Thursday, February 20, 2014

02/20/2014 Update and Some Pictures

Eli continues to work hard in his therapies.  At our care planning conference this week, the physical medicine doctor was very pleased to hear of his progress. That doesn't diminish the long road he has ahead but he is surprising us with what he's already accomplished.  Lately, he's been working better if I'm not there.  If he doesn't know I'm around he will work with a much better attitude than if I am there.  When he sees me he whines, wants in my lap, wants a ride in his wheelchair, etc.  So far he hasn't figured out that I'm usually watching at the window or around the corner!

Some things he's working on in therapy are balance, leg strength, arm strength, and trunk and neck control.  Sessions over the past two days, for example, include sitting on an exercise ball.  With a therapist in front and one behind him, they rock him side to side.  When one of us loses our center of gravity, what do you do?  Do you push your arm out to balance yourself?  That's what Eli did.  We knew he would to the right, but we were pleasantly surprised to see the left as well.  He even had finger extension with it (details that are a big deal!).  That shows the reflexes are there and with more (lots more!) therapy/rehab he should get some use back in that arm and hand.  How much?  We don't know but to see what he's shown at this stage is encouraging.  It's obvious to us that therapy is working and he needs to continue with it. 

Today in therapy, he rode a tricycle.  It was a special trike with foot and hand pedals.  The therapist used ACE bandages to wrap his left hand and foot to their respective pedals.  She sat on a rolling stool in front of him and steered while he pedaled himself through the hallway.  He went around the entire unit one time.  By the end it was obvious he was tired because his chest was almost resting on the hand pedals.  When I came up and asked what he was doing in therapy today, he looked right at me and said "We take this ours house?"  Erin (therapist) told me of a program that helps provide equipment like that to special needs kids.  There's a form to fill out and we also include how much money we're able give them toward the equipment ($0, $50, whatever).  They then use donations/grants to make up the difference and get him the piece he needs.  I think that trike will definitely be a request! 

Also today, he had an eye exam.  We've said from the start that we thought his vision was affected by the strokes.  That has drastically improved over the last couple weeks.  He can focus on objects and faces, he can track an object much better, and he doesn't seem as bothered by his vision as he was.  At one point we thought his eyes were working independently of each other, making it very difficult for him to focus.  We don't see that so much now.  Eli's eyes were dilated with drops this afternoon and later the pediatric opthalmologist came by.  After the exam he said he didn't see anything to be concerned about right now.  His exam was done in the therapy gym and Eli's PT and OT were there so they could also relate his history.  The doctor was very pleased to hear the progress over the last couple weeks and thinks the issues we're seeing with him may get better.  Right now, Eli's lower field of vision seems to be affected.  If he's looking at something on his lap, his face has to be parallel to it for him to see it.  Right now we can just encourage him to keep looking that way and hope it also improves with time.  We'll go back and see this doctor in May or June.  I like follow ups that aren't in the near future.  It's a rare comfort these days!

Here's a few pics I've taken over the last several days.  As I'm posting, I realize I don't have photos of his new wheelchair, his cool leg braces, or some of the other things that are helping us out.  I'll work on that because those are things I want to document for him.  He needs to see how far he's come and the types of things he had to do.

02/06/2014:  This is Eli working on the tilt table.  It's exactly what it sounds like.  He's laid on a table and straps are placed over his chest and legs.  Then the table is slowly raised until Eli is standing (about 70-80 degrees).  This helps hold him upright while he practices putting weight on his legs again.  He actually asks for this when we're in the gym. 

These are the knee imobilizers used to keep his knees from bending while he's standing at the tilt table.

02/12/2014:  Eli's feet and lower legs were casted so leg braces could be made for him. 

02/15/2014:  Silly boys! 
Zachary dancing in the hospital lobby.  He was so happy to see his brother for the first time in a month.  It was obvious it cheered both of them up to be together again.

We got to spend a few minutes together in the lobby.  Children are not allowed to visit the units yet because of the flu restrictions, but Eli has permission to visit the lobby a couple times a day.  We didn't ask because of Zachary, but it sure worked out for us!

Playing peek-a-boo

Eli with his friend (girlfriend?) Maddy.  She's an older woman at 19 years old, but so incredibly sweet that I can't blame him for having a crush on her.  She just completed a 29 week chemotherapy schedule so please keep her in your thoughts and prayers also. 

Eli helping one of his favorite nurses scan his nighttime meds.  He likes to help the nurses!

02/20/2014:  Balancing on an exercise ball.  The picture isn't the greatest quality because I took it through a window so he wouldn't see me!

02/20/2014:  Riding the trike in therapy.  This was at the end of his very long ride. 

02/20/2014:  Mike Wazowski in our bathroom.  Yes, it really is Mike Wazowski from Monster's University.  This balloon was delivered to Eli today.  A group of girl scouts brought it to the unit and the staff decided Eli should have it.  With its huge feet flat on the floor it stands 55 inches tall.  This thing is huge.  It's in our bathroom now because I'm afraid to sleep with it in the room!  I had to turn it around so it didn't watch me do my business last time I was in there!  It is taking every bit of self control I've ever had (and I don't have much) not to attempt to scare the staff tonight.  I really, really want to sneak it into the nutrition room (right across the hall from us) and shut off the light.  Then when a nurse goes in for formula or a drink she'll turn on the light and see this.  The only reason I haven't is because there is a nurse here who is about two weeks away from delivering a baby and I don't want to be responsible for sending her into labor tonight.  Eli gets a big kick out of this thing.  I do too but I just don't want to wake up to it!  I put it in the doorway to watch people in the hall while Eli ate supper.  Some thought it was funny and some just looked at me like I was really strange.  Fun times!

We do have the Eli's MVPs bracelets.  If anyone wants one, they are $3 each and if you need them mailed it will be a couple more dollars (so they can bypass the sorting machine and not get torn up).  Please contact us via Eli's Facebook page Eli's Facebook page or email us at  We also still have Pizza Hut coupon cards available for $10 each as well as the tshirt and hoodies for sale.  Contact us through the previously listed Facebook page or email for information or to place an order.  

Fundraisers still going on for Eli include:
Stampin' Up Fundraiser on Sunday the 23rd in Indianapolis.  For information click here.
Thirty-One  For more info or to order, click here
Origami Owl   For more info or to order, click here
Monetary donations can be sent to:  
Bethel United Methodist Church 
PO Box 791 
Washington, IN 47501
(checks can be made out to the church with "Eli" in the memo line.  100% will be deposited into the account set up for us)

The Pizza Hut fundraiser was a huge success.  We don't have the final total, but I think I heard Pizza Hut wants to make a presentation to us because it was one of the biggest fundraisers of this type they've done.  They're also planning on doing it again next year during CHD Awareness Week (Feb 7-14).  Thank you to everyone who made that so special for us.  Also thank you for the prayers, the care packages, the donations, and so many other things.  Eli is slowly getting caught up on his mail (a few a day) but it will be a while before he gets through it all...and it keeps coming!  The volunteers who deliver the mail are amazed by the amount of packages and cards he has received.  We are amazed by the support we've received from all of you.  Thank you doesn't suffice but right now that's the best I can offer. 

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