Tuesday, January 31, 2012

Renal Report Card

Yesterday we had our bi-monthly nephrology appointment. First we checked in at the lab - he was so big for the stick, but still cried some huge crocodile tears... he's starting to be so much more aware of what's going on. Our favorite nurse and clinic coordinator, Ms Niki, did his work-up, and he flirted like crazy. Carter got a good report card from Ms Mary Jane. Overall, his kidney function looks great. We're stopping the kayexalate that was removing potassium from his formula, and will have labs re-drawn on Monday in Montgomery to make sure that level is still okay. She is going  to keep us on the PM 60/40 for the time being, so no whole milk for him just yet. She wants him to have the extra calories that he's getting from the formula, so we need to push him even harder to eat and gain so we can move toward milk. He'd "lost" a little bit of weight from last Tuesday (21.8 lbs with clothes) to this Monday, so he weighed in at 20.9 lbs (naked). Dr. Feig popped in to say "Hi" and he and Nurse Gillum explained to us the possibility of growth hormones for Carter depending on the extent of his kidney disease. People with chronic kidney disease tend to be on the shorter/smaller side, and children with OEIS are also tend to be small. We have a five year old little girl in our group who weighs as much as Carter does right now! If his levels are at a certain number, insurance will help pay for the treatments. Our last visitor of the day was Ms Brooke, his nutritionist, who reiterated our feeding plan and sent us on our merry way. We'll see them again in April, assuming nothing comes up between now and then.


This week Carter has finally mastered sitting himself up from laying or crawling :) He's getting so big, so fast!


Sunday, January 29, 2012

First Haircut

My long-time friend Leann gave Carter his first haircut this past Friday. He's not a fan, but she did great. He looks like such a little man now!









Final product

Party Time

Finally - pictures from Carter's first birthday party :) Enjoy!













Tuesday, January 24, 2012

MRI Results

Today we had an appointment with Dr. Harmon to have our MRI on Carter's lower end read. He explained to us that it showed none of the muscles necessary to control a bowel movement. This would make it extremely difficult to do bowel management if we were to attempt a pull-through. His recommendation was that we fore-go the surgery and stick to the colostomy, since it works for us. We'll take it one step at a time, and may end up having to do revisions or move sites for his stoma as time goes on, but so far we have had no issues with prolapse or strictures, which is good. We weren't completely surprised by this news, and we're okay with the bag - it's a part of our life now. And quite frankly, this little guy is going to be happy regardless of where his poop comes out.


This boy had a good day at the hospital, overall... he was flirting and talking with everyone. Dr. Harmon was impressed with how his personality has blossomed since he last saw him.

video


Here are some fun pictures that we've taken since Christmas.





Carter went to Cate and Carson's birthday party, and I got this sweet shot of Cate.


Uncle Greyson's a natural like his sister.




Carter wanted to hold the pony, but didn't like the way it's hair felt :)



I'm hoping to get a post out this week about HIS birthday party... I just have to snatch my dad's memory card! Stay tuned. Next week we see Mary Jane for a kidney report card!

Thursday, January 19, 2012

Children's of Alabama

This post is a little different than the normal Carter updates.
Today I would like to talk about an important part of our world as of September 2010. We have been blessed to be a part of the UAB and Children's family. I began going to UAB's Women and Infants Center in September to have targeted ultrasounds done to closely monitor Carter's growth and progress through the last 4 months of my pregnancy, to include a procedure and delivery. They have an amazing facility, some of the sweetest nurses, and skilled doctors that are eager to educate not only their residents, but the parents with whom they are using as their teaching examples. As scary as it was to have a room full of nurses, nurse aides, residents, and doctors when I delivered Carter, I am glad that they were able to have that experience with this rare condition. UAB's Regional NICU is top-notch, and Carter was kept comfortable until his transport to Children's. I was treated like a queen after delivery, and they even did a special "Celebration Dinner" for Josh and I both before I was discharged (every couple gets this... but it feels like a very big deal!).

I have a love/hate relationship with Children's of Alabama. I hate that we have to be there, because that means my child has some serious problems and is not well... but I love that I can trust them. I remember talking to a friend (who has been a frequent flyer mom at Children's more often than I can imagine), and she described how she felt when taking her son who'd been burned to the ER there. She said as soon as she hit the elevators she felt at peace, because she knew they were close to the people who were going to fix everything. I catch nurses all of the time that have on shirts for her daughter, who's been battling cystic fybrosis. This is not just another hospital - this is a family. These nurses don't forget their patients, and they work hard to ensure that the children and parents alike are comfortable during the stress of being sick and away from home. These doctors are among the best in the country, and if they aren't the best, they typically have a close working relationship with the best and can reach out when necessary. Yes, we have to drive an hour and a half and sometimes wait extensively for the ER, clinic visits, testing... but it is worth every mile, every minute, and every packed bag.  I can't imagine trusting my son with anything less than the best. I can't explain to you the excitement we get out of the events that they have at Children's Harbor while we're admitted... they make passing the time so much easier! And the $400 million expansion project that will be finished in August makes me absolutely giddy (even though the wing we're usually admitted to will probably not move to the new building). We were even able to sign Carter's name to the final beam that will be placed in the new facility!

This looks SO cool at night. 

I can't wait to walk this.... NOT! But what an amazing structure!

I'll take a minute to brag on some of the recent awards our specialties recently received:
Among "The Best Doctors in America" were mentioned our:
Neurosurgeon - Dr. Wellons
 Urologist - Dr. Joseph
Neonatologist - Dr. Coghill
In the "Best Children's Hospital's U.S. News & World Report Magazine", Children's of Alabama had the following ranked specialty clinics (that we see):
#11 Neurosurgery
#22 Nephrology
#23 Neonatology
#25 Urology
#39 Orthopedics
You can see more here.

Also, this year is Children's 100th Anniversary - 100 years of caring for children. We're proud to be a part of this milestone, and blessed to be a part of the Children's family!


Wednesday, January 11, 2012

ONE

Guess who turned ONE today?! That's right - CARTER! It's hard to believe that a year ago we were learning of the details of Carter's condition. It's all such a blur. I remember visiting him in the RNICU at UAB, where they kept him sterile and stabile. They called to tell us they were transporting him across the street to Children's NICU. Then they called to let us know he was settled and we could visit over there. They gave me a temporary discharge and wheeled me to the truck. We got a quick run-down of NICU do's and don'ts from our nurse. After that there were phone calls to my hospital room to inform us of his first surgery and receive my consent. I had not even done any research on his condition, I only knew that he was in the hands of an experienced doctor and a mighty God, and prayed they'd take care of my baby. They called again after surgery to let us know how it went - perfect. He recovered quickly. All of this happened in the first 2 days. I was discharged, and we began our Birmingham adventure as NICU parents, visiting as much as we were able, driving home as little as possible, and thanking the Lord for the Ronald McDonald House and amazing friends, co-workers, and family for allowing us those options. For one whole month my sweet boy was in the NICU. Little things excited us... like the nurses telling us he could wear clothes finally, or his graduation from an incubator to a crib, and a new name tag a nurse took her time to make. One month, three surgeries, and one infection later, we were bringing home a healthy boy with a colostomy, vesicostomy, and a pretty line of stitches down his back. We've had ups and downs for the remaining 11 months... times where we never thought we'd be well and at home for the back-to-back infections, and times where he seemed like the most healthy and happy child on the planet and we couldn't even picture him in the hospital with an IV in his scalp. He's been such a trooper... a truly tough little man. Now he has three teeth, a headful of hair, and he can army crawl and roll like crazy. He laughs and gives funny looks, and hates vegetables. He can quack like a duck, and bok like a chicken. He can hold his "Little Light of Mine" up and make the Spider that goes up the water spout. He loves to patty cake, and gives the best mouth-wide-open-wet-sloppy kisses. He has brought Josh and I such joy and fulfillment, and I can't fathom my world without him. Happy birthday, sweet boy.

 I had Carter's teacher snap this picture when I dropped him off at daycare today... I'm typically behind the camera.

Carter's new bike. Josh couldn't wait til the party to let him have it! 

 So cool!

He looks like a pro. 

video
Taking it for a spin.

Watching Sesame Street for the first time - ZONED. 

"Are y'all watching this?!"

Sunday, January 1, 2012

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


video
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.