Monday, December 28, 2009

Elijah Walks! God is Cool!

Sometimes it's easy to forget--even for me and Melissa--that Elijah is 3 years old and not a little baby. But this video proves, once and for all, that he is developing better than we ever dared to hope, both physically and mentally:


THAT'S RIGHT. Today... for the first time... Elijah walked upright on his own. His Grandpa Ken built the pipe frame, and it's a pretty impressive feat of engineering. It's the EXACT right height for Eli to stand and rest his arms on the top of the frame, then slide underneath him as he walks forward. This was not even on my radar today when Ken brought the frame by the house. Elijah walked today for the first time. I feel like our faith has been rewarded just when we needed it most. Ken, thank you very much.

Be sure to read Melissa's recent account of Elijah's dramatic birth three years ago this month, then watch this video to see how far we've come. God bless you!

Finally, the Prayer Book we put together for Melissa's present was a huge success. I received several from the mailman, and I put those in a scrapbook (thanks, Lori Reed) along with the ones I printed from e-mail. If you'd like to say a prayer for Elijah before the big surgery on Jan. 5, e-mail me or post it here, and we'll included it in the book. (If I sent you an invite to participate, and you didn't get it, I messed up your e-mail address. Sorry 'bout that.)

Sunday, December 27, 2009

On the third anniversary of my extraordinary son's birth

Here's my disclaimer: This is how I remember Dec. 23, 2006 and the few months following. I am well aware that I have some blanks in my memory. I know I do not remember the entire first 24 hours or 9 days or even 2 months. I think my brain has blocked some memories so that I could survive. I will be updating this with my entire recollection and I will let you know when you should take another peek when I feel it is as complete as I can make it.


HAPPY BIRTHDAY ELI!

On the third anniversary of my son’s birth, I’m embarking to tell the story of that fateful night of Elijah’s arrival the weeks leading up and the bit afterward. Perhaps I want to write it so as to forget…knowing it is recorded for posterity. Perhaps I want to write it so as to remember it. Either way, I believe I am ready to see the story on the page.

My obstetrician, the one I trusted with my daughter’s birth and returned to for my second child, knew something was wrong. I can remember the exact visit I had with him when he figured it out… and didn’t tell me. I was sitting on the table asking mindless questions like: my back hurts is that normal and I’m seeing spots in my vision is that normal. He was very occupied with my charting – furrowing his brow as he calculated the size of the child within me. At the time, I was not alarmed…at all. He would answer my questions with little thought or consideration of the question. He stood and returned to me to feel my stomach.

At the first ultra sound, the doctor reported to us that the child may have club feet, but that the report said both feet and generally when the report says that, it’s wrong…chalk it up to positioning of the baby. So, we had a second ultra sound. During that test, the technician was working very hard to get a look at Elijah’s hands. I questioned her, why are you doing that. She said, “I don’t know, it just says to look at the hands, I guess they couldn't see really well in the last one.” She also told me the feet still appeared to be clubbed. At my next doctor’s visit, the doctor told me that the clubbing was still apparent, but again on both feet and that is usually not accurate. He assured me that club feet is very repairable. I asked him why the focus on the baby’s hands. He said, and I’ll never forget it, “Oh, that’s nothing, I don’t know of anything that affects the hands and the feet.” Well, sir, meet my son!

Toward the end, I asked him, “how much do you think he weighs?” He said, “um, six pounds.” I was really surprised. I was near the end of the nine months and I figured the baby was larger than that. The doc questioned, “Doesn’t he feel smaller than your first did?” I said, “yes.” Again, I didn’t think anything about it. The baby was simply smaller than my first.

I must interject that I’ve decided it was truly for the best that we were not fully enlightened about Elijah’s challenges before Dec. 23, 2006. The knowledge would have caused more trauma and fear. My only regret is that Elijah wasn’t born earlier. He was lacking amniotic fluid. I told the doctor I was leaking and he convinced me I was not.

The doctor was planning to induce my labor around Dec. 15 so we could get the ordeal done before the holidays. Seemed like a fine plan to me. December 15 neared and the doctor said my body wasn’t ready for delivery and we would have to keep waiting. I was disappointed, but fine with more waiting. He considered it again later in the month and again determined it simply wasn’t time.

On December 22, I was watching TV with David, his dad and Sophia when I started having stomach cramps. I got in bed. The pain got much worse, very, very fast. I realized it was coming and going in intervals, but coming very, very fast. I told David we must go to the hospital. It was about 9 p.m.

I was excited that the timing worked out that David’s parents would be in town for the birth of their second grandchild. I had invited Anna to be in the room during the birth, but she declined the offer…cannot blame her. So, the plan was my mom and David would be firsthand witnesses.

The ride to the hospital was difficult. I was certain this was it. I knew I wouldn’t have one of those stories about being sent home from the hospital due to false alarm. My dad called as we were driving to the hospital. I told him where we were headed and knew they would be meeting us there. The contractions were familiar, but yet very different from Sophia. They came very, very fast.

I was quickly put in a delivery room. A nurse came to check me to say I was at a four. I was shocked. A four…it took me hours to get to a four with Sophia. I asked if I could have the epidural. They said yes and put it into motion. It took about an hour to receive. Upon completion, the nurse checked me again. I said what am I, she said 10. Again, SHOCKED! I asked her about the water breaking…she said she didn’t feel anything but the baby’s hair. They called the doctor to come deliver the baby. As I waited, someone came in to find the baby’s heartbeat and had trouble…she called in backup. They found the heartbeat, but instructed me to lay on my side and wait. Another nurse came in and set me up to practice pushing. She said push, I did. She yelled, STOP, stop, stop. I did. The doctor finally arrived, poked his head in to ask if he had time to change his clothes. The nurses said yes, hurry. I had asked for a mirror. I didn’t do that with Sophia and I decided I would with this one. The doc came back and asked me to push. I did. Stop! I did. Turns out the baby was so small, the process of getting him out was too easy. At some point in all of this, I knew something was really wrong. I remember turning to my mother and saying, “something isn’t right.” She reassured me by saying “you are lucky to have an easy second birth.” I appreciated her perspective. I wasn’t reassured though. I did the final push. The baby was out. My mom said, “He is so small.” I remember thinking, cry, cry. I didn’t hear anything. I asked “what’s wrong” and no one answered. Soon, I realized the baby wasn’t in the room any more. I turned to my mom and said “did they take him away?” She nodded. I laid in the bed with my doctor working on me…not saying a word. I kept asking him, what is wrong and he just kept working. Finally he answered me, his forearm (pointing) appears short, that’s all I could tell.

Okay. Um. Okay.

He asked me if I had the blood test I said yes. Finally, my doctor was finished with me and said, “I’ll go and see what I can find out.”

A nurse came in and said to us, “he’s going to be fine. I hear him yelling his lungs out down there and that is a good sign.” I don’t know her name and I cannot picture her face, but she was the only voice of hope in those moments of true fear...the kind of fear you cannot imagine unless you've experienced it.

At some point in these few moments, David left the room to go to speak to those in the waiting room: my sister, my brother, David’s mom, David’s dad, Sophia and my brother’s girlfriend. Clearly, I wasn’t there, but I think he caught his parents in the hall and spoke to them. While he was in the hall, the neonatologist came down to talk to us. I could hear him talking to David in the hallway and I told my mom to get out there and listen. The nurse heard me say that and interrupted the hallway conversation asking the neonatologist to come in and speak to me too.

His words are unforgettable. Forever etched in my mind. With an even tone, he said, it appears your son is missing a bone in each arm, he has no thumbs and it appears he is missing a bone in each leg. That’s all I remember about his discussion with us. There must have been more. I am blank.

I was staring at the wall – with no emotion. My mother said, it’s okay to cry…and I did so, violently.

My doctor came back in to say, Dr. X said he told you the child might have clubbed feet. I nodded. Pretty sorry thing to say. Looking back, that was Dr. covering for Dr.

Soon, they rolled Eli in to the room in a covered bed. David said “can we hold him,” I said, “no, I don’t want to hurt him.” The nurses got him out and handed him to David who put him right down on my chest. I kissed his head and they took him away. His head was perfect. I saw nothing more. He was swaddled.

Some time through all of this I was told he weighed 4 pounds 2 ounces. I knew that was not good. I didn't understand. He was born on his due date...I expected him to be 9 pounds...at least. I was shocked and scared.

I also know that at some point my mom told my sister to tell those in the waiting room that his legs and arms were affected. That really is all we knew at the time. My sister remembers going to the waiting room. She was crying so my brother's girlfriend took Sophia away to visit the vending machines. Lori doesn't remember telling them, but assumes she just went up to dad. The waiting room was empty except for those awaiting Eli. I know God planned it that way.

Next, a nurse came in and said to me, you don’t have to worry about your son tonight. I will be right by his side all night long in the NICU. Again, I cannot picture her face, but her words were light on this dark night. Thank God for that procedure of reassuring the new mom with the baby in the NICU.

David was there…I just don’t remember him. I know when they wheeled Elijah out of the room, I said to David, “follow him.” He did. My mother stayed with me. My dad, brother and sister from the waiting room came in to the delivery room to check on me...maybe Sophia came too...I don't remember. I don’t remember our conversation. They left to go home.

Faster than what one would expect, they moved me into the maternity ward of the hospital. The nurse on that floor came in and said “they told me what happened, I’m very sorry, you just get some rest.” I was alone at that time. My mom and dad came in to tell me they had seen him. My dad said “he looks good, you all had me worried.” We all agreed I would go to sleep and they would go home and be back in the morning. Eli made his entrance at midnight so this must have been 3 or 4 in the morning.

I knew David was in the NICU with the baby. I was alone in my dark hospital room.

I had an undeniable feeling that someone was standing beside the bed. The person was a huge comfort to me. I had this overwhelming feeling that everything was going to be okay. I had barely even set eyes on my child, but I had indescribable peace in my heart. It was at that exact moment that the overwhelming fear of the night disappeared. The person by my bed stayed for awhile comforting me. I think about that moment, that divine peace, often as I face hardships with Elijah. I know that my Savior holds Eli. I know he is surrounded by angels. He is light.

I cried a lot. Despite the feeling of comfort, I cried. I didn’t sleep even a single second. At some point, David returned to the room and began snoring on the couch. I’m glad he slept.

The next morning, I was ready to go see my child. It was a significant walk (wheelchair ride) from my room to the NICU. David pretty much had the system figured out and got us in and beside Eli’s bed in record time. Eli was naked, under a heat lamp. I stared in shock. I didn’t know what to expect. I knew I loved him, I knew nothing else.

I'm blank here.

Later, I remember being beside Eli’s bed with my mom. I was so impressed with her instant and unconditional love for him. She spoke to him in a soothing voice. I couldn’t talk. My mom encouraged me to speak to him. I couldn’t get around the lump in my throat. My mom told me to look beyond his body to his spirit.

I was scared of my child. Perhaps I was scared to get attached for fear of the unknown.

Family and friends wanted to come to the hospital to see us. I did not want to have any visitors. My mom counseled me that it didn’t matter if they sat in the hallway, people wanted to be close to us as their show of love and support. I agreed…they could sit in the hallway.

Sophia came to visit. She was so excited to have a baby brother. She had no idea that the experience we were having was not the exact normal experience for giving birth. She was the most compassionate and kind 5 year old…today, she is the most compassionate and kind 7 year old. Her love for Eli knows no end and no condition. He feels the same way.

I remember being offended by some people’s reaction to me. I was offended with their sympathy. I was offended when they pretended nothing had happened. I was deeply hurt. I’ve grown as a human being as I’ve walked this journey with Elijah. I’ve learned that people don’t know what to say so give them a break. I’ve learned that doctors are just practicing and that you should never, ever put all your faith in them. I’ve learned that instinct is that still, small voice of God leading me. I’ve learned that people are kind. I’ve learned that complete strangers can make a difference in my life. I’ve learned that I am not in control.

We took Eli home from the NICU when he was 9 days old. David was ecstatic about taking our son home. I was scared to death. Now, I know that with each part of Eli’s journey, one of us is the steady head and one of us is shaky. God put us together like two puzzle pieces to make a whole. The doctor sat us both down to talk about taking Eli home and all I could do was cry. David answered the questions correctly so that Eli would be released to us.

His first night was misery. Eli wouldn’t sleep. We were so frightened. The next four weeks, I was breakable. I had extreme fear of being alone with Eli or driving him in the car solo. I was nearly paralyzed. David was my rock and my mother was his relief. It was a very, very hard time for me.

People showered us with kindness. I sat in amazement at how kind and generous people were....some who didn't even know us. I will name a few of the kindnesses...not intended to be a complete listing:

My fellow employees at the Red Cross where I worked brought us four meals a week. We ate them. I forgot how to cook as a result. : )

My mother and father in law bought us a new computer so that we could do our research on each new finding on Eli.

My mom and dad paid for all of Eli's co-payments until we were able to get him on secondary insurance.

Bobbie and Marvin bought all of Eli's diapers...at first his diapers had to be special ordered because his booty was so tiny.

Someone from our church staff came to the hospital to visit us every single day that Eli was hospitalized...that's a lot of days, folks.

Family, friends and friends of family and friends sent us cards, gifts, meals and money.

After birth, we immediately started working on Elijah's clubbed feet. It was one thing I thought we could fix and check off the ever lengthening list of issues. We had to drive Eli to OKC to see a specialist who would weekly cast his feet for straightening. During one of our visits when Eli was four weeks old, between taking off a cast and putting on a new one, I weighed Eli. I was so scared when the scale said 4 pounds 2 ounces...his exact birth weight. He had lost the weight he had gained. I knew that was not a good thing. I called Eli's pediatrician. She instructed us to take Eli to the hospital for an upper GI to make sure everything was okay with his internal system. We did that and then he was admitted to the hospital for failure to thrive. We were shaken.

In the next week, Eli had a feeding tube surgically placed. His first of many surgeries. We then began feeding him through his tube. In a few days, we took him home from the hospital and that night realized as we dumped food in, he dumped it right out. It was violent. The next morning he was readmitted to the hospital for dehydration.

It was after that hospital discharge that we visted a GI specialist who declared Eli was allergic to the formula...he perscribed an elemental formula called Neocate and Eli's weight began shooting up...to 5 pounds. We were estatic.

The next weeks and months were consumed with visits to doctors, therapists and specialists. Each time we'd see a new doctor, we'd be told something new about Elijah's condition. He doesn't have knee joints. His legs won't grow. His skull is fused where it shouldn't be and must be opened for his growth. He cannot hear. He cannot see. He has no thumbs. He has thumbs. He has a missing finger. He has no equillibrium. He has this syndrome. No. He has this syndrome. No. He has this syndrome. No.

Finally, one geneticist discovered Elijah's genetic mutation blamed for his challenges -- RECQL4 mutation. A very, very rare mutation that can cause three different syndromes...Eli has pieces of all three syndromes. He's in a new class called RECQL4 related disorder.

Next week, Elijah will have his feet amputated. Since the day at the Shriner's hospital when the doctor told us he has no knee joints, we have been on this path. It's been the haunting future. It's a requirement, but that doesn't mean it will hurt any less...him or me or the rest of us who love him dearly.

Thank you all for praying for Eli during these years of struggles. We love you.

Melissa

Thursday, December 24, 2009

Happy Birthday Eli

Elijah turned three years old yesterday. Ask him how old he is and he will respond tree...he might say two (then respond to a strange look with) tree! So proud.

I promised my recollection of Dec. 23, 2006, which I will post soon...though unfinished.

Merry Christmas, friends.

Melissa

Monday, December 21, 2009

Casting Stone

So, I've been embracing this idea that I would enter Jan. 5 with a sculpture of my son's feet. Some may think it morbid, but I just wanted a lasting memory...for his future. So, I bought a do-it-yourself kit that included two tries. The company automatically sent me a third try...that's when I realized their "make it look simple" video must have been a bit deceiving. So, I tried. First one, complete disaster as the mold became too hard too quickly and I didn't even get Eli's foot in it. To the trash. Next one, I made the mold with some difficulty and filled it with the stone mixture. Eli's foot has such a turn to it that I didn't get the stone into the toes of his mold. So, it's almost perfect, but less than what I had hoped for. I just did the final try...have to wait 24 hours to see how I did, but I won't be taking this up as my new career.

Does anyone know of someone who does this professionally in the Tulsa area? I'd love to just find the expert and ensure I have the memory. Help?

Love,
Melissa

Saturday, December 19, 2009

Lessons learned

I'm listening to an inspirational song sent to us by a dear, dear friend http://www.youtube.com/watch?v=Hi8tajO11SM&feature=related. As you can imagine, Elijah's upcoming surgery is crowding our thoughts these days.

Of all the things I've learned in these three years of Eli's life, one I learn over and over is that people are so kind. Last week, our fellow Little Light House parents and some of the teachers and therapists built us a basket of kindness for our upcoming trip to Shreveport. I was in awe of how they had the basket packed with things David and I really like...Dr. Pepper, pringles, Cherry 7-Up, Reese's, gift cards...how did they know that? We were so touched that fellow parents, who are in similar situations as we are, would make such a generous sacrifice for our journey. I'm deeply touched by the amazing kindness of people.

On Tuesday, David and I (along with a pal of mine from work) met at the Little Light House for a 12:30 p.m. celebration in honor of Eli's third birthday. I made a small cake for the kids. I wasn't really expecting much except eating cake. When we arrived, nearly every available employee of the LLH came into Eli's room to wish him a happy birthday. The therapy staff had a birthday cabinet they wheeled in with neat light displays. The children loved it. Eli knew it was all to celebrate his special day. The LLH thinks of EVERYTHING. I continue to be amazed at their care for extraordinary kids. Eli had been hearing the b-day song all day, so when it was time to sing to him, he sang right along and clapped enthusiastically at the end. Yes, he licked some icing. The LLH staff made Eli feel so special. It was the best day! How will we top that on his actual b-day Dec. 23?

I came to a heartbreaking revelation last week. The parents at the Little Light House are all just like me and David. They too did not select to go on this journey of hospitals, doctor visits, therapy, surgery and heartache. But, here we are. Together we are travelling down difficult paths...each very different, but each unexpected and very hard. As I walk into LLH each morning to drop off Eli, I don't see a single face of bitterness or anger. Everyone smiles. We greet each other with true empathy, patience and love. We have strong bonds in the likeness of our circumstances. One of the added benefits of having Eli a part of the amazing LLH.

Eli now calls Sophia "O Eah," so cute. He calls me Mum Mum. Sweetest sounds.

Eli's weekend Nurse Melody (who Eli loves) has worked with another young lady for 14 years, Lindsey. She died last Saturday at age 23. I cried and cried for her family this week. Please say a special prayer of peace for them as they celebrate Lindsey's favorite holiday, Christmas, without her this year.

I've been writing a recollection of December 23, 2006, and the days and months that followed. I plan to post it on Eli's birthday so stay tuned.

Wishing you each a Christmas of joy, peace and love. I know God will be carrying us through the coming weeks. Thank you for your prayers.

"If He carried the weight of the world upon His shoulder, I know my sister that He will carry you."

With love and gratitude,
Melissa

P.S. David's been dealing with a debilitating migraine headache this week. No doubt due to the extra stress from thinking about Eli's upcoming surgery (though he wouldn't admit it). Currently he is at the urgent care center to get the dreaded shot to stop the pain in its tracks, but that means another 24 hours of sleep ahead. We really, really want to be in church tomorrow and planned on attending our Sunday School party tonight. We'll do our best.

Wednesday, December 9, 2009

Count down to THREE

Eli is doing great! He says more and more words and we are on the countdown to his third birthday. I joke all the time that it feels more like six or ten years, but it's only been three...three years. I can hardly believe it. He has come so far.

Thank you all for your prayers.

More soon.

Lots of love,
Melissa

Wednesday, December 2, 2009

Eli's Better!

I'll be brief...

Last night, we took Eli to the hospital with 104 temp. X-rays confirmed he had pnemonia in his right lung. We came home and took two doses of antibiotic, one last night and one this morning. Today he was feeling MUCH BETTER. We played on the floor, we laughed and talked and rough-housed, and then he went to see his Grammie. Meanwhile at home, a nurse from the ER called to say Eli's blood culture was positive, and the recommended we come see them ASAP. We got there and learned that ASAP means "as slowly as possible." Two hours later, our favorite triage doc comes in and says that his blood probably just has some residual bacterium, and that the antibiotic he's on is probably wiping it out. More importantly, the fever's gone, he's eating all his food, he's in a great mood, and that's that! We came home, and he's still doing great.

I told Melissa I felt like the trip was a waste of time, but she's convinced that after she told ALL OF YOU GUYS that he was potentially in danger, all your prayers healed him before we could return to the ER. I agreed that's she's probably right, so now I'm thanking you for doing your part. Be on the lookout for the next time we ring the Bat-Phone.

Good night! Pray we get some sleep 'round here!
Dad

Eli's sick

Last night, David took Eli to the emergency room because his temporal temperature was 104.4. He has had fever since Sunday evening, but we've managed it with over-the-couter meds. Each time the med wears off, the fever was higher and then, last night, the number became alarming. Eli was sent home with a diagnosis of pneumonia and an antibiotic.

Tonight, the charge nurse from the ER called to say that we needed to bring Eli back in because his blood culture was positive for something. I asked positive for what. She was sketchy. I asked her if Eli would be admitted to the hospital and she said possibly, but that the pediatrician on call said he needed to be seen and have his white blood count measured.

Pray for Eli, please.

With love,
Melissa

Tuesday, November 17, 2009

MILESTONE! Eli drinks by mouth!

Elijah was so cute tonight as he sat on the dinner table and grabbed at Daddy's silverware. We got him some spoons of his own, and of course, that meant he needed something to dip them in. Melissa got a bowl of ranch dressing, and while we always hope he'll like new tastes and textures, we could not have anticipated how vigorously he'd attack the ranch. You can't know how excited we were to watch him do the following: 1. Repeatedly taste something new. 2. Allow the spoon to enter past his lips (instead of only sending his tongue out to the food). 3. Holding the spoon on his own (as well as he can). 4. Asking for MORE!
But he didn't stop there. From time to time he enjoys the feeling of water pouring on his face, and he likes to stick his tongue out and taste the water, but we haven't had much success getting him to swallow the water. TONIGHT HE SWALLOWED THE WATER. Over and over and over and over. Here, see for yourself:



Keep praying for Elijah! His parents keep lists in their heads of all the things doctors told us he'd never be able to do, and each time HE DOES THEM, we thank Jesus. So does Eli!

Tuesday, November 10, 2009

Amazing Taste Test

Elijah is spending a little time each day with his "Yum Yum," where he sits at the table with the big kids and scoops heaping globs of Gerber Stage One "Pineapple/Pear" into his mouth. It all started about the time of this video, about a month ago:


But how about when he crawls down an entire flight of stairs ALL BY HIMSELF?

Elijah continues to grow and improve every single day. Keep praying for him!

Sunday, November 8, 2009

Photos




Elijah was tired this morning. He pulled the covers over his head as if to tell us to take a hike. He also enjoyed Sophia's Not So Scary After Halloween Party yesterday.




Friday, October 30, 2009

Where Eah?

First, accept my apology for such a long stint between posts. If I could describe our lives this last bit: we've been chasing our tails.

Sophia broke her arm two weeks ago. She has a bright pink cast from wrist to above her elbow. She managed to take a flying leap off of the neighbor's driveway drop on her sit-down scooter. Ask her the story, it is quite animated. I believe she has even greater empathy for her sweet baby boy...not that she lacked points in that area.

Elijah has started asking for "Yum Yum." Yes, people, Eli is asking to eat!!!!!!! This is a HUGE accomplishment for our child. Those of you new to his blog...he received a feeding tube at 4 weeks old because he threw up everything we put in his tummy. Turns out he was allergic to his formula, but having the g-tube helped us focus on other things knowing all along we could feed Elijah without his cooperation. It has been a blessing, but it isn't something we want him to have for life.

Tonight he dipped his fingers in sour cream and ranch dressing and enjoyed every lick. In fact, I ended the flavorful experience before Eli was really done, but I want to make sure he doesn't have an allergic reaction. We are on our way!

Plus, Elijah's vocabulary is expanding daily. He'll make us crack up by repeating whatever short sentences we use like: really, I know, etc. Today, he wanted to go outside so he asks "outside?" We go. He thought Sophia went out ahead of us. He kept pointing and saying "this way" and I kept abiding by his direction. Soon he said, "Where Eah?" It actually startled me. An unprompted two-word sentence! As his reward, we found Sophia in short order.

We've all been fighting illness for about a week. Started with Sophia last Saturday...much to her dismay she was well enough for school on Monday. David is still really puny. I've avoided this round. Both kids have both flu vaccines...thankfully. We aren't starting the season off well though.

One final piece of good news: Eli weighs 19 pounds. I'm tickled to report he no longer fits in his infant car seat. He now faces forward like the big boy he is. He's moved into size 4 diapers and size 24 month clothing. Although very small for his age, he is growing. So keep that on his prayer list.

Also, keep praying for Grandma Bobbie's health and comfort.

Happy Halloween. Video soon...I hope.

Love to all,
Melissa

Saturday, October 17, 2009

Eli splashes

Elijah will feed himself. He dips his fingers into his bowl of baby food goodness and licks it off. Then he discovers splashing in the baby food and making a real mess, but I certainly cannot get upset with him for getting friendly with food. So, he makes a giant mess, but he eats some of it and that's all it takes for him to get away with his splashes and giggles. (we have video of this...but you'll have to pester David for that post)

Eli has also learned to climb small steps solo. He has such balance that even a professional ballerina would envy. He's learned it for survival and uses it well.

Eli has been double flu vaccinated...as has Sophia. I've received seasonal only...David none. These are not easy things to come by this time of year so I'm very pleased with our progress on that front.

Eli has enjoyed fall break with his favorite sister. Sophia has entertained many friends in the last four days and Eli's been right in the middle of it.

Eli will babble away. I'm sure he thinks he is making sense. David thinks he's using complete sentences. We just love to hear his voice.

Keep praying for Grandma Bobbie's full health and for our peace regarding Eli's scheduled amputation in January. Please also pray for Elijah's growth. He remains so small for his age. Also, pray for Eli's sight that it would not deteriorate and his overall health. We need a 100% healthy boy for his January surgery...no hospitalizations!

I am deeply grateful for your friendship.

I love you all!
Melissa

Sunday, October 4, 2009

In very, very hot Florida

Surprise! We're in Florida giving our daughter her dose of undivided attention. We left the day after mini laps and are nearing the end. Granna flew in to care for Elijah for the week. Thanks, Anna. Grandma Bobbie and Grandpa Marvin pitched in too. Thanks!

We have been flying through Peter Pan's world and dancing with the stars of High School Musical...you guessed it, we are in Disney and loving every second of it.

We'll be home soon and share pics of our much-needed escape.

We all miss Eli so much, but this break has been a real pleasure. And, knowing Eli was well cared for in our absence made for a great trip.

Love you all. Please pray for our safe return.

Blessings,
Melissa

Saturday, September 26, 2009

VIDEO: Eli wins the race

The crowd gave Elijah a standing ovation when he crossed the finish line. You'll see why...

Eli's Lap Rocks!

Today was Eli's mini lap. David transformed his little push car into McQueen and Eli was pushed 3/4 of the lap and then out of his car to scoot the remaining bit. Eli received a standing ovation and lots of cheers. Eli raised $9,500!!!! Thank you to all of Eli's supporters for your gifts to this amazing school and for your continued prayers for Eli. We had SO much fun!!!
Video to come very soon.
Love you all!
Melissa

Wednesday, September 16, 2009

Eli plays

Eli is enjoying life. Currently watching his favorite movie...Cars! Ka Chow!

We are only six days before Mini Laps closes. If you haven't made your gift, please follow this link to give. Eli has already raised $4,400, so many, many thanks to his fan club for your generous help for a very worthy cause. Donations must be made by September 22.
http://littlelighthouse.donordepot.com/civicrm/contribute/pcp/info?reset=1&id=52

I cannot wait to show you pictures of Eli making his lap!

Second, if you are in need of something from Pampered Chef, be sure to order on my show before September 22. Click the link below, then click on "shop online" in the lower left corner and enter my name as hostess: Melissa Ramirez. Make sure to check out September's special.
http://www.pamperedchef.biz/pccheftamara

I love you all!
Melissa

Tuesday, September 15, 2009

Drum roll, please




Eli's thumb!




Stitches are still intact, but will soon dissolve. Yay for Eli's new thumb. I have no doubt that the brilliant people at the Little Light House will teach him how to use his new thumb in no time at all.




Love,


Melissa

Saturday, September 12, 2009

Pineapple Pear

Elijah enjoys eating (by mouth) pineapple pear baby food. So far it's the only thing he opens his mouth up for a second, third, fourth, fifth and sixth bite...sometimes even more. Just tickles me pink. We maintain our technique of putting a jar of baby food in every bottle we feed through his tube. We also try at least once a day to feed Eli the baby food before we add it to the bottle. Twice, he's chowed on pineapple pears. This is a HUGE accomplishment. He isn't gagging or spitting it out. He actually eats. Now, I know we have a really long way to go to have him eating 100% by mouth, but that is the goal and we will achieve.

I've been admiring Eli's feet today right alongside visions of him running. I know I cannot have both and my choice is definitely running. I believe Eli would make the same choice if he were older.

Pray for grandma Bobbie. She is really sick again. The picture is gma Bobbie and Eli last weekend watching Cars...Eli's favorite movie. He can actually do McQueen's ka-chow and he hollers "Mack, Mack" just before McQueen starts in. And, he can say Lightening. So cute.


Love,
Melissa

Friday, September 11, 2009

Elijah's next surgery

I spoke today with the care coordinator for Dr. Gates at the Shreveport Shriner's Hospital. She had talked to the good doctor about Eli who said he was intimately aware of Elijah's case and didn't need to see him again before his surgery to amputate his feet. So, with tears running down my cheeks, I scheduled the surgery for early in January. Eli will start a new year with his precious feet removed.

My mom and I are working at growing our faith so that we have an easier time accepting this necessity. I will admit that it is the most difficult decision we've faced thus far...and we've had some really tough decisions. David told me he isn't sure how he'll give consent for this procedure. Part of getting accurate surgeries these days is that you have to tell the nurses exactly what is going to be done...we've done it NINE times...but the tenth won't slide off the tongue as easily.

One of the good things is that we have almost four months before his surgery and those four months will be some of the busiest of the year with the holidays and Eli's third birthday. We have time for peace.

Soon after Eli was born, I told David I wanted to fast forward three years. I wanted to get to Eli's third birthday because my heart thought most of the pain would be healed up by then. I suppose there's still time for that to be the case.

Eli's cast will come off on Tuesday to reveal the greatest thumb in the world. I know you are all waiting for that amazing picture and I promise to deliver it promptly. I won't even get to see it until he returns to Sapulpa Tuesday evening but you can bet Eli's online fan group will be next.

As you pray, please remember:
Safe travels for Eli and daddy to Shreveport and back next week.
A perfectly amazing thumb...in all ways.
Peace for us as we face Eli's next procedure.
Pray that Eli will not lose even an ounce of his abilities to manuever and get around and do what he wants when his feet are gone. Pray specifically for his ability to balance as he sits and scoots.
Pray for Sophia to have an understanding of the upcoming situation far beyond her years.

I love you all. Your prayers for Elijah mean the world to me. Thank you for being a part of this amazing journey.

Love,
Melissa

Tuesday, September 1, 2009

Eli's latest

Our dear friend Susie remains in the hospital recovering from surgery. Continue to remember her in your prayers.

Elijah is advancing. He says "this way" as he points to where he wants to go and when he doesn't get his way he throws a 2 year old's tantrum and I love it.

I'm so glad that I'm finally to a point where I can look back and remember when I wasn't sure he'd be able to do the things he can do now. When Eli was tiny, I had a dream that I was holding him and he dropped his beloved pacifier and I bent down so he could reach it and said "pick it up" and he did. I remember hoping with my whole heart that would come true one day...and it has. My next dream is to see him running past through the windows to the backyard.

He has figured out to let me hold him around the chest and he walks on his knees. I am certain he will be a quick learner when that time arrives.

David is looking to find Sophia a voice teacher. It is the main thing she tells us she wants as an extracurricular. She sings non-stop and I simply love the sound.

Eli loves Sophia so much. Today, we were outside and he desperately wanted me to take him up the hill to the neighbor's house where he was sure he would find Sophia. Sophia is actually at another friend's house and will be jubilantly greeted upon her return.

I love you all and I thank you for your continued concern for my sweet baby boy. He is an amazing kid.

Melissa

Saturday, August 29, 2009

Friend in need of prayers

A very good friend of David and mine had surgery yesterday to have a baseball-sized tumor removed from her brain. Her name is Susie and she could use your prayers for a speedy recovery and cancer-free diagnosis. Susie's two small kids are good friends of Sophia and Eli. David and I are good friends with Susie and her husband James. The doctors found the tumor on August 25 and removed it four days later in an all-day surgery. I can empathize with the words that changed their lives...but hopefully changed only for a temporary time of recovery.

Eli is doing very well. He had his firs two days back at school for the year. He did very well. He was very tired...even yesterday, which is his day off each week. He learns and grows so much at the LLH. Be sure to support Eli's mini lap if you are able and if you are not able, pass the request on to a friend. The cause is so worthy...the kids accomplish amazing things www.littlelighthouse.org then click on donations and mini laps...be sure to list Elijah Ramirez as the kid you are sponsoring.

We love you all!
Melissa

Friday, August 21, 2009

The greatest thumb in the entire world


So, it is true, my son now sports the greatest thumb in the entire world. What an honor bestowed on him.

I promised pictures. So, I'm posting one we took the day before the surgery (notice the giant YES stamped on his arm...a source of great humor for me surgery after surgery after surgery) and one today in the cast. We have to wait until September 15 to see the greatest thumb in the entire world in it's un-casted state, but it will be worth the wait.

Eli's favorite words: truck, mama, eah, no, yay, up, move please, thank you, welcome, paci, ifford, there it is, hi.

Today, we met with Elijah's teacher at the greatest school on Earth, The Little Light House. I always leave so energized and encouraged about Elijah's future. I'm always excited to know that he will develop and grow in their delicate care.

I found Eli sitting in his crib today...twice. Just cracks me up. You see, Elijah's arms haven't really allowed him the pleasure of helping himself between the laying and sitting positions. The brilliant people at the Little Light House started the process of teaching him to use things around him to get up and down. Folks, he has mastered it. Yesterday, he actually hid from me under the ottoman. I honestly lost him for about the longest 30 seconds of my entire life. I knew I had left him sitting in the living room floor. When his silence became noticeable I walked back into the living room...no Eli. It ran through my head...did I put him in his crib...not in the crib..."Sophia, where is Eli?"..."I don't know"...faint breathing heard..."Eli"..."yay"..."Oh, Eli, are you hiding from your mama under there"..."yay." That was the end of that, but geez.

Special prayers for special grandma Bobbie. She's been battling a nasty illness. We love you!

Love you all!
Melissa

Saturday, August 15, 2009

Eli progressing

Elijah is slowly becoming his pre-surgery self. He is enjoying playing and smiling again. We've been having some difficulty getting his food to stay in his tummy, but it is improving. He seems only slightly bothered by his cast...hopefully I can get you a photo today.

Love,
Melissa

Wednesday, August 12, 2009

Surgery evening

Eli is doing very well. He slept from after surgery (about 10:30 a.m.) until 3 p.m. Then he woke ready to hang out with his dad. He's such a strong human...they both are.

I cannot wait to post a photo of Elijah's new thumb. He is in a long-arm cast, but I can see the tips of his three fingers and thumb. The doc positioned his hand like he is holding a glass. Very, very cool. It will be 8 weeks before we get to see the results without the cast.

The hand doc said we must keep Eli's wrists in splints to maintain the straightening we've done in the last year. He also said we should wait 6 months to do his other thumb so we can make sure Eli is able to use the one we just did.

So, that will leave us a small gap in his surgery schedule to slip in the first step on his legs. I'm not super excited to rush this surgery, but in my heart I know it is the necessary thing for Elijah no matter how hard it will hurt me. Perhaps we will be back in 3 months to amputate his precious, tiny, beautiful feet. We'll see.

Tonight, Sophia and I are in the Hilton. We are on the top story of 12. We visited the rooftop pool, which is pretty tough to top. I talked her into retiring to the room early since it's so luxurious. We're chilling before getting some shut eye. We'll head back to the hotel first thing tomorrow and then pack for home.

All in all, this has been a really great trip, especially since Eli's surgery wasn't nearly as intrusive as we were prepared.

Love you all,
Melissa

Surgery is over

Eli is in recovery. He did great. The doc said that the muscles he wanted to move over were there. He had three muscles going to the pinky and one going to his thumb. Doc moved two of the pinky muscles over to the thumb so that he will have greater strength in the thumb.

Good news.

Love to all,
Melissa

Eli's New Old Thumb

Sophia and I arrived at the hospital at 6:15 a.m. David was up and dragging around about to wake Eli for his special soap bath. I encouraged David to go to our hotel room and get some real sleep for a few hours and he did. We need him later in the day so our routine really works.

I gave Eli his bath and helped get his vitals. He had already had his I DON'T CARE med, but it wasn't working fast enough to help him through the pre-surgery activities. My mom and dad are here and arrived about 6:30. The doctor called for Eli right at 7 and I carried him up the elevator to the surgery area. I laid him in his crib and they wheeled him away watching Clifford on one of the hospital's mini DVD players. They take such great care to make sure my kid is not scared. Eli didn't even wink an eye as he went away.

So, we took up residence in the surgery waiting room and made it about 10 minutes when the phone rang. The nurse said the doctor wanted to talk to me and he'd be right out. Those of you who have been following my blog might know that I've never met the doctor who has performed now two previous surgeries on Eli. It's just the way it has worked out. I was a bit nervous.

The doc came out to tell me that he doesn't think Eli needs pollicization. He has a thumb (which we knew) but it lacks the proper muscles to make it work correctly. So, the doctor will be taking muscle from his little finger and attaching it to his thumb so that it will have the strength to flip over like a thumb. WOW! This will require NO pins. He will be casted with his thumb extended in the right position for 8 weeks.

This is good news. My desire is that Eli have thumb function. Please pray this change of plans accomplishes that.

Eli is in surgery now. Thanks for praying.

More later.

Love,
Melissa

Tuesday, August 11, 2009

Lessons Learned

Today, Sophia learned that it really is difficult to know how to maneuver hotel showers. And, if the guess on how to make sure the drain is unplugged is wrong...an overflowing could occur.

Sophia learned that not all shopping malls are two stories. In fact, two in Shreveport are only one. She also learned that when you are shopping in Claire's you can feel like you are at home in your own Claire's store until you come out to that one-story mall.

Sophia also learned what we do while we are in Shreveport with our precious baby boy. She saw him suffer through harmless vitals and painful blood draws, but she also saw him have such fun in the very kid-friendly play rooms. Sophia built a tower out of BIG wooden blocks. When it fell over...many came running...they said it sounded like one of the kids had taken a terrible tumble. We were a bit embarrassed, but everyone just laughed. Sophia and I agreed to make it big, but low next time.

We are staying in three different hotels for our three nights. The Tulsa Shriner's decided to only pay for one night for families despite the need for three (no fault there, I understand times are tight for everyone), so we are the humble recipients of two other nights at two other hotels from two different family members giving us their hotel points. Tonight it's Holiday Inn and tomorrow the Hilton and last night, the Roadway Inn. It is Sophia's requirement that we visit each hotel's pool. Two down, one to go. Sophia informed my mother "the hotel last night had extra-cise equipment, but my mom didn't use it." Oh well.

I remain incredibly proud of Sophia. She hasn't asked me about a single child she has seen at the hospital. She did comment on one girl laying in a bed being wheeled by us. She was returning from her surgery. She empathetically said "that was a little girl." We explained that this hospital is only for kids to get better. She seemed very glad about that.

The hospital is hopping. The staff say it is very busy right now...nearly filled to capacity. Summer surgeries are preferred so kids don't miss school.

Eli is set for a 7 a.m. surgery start time. Sophia and I plan to enter the hospital at 6:30 a.m. to help with Eli's final surgery preparation. I plan to do a good brushing of his teeth after his "I don't care" medicine kicks in. Please keep praying for absolute success and NO infection. He will have some pins in his hand to support his new thumb. That causes me worry.

I will keep you posted tomorrow throughout the day.

With love and deep gratitude,
Melissa

Sunday, August 9, 2009

Preparing for a journey

Tomorrow, we will leave for Shreveport. The process is feeling all too familiar. I posted pics yesterday of Elijah playing at the Splash Pad in Sapulpa. After this week's surgery, he will again be in a full arm cast and unable to enjoy water.

Honestly, I can only imagine what must go through Elijah's head as we allow him to endure such pain and agony. I hope it hurts me more than it actually hurts him, but I truly doubt that is the case.

Sophia will go with us this time for the first time. She is looking forward to the trip. I know it will hurt her deeply to see her baby boy in pain. She is one of his adamant protectors. In my heart, I believe it will strengthen Sophia to be a part of this journey in such a personal way. She will understand more clearly the reason Daddy and Mommy leave her so regularly to take Eli for a procedure. She will see first hand the transformation of Eli's new thumb.

Thank you for your prayers. Please pray that Elijah's thumb really is a thumb and that the muscle and tendons are moved with great ease and that the transition to pinching between his two digits is easily transformed into an actual pincher grasp for Eli. Pray he remains infection free throughout this ordeal. Pray that any pins or rods that must be placed stay put and do the job entirely before removal. Pray that his pain is minimal...pray for no pain. Pray for a great level of understanding and peace for sweet Sophia as she witnesses this intervention. Pray for safe travel and routine happenings (no surprises).

We truly love you all, Eli's prayer warriors, family and friends.

Special thanks to the family staying at our house while we are gone. Much appreciated.

Blessings,
Melissa

Saturday, August 8, 2009

Saturday, August 1, 2009

Elijah's latest

Eli is doing really great. It makes me so sad that he has to endure his 10th surgery coming up on August 12. Of course, it is really great that he is feeling so great, which means he is in his best condition for surgery. Pray he stays that way...it is very important. Pray his slight runny nose goes away too.

The rest of the Ramirezes are just fabulous today. David's back is feeling good. He's had some rough days in the past few, but today it is rested and doing well.

I googled pollicization, which is Eli's upcoming surgery, and I found this interesting blog about another extraordinary kid. You can see his pollicization here.

Of course, for minute-by-minute play-by-play of Eli's pollicization...stay tuned here.

Love you all,
Melissa

Thursday, July 23, 2009

A Ramirez Surgery without Elijah the Great

David had to have surgery on his back to remove the "whopper" of a piece of back disc that had slipped from its rightful spot. Now, I apologize for not posting about DJR's surgery in advance of the event, which happened on July 14, but for some reason, David insisted that I not. To clarify, he has given permission now for me to post about the event...maybe only because he posted on Facebook about his experience.

Anyway, we're 1.5 weeks post surgery and he is doing very well. David's mom, Anna, has been here to help with Elijah and serve as David's home health nurse. Lifesaver.

Elijah is doing great. Today was his last day of school for a short summer break. Eli has an ear infection and congestion, but once we got him on antibiotic he started feeling much better. Sophia has an ear infection...likely from all of her summer swimming. She's doing better though.

Wishing you all a wonderful upcoming weekend of rest and fun.

Love you all,
Melissa

Sunday, July 12, 2009

It’s a Small World Mini Laps 2009

Dearest Friends and Family,

The extraordinary Elijah was born December 23, 2006, as a tiny guy with surprises beyond the imagination.

No thumbs. No radius bones. No knee joints. Legs that won’t grow. A skull that won’t expand. A hole in his palate. Sensitive skin. Arms that won’t straighten.

Physicians and specialists looked at us in disbelief — many grasping for a diagnosis and longterm outlook for Elijah’s future. We were forced to become immediate Eli Experts and make lifesaving and life‐changing decisions for our son. We didn’t choose this extraordinary journey, but we’re making it with genuine passion and fierce determination.

Since our journey began 2½ years ago, we’ve been the humble recipients of extraordinary kindness and generosity – from many of you. Thank you.

Today, we write with a simple request, please support Elijah’s “lap” in The Little Light House’s Mini Laps with a financial gift. On September 26, Elijah will take to the track and strut his stuff. How Elijah will go around the track is yet to be determined...by electric chair, scooting or wagon...but I can guarantee that he will make his first Mini Lap with pride. Mini Laps is an important fundraiser for The Little Light House, which provides Elijah’s education tuition‐free. The Little Light House is staffed with licensed therapists in all specialties and specially‐trained teachers in each classroom. Eli is in the Orange Class where he learns with nine other extraordinary kids. The teachers and classroom associates are remarkable individuals who have such compassion and care for each child. The therapy Elijah receives is developed through strategy sessions involving all of the disciplines.

We are honored to have Elijah at the Little Light House. Eli was placed on the waiting list at 3 months old — he was accepted just after his second birthday. Eli will remain at the Little Light House until after his sixth birthday. In the four years he will spend at the Little Light House, I can imagine the extraordinary accomplishments he will make.

He will play. He will share. He will speak. He will run. He will thrive. He will amaze.

The Little Light House receives no government funding and no United Way support. The Little Light House is 100% supported through the generous financial gifts from caring individuals like you.

This year, they will invest $26,000 in our sweet Eli. Will you help us give back? I know many deserving charities ask for your support, but this year, will you join us in supporting a Christian school specially designed for extraordinary kids? Kids who didn’t ask to be extraordinary. Kids who need a little more attention – a little more help to reach their very best potential. Kids who will succeed thanks to The Little Light House.

With gratitude and love,
David, Melissa, Sophia and Elijah

P.S. We cannot wait to share with you about Elijah’s successful lap. Watch for an update from us after September 26.

Make your gift online, visit The Little Light House visit, click on donation then Mini Laps. Be sure to reference you are sponsoring Elijah Ramirez.

Saturday, July 11, 2009

There it is

Eli's favorite phrase, "There it is." He learned it months ago from his good friend Dora the Explorer...maybe you know her too. I love to hear Eli talk and day by day he is improving. Ask him what a dog says and he will say either wuf or meow...ask him what a cat says and he says the other. SO CUTE.

Sophia sang today "...the star strangled banner..." Clearly, David and I should teach her those important words, but it is so cute to hear her try to remember them and sing them proudly. As she was singing about the ramparts she stopped and said, that makes no sense, but to her "strangled banner"...no comment.

Here are the lyrics for those of you thinking you need a refresher like Sophia.

O! say can you see by the dawn's early light
What so proudly we hailed at the twilight's last gleaming?
Whose broad stripes and bright stars through the perilous fight,
O'er the ramparts we watched were so gallantly streaming?
And the rockets' red glare, the bombs bursting in air,
Gave proof through the night that our flag was still there.
O! say does that star-spangled banner yet wave
O'er the land of the free and the home of the brave?

On the shore, dimly seen through the mists of the deep,
Where the foe's haughty host in dread silence reposes,
What is that which the breeze, o'er the towering steep,
As it fitfully blows, half conceals, half discloses?
Now it catches the gleam of the morning's first beam,
In full glory reflected now shines in the stream:
'Tis the star-spangled banner! Oh long may it wave
O'er the land of the free and the home of the brave.

And where is that band who so vauntingly swore
That the havoc of war and the battle's confusion,
A home and a country should leave us no more!
Their blood has washed out their foul footsteps' pollution.
No refuge could save the hireling and slave
From the terror of flight, or the gloom of the grave:
And the star-spangled banner in triumph doth wave
O'er the land of the free and the home of the brave.

O! thus be it ever, when freemen shall stand
Between their loved home and the war's desolation!
Blest with victory and peace, may the heav'n rescued land
Praise the Power that hath made and preserved us a nation.
Then conquer we must, when our cause it is just,
And this be our motto:
'In God is our trust.
'And the star-spangled banner in triumph shall wave
O'er the land of the free and the home of the brave!

Love you all,
Melissa

Friday, July 3, 2009

Eli loves water

Have I mentioned how much Elijah loves to play in water. His adaptions to enjoying interesting activities makes me very happy. When he was tiny, he screamed the entire way through his bath...sponge bath that is. Now, he wants me to turn on the faucet so he can sit on the counter and swat the stream of water...makes a huge mess, but we both just laugh and laugh.

David is feeling better, much better. My prayer is that the better-ness remains!

David scolded me for airing all of our business on the blog. He said he was surprised I mentioned his back thing. I reminded him of some recent family business that I didn't put on the blog to show that I really do have a line for what gets publicly recorded. I figure he won't tell you about his back, so I must. We'll just see what he has to say about this entry.

I love you all,
Melissa

Sunday, June 28, 2009

Sophia and Eli meet the Incredible Hannah




Sophia was so excited to meet her new friend Hannah that she met her in the driveway upon arrival. Hannah came out of the van wearing her running legs (blades) having some balancing issues. We all walked inside and Sophia immediately started telling Hannah about her play room upstairs. Hannah was itching to get those pesky legs off and run up the stairs. Her mom helped her remove her legs and she zipped up the staircase like it was nothing. I cried.

Hannah is the girl I've mentioned before. She had to have both legs amputated at the knee when she was only 9 months old. She too was born with legs that wouldn't work. She has adapted like a pro. She is a happy, active and smart kid.

Hannah and her mom came for a visit on Saturday. Kim, Hannah's mom, brought all of Hannah's legs...about 5 pair. She kindly showed us how they worked and Hannah demonstrated her ability to use the two she currently fits. She's not mastered it. She is 5. She'd much rather enjoy life on her "stumps," but she is learning all the time how to use her prosthetics. It's literally like walking on stilts.

Sophia and Hannah had David make them a tent. Eli is enjoying it very much in the pic above.

Kim admits to us that the first pairs of legs are very difficult to manage as they fit on the child differently than a set for an older child. Seeing Hannah able to go where she wants with such ease was a real encouragement to us.

David's back is in bad, bad shape. His leg's feeling hasn't returned since the Sunday the slipped disc reared it's ugly head. David's first shot gave him limited relief. He will receive another shot tomorrow. David is likely facing back surgery. He has been in constant pain. No good.

I hope you are enjoying the summer. The heat in Oklahoma came early. The tomato plants are not performing...likely from heat stroke. I guess I have to cut them a break.

With love and gratitude,
Melissa

Wednesday, June 24, 2009

The Annoying Eli

David and Elijah made a Shreveport trip Monday and Tuesday to have Eli's cast removed and his arm x-rayed to make sure the break is healed. It is. We were told to be careful and keep the soft splint on as much as possible as the break is likely not 100% like new just yet. Eli is relieved to have the cast off. He has found the pure joy of playing in water...as you can see in the Elk River pics and post. For a while, we won't have to wrap an arm for him to enjoy some H2O. We'll all like that.

Clearly, you have noticed I discovered photobucket.com. You'll see the occasional slide show from me as a result. In fact, I'll be posting the events of June 21 soon--Sophia's 7th birthday.

I always shy away from using the "EST" words in my Eli vocabulary because there are just so many things that qualify as the "EST." But if I were going to use "EST" words, I would say that one of the hardEST things I have to do is see children who are Elijah's age (or younger and bigger). I want healthy babies for all. I in no way wish that a child had an extraordinary challenge, but seeing plain kids makes me realize how small Eli is. How he should be able to do so much more than his body allows. It makes me so sad for my sweet boy. But, I know he has motivation. He wants to walk! And he will, just years later than we'd all like.

I took Sophia to the Jonas Brothers concert here in Tulsa on Monday. It was great. She loved it. During the show, one of the Brothers did a plug for juvenile diabetes funding as he has diabetes. Sophia leaned over to me and said, "Eli has diabetes doesn't he?" I said, "no, Eli doesn't have diabetes."

David and I never set Sophia down and explained how her baby boy is different. I think eventually I should discuss it with her. I'll likely let her be the guide on when is the right time. Before Elijah's birth, I was the ultimate planner. Since, I've chilled a bit. Life is unpredictable, but God calls the shots and I have no control.

Sophia LOVES Eli so much. She is his magnet. He goes right to where she is and wants to touch her. She told me yesterday it was getting annoying. I just laughed with delight because I think baby brothers should annoy their big sisters. Keep it up, Eli!

I love you all,
Melissa

Thursday, June 18, 2009

Help Eli win a playset

So, this is a shameless plea for Eli's fun. Rainbow, a premiere maker of backyard play sets, is having a drawing where they are giving away a play set every week. I want Eli to win one! So, here's my plea: sign up for the drawing and then gift the play set to Eli.

Since having my extraordinary son, the concept of "odds" and "rare" are very different to me. I believe Eli will win one of these sets. If I could plead his case with Rainbow, I'm sure he would win, but since we have to play the drawing game, he needs as many people to enter on his behalf as are willing. So, follow this link and enter, then when you win, gift the prize to your favorite extraordinary kid: Eli!

Just a reminder: Eli LOVES being outside. It is his absolute favorite place to be. He enjoys Sophia's play set, but it is small...big enough for Eli, but not big enough for his caregivers. Plus, I want Eli to have many options for fun on the play set, which he will get with one of these sets.

I love you all!
Melissa

Monday, June 15, 2009

Elk River... BE-AWESOME

Having fun is a lot of work.

I just spent three days at Elk River outside Noel, Missouri, and it was a blast. We met about 30 of Melissa's family members at a campsite just a few yards from the river bank, and there was nothing to do but float down the river, walk up the river, float down again, then eat a criminally large and delicious meal. This happened nine times. I am in four different kinds of debilitating pain. (Sunburn, indigestion, muscle, computer detox.)

Brother-in-law David brought me and Elijah back so that Mr. Big Little can return to school in the morning, but I think Eli would rather have stayed. We sealed his feeding button and his cast, set him down in six inches of river water and listened to him squeal, laugh and babble for hours at a time. He absolutely loved it.

Hope your summer is well underway.
Dave

Tuesday, June 9, 2009

Peace On Earth, Good Will Toward Eli

It's been a very good day, all things considered. My back was really in bad shape this past weekend, but I got the Cortizone shot (they held back on the Heiniken chaser) and the pain is completely gone... for now. (Insert "Jaws" theme.) So of course, I got some chores done around the house, and that always gives me a giddy sense of accomplishment, because I'm a raging egoist and desperately need the strokes. Most husbands know instinctively that they're supposed to fold laundry, then they never do it because society says they don't have to, but if they DO, then they're heralded as conquering heroes. I mean, it's just laundry. But yeah, I folded it, and I'm awesome. There's just no way around it.

I also found the odd-shaped vent filter I needed for that pesky fifth furnace vent, and seriously, it's little things like that which make me smile. More importantly, Elijah is a raging ball of fun these days. He speaks more, he listens more, he demands more, he lifts a wider variety of stuff with his fantastic hands, and he scoots on his bottom from one end of the house to the other. Tonight he laid his little Elijah head down in the bed, and instead of watching Thomas the Tank Engine (his new favorite!), he promptly passed out. That's a great sign that he's been worn out properly from playing all day long.

We met with his new endocrinologist, and we like this guy very much. He's a real expert, and I think he's going to help us make some headway with increasing Elijah's growth WITHOUT resorting to hormone injections. It all has to do with Elijah's own personal growth history and the fact that he's shown some real success, despite still being so small. I took him to Wal-Mart today, and three, count 'em, three small children pointed at him and exclaimed, "Baby!" It's moments like those that remind me--because yeah, I forget--that people still see him as an infant. But I've always called him my "toddler who doesn't toddle," even though that's no longer accurate, either. He's a champion toddler!

Sophia and I went to play Putt-Putt tonight while the nurse continued feeding and wearing down the boy. She's having a great summer, and I aim to keep it that way. Melissa returned from D.C., and every creature in the house is done stirring, except for this typin' little mouse. So here we are, all snug in our beds (or about to be), and the Red Sox shut out the Yankees for their first 6-0 season opening record against New York since 1912. If we can sweep them at Fenway, and WE CAN, we'll be two games up in the division. Like I said, it's the little things that make us smile.

Pray for Elijah's left arm, which is still in a cast nearly three weeks after having the broken bone reset. We're perfectly fine with the cast staying on so long, but Elijah's ready to have his arm back so he can play harder. Also, pray that we make some progress with Speech-Pathology, especially in light of a major clinic visit this Friday to look at his entire communication process, starting with the structure of his ears and throat.

YAWN. Talk to you again soon.

Wednesday, June 3, 2009

Back Ack!

David has third level disc degenerative disease including a slipped disc! Ack! Basically that means that the three discs from the bottom are deteriorating and the second one up has slipped out causing pain and numbness down David's leg and in his foot.

He's had on and off back problems for a few years and this week the pain became nearly unbearable. He'll have a steroid shot in a few days and then must rest.

Elijah, on the other hand, is doing great. He laughs and plays and enjoys his toys. He discovered Elmo (he sings the La, la, la... La, la, la... Elmo's World along with the video) and Thomas the Train.

I know David will appreciate your prayers on his back recovery. Have you seen what he has to lug around for Eli? It's a lot. Not to mention his trips to the library with his backpack of returns and new check outs. Oh dear, he's going to have to figure something else out.

Sophia is enjoying SUMMER!

Love you all,
Melissa

Sunday, May 31, 2009

Pictures of the Ramirez Kids







Sophia's pic is her at her seventh b-day sleepover party we had Friday night. Yes, I know she doesn't turn seven until June 21, but try telling her to have another b-day shin dig in the summer. She really wanted to have it while all the kids were still in school and a b-day party would be easier to attend. She got it with 16 attendees until 10 p.m. and 9 until 10 a.m. the next day! Fun was had by all.
One of Eli sleeping with his rear up in the air. Too cute, but turning my camera on woke him up so his eyes are open. When Eli saw this photo on the computer screen, he licked Clifford's picture. He is licking more things and I encourage it. Soon, he will be eating. I just know it.
The last one of Eli is at Sophia's school for opening assembly. Sophia was on stage doing morning announcements with some classmates and Eli and I sat in the bleachers.
Love to all,
Melissa

Sunday, May 24, 2009

All fun today







Eli's having a ton of fun rolling a ball bigger than he is and chasing it by scooting on the wood floor. So cute. He is still protective of his healing arm. Whenever I go to pick him up, he gently places his other hand under the hand of the broken arm as if to give it a little extra support. Bless him for remembering the pain of a break. I hope he forgets soon.

Good news is that if he doesn't have his glasses on, he wants them. My mom noticed that he was picking up tiny things off of the floor....a first for him. I am certain the glasses are making a great difference for him. I want more solutions like that!

A new friend of mine who lives just down the expressway (who has a daughter, Hannah, who depends on prosthetic legs to walk) introduced me (Internetly-speaking) to Cody who is in first grade. He was born an extraordinary kid like Eli and Hannah. He was born missing both knee joints, too. You can watch Cody's story on Dateline from this link team Cody. I have to say that hearing Cody's parents felt like deja vu for me and David. The description of "a sensible solution, yet horrifying" describes how we feel about amputation. Such a permanent, painful, yet completely necessary step. I'm still dreading it, but I've known for a long, long time that Eli will run and I cannot wait to be there for his first sprint.

Love you all,
Melissa

Tuesday, May 19, 2009

Eli's learning

Eli is learning to express his desires. The brilliant folks at the Little Light House made him picture cards so he can let them know if he wants to read his Clifford book or play with his musical instrument. Eli selects by pointing to the card. He decides. I love that!

Eli's favorite words: paci, Eah (Sophia), daddy, yay, (shaking his head) NO, ready, here it is.

He isn't moving his broken (healing) arm. That's a good thing. We'll get it checked out again next week with x-ray shipped to Shreveport. Hopefully we can avoid a trip in person. His liquid vitamin D arrives at our house tomorrow so we'll start that.

Love to all,
Melissa

Thursday, May 14, 2009

Home again

Let's see how many blogs I have titled something about being home again. I am sure it is more than I can imagine. We are home yet again and happy for it. Eli remained in pain yesterday, but today seems to be better. He isn't using that arm, which is for the best.

I know most of you think there is no way Eli could actually get any cuter. Drum roll, please!








Isn't he adorable. I picked his glasses up on Monday, but with the drama (and pain) of a broken arm, I didn't introduce them to Eli until today and he's taken to them. He pulled at them at first, but then he's just left them alone. I have to believe it's because he's realized how well he can SEE! The hair is out of control, I know.

In one of the pics you can see the stamped "YES" on his arm. The hospital does that to signify where they are supposed to do surgery. It just cracks me up every time.

Here's an Eli story for the record books. So, the Shriner docs tell me that Eli is deficient in Vitamin D. They planned to give him a load dose while at the hospital and then start Eli on a daily dose. Well, the Shriner's pharmacy isn't used to giving out Vitamin D and they couldn't get their hands on the right item for Eli before our departure yesterday. So, I come home with a prescription to give Eli 100,000 units of Vitamin D as a load dose and then 1,000 a day. I go to the pharmacy to pick up the vitamin and the pharmacist says, "You know that will be 100 pills, right?" Well, of course, I had no idea. I found another bottle that had 2,000 units per pill, which knocked my pill number to give Eli down to 50. So, I get home and count out 50 pills. I start to crush them with a spoon....doesn't work. I throw them in the food processor with some of his formula for about a 30 minute spin and pretty much liquefied the pills and fed them to my son. I know, I know, seems totally odd. I double questioned the doc and the pharmacist called the doc to triple clarify we were all on the same page. I just hope it helps his bones. Doc says because of Eli's chronic skin condition, his body doesn't make Vitamin D. Today, I've found some liquid Vitamin D online, which I will buy for Eli so we don't have to run his meal through the spinner.

Thank you all for thinking about us this week. We've all had better weeks, that is for sure.

Love and gratitude,
Melissa