Sunday, January 31, 2010
Please pray for David and Eli. None of us have seen Eli's new legs. David will be the first. It will be dramatic, I am certain. I know we have a whole host of angels who are with us at all times. David's angels will be on overtime tomorrow. Pray that Eli will experience minimal pain as the splints are removed. We are told it will hurt. Why does everything have to hurt?
We will post pics tomorrow evening after they return home.
I love you all.
Please pray for safe travel, headache relief for David, restful travel for Elijah and overwhelming peace as Eli's new legs are revealed tomorrow.
Love you all,
Saturday, January 30, 2010
We've certainly had more than our fair share of snow and ice this winter in Oklahoma.
Love you all,
Sunday, January 24, 2010
I saw the movie Extraordinary Measures yesterday. It's about two kids with Pompe MD and their amazing parents who work tirelessly to find a cure and succeed. The movie showed some of the hardship, but not all. I'll reflect on it later. I recommend the movie.
Love you all,
Monday, January 18, 2010
He still cannot go from sitting to laying or vice versa, but mainly because his legs are too big around from the bandages and wrap for him to sneak them from in front of him to behind. That's a bummer, but he just might get it to happen before he's relieved of the bandages and wrap on Feb. 1.
Eli will return to the Little Light House tomorrow. This will be his first day since before Christmas. He's been gone a long time and gotten really used to having mom or dad around, so I'm sure there will be an adjustment in the morning. I have no doubt he will get right back into the swing of things though.
We go to the ENT this afternoon.
Tomorrow is my sweet husband's birthday.36. Be sure to wish him a happy birthday if you see him. I, unfortunately, will be working from morning to night. We'll celebrate, of course, just not tomorrow.
Love you all,
Friday, January 15, 2010
We love you all and will post pics of Eli this weekend.
Please keep praying for Grandma Edna. She remains in the hospital.
Thursday, January 14, 2010
I suppose her description is pretty accurate. She is always amazed at how everyone she knows asks her about Elijah. She has no idea how all of these people know about her baby brother.
Elijah is doing so much better. He is sitting up. He won't scoot or lay himself down or get up from a laying position, but I know that will come as his wounds heal. His plumbing is in order, his ear is healing and his mood is happier. And, he's still super cute!
Remember, Eli's not-as-famous sister is your favorite Girl Scout and cookie sales start Saturday.
Love you all,
Tuesday, January 12, 2010
Thank you all for caring and for your comments.
He still has his legs straight up in the air, which like one comment, could be because it keeps them from throbbing -- whatever works. He remains on his narcotic pain killer and prunes to keep the plumbing moving.
Better days ahead.
Love you all,
Monday, January 11, 2010
I'm Eli's mom. So, I suppose it's my place to be concerned (I don't want to call it "worry"). Eli is cranky. He isn't himself. Of course, I know he just had major surgery. I'm really hoping it is just that he hasn't slept well in the last 24 hours. I'm concerned that we are keeping a fever down with Motrin and Tylenol. A fever could indicate infection...it isn't a good sign.
Anyway, I post to request special prayers for him. I want him to feel good again. I want him to have fun and play. This evening he was holding his little feet straight up in the air and fussing....I mean his footless legs....gosh.
David would side on not alarming the blog world with this little worry...concern...of mine, but I'm just not that private when it comes to Eli. I have big plans for him and YOU are all involved in that. Pray for his comfort and health.
His next surgery is already scheduled for March 3. Wow. That will be to adjust muscles in his left (more dominant) hand.
Also, please pray for my grandmother Edna. She is in the hospital this evening with water on her lungs. This is her second hospitalization for this condition in four weeks.
Love you all,
Saturday, January 9, 2010
Today, I tried to help him sit up. That didn't go so well. He had a look of terror on his face as his usual balance is off. His former feet were part of his balance. I have no doubt he will figure that out quickly, but for now, he is either being held or laying around. Pray that his advancements -- getting himself up and down and walking on his knees -- will not be set back by this surgery.
He still has a ways to go, but each day I can see progress toward the active little boy he is.
Currently, he is watching Cars in the living room floor and laughing at his daddy.
Thank you for praying for our Rock Star Eli.
I'm posting this essay this morning because it gives great insight into the life of parents of extraordinary kids. Enjoy.
P.S. Eli's awake this morning and watching Dora. I found him and Daddy asleep in the living room floor this morning...that's a sign of a less-than-fabulous night, but night is always the hardest when you don't feel great.
Welcome to Holland By Emily Perl Kingsley, 1987
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Welcome to Holland (Part 2) by Anonymous
I have been in Holland for over a decade now. It has become home. I have had time to catch my breath, to settle and adjust, to accept something different than I'd planned.
I reflect back on those years of past when I had first landed in Holland. I remember clearly my shock, my fear, my anger—the pain and uncertainty. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay.
Today, I can say how far I have come on this unexpected journey. I have learned so much more. But, this too has been a journey of time. I worked hard. I bought new guidebooks. I learned a new language and I slowly found my way around this new land.
I have met others whose plans had changed like mine, and who could share my experience. We supported one another and some have become very special friends. Some of these fellow travelers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me. Many have taught me to open my eyes to the wonder and gifts to behold in this new land. I have discovered a community of caring. Holland wasn't so bad.
I think that Holland is used to wayward travelers like me and grew to become a land of hospitality, reaching out to welcome, to assist and to support newcomers like me in this new land. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned some of the important lessons I hold today?
Sure, this journey has been more challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced than Italy and less flashy than Italy, but this too has been an unexpected gift.
I have learned to slow down in ways too and look closer at things, with a new appreciation for the remarkable beauty of Holland with its' tulips, windmills and Rembrandts.
I have come to love Holland and call it Home.
I have become a world traveler and discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special, the very lovely, things that Holland, or any land, has to offer.
Yes, over a decade ago I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined!
Friday, January 8, 2010
I worked today. When I arrived home, this is what I found. It is a very nice sight to see Elijah sleeping soundly....surrounded by his best pal Clifford and a bunch of his favorite cars. He's in the middle of the living room floor.
The report for the day is that he is still really fussy. I asked Nurse Melody how she thinks he is considering he had major surgery 3.5 days ago and she assured me he is doing well. He will remain on narcotic pain reliever for a while.
This morning he just wanted to stay in his bed. He has a fear of being picked up. He knows it will hurt--breaks my heart.
You maybe cannot tell it from the picture above, but that is one tough dude. Elijah Ramirez is a real rock star. I think this is surgery number 10...let's count.
3. skull at 18 months -- Oklahoma City
4. broviac line placement for dehydration because of c-diff infection after head surgery -- Tulsa
5. one wrist centralized -- Shreveport
6. pin removal from wrist due to infection -- Tulsa
7. tubes placed in ears -- Tulsa
8. one wrist centralized -- Shreveport
9. pin removal due to broken arm/broken arm set -- Shreveport
10. pinkie muscle moved to thumb at 2 yrs 8 months -- Shreveport
11. double feet removal at 3 years -- Shreveport
Okay, so that was surgery number 11. I admit that I might have forgotten one or two.
From my heart, thank you for praying for Elijah, Sophia, David and me. We saw the fruits of your petitions. Elijah's physicians and nurses cared for him with extraordinary skill and kindness. I believe his surgery will prove a giant step toward his ability to walk.
He still hurts. That makes me hurt. I just don't think a little 3 year old should have to experience pain in the magnitude my guy has had to.
I'll keep you updated throughout the weekend.
Thursday, January 7, 2010
Words cannot express how grateful Melissa and I are for all your prayers. They have been answered in extraordinary fashion. Eli has been gabbing and playing non-stop for hours, and we certainly hadn't expected that.
I'm beat! Good night.
Wednesday, January 6, 2010
Love and Gratitude,
The prayer for peace and comfort for Elijah has been answered today. He's not thrilled to have wires and an IV coming out of his body. He's not totally cool with the crazy band keeping his knees together. But, I cannot tell that he's upset at all about his footless legs. So far, he doesn't miss his feet and, for me, that is a huge answer to prayer.
Soon, the wires and IV will be removed and I expect Eli to be back to happy. Though I haven't seen any smiles today, I have seen glimpses of his great personality showing through. Clifford, of course, has been here for the long haul.
Add to your list of our prayer requests that upon Elijah's discharge, the roads are dry so we can make it home easily and in record time. The car ride after these surgeries is pretty hard on Eli.
Love and gratitude,
Tuesday, January 5, 2010
This has been a really tough day. Granna, Grandpa John, Grammie, Grandpa Ken, big sister Sophia and Miss Kate from Little Light House have all been here today. Eli has been surrounded with people who love him. It hasn't made the ordeal any easier, but without them it would have been harder, I am sure.
Please keep praying for Eli! Pray he doesn't miss his feet, his pain is relieved, he can get comfortable and rest well. Pray he has no complications and no infections. Pray for surgical success and the best possible results as he heals. Pray he won't bump his incisions (that's a concern going forward). Pray for peace for Eli...peace that he cannot comprehend, but that penetrates his entire being.
Pray for Sophia as she deals with the new Eli. Pray as she works to understand why her mommy and daddy would let this happen to her baby boy. Pray for David to rest tonight.
Thank you for caring for Eli. He knows you care.
Love and gratitude,
Elijah was able to keep his heel pad...that will be his stump...I'm not sure I like the word stump, but for now, I will use it.
Thank you for continuing to pray. Please pray Elijah doesn't miss his feet and that he has NO pain. Pray that he can rest and have peace. He's been anxious since we arrived. The minute we pulled up to the hospital he started crying. He knew...not that his feet would be taken...but that he would not have a fun time at this great hospital.
The child life specialist made a mold of Eli's precious feet for me. I should have known that this great place would be a step ahead of me.
We love you,
Monday, January 4, 2010
About ten minutes ago, I finished pouring some food into Elijah's tummy via his G-tube. After I removed the tube, I turned off his little TV. He fussed, and I said, "I just want to talk to you for a minute." He looked at me with those trusting eyes and said, "Okay, Daddy." I began, "We're going to have another surgery tomorrow morning." He said, "Yeah," muffled by his pacifier. Then I asked, "Elijah, where are your feet?" He lifted his legs and touched his feet. "Where are your toes?" He did the same again. Then I said, "Elijah, tomorrow we're going to--"
A knock came at the door. "Come in," I said, exasperated and on the verge of screaming. A nurse I'd never seen before said, "I thought you'd like a snack." She had a tray filled with frozen ice cream bars and cups of applesauce, because they really do think of everything at the Shriners. Eli whined when he saw the nurse, but I said, "She's just giving us some yum yum." Eli perked up and said, "Yum Yum!" So of course, I had to get the applesauce.
The nurse closed the door and I started again, this time as Eli examined his individual cup of applesauce, still with the lid on it. "Elijah..."
The phone rang.
"Phone," Eli said, but I assumed we were both hearing the phone at the nurses' station right outside our door, because no one would possibly call the phone in our room; everyone has my cellphone. I started talking again. "Elijah, tomorrow, we're going to take away your feet." I rubbed his toes, his chubby arches, his soft heels. Meanwhile, it slowly dawned on me that the phone I heard actually WAS our phone. "For crying out loud..."
I picked up the phone. "Hello, this is David." The voice belonged to a man who said, "Is Stephanie there?" He was hard to understand, and I'm a glutton for punishment, so I said, "Could you repeat that?" This time when he spoke, he made no sense at all. I said, "I believe you've called the wrong room." I could still hear noises on the phone, but the man was no longer responding to my voice. I said, "Okay, good night," and hung up the phone.
And believe it or not, I still had no clue what was going on. But when I walked back around to continue my conversation with my 3-year-old son, I stopped to wonder if perhaps I wasn't supposed to continue. I wondered if maybe it wasn't my job to have the perfect explanation for every situation, nor to make everyone feel better when I wasn't capable of making myself feel better. More importantly, I wondered what my motive was for trying to give Eli a heads-up. As if Eli's severe communication setbacks aren't a good enough reason to avoid this particular talk, there remains the fact that making him aware of what's happening won't help him decide this is the right thing to do, or that it's fair, anymore than it will comfort him after the fact. So why do it? Could it be that I'm feeling guilty, and this little heart-to-heart was meant to make me feel better, not him?
What my job IS is to comfort him after the fact, and not with facts. I hold him, I play with him, I attend to his needs, and I somehow make myself feel better in the process. It's not just a good process; it's a good life. Elijah may be dealing some truly terrible medical problems, but his circumstance demands that he and I spend a lot of time together having fun and loving each other, and I'm really happy to spend my day like that.
I'm stopping just short of saying that I'm okay with all of this. What I'll say instead is that I trust my wife, I trust that we've made the right decision, I trust the doctors and nurses who will operate on him tomorrow, and I trust that Eli will make the best of this situation, just like he has every situation that's come before.
And I trust Jesus. That's hard to type, because he and I both know that my brain isn't completely trusting him. But my heart never stopped, and he knows that, too. I'd like to think I wouldn't have needed an interrupting nurse and an intelligible phone call to hear him speaking to me, but I suppose he knows what I need better than I do. And the same must hold true for Elijah. Part of me really wishes my son could have a chance to say goodbye to his own feet, but if the alternative is that he won't remember losing them, I'll make that trade any day.
Please join me and my family as we pray for Eljah tomorrow morning, January 5 at 7:00 a.m. I know some of you will gather together to pray for him, and a few of the finest prayer warriors I've ever known will even be fasting. If there was any doubt that something good could come from what has happened, that doubt is gone. Say a special prayer for Dr. Gates, Eli's surgeon and Godly man who really does love little Elijah.
Saturday, January 2, 2010
Know that we struggled with the decision to let the doctors remove your feet for years before the time arrived for the surgery. The weeks before, we mourned the loss. Your dad and I have cried together. We prayed for another answer. We begged. We received clear guidance that this course is the one for you.
I will miss your feet, Eli.
I love to squeeze the fatty area on top of your foot. I love to hold your toes and feel them wiggle within my hand. I love to watch you use your precious feet to grasp your best pal, Clifford the dog. I love to see you use your feet to maneuver yourself wherever you want to go. I love to kiss your feet.
I will miss them with the depth of my being, Eli. I am sorry they must go.
Tomorrow, we will begin this journey. My prayer for you immediately is that it won't hurt and that you won't miss your feet. I pray you don't remember Jan. 5 when your feet disappeared.
I want you to know that thousands of people will be praying for you in this coming week, Eli. They too will pray that you won't remember, that you won't miss your feet and that you will feel no pain, my precious son.
I promise I will be there by your side, hiding my tears from you. I will wait for your emphatic answer to "are you okay" to once again be "yay."
You will survive this, Eli, and you will come out on the other side thriving. You will run through our back yard playing and it will be worth it.
This is the first time in your life that we've been forced to take something from you. As wrong as it feels, your dad and I know it is the best option for your bright future.
We love you, Eli. Everyone reading this blog loves you.
Here's to your future...a future of walking...and running.
Your loving momma,