Eli is getting around well. Using a walker some, but for the most part he’s getting around on his own. We’re all exhausted but had a good night’s sleep.

We’ll share more details later. Please keep checking in over the next couple of weeks for updates.

He’s up and about.  After a struggle with Ray and the OT this morning he walked a bit.  Then, this afternoon, the Physical Therapists came by and took him for a walk down the hall and back.  It was great!

Looks like we may get to go home tomorrow!

 
He still has a little ways to go though. Today was huge in giving him confidence in the strength of his back and legs. Please pray that he would not fear the possibility of pain as he tries to move, but have the confidence and courage that God promises us. Pray for the continual improvement of strength in his back and legs.

 
We thank God for all of you and your encouragement and prayers.

You’re welcome to come visit today if you want. If he’s in the middle of a therapy session or we’re moving him, you’ll have to wait outside. Other than that, I think he’ll be up for visitors. He slept great last night so probably won’t nap much today. You can always email or call before you come just to make sure it’s OK.

Love,
Angela and Ray

Please pray for a day of major breakthrough in his pain level. Pray that his therapy session today would show miraculous progress and that he would be able to walk without asistance today. Pray that fear would be completely GONE in the name of Jesus from his little mind. The fear and anxiety that comes into his mind when he even thinks about moving is really distracting the progress. So please pray that he would cling to the Lord when he is fearful. We are going to begin praying verses related to that over him and helping him memorize some of those today.

We hopefully will be up for some visitors today. If you want to come, call us or email us and we’ll let you know what time might be good.

Love,
Angela and Ray

One beautiful, (well, it wasn’t beautiful at the time, but now I see it as such) yet heart-wrenching, experience we had yesterday was when Eli was sitting up in his chair trying to endure the pain. He suddenly got this excruciating ringing in his ears and sharp pain to his head. It really scared us because it came on so quickly. He was screaming and holding his head and we were just shocked and (freaking out really) trying to comfort him. So Ray called the nurse and Eli looked me dead in the eyes and said PRAY MOMMY, PRAY. So Ray and I were like (Oh, yea, duh) and started praying over him. Then Eli began to cry out quite loudly “Touch me God, please touch me”. He did this continuously for almost 15 minutes until the pain subsided. He probably repeated that phrase atleast 100 times just looking to the sky the entire time. It was scary at the time because we weren’t sure what was going on, but we were truly inspired by Eli’s enduring faith. The way he just kept repeating the phrase over and over, expectantly waiting for an answer. It was life-changing for me. I don’t think we will ever forget that experience.

Thank you to everyone that has brought and sent gifts and goodies. He is finally feeling up to going through some of it.

Thanks for all your prayers. We love you all and thank God so much for you. You guys are definitely holding our arms up like Aaron held up Moses’ arms. We are feeling it deeply and tangibly.

We still aren’t sure about visitors yet. When he is in pain, he feels like he has to be so brave when a visitor comes. Then he whispers to me to ask the person to leave. This is so NOT the Eli we all know who loves people. I’m hoping we will see the true Eli back some time tomorrow. Please pray that along with us.

Love,
Angela and Ray

Unfortunately, around 6:30pm, Eli’s anesthesia had completely worn off to the point of excruciating pain to his back.  The doctors gave him morphine through his IV which gave him some temporary relief.  He insisted I lie in the bed with him, so down I went, confined to the same grueling horizontal position as Eli.  For several hours he would be in and out of sleep, with random muscle spasms to his back that put him into an intense episode of pain.  It absolutely amazed me at how brave he was being.  He would do this sort of “lamaze” type breathing until the pain subsided (with absolutely no coaching by me- he must have picked it up when I was pushing him out of my womb just five years prior).  By then he was terrified that someone was going to touch the bed, move, or breath close to him and that it was going to hurt his back.  Finally, with much persistence, we found a new cocktail of medication to hopefully stop the spasms.  After holding the laptop in a uniquely awkward fashion so he could watch a Caillou for a while, I finally decided I had to get up.  So after five hours of the horizontal hell, Ray and I switched places and I emptied my bladder and put on my PJ’s.  Now Ray is snoring so loudly that the cocktail must be working, because Eli is snoozing soundly.

So, if you get this in the night, please pray that the pain would subside and that Eli would get restful, continous, uninterrupted sleep.  Pray that the nurses will be carefully attentive to his pain management and that we will be discerning in how to comfort Eli and gracious as to how to communicate with the hospital staff.

One more thing….during one of Eli’s spasms, as he was breathing deeply, he looked at me with tears in his eyes and said “Everyone is praying for me, right?”  I thought I was going to completely lose it.  But I said, “absolutely” and then started praying louder over him.  It comforted him.

Love,

Angela

The surgery was scheduled to take atleast three hours, but was finished in less than two.  The surgeon gave an excellent report.  The tumor came out much easier than they expected, in one large piece.  This is a good sign that there were no small remnants left behind. 

In recovery, he slept for about an hour and then woke up quickly.  He enjoyed several blue icee’s and some cottage cheese along with an incredible nurse named Emily.  As the local anesthesia to his back began to wear off, he began to get quite irritated.  The pain along with the fact that he has to lay flat on his back has made for a very sad and quick tempered Elijah.  After a little battle with some oral liquid Tylenol with Codeine, he finally got some relief and is taking a little nap.

OK, the nap only lasted a few minutes, but now Ray is reading a new Batman book with lots of fun (annoying) noises.  That gives me a little more time to write.

We were moved into a room around 3:30pm.  We’re in room 8312 of Vanderbilt Children’s Hospital. 

Many of you have asked if you could visit and the answer is absolutely.   I know Eli would love the company.  Visiting hours are from 9am to 9pm.  For visitors under the age of 12, you have to have been free from any cold, cough, fever, or drainage for 7 days.  When you come to the 8th floor, you will go directly to the nurses desk.  You will receive a visitors badge there, and then be allowed to come into the room. 

We initially thought it would be good to wait until he is sitting up to have visitors.  Now we are thinking visitors might be a good distraction while he is confined to the horizontal position. 

When Eli is resting, we will have the hospital phone turned off.  You can call us on our cell phones or email us to let us know you are coming.  Angela can read her emails from her cell phone.

Thanks for your continued prayers.  We are so thankful to our Lord for carrying Eli and us through this process.

Love,

Ray and Angela

Baker’s is pretty tame on the mohawk scale.  Yes, his head is shaved on the sides, but the actual “hawk” (assuming the shaved part is the “mo”) is wide and only an inch or so tall.  What Eli really wants is what you and I think of when we think of a mohawk — shaved head, spiky, punk-rock-style. We’ve been out more than once and seen a punk-rock-style mohawk only for Eli to litterly drop what he’s doing, stop the person, and say “I want my hair like that.”  We got it cut for him recently short enough that he can put it up in a “faux-hawk”, and that satisfied the urge for a while.

Eli’s new obsession it seems is wheelchairs. Now, not once in any discussion related to this surgery has there been mention of a wheelchair, or him needing to use one.  Thanks be to God that we caught this well before there was any need for anything like that.  But as of late, that has been his number one request.  Why? “Because they’re cool!” has generally been his explanation. I think it’s primarily because of an exhibit at the Adventure Science Center, oddly enough sponsored by Vanderbilt Children’s Hospital, that shows kids what it’s like to use a wheelchair to do everyday things like getting around and playing.  They have to actually get in the wheelchair to do those things.  We can’t keep him out of that exhibit.  He loves it. And he’s really good at too.

So, I have no doubt that before our time ends at Vanderbilt, you will see Eli tooling around the halls in a wheelchair. Probably popping wheelies and running people over.  Don’t be alarmed.  At least he hasn’t shaved his head for a mohawk.

Eli gets a special birthday delivery and we have a little talk about what’s going to happen when we go to see Dr. Tulipan at the hospital next week.

It is obviously frustrating to reschedule your whole life, take off work, coordinate friends and family, and mentally prepare everyone for going through this, only to have it canceled. But, I do take some comfort in knowing that, despite his pain, he is in a lot better health than a lot of other kids.

Thank you all for your prayers. Please continue to remember Eli, and what God is doing through all of this, as the new date approaches. (And please pray we’ll just be able to get this done!)

More details to come.

www.patdanielsmith.blogspot.com

Believing in His Healing Power,

Ray and Angela

We’ve gotten a few notes from people that aren’t up to date with what’s going on with us.  Here’s an update from Angela and Eli.

This past Sunday we had two birthday parties for Eli.  You might already know that Eli was a 4th of July baby, so he’s going to be in a hospital in bed on his birthday.  Wanted him to be able to have fun and enjoy his birthday, so we had our families over Sunday right after church, and some of Eli’s buddies and their families over later that evening.

He got LOTS of great gifts, including plenty of things to do while we’re in the hospital.  His friend Seth gave him a copy of the book Franklin Goes To The Hospital.  What a great book!  It talks about a young turtle named Franklin that gets hurt playing soccer and has to check in to the hospital overnight for surgery.  Franklin goes through a lot of things that Eli is going to have to go through.  One of the best parts is when Franklin’s doctor is encouraging him to be brave, she says, “It’s okay to be scared, Franklin.  But being brave is doing what needs to be done even when you’re scared.”

Please pray for a brave heart for Eli.  And pray that God would be glorified in Eli through it.

We will be posting regular information and updates about his surgery and time in the hospital here.

Hopefully we will be able to post pictures and video of the whole experience, please comment on anything you see and send him your own pictures and video!

I will be posting some updates via Twitter, and all of those will be posted here.  You can follow us there if you like, but to be sure you don’t miss out on anything, subscribe to this site’s RSS feed, or check back here regularly.