Nephrology Issues + RSV

Quick update on C. We went for our renal check-up yesterday with Mary Jane, and we got a lot of information. Here we go...

The Good:

* Carter has gained a pound since his last report card - BOOM!
* He's grown almost a whole inch

The Good/Bad:

* He is now on whole milk, and his potassium level was TOO LOW as opposed to it's normal or semi-high level that he had when we were restricting potassium. This is good and bad, because he needs to maintain normal levels, but it's easier to add in high potassium foods than it is to restrict them. Bring on the 'nanas!

The Bad:

* The acid levels in his blood were a smidge high - nothing too worrisome, but it can affect his appetite, so we're starting a medicine to help level that out.
* His creatinine had jumped another point. They're still not going to dwell on this until it's more of a trend.
* This go-around we were instructed to give Carter his iron EVERY day. For once we were diligent, and expected his levels to be better. However, that was not the case. His levels dropped like a bomb from 46 to 25. We're going for two IV iron infusions next week to try to bring his levels up to normal, and then we'll re-evaluate from there. If his levels continue to drop back below normal, it's likely he has a deficiency of a hormone that the kidneys (in his case - kidney - singular) produce that aids in the absorption of iron. No worries, there's a synthetic hormone option called Epogen - the downside is it only comes in shot form. Eek! Send prayers our way for Monday and Thursday of next week. C is a hard stick, and the first infusion will last 3 hours since they'll monitor him for any adverse reactions.

Josh also took C to the pediatrician today, because he's had an awful cough and drainage (clear) since Sunday. We were hoping it was just a cold from being outside at the competition this weekend....

The Ugly:

* He has RSV. Blah. Breathing treatments ever 4-8 hours. An oral steroid to speed the healing process up. And motrin - kid's running hot. He's out of daycare until at least Monday. Currently he goes back and forth between feeling really crappy with high fever, to spazzing out on an albuterol high. He'll go in for a follow-up with Dr Carlile Monday before we leave for Birmingham for his infusion.

We had two PT appointments scheduled next week, but both happen to fall on days for the infusions, so they'll be rescheduled. He's progressing really well, though. He'll grab his walker and head down the hall like a pro. Practice makes perfect!

Train up a child...

Train up a child in the way he should go:

and when he is old, he will not depart from it

Proverbs 22:6

 

Being healthy is important to our family. Sure, we may eat junk sometimes - but for the most part we take good care of our bodies. Josh and I both want Carter to understand the importance of health, regardless of his medical issues. We want him to learn about his deficiencies and how to overcome them, whether it's with his kidney, his colon, or his mobility. While he may be limited when it comes to physical activities like contact sports, we want him to find things he enjoys that better his body and make him strong. I hope we'll always be good role models when it comes to health, and I hope we give him good exposure to positive body image and good nutrition. He loves to go to the gym with us and watch everyone lifting and running, and likes to play with the equipment. We're very thankful for our Crossfit friends and the positive influence they are on our family.

Carter's 2nd Halloween

Carter wasn't really digging the Halloween festivities this year... The plan was for him to be a pirate. I got off work late, and Josh had to go back in to work for the evening, so I had to rush to get him from daycare and into his attire. We ended up only visiting Pop's house for the sake of time. His "costume" was made up of things we already had at home. Kid plays with his pirate sword and bandana ALL the time, and the one night I need him to be a good matey and sport his pirate gear, he starts a mutiny. He loved his facial hair, though.

 

What? Jealous of my beard and stache? 

"But I don't WANNA be a PIRATE! I WANNA BE A MAN!"

Smarties are yum

So is Chik-fil-a!

 

We ended our night at Chik-fil-a, and Carter dominated some chicken nuggets and sweet tea. Overall, he had a great time. And he even enjoyed some of Greyson's candy stash over the weekend!

Carter's First Trip to Florida

Last weekend Carter went on his first LONG road trip to Florida. My grandparents live outside of Gainesville. My Papa turned 70 and my Grandma surprised him with a huge party. It was a good time. We got to see all of my mom's family and my dad's mom, and Carter had a blast playing with his cousins and Uncle Greyson.

 

He did really well in the car. I brought a bucket of toys from home and he played or slept the whole drive - 7 hours!

 

 

At the party.... he got a balloon so he was pleased as punch. 

 

 

We ate lunch at the Ivy House Saturday after driving around for 2 hours so Carter would nap...

 

 

Meemer love

 

 

This was lunch. YUM. Carter loved the mac n cheese.

 

 

 

Watching football with Meemer and eating a poptart

 

 

Roll Tide! How did this happen in Gator Country?

 

 

 

He was exhausted when we got home because he didn't want to sleep while we were there. He's really nosey and wanted to play... sleep did NOT come easily... for anyone! :)

 

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.

 

 

 

Back to School

Daycare has been closed for a week while the school got ready for the upcoming year! They shuffled around some classrooms and teachers, and everything looks awesome! We're so thankful for the care that these amazing people provide through their ministry. Carter LOVES his teachers and his new room! He's still in the "baby" room since he's not walking, but we're looking forward to him growing and thriving throughout this new school year.

 sitting in the pew during orientation

with his teacher 

playing in his new classroom

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!