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