Sunday, August 29, 2010

The splint game

Eli is doing well. He is getting better and better every day. Our biggest challenge right now is keeping the splints on Eli's legs. His legs seem to swell up on occasion and then cause extreme discomfort, which requires us to remove the too-tight splints. Other times, his legs un-swell and his splints fall right off. We've been told to simply mange the splints...on, off, on, off (bath!!), on, off, on, etc. For the most part, Eli prefers them on. Either way, he still cannot get comfortable to sleep. He's used to tummy sleeping with his booty in the air. Now he cannot stick his booty in the air. And, when he rolls over he has blanket issues. Plus, most of the time he cannot roll himself over and he'll yell, "roll me over." To sum it up, David and Eli are sleep deprived.

We are counting down to the next Shreveport trip on Sept 20. We expect Eli to come home with prosthetic legs that he is learning to use. This will be my next big life moment...seeing my son walk. Can hardly wait.

Love you all,

Wednesday, August 25, 2010

"Don't Hurt Me, Daddy"

Dad here:

Lots of good news this evening, but I'm also feeling a tad introspective after the events of the last two weeks, so I'll get that part out of the way.

You would think I'd be better prepared for those long stretches where Elijah is dealing with severe discomfort, but the mind sees what it wants to see, and when Eli's in a good mood I like to tell myself we're finally past all the trial and hardship, at least for a little while. But ever since the feet amputation this year, I've spent a lot of time dwelling on all the hard work Elijah has ahead of him. It's true that all these surgeries have been gruelling on him, but as an infant he at least had the benefit of knowing he could just lay back and relax while Mommy and Daddy managed his pain and tried their best to make him comfortable. (Forget for a moment about how unfair it is to be bedridden.) Now, however, we are interweaving the surgeries and myriad evaluations with a concerted program to get Elijah back on his legs and moving. If he doesn't work as hard as possible, he won't build up the strength he needs in his muscles and bones. So those days of weathering the storm are behind him.

I can't tell you how many rewards there are to arriving at age 3 with him. He has more personality and animation than ever before, his vocabulary and context are deeper, and he knows not only how to ask for what he wants but also how to get them for himself. But I confess, I miss the times when we had to perform painful tasks (i.e. changing his diaper when his legs are still in great pain) without hearing him plead, "Don't hurt me, daddy, don't hurt me, don't hurt me." I honestly didn't see that coming. Those words haunt me at the oddest moments, like when I was pumping gas today. "Don't hurt me," I kept thinking to myself, as the number on the pump ratcheted upward. (Insert long pause while I struggle to compose myself...)

Today was a really good day for Super Eli. First we saw Dr. Scott Cyrus, who is a superhero himself. Cyrus spoke with Dr. Gates at the Shreveport Shriners and saved us the trouble of another emergency trip to Louisiana this week. Cyrus put Eli's legs back into the fiberglass splints, and he was so gentle that Eli was actually laughing and talking while the doctor finished the second leg. We've been very worried about these splints ever since they slipped off the day I returned from Shreveport, but both Cyrus and Gates have given us the confidence and the instruction we needed to keep Eli's legs safe until our return trip next month. The new splint setup will also be much more comfortable around the clock; we previously had to deal with the fiberglass cutting into Eli's flesh, but Cyrus smoothed out the rough edges.

As soon as we were finished with Cyrus, we headed for the Little Light House and our first day of school in the Pink class. Our new teacher Mrs. Brooke and our returning friend Ms. Lindsay were waiting to greet us in the gym, and Elijah jumped right into the fray with his new classmates. We miss the Orange class already, but it's so good to be surrounded by other kids who are a bit more advanced in their communication skills. Also: We completed a swallow study recently that confirmed Elijah is risk-free when he eats and drinks by mouth, so we'll step up our eating therapy every week at TLLH as well. At the end of the day today, I asked Elijah if he had a good time, and he said, "Yeah! I like my new class, Daddy!"

Finally, some business: Please consider making a donation to The Little Light House during the Mini-Laps fundraising season. Elijah will make an appearance again this year, working his way around a track while throngs of admires cheer him on. Click here for details on how to donate:

Thanks to our LIFE Group at FBC Tulsa for being such mighty prayer warriors during all our struggles. And thank you, big sister Sophia, for loving Eli so much and playing with him every chance you get. I can honestly say that, no matter how tough Elijah's tribulations seem, there is always enough love and kindness in our lives to set the ship to rights. Keep it up!


Wednesday, August 18, 2010

Eli's new legs

I know, I know, the wait has been too long. Here's a photo of one of the new legs.

The only reason I was able to snap this photo is because the splint fell right off.

At the Shriner's Hospital, Elijah's splints were removed and x-rays taken. The x-ray showed that the bone needed more time to fully set so after molds for prosthetics were made, new splints were set. Less than 24 hours later, one of the splints slipped right off. Eight more hours and the other splint slipped right off. Eli's reaction, "put it back on." So at the doc's recommendation, we have attempted to reattach the splints to protect his bone.

On September 20, Eli will receive his new prosthetics. He will spend a week at the Shriner's Hospital learning how to use them and return home with his finished legs.

Until then, he is immobilized for the most part, which breaks my heart. The pain is lessening, but I see it in his eyes at times, it still hurts. He improves every day.

Eli will return to school on Wednesday. Pray for his smooth transition into his new classroom with new friends and a new teacher.

Love and gratitude,

Sunday, August 15, 2010

Legs revealed

Eli will have his new legs revealed tomorrow. David and Eli are in Shreveport for Eli's appointment tomorrow. Eli will have x-rays and molds made for his prosthetics.We're all very excited for Eli to become comfortable with his new legs.

Grandpa Ken asked him yesterday if he was going to "walk walk" when he got his splints off. Eli emphatically answered, "NO" and shook his head to emphasize his decision. He still fears it will hurt. I cannot blame him. He will walk though and he'll wonder why he ever doubted himself.

With love,

Tuesday, August 10, 2010

Sophia, The Older

First, Eli is improving every day. Every day we can tell he is less frightened for the safety of his new legs. Every day he is even more brave than the day before. And, every day his smile is even bigger.

Now for the reason for this particular post.

The focus of this blog is the extraordinary Elijah Ramirez. But behind every extraordinary little boy there is an extraordinary sibling shining through...okay maybe not behind EVERY extraordinary little boy, but behind this one for sure.

Elijah's Granna wrote about Sophia and her part in Elijah's magnificent journey. Her words made me realize that Sophia is my hero. She is the most unselfish and kind human being I know. She cares for her brother more than anything in the world. She is also extraordinary in her own, unique right!

By Anna Ramirez on August 6, 2010
Older Sisters

For the first three years of my life I was an only child. Perhaps I felt entitled and was spoiled a little. I can imagine that my parent’s world revolved around me and making sure I was given every little thing I could want.

Then, suddenly, I was no longer the only apple of their eye. Or maybe I remained the apple and along came a chocolate covered donut. Whatever, everything changed. I had a little sister.

If I could tell the story I want to tell, I would present myself as the most adoring, welcoming, gentle sister this child could ever want. Instead, I have come to realize that I was annoying, jealous, mean, selfish, and resentful. In the beginning it was probably to be expected. After all, once you’ve been adored as I was, it’s hard to find a new place of recognition outside the spotlight.

To add to the challenges I was facing as an older sister, SHE was pretty sick. SHE needed lots of time and attention and they even left me with “people” to rush her to the doctor. SHE needed lots of medicine and breathing treatments and special things to eat. SHE didn’t have to eat some things because SHE was “allergic”. (I learned the word early on but it took a while to know what it meant. To me, it only meant SHE was very special.)

I’d like to say that as I got older and understood more that I understood more. Actually, I refused to understand and made some really manageable mole hills into mountains. It took 50 years for me to give it up and that is when SHE became my best friend. We talk every day. SHE knows all my secrets and SHE tells me when to back off or step up. SHE knows my history and where I’m coming from, fundamentally.

Today, I’m a better, older sister.

My granddaughter is an older sister and I have kept a close eye on her for eight years now. I don’t live close enough to be in her daily life but I know what to look for when we’re together. When she was five (many more years than I had to be entitled) she was given a little brother. And, he was, is, very special. He was born with a genetic make up that affected his whole life. He’s never known a day without challenge and he has learned to do some amazing things with his limited abilities. Wow, did my granddaughter ever get slammed with challenges to her older sister status.

How’s she done? She is exceptional, somewhat typical, but never resentful, selfish or mean. Oh, God. How good you are to show this child how important she is in the life of her little brother and her Mom and Dad. Together they work so hard to make their family all it can be with all the challenges they have.

When baby brother was being wheeled down the hall for surgery, this little older sister climbed up on the rails of his bed and whispered, “Don’t worry. I will never leave you. I’ll be right here.”

No one could love a little brother more than she does. She is so patient with all that comes with meeting his needs and even though it’s hard at times, she still lets him be part of her neighborhood “club”. All her friends make sure he’s right there when they play. She defends him when ignorant people ask thoughtless questions and she’s become compassionate in ways no eight year old should have to understand. She’s brave and funny and teaches us all how not to be afraid. After all, this is just her little brother.

Wish she had been around when I got my little sister. I bet my little sister does too.

Monday, August 2, 2010

"How Is Elijah Doing?" You Ask

From the desk of David:

Thank you so much for all the prayers and encouraging words on Elijah's behalf. I cannot drive to the perimeter of my neighborhood without someone waving me down to ask, "Is Elijah doing well after his surgery last week?" I continue to believe your prayers are being heard and answered on a daily basis, so keep them coming.

Honestly, it's been a rough few weeks, although the most important thing is this: Eli really is doing very, very well. His sleep schedule is a mess, as always happens after a major surgery, part of a package deal including a grueling road trip to Shreveport and pain medicine that affects his sleep and digestion. But if you ask him if it's affecting him, he'd look at you like you're crazy. He's sitting up for long stretches of time, playing loud and hard with all manner of toys. He's eating nicely, and we've been able to reduce his dosage of pain med significantly since we returned.

Even though he's doing great and playing hard, he has his moments. The day mostly looks like this: Wake up, play super hard, then feel worn out in the afternoon and need a 3 or 4-hour nap. Wake up again, play super hard until well after midnight, then crash again. It's tempting to leave him off the pain med for longer and longer periods, but we're always surprised by how swiftly he begins to feel discomfort after having seemed unaffected for hours. Many of you know what that roller coaster is like, so you can only imagine what it feels like when you're a 3-year-old.

Please continue to pray for Eli!

--- The Dad