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.

Jacksonville Dialysis

Ya know I never thought I would miss the place. Oh I knew I'd miss the people, but I never thought I'd miss the ride or the exhausting effort it took just to get Riley there three times a week. But oh how I miss it! I miss feeling like I had a job, a purpose, a goal to accomplish. I feel I lost my job - I got fired from a job I complained about alot. I know, I know I have the most important job on Earth - being a mom, but I just want to have something more. Is that selfish of me? I hope not, I'm just sharing my heart. Now don't get me wrong I'm very appreciatative for the gift of a new kidney (so much so that sometimes I feel guilty), but I just miss getting out, having a routine, a schedule. It feels impossible lately with a 7 month old. I know it will come. After all, Riley and Regan start school in August and Tate will settle into a routine at some point. I hope you understand these are just the ramblings of an overstressed mom who desperately wants to be with her oldest boy.

Anyway, we went to visit last Friday before Riley's surgery b/c we hadn't been in a while and I wanted to share some pictures.

Riley, Ms. Cindi doesn't have cooties - she just left you for the 6th floor!

Riley still loves him some Ms. Donna lovin'! Mama sure appreciates her allowing me to have a few meltdowns especially when I found out I was pregnant!

Gettin' smooches with Ms. Celine. Sorry, there's no more milk belly to tickle.

Checkin' out pictures on Ms. Lisa's phone - probably of Logan and Morgan

Riley's Wall of Growth - yes they really marked his height right on the wall - don't tell the administration!

Look What's Missing & an Update

(Other than his pants)....He doesn't have a feeding tube anymore! (Notice the little brown looking hole on the right side) Since he is eating so well now and we don't use it for formula and he doesn't have to take the one yucky medicine we were giving him by tube the docs said we could take it out. Yeah a new milestone for Riley (and Mommy).

Now the update...

Riley had surgery this past Tuesday to enlarge his bladder and build a mitrofanoff (tube from his bladder to abdominal wall) that we will use to cath his bladder. It was quite an extensive surgery - lasted more than 7 hours. He also had his central line catheter (the blue and red catheter in the above picture) removed and an under the skin port put in it's place, so now he can go swimming at the beach or a pool, take showers, and his most exciting realization the night before surgery..."Mama I'll be able to lay down and blow bubbles in the tub like Regan!" The surgery went well-they were able to do everything they had planned. Riley was really sore and in a lot of pain. We've had a few bumps in the road and up and down days, but all and all he's OK (Mama, not so much). My original plan was to stay up there at the Ronald McDonald house until discharge, but doing that with Regan and Tate was just impossible, even with my niece there to help. So, we came home on Wednesday. I've been loosing my mind ever since. I don't like this role. When he had his transplant I was there in the beginning, but then I had Tate and well obviously couldn't be with Riley. Now I want to be there! I'm supposed to be there! Please just pray for my sanity and peace. I'm really struggling lately - even before Riley's surgery.

Look What I Found...

Tate's first teeth! Can you see them? Aren't they precious? It felt like it took forever for them to come in. He sure was an ornery little dude for a while. The bad thing is now he's working on the top two!

He's Eating...ALOT!

I know it's weird that this is my first "real" post, but it's just what's on my mind tonight. We went to a local Mexican Restaurant tonight for supper and we just could not fill Riley up! I know some of you may be thinking "big deal", but it really is a big deal. You see for the first 4 years of his life Riley has received his main nutrition from formula through his feeding tube. It has only been since his kidney transplsnt that he has actually started eating anything much to speak of. He started first with pizza and BBQ chips (mind you the boy still loves him some of both), but now he will try just about anything. He still has a few things he just doesn't like (mashed potatoes and gravy and mac n cheese -pretty much anything mushy and cheesy). I've been taking pictures of his meals:

Valentine's Day cupcakes

Favorite lunch - rotisserie chicken & ketchup (that's a food group ya know!)

Good ol' Hamburger Helper Lasagna!

His favorite breakfast - bacon and eggs!

I've been taking these pictures partly because I was amazed and also b/c the ladies at dialysis in Jacksonville couldn't believe he was eating! (Hey ya'll!) I've got alot more i haven't downloaded from my camera, but I wish I had had my camera with me tonight. He ate 2 plates of chicken, beef, rice, french fries (ketchup), and corn. He wanted a third, but we felt we better not push it. Then later he asked for a salad like Regan. Thank you Lord for this boy's appetite. He has lost a good bit of weight in the last 3 months and we were a little worried we might need formula again, but I think Riley is just coming into his own at the dinner table. Way to go Big Boy!