Busy, Busy Boy

Monday was a busy day! We started off with our annual reassessment of Carter's PT needs. His special instructor, PT, and his Early Intervention case worker were all present for the meeting. He's done really well and has met the majority of his goals. One of our concerns has been his foot placement while walking - he has a hard time straightening his feet to point forward, and he also has extreme pronation. He tends to walk much better with shoes on, because of the added ankle stability. The PT recommended a special SMO brace that will help with the pronation, and hopefully give him a little more stability while he's perfecting his walking. The direction of his toes may not be an easy fix, as we both agreed that it may be more from his hips "floating" rather than an ankle/foot problem. She was able to call our orthopedic doctor and get us a prescription and an appointment with the orthotist so we wouldn't have to make a separate trip.
 

As soon as we finished that we loaded up and headed north to Children's. The nephrology clinic was super busy, and we waited for a long time to be seen. Something went wonky with our orders, so we didn't go down to the lab until after we'd already seen Mary Jane, and she said since he'd been so stable she felt comfortable letting us head out and she would call us with the results. We waited for a while at the lab, too, and then finally finished and headed to Biotech.
 

While we were at Biotech getting C fitted for his new SMOs, Mary Jane called and let us know that his labs were not great. His white cells were high, his creatinine had creeped back up, and his iron was starting to decline again. She figured he was probably brewing a UTI, and asked that we take him to the pediatrician Tuesday to have a urinalysis started. She wants us to have labs drawn locally soon to make sure his white cells and creatinine stabilize post-UTI and run some additional tests for iron absorption. Sure enough, the initial dip at the pediatrician yesterday showed a UTI, so we started antibiotics today. We're thankful we caught it early, and are praying that his numbers stabilize by the next lab draw.

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!

Carter's First Christmas

CHRISTMAS. WAS. AWESOME.

 AWESOME!

AWWWEEEESOME!

Carter was exhausted, excited, and absolutely enthralled by Christmas.

We have enough toys to man a small army of children, and need to rotate some of his "baby toys" out of the living room. The place has turned into a war-zone of blocks, zoo animals, and books. Santa brought Carter a zoo playset complete with safari car and animals that tell you what sound they make. Do you know what a giraffe says? Apparently it sounds like it's munching on food....

Opening presents is hard work!

We kicked off Christmas Eve with daddy getting home so we could go over to Meemer's for breakfast with the fam. We had Meemer Billie, Papa Gerald, and Grandma Julie in town from Florida. Heather, John, Ryland, and Ella were a special delivery from Germany... especially Uncle John, who managed to come home "early" from a deployment in Iraq :) This was his first time meeting Carter, and C was absolutely crazy about him! I wish we could've captured on film the look Carter gave Heather every time they interacted. It was a PRICELESS scowl.

 Mav with his present from mom

That night we did Christmas with the Hill side of Josh's family. Always alot of fun. KK got some great pictures of C, and even caught one of Josh (smiling!) with his sister!!

 Josh & Steph

 Carter & Pop

Christmas morning was a blast. I woke Carter up at 7:30ish so he could get started with his presents from us and Santa. He was not a fan of bows on the presents... so we had to tear those off before he'd commence with taking the paper off. He ate a bottle on the way to Meemer's, where we met three patiently waiting youngin's who were bursting at the seams to open their gifts. Carter loved watching the big kids open their presents, and of course he got to tear into even more gifts of his own. AND THEN... we went home and Josh's family came over to do EVEN MORE Christmas! After all of the excitement, you would think C would have absolutely passed out... so we put him in bed... and he talked to himself and rolled around, and after about 20 minutes, he started crying to get up. The boy never took a decent nap all day. He followed me around the house as I picked up trash and put up toys and made (the world's best homemade) mac and cheese for Christmas dinner at my mom's. He played hard again with his uncle and cousins once we got over there, and was lively all through supper. By the time we got him home, bag changed, bathed, and in bed, he gave up the ghost. He slept hard until 8am the next morning.

Christmas-wasted.

Josh worked yesterday and today, so C and I hung out with my mom, dad, and Greyson to ring in the new year... not that Carter lasted until anywhere near midnight :) It's crazy to think that in just a couple of weeks we'll be opening even more presents for home-boys first birthday! It's been a whirl-wind of a year. Josh and I were extremely blessed. He was promoted to sergeant, and I graduated with my bachelor's degree and was promoted. We got married, and we bought our first home. I can remember last New Year's Eve, Josh and I watched True Blood episodes until midnight. I was hugely pregnant and extremely nervous about delivering. We new the challenges we would face with Carter to an extent, but had no idea the joy he would bring to us in 2011. I can't imagine having spent my year any other way than being his mom.

As far as our medical adventures go, we had a post-op check up with Dr. Joseph last week, and it went wonderfully. Everything looks as it should, and we won't see him again until July, Lord willing! Next up is his year-old check up with the pediatrician, an appointment with general surgery to have our MRI read, and nephrology at the end of the month. Carter hasn't gained any weight lately.. so we're trying to chunk him up before the nephrology appointment :) We had a pancake epiphany the other day, and now it's one of his favorite things. Still a veggie hater. Always a lover of fruits and anything constipating and gassy. JOY.

Here are some random Christmas pics from December, and a super-cute video of Carter.

 Downtown Montgomery

 Posing with Santa

COLD.

First sucker. Given by the biggest sucker for this boy - Meemer :)

The Tree

He's so sweet in the mornings.

Also, don't forget to say prayers for my sweet cousins and their angel, Brenna. She's improving by leaps and bounds every day, and defying all the odds. They have a long way to go, but they have the strength and faith to get there.

Follow their story here: http://www.blessedbybrenna.blogspot.com/