Urology/Ortho Update

In case you don't remember, Carter's renal ultrasound last month didn't look too great. Tuesday we went up to Children's to have a repeat ultrasound and see if the 3-4 times daily cathing was helping his fluid retention on his kidney/bladder. Dr. Joseph said everything looked much better - his ureter was still dilated, but it probably always will be. He said eventually we will talk about "reconnecting" Carter's urological plumbing, but he would probably always need to be cathed to keep fluid off of his kidney. It won't be for at least another year that we have to worry about that. The only other thing he addressed was that his urinary stoma was definitely too small, and should we need to go to the OR with any other doctor, he'd like to know so he could possibly revise the stoma while he was already under. We've been released for another 6 months, assuming he has no complications :) We like to hear that! This was an awesome appointment, and we were in and out before our actual appointment time ever came around! Carter had a blast flirting with the nurses and the resident. Afterward we took a trip to Johnny Rockets for burgers and milkshakes!
Today we went to Children's South to follow-up with Dr Conklin. Carter has been out of casts for 6 weeks, and has been tolerating his braces wonderfully. He actually doesn't like to have them off, and asks to have his socks and "shoes" back on! We've been wearing them pretty much 24x7... besides during swimming/bath time. Today, Dr Conklin let us know that his feet look beautiful, and that he's comfortable with us decreasing our wear to just 8 hours a day. He wants us to start seeing Early Intervention for physical therapy to help with Carter's developmental delays that have been caused by his muscular/skeletal issues. We'll be calling to set that up in the next month. He said he had no doubt that Carter would continue progressing on his own, but EI would help get him up to speed faster, and give us some things to work with him on at home. He released us for 6 months, but also suggested that we may want to be seen in the Spina Bifida Clinic, which incorporates Neurosurgery, Orthopedics, and Urology all in one day's worth of appointments. Dr Conklin, Dr Joseph, and Dr Blount all participate in this clinic - so we would essentially be seeing the same doctors, just all in one day. This will more than likely work really well for us now that we're going 6 months or so between most of our appointments. Dr Conklin's nurse is forwarding our information to Betsy (nurse in charge of SB Clinic) to see if we qualify to be seen in this clinic... while Carter's tethered cord was not a true case of SB, his history with urology and neurosurgery may fit the bill.

Tuesday in Urology clinic, Carter weighed in at 22 lbs. Today, he weighed in at a whopping 24 lbs. Mind you, he was fully clothed, shoes, AFOs, the whole deal - at both of these weights, but it's great to see numbers like that. The kid has been eating NON-STOP. It makes my heart happy to see him munch on mini-waffles in the morning :) He's even chugging his formula while holding the bottle himself... a big improvement from us having to sit and hold it/offer it for an hour for him to drink half. He basically eats anything we're eating - even most meats! He's a big fan of ice cream and cheddar Chex mix right now. I think for the first time we aren't stressing about his weight, and may actually be looking forward to our September appointment with Mary Jane!

Carter's speech also continues to thrive. The kid is such a ham and will show out like no other when you ask him to do or say something. He's an expert copy-cat... especially with noises. We love the way he says "Meemer"... which comes out something like "Muhhhmuhr" and sometimes he growls it when he really wants to get her attention. He's not big on calling out "Dadda," but has no qualms about shouting "Momma"... over.... and over... and over. His new favorite animal noise is the cow - "Booo!" We had a miscommunication on that one... but it's close! It's too much fun to watch him learn new things.

And now... for some pictures :)

Getting used to these legs!

 Munchin' on a waffle before church

Ice cream cones are delicious! 

I love Cracker Barrel! 

Hold on tight! 

Johnny Rockets after our Urology appointment... he loves milkshakes and hamburgers! 

Having fun while we waited for our Orthopedic appointment 

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!

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.

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...