Our 4th of July - Lots of pictures!

Ok so this is a little late, but at least I'm getting it done.

The 4th of July is kinda special to us for more than the obvious reasons - it was the first holiday we had together after Riley got out of the NICU. So, we try to do stuff to make it special every year. Since the 4th fell on Sunday this year we celebrated on Saturday and Monday! On Saturday we grilled out and me and the kids made patriotic cupcakes (and also a plain cake with no sprinkles for Daddy -party pooper). We really had a good day - just relaxing. On Monday we went to a fireworks display. We actually ended up watching with some friends that happened to have parked in the same parking lot. The fireworks were really good and I think we all enjoyed them - except for Riley. He LOST HIS MIND. He does not like fireworks. We had hoped he had outgrown this, but maybe better luck next year. We fully intend to subject him to fireworks until he gives in. ;)

COULD IT BE?...BOBBY FLAY.......No, just Daddy setting the burgers a blaze!

The smoke has cleared - the Iron Chef has everything under control!

Burgers, baked beans, and chips - dinner of champions!

Hey Mom the cupcakes are good, baby! (He actually said this!)

All American boy

Riley and Bro. Bobby

The skydiver with the American Flag

Jonathan is keeping Tate happy

I really was there I just don't like being in pictures!

Riley Update - Warning He's Half Naked

I realize my last post was pretty pitiful and it is definitely time for an update on Riley's situation. He is doing much better. He is eating well now, however he still has a lot of weight to put back on.(Wish I could give him some of mine.) His first question after any meal is what we are having for the next, so I think I'll take that as a good sign. ;) We went back to Atlanta last week for a follow up appointment. The ride up was miserable for him. He kept saying his tail hurt and he had a really boney butt bone before he lost weight and it's even worse now, so we just assumed that was the problem and kept adding pillows to his carseat. Well, by the time we got to Atlanta and stopped to eat he was just crying and didn't want to eat. He just laid down on the bench with his head in my lap. When we got to Ronald McDonald house he didn't want to sit or stand the only way he was comfortable was laying down. We determined after much questioning and hair pulling (mine of course) that it wasn't his tailbone, but actually in his abdomen that was hurting. We finally called the urologists office to see what they thought. Thankfully Riley's uro was the one on call. He said it sounded like bladder spasms to him and asked us if we had been giving him the Ditropan for it. HUH? What Ditropan? We never got that prescription. Anyway he told us to give Riley some Tylenol since he was comfortable laying down and he would see us in the morning. Well, after a pathetic nights sleep we went to the appt and had Riley's staples removed, and the doc looked Riley over. It went fairly well. There was some drama with the staples, and we found out why when we tried to flush one of the tubes we are supposed to flush everyday that the water just shot back out at us - the resident that stitched the tube in place stitched through the tube so there was a hole in it! We also got the Ditropan and things are much much better. One wonderful side effect is that it may cause drowsiness, so we had a very quiet ride home. Also, Riley had bloodwork done using his new port. (See pictures below)We go back next week to have the one tube removed and to begin cathing Riley's bladder. I'm both excited and nervous for this next step. It gets us one step closer to normal though. His personality (and attitude) have mostly returned. He wants so bad to have no tubes and go swimming. Soon enough my little man!

He's cuttin' a rug. The tube that comes out next week is taped to his right leg. The other tube has a bag on it and is secured to his left leg. They really seem to slow him down!

Here his old catheter is gone. No more dressing changes!

Here's a reminder of his old catheter. We don't miss it!

Please Pray

We've all been home since Tuesday from Riley's surgery and to be honest with you I couldn't begin to tell you how many times I have cried each day. He looks so weak and frail right now. I was so proud a few weeks ago when we got to take his feeding tube button out and right now I'd love to have it back. He's eating just fine, but he lost sooo much weight while he was in the hospital. He looks like someone from a third world country. It just makes me so sad to see him this way. He's just not himself either. This surgery really seemed to take something out of him and it's just not coming back like it usually does. Maybe it's just b/c he's bigger and understands more now, but I just want Riley back...my once chubby, happy-go-lucky Riley. I've never had one of his surgeries hit me this hard either. Maybe I'm just on the verge of losing my mind.