
Love you all,
Tuesday, December 2, 2008
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,
Thursday, November 27, 2008
Wednesday, November 26, 2008
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,
Monday, November 24, 2008
Friday, November 21, 2008
Love and gratitude,
Wednesday, November 19, 2008
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,
P.S. I absolutely couldn't wait to post with the title "Good News." Feels so good.
Sunday, November 16, 2008
Thursday, November 13, 2008
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,
Tuesday, November 11, 2008
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,
Monday, November 10, 2008
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,
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.
Sunday, November 9, 2008
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.
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,
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.
Friday, November 7, 2008
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
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
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.
Thursday, October 30, 2008
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,
Friday, October 24, 2008
Elijah looks great. He's playing, babbling, sitting-up, and loaning me cash.
Monday, October 20, 2008
Saturday, October 11, 2008
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.
Saturday, October 4, 2008
Thursday, October 2, 2008
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.
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 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,
Saturday, September 20, 2008
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!
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.
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,
Wednesday, September 17, 2008
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.
Tuesday, September 16, 2008
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.
Saturday, September 6, 2008
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.
Thursday, September 4, 2008
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.
Wednesday, September 3, 2008
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.
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,
We are waiting and expect he will be finished within the next hour.
Tuesday, September 2, 2008
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.
Monday, September 1, 2008
1. Elijah in Shreveport - Part 1
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.
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.
Saturday, August 30, 2008
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.
P.S. We have someone spending the week at our house while we are gone.
Wednesday, August 27, 2008
CLIP: Eli Eats
- Elijah (boy fixated on banana puff)
- Sophia (narrator)
- Grandma Bobbie (prop)
Thursday, August 21, 2008
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!
Tuesday, August 5, 2008
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!
Sunday, August 3, 2008
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!
Saturday, August 2, 2008
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.