Busy Boy

Okay, an update on Carter - we'll start off with the medical stuff. Last week we had labs re-drawn in Montgomery, and MJ called the next day to let us know that his potassium had creeped up a little more than she wanted, but we could hold tight without the medicine. We'll re-draw the beginning of March to see if it's stabilized anymore. At the end of March we have an appointment with Dr. Conklin to have more x-rays done to see if Carter's little feet are ready for surgery. I'm very anxious for this surgery, but know that it needs to be done as soon as possible - because this boy is ready to GO! He's going to be an ill boy with casts on, but I hope we can get him out of them by the time my parents open their pool for the summer.

Along those same lines, Carter pulled up to his feet this past Sunday by himself :) I don't even think he realized he did it... he was so focused on getting his daddy's cup. He's also started eating a little better, and even will eat some meats now. I'm trying to teach him to sign, and he finally picked up on "more" and signs it when he's eating! He is now proficient at sitting himself up and playing, and he loves to dance and sing. He also will throw a toy out of view and put his little hands up as if to say "Where'd it go?". I turned his carseat around the other day, and he absolutely loves being able to face forward and look out the window. He's finally got "Da-Da" down, and he loves to ride on DaDa's shoulders around the house!

Next weekend Josh and I are taking a vacation to Gatlinburg, and Carter will stay with his Meemer. We need the break, and I know he'll have a blast spending the weekend with his Uncle Greyson.

Please remember to keep Brenna in your prayers - she's been readmitted to the NICU due to a stomach bug. Also, remember our friend Carter Cline, as he's been transferred to Children's Hospital in Cincinnati for some intestinal issues that they've been battling for far too long. And, last, but not least - keep in mind Little Bird - they are fast approaching the unannounced date of her homecoming! Pray that things continue to run smoothly for them as they prepare to bring their sweet girl home.

Did I mention Carter has not been sick with a UTI since his urology surgery in November? Praise the Lord! Maybe it's the cranberry additive in his oatmeal everyday, or the probiotic in his first bottle - or maybe he's just outgrowing them! Regardless, we are so thankful to have been out of the hospital for such a long stretch.

Pictures from Valentine's Day fun!

Carter and I got Daddy a giant Toblerone!

Dressed in red for school

Mommy got flowers from Papa at work

And Carter helped Daddy pick some out for her, too :)

This is Carter's super-cool Toy Story light-up Valentine's mailbox that he took to school... and he also delivered valentines to the girls at Millbrook Eyecare!

Playing with his V-day gift from Meemer

Heaven's Very Special Child

A special friend sent me this poem, which is so fitting for our family. This week I have needed much encouragement, and this reminded me that I am here for a very special reason. God's plan is perfect in every way.

Heaven's Very Special Child

A meeting was held quite far from Earth!

It's time again for another birth.

Said the angels to the Lord above,

"This Special Child will need much love.

His progress may be very slow,

Accomplishment he may not show.

And he'll require extra care

From the folks he meets down there.

He may not run or laugh or play;

His thoughts may seem quite far away.

In many ways he won't adapt

And he'll be known as handicapped.

So let's be careful where he's sent.

We want his life to be content.

Please, Lord, find the parents who

Will do a special job for You.

They will not realize right away

The leading role they're asked to play.

But with this child sent from above

Comes stronger faith and richer love.

And soon they'll know the privilege given

In caring for their gift from Heaven.

Their precious charge so meek and mild

Is Heaven's Very Special Child."

Written by Edna Massimilla

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!



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!

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.

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!

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!