Cast Change #3 & 17 Months

Today we visited Dr Conklin at Children's South for our 3rd follow-up from ortho surgery. Mom and Greyson accompanied us, since Josh was at work. We stopped for donuts on the way up, and still arrived a good 30 minutes early. Greyson pulled C around in a wagon, and they played on all of the toys in the waiting room.

They weighed him - which they don't typically do at these visits, but I was pleased to see he'd gained 2 lbs since appointment with nephrology last week! It may not have been a full two pounds due to scale differences and clothes, but it's still pretty encouraging. Will cut C's casts off... screaming ensued. His little sweet feet look SO great. I'm more impressed at every cast change :)

Dr Conklin came in for a look, and introduced us to our orthotist, Bill. Bill is a nice guy... and he was so good with C. He did a simple, thin cast on each foot and then cut it off (no saws, less drama). He confirmed that we got great molds, and then let us pick out a color for his braces - we went with camo! He explained that they could be worn with shoes, but to wait to buy them after we get the braces in. I. Can't. Wait. I am a shoe person. My child's feet being shoe-less has driven me crazy since day one. Our first shoe-shopping trip will be a big deal. Bill said his good-byes and Dr Conklin and Will returned to put (hopefully) Carter's final set of casts on. We switched it up a little this time... we'd had red long enough :)

They thought mom was one of my friends... and were shocked that she was Carter's grandmother... go figure. Will said we've got good genes ;) lol Carter did his normal wailing during the casting, and then we were set - scheduled to return in 2 weeks! Bill will be there to ensure our new AFO's (ankle/foot orthotics) are a good fit, and Dr Conklin will give us a Wear Schedule. We're so excited to be cast-less!

After our appointment we headed to the Cheesecake Factory to celebrate new casts. Carter ate like a little pig, and especially enjoyed the whipped cream off of Meemer's cheesecake.

Carter is now 17 months old... my how time flies.

Eating:
- He officially despises baby food, so we have given that up
- He is still on the Similac PM 60/40... 3  9oz bottles a day - first thing in the morning, mid-day before nap (which he rarely eats much of), and then one before bed...
- He gets 9mLs of corn oil in those bottles for extra calories- yummmm....
- A bowl of oatmeal with prune apple juice for breakfast... to keep him regular :)
- Applesauce at lunch
- Chef Boyardee is our new best friend... this kid loves pasta! this is what he eats for dinner most nights
- Snacks throughout the day to include goldfish, Ritz crackers, Cheez-its, Cheetos, cheese puffs, breads, graham crackers, and his new favorite - ICE CREAM!
- He still won't drink juice... and won't drink anything but water out of his sippy cups... he will drink anything out of a real cup, even if he doesn't like it. We've avoided this with the casts since he tends to get messy :)

Meds:
- Half a packet of Culterelle for Kids in his first bottle
- 3mLs of iron and a crushed cranberry tablet in his oatmeal
- Half a capsule of macrodantin in his bedtime bottle

Speech:
- People: Mama, Dada, Papa, Meemer
- Objects: ball, bottle ("bah-bah"), Tick Tock Croc ("tih-tah-cah")
- Eating/Manners: more, please, all done, thank you (he can sign these, too!)
- Body parts: ears, eyes
- Other words: down, out, pow-pow! hi-ya! arggh! this, where'd it go ("go?"), blastoff! and my personal favorite - Amen (pronounced "Da-Da" very sincerely at the end of every prayer)

The kid gets cuter, smarter, and funnier every day. He brings us so much joy, and I am so blessed to have this little miracle in my life.

Now I lay me down to sleep...

One of my favorite times of the day is putting Carter to bed. He's usually ready for it, and smiles and giggles the whole way back to his room. Josh and I have made it a habit to tuck him in together and say a prayer as we turn on his music, projector, and humidifier. He tries to mimic when I say "Amen." Then he gives us sugar before we lay him down. Obviously some nights I'm on my own while Josh is at the station, but we still stick to the routine. He's too grabby for regular books (he tears the pages)... but I can't wait til he's ready for bedtime stories. Here's a picture of the sweet dreamer.

And now this momma is off to dreamland!

June Kidney Report Card

Carter's kidney is doing wonderfully! Today we went to see Ms Mary Jane, and let me tell you... it was a long afternoon. Our appointment was at 1, and the clinic was super busy (along with the lab). We didn't leave the hospital until almost 4. Carter cried for the stick. Enjoyed a wagon ride (because now he has a small episode when he sees a wagon... he HAS to get in it!). Screamed because it was nap time. For nearly 2 hours. Screamed. They didn't even try to get a blood pressure on him because he was so irritated. He managed to flirt with our favorite renal nurse, Nikki, and of course batted eyes at Mary Jane. They couldn't get a completely accurate weight on him because of the casts, but he came in at 21.8#. She said according to his recorded weight the day of his surgery back in May, though, he had gained at a good rate for that month. We talked about how his appetite has definitely increased, and that he is doing really well with table foods now, as well as the added oil in his bottles. His potassium was smack-dab in the middle of normal - woot! Maybe next time it will be on the low end and we can start trying whole milk instead of this uber-expensive formula! Speaking of next time - they've released us for a 3 month stretch this time, as opposed to our normal 2 month check up. She wants us to get a weight on their scale when we come next month (cast-less) for our urology appointment, and then we'll see her in September! We're also switching back to the macrodantin for his prophylactic since he always ends up with e. coli, which is resistant to bactrim. It's a little bit of a pain since he has to take half of a capsule... therefore we have to guess what half of the powder inside is... mix it in a small amount of formula that we know he will actually eat.... pray fervently that he eats that whole amount.... etc, etc, etc. Maybe it will cut down our UTI's further, though! His iron/hematocrit still needs improvement.... today instead of G-tube threats, we talked about IV iron. We shall start being more faithful with iron, lest we end up starting an IV every month - BLAH. Dr Feig stopped by to say "hi", and then we made our way back down 65. Overall, the kid is doing well. We couldn't be more blessed that what we originally thought would be our biggest struggle medically is actually the least of our worries. When Mary Jane and Dr Herndon did our initial consult and viewed our ultrasound, they went over possible scenarios of dialysis, transplant, hospitalization. 2 weeks or 2 years. They had no clue what the extent of damage (or lack thereof) may be to his lone kidney. For whatever reason, God allowed that tiny bean shaped organ to be healthy. thankyoujesus!

March for Babies 2012 - Team Carter's Love

Yesterday we walked in the 2012 March for Babies. This year I headed a team - Carter's Love - and we raised a whopping $665 for the March of Dimes. We were accompanied by my mom, our friends Nichole and Terri Sayer, Wendee Wingo, and the Hines family. We're already looking forward to next year's walk.

Meet the Hines family. Todd works with Josh at the fire department. They're tiniest, precious little girl, Madalyn, is 2 months old and was born without the lower part of her right leg. Please keep them in your prayers, as she'll have her first surgery in July to prepare for a prosthesis.

Carter took a monster 3 hour nap when we made it home, and then we went to Meemer's for play-time. He ate all afternoon... first an ice cream cone...

And then cheetos... which are great for sword fighting.

This has been a surprisingly laid back weekend... tomorrow we head up to Children's for our kidney report card with Ms Mary Jane Gillum, CRNP. Stay tuned for more on that...

Cast Change #2 & Haircut #2!

Today we went up to Children's South for our second cast change. C's 4 weeks post-op. We had quite a wait, but he went on his first (of many to come) wagon ride today!

Dr Conklin said everything looks wonderful. The patch of irritation that was on his right foot had healed over beautifully. We talked about our next appointment - he's planning on taking the casts and buttons off, and getting some molds to send off for some professionally made AFOs. We're going to bring our old ones and see if they fit well enough to get us by until the new ones come in... but if not he may have to re-cast him in the interim.

AHHH!!!

Tongue depressors = distraction

As if we hadn't tortured him enough today... we took him to get another haircut from our favorite hairdresser, Leann! He did alot better this time... and only screamed a little bit.

We went out for Mexican after his haircut, and he was in such a good mood! He even ate some rice and beans off my plate... sorry that the video is on it's side... I always forget to turn my phone...

Cast Change #1

This past Thursday we took Carter up to Children's South for a cast change with Dr. Conklin. We were in and out for this in an hour - which is AWESOME! Besides a bit of irritation on his right foot from being in a new position and rubbing a little, he said everything looked wonderful, and we could come back in 2 weeks for another check... it'll be more like 3, because he was so booked up with appointments. Here are some pictures from the event. WARNING: some of these are a tiny bit graphic... just a heads up if you're squeamish :)

C was NOT a fan of the saw and his nurse cutting his casts off

Dr C's inititals were still there

Left button

Button explanation: they moved his anterior tibial tendon (runs down the inside of the leg and connects on the inside of your ankle... this was pulled too tightly and pulled C's foot up) to the top of his foot to allow it more length. The way they do this: they drill a tiny hole through a bone in the middle of the foot (see previous post with x-ray image) and then anchor the tendon through there. They stuff the tendon through the hole with sutures, and the sutures are brought through the bottom of the foot. To ensure the tendon remains secure, the sutures are threaded through a shirt button and then tied off.

Trying to distract him by letting him play with the x-ray viewing board

Right button

His incisions were so much tinier than we expected... we were thinking they would travel up his leg... but they are all so short and precise! He has three on each foot (I think): top of foot, heel, and side of ankle... and then his buttons :)

His little sweet feet look so straight now!

Dr Conklin (far left) and our amazing ortho tech Will (middle) making new casts.

I'd never seen casting done (I've never had one!) so it was really interesting. C didn't think so.. he screamed most of the time.

Shiny, new, red casts!

Later that night this boy was WILD. He was pushing this conglomeration of toys down the hallway. He's getting sooo strong. I'm sure he's burning triple calories, too. Bye-bye weight... sheesh.

Crazy bucket head

We'll return to Children's the end of May for another cast change, and then hopefully a couple weeks after that he'll get them off! I can't wait to get this boy in the pool... and I'm sure he can't wait to play in the bathtub again. 

An apple a day...

He didn't like the way it tasted, but he had fun biting into it!

"The Josh Look" finally caught on camera