Ortho Update

Today we had an ortho appointment with Dr Conklin and also met a new resident which I liked - Grady Maddox. We did some xrays of his feet and spine... the boy can't stand to be held down, but he did really well. Dr Conklin explained that the piece of bone in the foot that they would move the tendon to is ossified enough to do the surgery this spring. He'll be doing four different procedures between the two feet: posterior tibial tendon lengthening, Achilles tendon lengthening, abductor hallucis tendon release, and anterior tibial tendon transfer. The transfer is the big deal, that will help him flatten his feet and improve his platform so he'll be able to walk. He said Carter will be the youngest patient he's ever performed the anterior tibial transfer on, but he's confident that it will be successful and improve his foot structure. Usually this surgery is done on children who had club feet that couldn't be completely corrected with the shoe and braces, and they decide to do the surgery as a last resort fix for stubborn feet - this is why the typical age is around 3. Josh and I talked about it, and we'd like to go ahead with the surgery, so that we aren't hindering Carter's mobility for too long. Surgery is set for Wednesday, May 2nd. They'll probably keep him overnight to make sure he doesn't have any issues with swelling, and then we'll have a cast change a week later. He'll be in casts over his knee for a total of 6 to 8 weeks. We're very nervous about the surgery, the care afterward, and how he will adjust to the casts, but we know God won't give us anything we can't handle! Please pray for us for peace, and for Carter's continued wellness. We recieved word today that a UA we had drawn last week was growing E. coli, but he's no longer symptomatic, so we won't be treating it. As he gets bigger, his body is fighting off more of these infections - and we are SO thankful to have been out of the hospital for going on 4 months now! We have a nephrology appointment with our beloved Mary Jane in a couple of weeks, and we really need C to gain some weight between now and then. Today he was down to 19 pounds. Please pray that this boy will have an appetite as big as his personality! :) Here are some pictures from today's visit.

Playing in the waiting room

He loved the fish tanks!

This is an x-ray of C's spine and hips. He has very slight scoliosis, but it's not changing over time, so it's not a concern right now. You can see how his vertebrae end a little higher than most - he has no tailbone! This is called sacral agensis. Also, you can see how his hips don't have a socket like most, and the ball of the femur is dislocated on both sides.

This is a lateral x-ray of Carter's foot. The two lines on either side of that small circle are measurements for the bone that they'll be anchoring his tendon into. Babie's feet are mostly cartilage, and get denser over time - this bone is just enough ossified to drill into for this surgery! God has great timing, doesn't He? :)

1000 Words

I think most of these are from February up until now... enjoy :)

Sweet cheeks

Playing with his zoo

 President's Day park trip

 Bath time

 Ready for church!

These are from this past weekend - my dad's parents came into town.

 Meemer and her boys

 Grill master

Grandpa Jim schooling Grey

Are you ready for some football?!

 Josh schooling Grey

Tebow!

My dad's late brother's glove - my granddad oils it every year... it's around 30 years old.

These are from tonight - puppy pjs!

Silly boy!



Church

Today mom, Greyson, and I took Carter to church for the first time. I've been avoiding this because I was worried about him being in the nursery and him leaking, or not eating well, or any other slew of things that could complicate his stay during church. Then, my old vice principal and math teacher told my mom about Shoal Creek (which we'd planned on visiting anyway...) and said they had a pager system for the nursery. Pager system = peace of mind. Knowing that they could page me to come get him easily if something went wrong was all I needed. So, we ventured to church this morning, and he LOVED it. He cried when I dropped him off in the nursery, as I explained the "surprise anatomy" they may encounter on him, but a friend told us he was playing in no time after we left. He was all smiles when we picked him up after the service. All in all, a very successful first time, and we'll definitely be back now that we've conquered the initial outing :)

Carter will have labs drawn again this week to make sure his potassium has leveled out. He's finishing up an antibiotic from having bronchiolitis last weekend while Josh and I were gone, and he sounds SO much better. Mom said it was amazing to see him today in such a good mood and feeling so good, since he was so miserably sick the whole time she had him. Thank God for medical and pharmaceutical advancements :) The end of this month is coming quickly, and we'll be heading to Birmingham to have another set of x-rays done to see if Carter's bones in his feet are ready for surgery. Pray for me to have peace about this surgery - it makes me hurt to think about it. Here's a cute picture of him trying his hardest to get his feet in his mouth, though his crazy hips won't allow him to do it!

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