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 then click on donations and mini sure to list Elijah Ramirez as the kid you are sponsoring.

We love you all!

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 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!

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.


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,

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,

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.


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 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,

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.


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 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,