Friday, June 29, 2012

Brace Yourself!

Yesterday we traveled back to Children's South to visit Dr Conklin. Due to issues with their scheduling system they recently migrated to, we were not on the schedule :) So we had a little wait while they worked us in.

Carter weighed 23.5 lbs this time. Thankfully we WERE on Bill's (the orthotist) schedule. Will cut Carter's casts off for the last time, and Bill promptly slipped on Carter's new AFOs to make sure they fit correctly. He was pleased, and explained to us signs to see if they are rubbing, etc. Dr Conklin made a quick appearance and cut off both buttons, and gave us our wear schedule (full time, basically, besides bath and pool time) and asked us to come back in 6 weeks to follow-up on his progress.

We had to stop by and see Meemer so she could see his new braces, and his new shoes!

He's been doing really great with the braces so far. His legs are super sensitive and all of the stitches are still working on dissolving/healing. He's losing dead skin like it's nobody's business, and he's itchy if his socks/braces are off. I've been scouring the internet to find suitable socks, as our normal socks are not tall enough. Thankfully Bill brought us two pair of AFO socks that will get us by for a little while. Carter is back to scootching all over the place... he's a little faster now that he can bend his knees again. Today we went over to mom's and he saw Greyson eating an ice cream cone, so of course he had to have one.

We received a letter in the mail today from our neurosurgeon, Dr Wellons, saying that he was taking the position as Chief of Pediatric Neurosurgery at Vanderbilt University Medical Center. He is a wonderful doctor, and Tennessee will be lucky to have him. Thankfully we frequent neurosurgery the least, and all of our replacement options at Children's are outstanding. I think our next visit with them is September. Next up is a trip to the downtown campus on Monday for a renal ultrasound and urology appointment. We'll also be dropping by nephrology clinic to have Carter weighed now that he's got his casts off... hopefully he'll show a decent gain this go-around. It'll be a long day for little man - so keep him in your prayers!

Monday, June 25, 2012

Picture Post

We took a trip to Bass Pro for Father's Day - C loved it!

And he rode in one of these for the first time at Publix...

Steak N Shake lunch with daddy... coloring.

Fire Station Trip 

Saturday, June 16, 2012

Father's Day

This boy is his daddy's world...

Josh has changed so much in the past 2 years. There was a transformation when he found out he would be a father, and then further change when we realized we may lose that opportunity. Once Carter was delivered safely into this world, he became my rock through the early days of surgeries and sickness. He has been involved in every aspect of Carter's care - feeding, diapering, administering medicine, taking him to the pediatrician, and keeping him on his off days. They have so much fun at home together, and I'm so thankful he's willing to spend his free-time with our little one when he could just as easily leave him at daycare. I love this man more than words, and am so glad that God chose him for me and Carter.

Thursday, June 14, 2012

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.

- 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 :)

- 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

- 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.

Tuesday, June 5, 2012

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!

Monday, June 4, 2012

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!

Sunday, June 3, 2012

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...