What a Week – Steven Takes Steps, Makes a Video & Goes Outside!

Denise sends a huge thank you out to the many, many, MANY people on Team Steven who sent birthday cards to Steven.  She said, “What a blessing you are to my son.”  Your cards and well wishes are such a great motivating factor for him – THANK YOU to all of you!!!

On the afternoon of his birthday, Steven actually took a few steps during physical therapy!!!  WOW!  We were all so impressed!  His mom said he received lots of cards over the weekend and again on Monday. She’d been reading all they’d received aloud to him on Saturday night. She said her voice was giving out, but he made her keep going until she’d read them all.  Check out this BIG smile on his birthday!  He was so happy to turn 18!!! 

So happy on his 18th Birthday - our sweet Steven!

They relaxed the concern for infection on his birthday, and TONS of family and some friends came by the hospital to wish Steven a Happy 18th Birthday on Monday – it was definitely something to celebrate … such an amazing milestone for our young warrior.  As you can imagine, the hospital isn’t the most festive environment for a celebration, but you wouldn’t know it from all of the festivity surrounding Steven.

Steven's Birthday Cake at the hospital.

All the excitement must have been good for him, as he had a wonderful night of sleep Monday night and finally got some good rest. He woke up Tuesday morning wanting a drink. He chose some Shasta Twist, which is a free drink in the ward. He took several sips of it and went back to sleep.

On Wednesday Steven had another day of rest and got dialysis … it is such a relief that he is sleeping better.  They found out that his last perotineal culture from April 8th did grow the Candida infection again, but this time it took longer for the Candida to grow in the culture, and he hasn’t run any fevers since April 9th. These are all good signs that he is battling hard against his infection. They’ll do another culture of his abdomen next week to see if it’s any better. So far, his blood cultures show no signs of the infection!  His mom thought he looks great even though he weighed only 80 pounds a few days beforehand. She thought he was packing some weight back on since they increased the calories in his daily IV food bag over the weekend. She said she hates seeing him so skinny!  He was starting to ask for food, and she gave him bites of a Reese’s peanut butter cup and anything else he requested.

This week’s update is emotional for all of us.  On Thursday, Steven wanted to thank everyone for their prayers, so he did a video for everyone!  My heart swelled as soon as I saw it.  I’m so proud of him.  He is so amazing, and your thoughts and prayers really do mean SOOOO much!  They’re working!  THANK YOU for all the love you send Steven’s way.  Because the video was posted to Facebook and isn’t on something like YouTube, I can’t embed it here, but I will include the link for you here to check it out:  http://www.facebook.com/group.php?gid=10150104869275494&v=app_2392950137#!/video/video.php?v=1294213710713&oid=10150104869275494 – you must be a Facebook member for the link to work directly to the video.  But if you’re not, try our link to his Facebook page on the left side of our blog here, and it will take you to his page.  Hit the Videos tab, and it will be the 4th one over.  Trust me, it’s worth the extra effort.  He is so sweet.

His Physical Therapist helped him into a bed that they took OUTSIDE!!!  (There’s a video of him taking steps to the rolling bed – 3rd one over on Videos tab.  Pretty unbelievable.)  Steven hadn’t been outside since checking into the hospital in St. Louis on February 15.  Warning … if you are able to view this video you may get teary eyed when you see him take the tube out of his nose to breathe the fresh air.  What a wonderful moment:  http://www.facebook.com/group.php?gid=10150104869275494&v=app_2392950137#!/video/video.php?v=1294225150999&oid=10150104869275494 – again, this direct link works for Facebook members; if you are looking at the Videos tab, this one of him arriving outside is the 2nd one on the Videos tab on his Team Steven Facebook page.

Steven told his Grandpa that he wanted to go home with him so he could teach him how to milk a cow!

Steven had another great day on Friday.  He had dialysis earlier in the day and received 2 units of blood. Great news:  His NG tube didn’t produce any bile, so we’re hoping that maybe things are starting to move the way they’re supposed to!! He’s also urinating again. We are wondering if maybe infection had all his organs messed up and now that the infection is going away things are starting to work again … wouldn’t that be awesome?!!  We are hoping!!  He has tried many different foods and drinks.  Nothing has tasted ‘right’ to him. They’ve taken him off ‘NPO’ (the IV) so he can order from the menu if he wants anything to eat.

He hadn’t been able to breathe without the assistance of oxygen for several days because it wears him out. But when he took that hi-flo tube out of his nose on Thursday to breathe that wonderful fresh air, he left it out and hasn’t had it back in since!!!  WHOA!!!!  His parents were amazed, as were the rest of us.  Every positive little move forward is something to be grateful for, and we continue to focus on those steps in the right direction.

On Saturday he had a minor setback with low blood pressures and bloody stools.  The day went a little downhill after he got dialysis in the morning.  He has had stomach pain for several days now, but this Saturday was the first day they’ve noticed blood in his stool in over a month. I was thinking that since he hasn’t really had any foods or anything until this past week, then perhaps that could have something to do with the stomach pain? I think maybe his body is going to have to re-train itself to deal with real nutrition again as opposed to IV … it hasn’t had to function like that in quite some time. Hopefully it will all improve as his body adjusts to more normal functions again.  He was supposed to get another unit of blood last night.  Today we’re just asking for more good intention that his bleeding will stop and the stomach pain goes away.

Oh, and speaking of blood in a REALLY good way, they had the blood drive in Steven’s honor at the Bristow Christian Center Gym yesterday in Bristow, OK.  We had 45 blood credits made toward Steven’s account!  Yea!  For those unable to attend, feel free to give at your regular donation location and inquire if you can have your donation credited to Steven Wilson at St. Francis Children’s Hospital in Tulsa, OK. Many blood banks will transfer the credits, and I know a few of you have already donated in his name, so THANK YOU to all of you from yesterday and beyond!!!!  Give blood. Give life.

And of course it’s never too late to send a birthday card or an uplifting, supportive card in general – Steven LOVES to hear from you all! Feel free to send any cards to him at:

Steven Wilson
c/o Denise Sargent
10111 S. Sandusky Ave.
Tulsa, OK 74137

Even J.R. Richards from the band Dishwalla told me he sent off an autographed CD for him Friday morning.  Yep, even the rock stars are showing up for our boy!  For those of you who haven’t heard J.R.’s solo CD yet, check it out:  http://www.jrrichardsmusic.com/ – support those who support Steven!  He has a beautiful voice, and such a good heart.  Thanks to J.R.!

So despite those setbacks yesterday, overall I think Steven has had an AMAZING week!!!  So many positives – starting with his birthday, being able to start eating foods again, taking steps in Physical Therapy and then getting out into the fresh air, which led to breathing without his oxygen tube.  Wow – what a week! 

Keep those fabulous thoughts, prayers and the good mojo coming!  Steven definitely feels your love, and it shows!

Steven surrounded by his dad and St. Francis staff as he at last gets to go outside!!! 🙂

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