UTIs & Updates

It's been forever since I made a post solely focusing on Carter's health and progress. You can see all of the fun things we've been up to at our Piatt Party of 3 blog! Overall, Carter has been AWESOME! Here are some highlights:

1. He's getting chunky. The kid will actually eat pretty well now. We no longer stress about every bite that he refuses. He weighed 27lbs (with clothes and shoes) at the pediatrician this week!

2. We went through a bad bought with UTIs from about February to late April.... I felt like he had one that entire time period. I'm not kidding when I say we would finish a 10-14 day antibiotic, and less than 2-3 days later he would run fever again and we would have to start all over. The last one at the end of April was two bugs... and it almost landed us a stay at Children's for IV antibiotics. Thankfully his kidney function looked better than it had in months when they had us get labs drawn in Montgomery, so we were able to try an oral antibiotic to clear it up. Since then they've switched his prophylactic antibiotic back to bactrim. He was UTI free through May, and just had a fever-fit this week. Hopefully this is not the start of another flood of infections.

 

3. Iron infusions! They decided after this last drop in his iron levels that we would try spacing his infusions out over a longer period of time to see how he maintained. His last one was in May (I think) and we have the last of this series scheduled for the middle of July. We're hoping that after this infusion his levels will stay stable, and we won't have to consider Epogen injections. Your kidneys aide in the absorption of iron by secreting a hormone - Epogen is a synthetic version of that hormone and "tricks" the kidney into functioning normally for iron absorption. Even though Carter's kidney function has always been decent, he does only have one... so this could definitely be a side-effect.

 

4. Physical therapy has been a blast. He had progressed so much! Just over the past month or so he has started trying to stand on his own in the middle of the floor. He's also getting much better at balancing and walking with assistance. Our current "homework" is to have him walk as much as possible. The hope is that keeping him on his feet will continue to strengthen his legs and core and give him more confidence in his abilities to stand and walk on his own. All is well on the speech-front.... this boy LOVES to talk!!

Making Strides

Since my last update, Carter has made alot of progress with his mobility. He had his first appointment with the physical therapist Thursday, and they did an evaluation. She doesn't think it will take very long for us to get him up to speed. She gave Josh some things for us to work on at home, like standing up using just a wall or other flat surface, moving from one large object to another for support, and bending down to pick things up while he's standing. We have a new rule in our house - if you want to go down the hallway you have to walk! Carter loves the hallway, so this gives us a lot of practice opportunity. Carter is almost 22 months old! It's crazy how fast this year has gone by. He's getting bigger and learning every day. He's eating well, almost off formula, and loves to chatter ALL the time. As I'm typing he's up front playing with his "laptop" with Josh and saying "Hola" when the song says it. He makes us laugh and loves to entertain! Here's the proof...

 

 

Early Intervention and a New Doc

It has been FOREVER since I posted an update about Carter. First let's get the medical stuff squared away. Since our last update on urology, he has been wonderful - ZERO UTIs. HOORAH! He had hand/foot/mouth - BOO. And we've been for a check up with our absolute fave - Ms Mary Jane! His creatinine has creeped up a tiny bit, but it's nothing to get wound up about yet. They look for increases over a 6-9 month trend rather than one or two increased reports. However, Carter's potassium was running on the low end of normal, so we were able to start adding whole milk to his bottles. He's now taking in about 2/3 whole milk, and the other 1/3 is still PM 60/40. We had labs drawn last week to see how this affected his levels, and they were still low, which is a great sign. Once we get him completely weaned off of formula, we'll have another set drawn just to make sure there are no surprises. Overall, we got a great progress report since Carter's weight was up. Even though he's still not as chunky as they'd like, he is at a good weight/height ratio, so they're pleased.

 

Yesterday we went to Birmingham to see our new neurosurgeon, Dr Blount. While we're sad to see Dr Wellons go, we are very happy after our first encounter with Dr Blount. A co-worker of mine has a boy who is also a patient of Blount, so I dropped their last name, and he was quick to say, "Yes, I know William." There's nothing better than a doctor that really knows their patients, and that's not just herding them through like cattle. Carter seemed to really like him, as well. This was a quick check, just to make sure we didn't have any concerns. He took a look at his scar from the surgery, and we talked a little bit about the MRI that Dr Harmon had on file from this past November, and he said he'd take a look at it to make sure there was nothing that was of value from a neurosurgery standpoint on it. We'll see him again in Spina Bifida Clinic in February, as well as Dr Conklin and Dr Joseph for ortho and urology. I'm really excited about being able to be seen in this clinic... it'll be nice to get through three appointments in one trip! Here are some pictures from our visit yesterday.

 

 

Josh and I both got iPhones last week, so I've been playing with Instagram and Pic Stitch. Carter loves playing with the Fisher Price and Disney apps!

 

 

Tub time!

 

 

 

 

 

Daddy had a birthday in September! 

 

 

Carter's eating habits have been steadily getting better. He'll drink sweet tea now, and eats on a pretty regular schedule throughout the day.

 

 

 

 Hey, Papa! Look here!

 

 

We took Greyson to the zoo for his birthday last weekend - it was C's first time, and he loved it! He even got to pet a giraffe.

 

 

These are from today, playing at Meemer's house.

 

 

Another thing I wanted to update was the fact that we finally referred ourselves to the Early Intervention program. This is a state/federal funded program that provides therapy services to qualifying children, to include physical therapy, occupational therapy, and speech/hearing and vision therapy. We've known about this program since Carter was in the NICU, but had been putting it off until he got his feet straightened out. A friend of mine recently got married, and her new mother-in-law just so happens to work for an agency as a service coordinator for therapies that participates in the Early Intervention program. After talking with her at the rehearsal dinner, we finally got things going to get Carter set up. They came yesterday morning to do his initial developmental assessment - it was so fun to watch them "test" him to see what skills he had. The thing that impressed them most was his nose-blowing skills! (He's one of the few kids that will actually blow through their nose and not their mouth.) He seems to be doing really well with cognitive skills, and he showed off with his signs and sweet little Southern drawl with his speech. Our biggest concern is obviously his motor skills and mobility. He's definitely progressing, he's just very far behind. In the past couple of weeks he has finally become proficient at pulling himself to standing position with the table or couch, and will even take some side steps around. He's lacking core strength and leg strength due to the prune belly and arthrogryposis. Once he's been qualified through the program, Early Intervention will coordinate with the therapists he needs, and they will visit once a month or so and work with him, as well as give us "homework" to do! I can't wait to see the progress he makes through this program, and I'm so thankful God sent Mrs Vines our way to coordinate Carter's care!

 

Besides a follow-up appointment with nephrology in December, our slate is clean until February. We hope to enjoy this holiday season with ZERO hospital stays, little to no illness, and lots of family time.

 

 

 

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 

Swimming & Urology

Saturday Josh took Carter swimming for the first time. He wasn't so sure about it at first, but after they got a ball to play with he decided it was okay. Sunday I got out there with him and dunked him a couple times - he did great! He didn't even cry about it :)

Funny pictures from his bag change after swimming. I couldn't catch C with the sunglasses on, so Josh will suffice!

Yesterday we went to Birmingham for a visit with one of Carter's favorites - Dr Joseph - our urologist. It was a long day. We checked in right before 11 to get our paperwork, and headed up to imaging. Carter screamed through the entire renal ultrasound, but was gentleman enough to blow kisses to his tech as we left :) In his defense, he was hungry from not being allowed to eat for 3 hours. He scarfed some bottle on our way to the cafeteria, and followed it up with some hamburger and french fries. They called us back as soon as we made it back to clinic. We kept him entertained while we waited for the doctor by playing hide and seek around the curtain, eating goldfish, and playing with Mountain Dew bottles.

Dr Joseph came in right around our appointment time (1:30p) and after calming Carter down enough to finish chewing his goldfish, took a peek in his diaper. He immediately mentioned that his urinary stoma was too small. He said the ultrasound showed retention of fluid on the bladder and backed up in his kidney. The plan is to cath 3-4 times a day to really drain his bladder well. He taught Josh and I how to do it, and watched me do it to make sure we were able. We'll go back in a month for a repeat ultrasound, and if he's still retaining too much we'll either cath more or have a surgery to revise his stoma. He checked C's testicles and said both were still in place from the prior surgery. We talked about the plan long-term for Carter's urology needs - a Mitrofanoff is more than likely in our future. He gave Carter a high-five when he was finished, and his nurse set-up our supply delivery. While I scheduled our August appointment, Josh headed down to check-in at Nephrology clinic for our cast-less weigh-in. After a short wait, we were taken back for the moment of truth. 21 pounds 3 ounces. Since our April appointment he's averaged 5 grams gained a day. I think 10 was our big goal, but Mary Jane said as long as he's progressing, eating better, and not losing we'll hold tight. All of our favorites came to see him while we were in Clinic 7, and raved over how great his feet look :)

Josh went back to work after we got home, and Carter and I headed over to Meemer's to wait for some of our family to get in from Florida. We're having our 4th of July shin-dig again this year. We took Meemer Billie Earl, and Aunts Mary Anne and Rochelle to eat Mexican. Carter - little pig - ate half of my beans, some rice, several chips, and some tortilla. He asked for his bottle on the way back to Meemer's... a first, I think. I fed him his medicine bottle, and then Meemer Billie fed him the rest. He snuggled right up to her and was playing with her afterward :) He's such a sweet little man.

New words: yes (yeh-yeh), no (uhn-uh)... both of these are accompanied by dramatic head shakes, eat (eeee) he'll sign this sometimes, too. thank you (da-da) this one gets signed, sometimes.

He's getting really good at telling us what he wants. We can go through a series of yes or no questions and usually figure it out. He's a very smart, attentive child. Yesterday he hollered for me over the monitor for the first time - he's got us both wrapped :)

Stay tuned for tons of pictures from our fabulous 4th!

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.