The big hearts of Bus 214

Travis' bus driver, is unlike any other I have ever known. She gets the kids involved with several service projects throughout the school year. They do toy and food drives during the holidays, and all year long, his bus collects...pop tabs, for the American Legion, who in turn, take them to the Ronald McDonald House of Durham. OUR Ronald McDonald House.

Pop tab collection for Ronald McDonald Houses (around the country) is NOT an urban legend. Each house takes the tabs that are donated, to an aluminum recycling center, and then receive money in exchange for the tabs. That money is then used to help meet expenses at the house.

Pop tab fun facts:
Approximately 1,430 pull tabs = one pound

The RMH of Durham receives the going rate for aluminum, which changes as the demand changes - varying from rates of 23 to 52 cents per pound on any given period.
The RMH of Durham averages about 450 pounds every 10 days, or approximately $234.

Every penny helps families stay at the House -- $10 pays for one family for one night!

Travis' bus collected right at 100 pounds of pop tabs this school year! That is enough pop tabs to fill TWELVE 2-gallon zip loc bags!!! That is enough to provide at LEAST 20 nights to families with sick children at Duke Children's Hospital. He and a handful of other students were asked to come represent his bus, as they were recognized for their collection efforts.

Ms Leslie got up, told about the giving hearts of the students on her bus. She pointed out our family, and how the Ronald McDonald House had helped us. Another students family has stayed at the RMH of Chapel Hill.

Travis and his friends (and Riley) present all the tabs collected to the crowd (as Mommy cried)


They were all presented with a flag for their efforts


So next time you crack open a soda can, a soup can, or any can with a pop tab, make sure you save that tab. The family you help could be mine!

Finding our new normal, again

Riley is doing ok. One day last week, he vomited several times, after a day of obviously not feeling well, and then he quit and returned to "normal". Not sure what that was about, but we are muddling through. As much as he seems fine, he has several issues that hopefully will just take time to resolve. His body has proven time and time again, that it is incredibly adaptive, so we just have to wait for it to adjust. I've been asked several times why we basically seem so calm about his success. I always thought I'd be throwing a huge party when this day came, and apparently a lot of other people thought so also. But now that he's reconnected, I've realized that he's still just my Riley. The same little boy that has overcome incredible odds before, has done so once again, and has had his (and our) 'normal' change once again. I am incredibly proud and happy about this difference, but mostly I am just thankful. Thankful that he is a fighter. Thankful for living within a couple hours of one of the top 10 medical center's in our country. Thankful for poop. Thankful for friends and family that supported us and HIM, different or not. Thankful for the prayers of thousands of people, who never seemed to tire of his endless antics and setbacks. And thankful for a little boy, who is constantly asking for his "momma".

How about some pictures from the past several days....

He has become very independent lately, and no longer allows us to feed him with a spoon. He has to do it himself. Which can be rather messy, but overall, he does a good job.He also seems to be a lefty. We'll see if that continues. (he's using his right hand in this picture, he does switch it up time to time but always returns to his left hand. He makes a much bigger mess with his right hand, and does it nearly perfectly with his left)

The wonder dog

Pointing out planes


What? Donut? I don't know what your talking about

Showing Respect

So I said I had something.....special. Some of you won't get the full significance of it. But here it is!

This Carolina Girl knows no better way to pay her respects than this....


Thank you Duke Medical Center, Duke Children's Pediatric Surgery team, Duke Pediatric Gastroenterology, and all the fantabulous nurses that have taken SUCH great care of Riley Bear, for saving AND fixing him. It may have taken 16.5 months to do it, but whats a year and half compared to a lifetime of being "normal"?

(PS: Riley is doing ok. Obviously not 100%, probably not even 75%, but he's doing ok)

Surgery day recap (so far)

What a day!

Last night,at 1:30am, the three of us were woken at our hotel by the fire alarm. The loudest fire alarm I have ever heard. Jay and I were scrambling around trying to figure out if it was for real, all the while getting jackets on and such to leave the room. Riley was screaming.....it was quite the experience. Turns out, someone burnt something in the microwave in their room which set off the alarm. How nice.

So back to bed, until 4:30am, when we had to get up again, to get ready to come to the hospital. Arrive there at 6am, wait about 30 minutes to be taken back. Riley was taken back to surgery pretty close to 7:30am, so right on time today.I donned the "bunny suit" as they call it and carried him back there again. He wasn't as peaceful about it this time, even with a little pre-sedation. He put up a little bit of a fuss, but I'm still glad I could be there. When he was out, he went limp in my arms, which was disturbing, but there again, I'd rather have that memory than know he was back there with strangers and terrified.

They got an IV in him on their first try! Than in itself is a small miracle. So no central line. Surgery began about 8am and lasted 2.5 hours. There was no phone call to say there were done, Dr. H just surprised us like last time and was all of a sudden there. That scared me to begin with because he has always called out,other than his emergency surgery that time, so I was afraid he wasn't able to remove the ostomy due to other issues. But he DID reconnect his ostomy. He had to free up all his small intestine again though, as there were some areas that were dilated a little larger than he liked, so he wanted to be sure there was no partial blockage. He was thorough in all that he  did, and we will gladly trade extra worry at the amount of time the surgery was taking, in exchange for a job well done. 

He's not going to be a softie on Riley this time in any way. He intends to keep the Replogle tube in until its evident that stuff is moving through. I don't know if this means until he poops or just until the stuff in the tube is no longer green. Either way, if Riley yanks the tube out this time (like he did the morning after his last surgery), he's getting it put right back in. We want that connection to have all the time it can to heal without any unnecessary pressure on it. They have already ordered up some arm restraints that they refer to as "no-no's", in preparation for the tube yanking that is likely to come. These are just stiff wraps that will go around his arms, preventing him from bending his elbows, to be able to reach his face. Sounds like a good time doesn't it?

Currently, he is resting somewhat comfortably. He has moments of irritability, and it can be hard to discern if he's in pain, or just uncomfortable with the position he's in, or just aggravated, etc. When we were first allowed back to post-op, he was laying on his belly with his knees drawn up underneath him. Seems that when he first rolled into post-op, he was on his back, and then rolled himself onto his belly. The nurse had to flip him back to his back to examine his incision line and listen to his belly and stuff. Once she was done, he rolled right back over. He's laid that way the majority of the day, but he's on his back right now with a pillow propping his legs up some, and blankets kind of bolstering his sides.  He is running a low grade fever, which can be common after surgery, but is obviously something that everyone here will keep a close eye on.

He is back on the regular pediatric floor, in the same area we were at before. Our nurse was the nurse he had the day the leak was discovered back in September.  A few other nurses have already come by to see him, as they saw his name on the board today.  All have commented on how big he is now.

His room, doesn't have nearly as decent view as his last room did. It looks out into a courtyard of sorts, that is really just where other walls make a square over a roof below. However we can see the blades of the helicopter when its on the roof from here, and watch it take off and land. God's way of therapy?? Either we will be commited to the mental ward before he's discharged from the stress of the helo's or we'll be over the trauma of them one right? I'm sure he will love watching them once he's feeling better and can get out of bed and over to the window.

Jay just went down to get our stuff, to "move in" to the room, and then is going to get us some dinner. Riley is sucking away at his paci, I can hear him (well see him too but can hear it without looking) and cuddling his bear. Today went well obviously, but we aren't celebrating yet. He's got to heal. Once that happens, that will be when we celebrate. Until then, we will do the best we can to keep him comfortable and occupied/entertained, and try not to go crazy within the confines of a small hospital room.

Thank you so much for all the sweet comments and emails today. As I said last night, they are really uplifting and we certainly appreciate you all taking the time to care enough to check in on sweet Riley Bear. Hoping to Skype with Travis later tonight. He's going to love that!

Ready for today to end, but not for tomorrow to come

Well, we have almost made it through today.

Riley had his contrast test this morning. It showed a couple of potentially troubling areas in his large intestine. But these tests aren't conclusive by themselves, unless there is a complete blockage. So, the surgeons will just have to check these spots out to know for sure if they are bad or not. If they are, then Riley will lose some intestine. If he has to remove those spots, he may chose to leave his ostomy in place for now, until those spots can heal. So...we have no idea what is going to happen tomorrow, other than he is scheduled for surgery at 7:30am, and we will have to arrive there at 6am. Of course an emergency could bump him to later like last time, we'll just have to see what happens.

Today, he has been restricted to clear liquids. Overall he has done great dealing with not being given food and milk. However for the majority of the day, he didn't consume much. Then this afternoon, he did a little, and promptly vomited. He begged for more, gave him some broth, which he gobbled down, and then he vomited that up and his bag leaked all at the same time. It was a fun few hours. Not sure what was causing the vomiting, but he seems better now. After effect from the constrast study maybe?? Not sure, but he's eat a couple jello cups and more broth since his last vomit and has done fine (so far).

He was in a pretty poor mood after his test this morning, up until about 3pm. But then, other than the vomiting, he was typical Riley Bear. Fun and playful and happy, and handling no food much better than we are! We have eat (once) today. Jay went to the cafeteria at Duke while Riley and I waited for his pre-op appointment (which they took us an HOUR early for, amazing) and then they browsed around in Target while I ate alone in the van. Dinner it seems will have to wait until Riley is asleep and right now he's going strong playing with his new Little People castle set from Target today. He deserved a treat right?

So...early morning tomorrow. Thanks so much for all the encouraging comments and emails. They have been very uplifting.

Eating broth like a good boy

Oh one plus today...they didn't have to stick him for lab work. They will draw what they need once he's asleep tomorrow. Hooray for him.

Dec 24: Christmas Eve...in pictures

Wrapping the last gifts

Making snacks


Baking cookies for Santa



Yep...he's trying to eat them

and wasnt' happy when I wouldn't let him

Watching the Polar Express


Sprinkling Reindeer Food in the yard


Cookies are done! Time to put them on Santa's plate


Putting the cookies and milk out for Santa

Get ready for it...


Riley should hope that Santa doesn't mind sharing his cookies!

Twas the Night Before Christmas...

And all through the house, not a creature was stirring, not even a mouse.

The stockings were hung, by the chimney with care,

In hopes that St Nicholas, soon would be there


The children were nestled, all snug in their beds,

While visions of sugarplums, danced in their heads


This time last year, I was sitting by Travis' bedside in the hospital, anxiously waiting Riley's arrival to that same hospital. It was a night, I will never EVER forget. I truly felt like I had been given the first gift of Christmas that night. The blog post I made the next morning, is one that will always be memorable to me. And a comment made on that post, will always bring tears to my eyes...."Yes Lindsey! There is a Santa Claus, and he can work miracles"!

Merry Christmas to all, and to all, a good night!

Thankful

What a difference a year makes.

Last year, Thanksgiving was a very somber occasion. Riley was fresh off his 2nd major surgery, and wasn't doing so great, I had food poisoning, and Thanksgiving dinner was re-heated to eat in a hotel room.

This year, Thanksgiving was at my mom's, where BOTH of my VERY active, VERY loud, VERY VERY VERY crazy boys kept us all entertained. Riley ate everything in site, and he and Travis gave us all two good reasons to be Thankful.








Riley tried his luck at some karaoke

Click on the one below, it's a video!


We also have spent the past several days, putting up all of our Christmas decorations. This is the earliest we have decorated ever. Well, usually we begin to decorate the weekend after Thanksgiving, but it usually takes us a week to get it all done. This year, we tackled it hard. Jay, Travis and I were all three very much excited to get the decorations up. And Riley seems to think that Christmas decorations are fascinating. He has squealed with wonder and delight at all the lights and sounds and textures over and over and over again. It's almost as if he KNOWS what he missed out on last year. His reactions only further fueled our Christmas spirit,and now, it's all done. During our decorating, Riley had his own way of "helping", and found himself tangled up in Christmas lights, all the while squealing and laughing about them, emptied out boxes onto the floor, strung tinsel and ornaments everywhere and tormented Travis (who hung most of the ornaments on our tree this year) with the ornaments on the Christmas tree. Outside, when everything is lit up at night, he nearly jumps out of our arms with excitement. Our family may have been seriously lacking in Christmas spirit last year, but we are more than making up for it this year!