Long Lost

All of our family is in town this week for our big celebration of our nation's independence, to include one of my favorites - my aunt Me-Me. Melanie came up for Carter's delivery. She has an extensive nursing background and it made us more at ease to have her there since we knew we'd be facing some sort of medical issues. Tonight I was looking through old pictures of Carter's early days in the hospital to have printed for our story to be used to encourage people to give to the United Way through the Combined Federal Campaign. More on that at a later date. Anyway, while searching through pictures dad asked if I'd seen the pictures Aunt Me-Me took of the delivery. I had not ever worked up the courage to look through them. So tonight, finally, I pulled up those long lost pictures of Carter's entrance into the world. I can't put into words exactly the flood of emotions I had while flipping through the final pictures taken of my swollen, very pregnant body. The snow that we battled to make it to my induction appointment. Josh by my side, holding my hand while they put my IV in. The monitors that showed whether C and I were stable or in distress. The crowded room of nurses, doctors, and students as I brought a new life into the world. Their serious faces as they made sure that life was secure and stable. My sweet boys tiny organs outside of their intended home. (This, i never saw in person, and I'm so glad my aunt captured that photo). The relief I felt when I heard his little wimpy cry. The crowd of people making a hole so I could see him across the room before they rushed him to the NICU. I was absolutely overwhelmed. Love for my sweet boy. Grateful for Josh being so strong and supportive every second of the way, and for my mom and aunt for being there as well. Thankful for the skill of the doctors and nurses that got us through those critical moments. Humbled that I serve such a mighty God that made those pictures "long lost." Long lost are the days of worry and fear. Long lost are the days of uncertainty and sickness. My little man is healthy and strong. I am so blessed to be this child's mother. One tiny life rocked my world, and I will never be the same. Sweet Carter, thank you for making Momma strong, for bringing me to my knees in prayer, and teaching me how to love beyond measure.

UTIs & Updates

It's been forever since I made a post solely focusing on Carter's health and progress. You can see all of the fun things we've been up to at our Piatt Party of 3 blog! Overall, Carter has been AWESOME! Here are some highlights:

1. He's getting chunky. The kid will actually eat pretty well now. We no longer stress about every bite that he refuses. He weighed 27lbs (with clothes and shoes) at the pediatrician this week!

2. We went through a bad bought with UTIs from about February to late April.... I felt like he had one that entire time period. I'm not kidding when I say we would finish a 10-14 day antibiotic, and less than 2-3 days later he would run fever again and we would have to start all over. The last one at the end of April was two bugs... and it almost landed us a stay at Children's for IV antibiotics. Thankfully his kidney function looked better than it had in months when they had us get labs drawn in Montgomery, so we were able to try an oral antibiotic to clear it up. Since then they've switched his prophylactic antibiotic back to bactrim. He was UTI free through May, and just had a fever-fit this week. Hopefully this is not the start of another flood of infections.

 

3. Iron infusions! They decided after this last drop in his iron levels that we would try spacing his infusions out over a longer period of time to see how he maintained. His last one was in May (I think) and we have the last of this series scheduled for the middle of July. We're hoping that after this infusion his levels will stay stable, and we won't have to consider Epogen injections. Your kidneys aide in the absorption of iron by secreting a hormone - Epogen is a synthetic version of that hormone and "tricks" the kidney into functioning normally for iron absorption. Even though Carter's kidney function has always been decent, he does only have one... so this could definitely be a side-effect.

 

4. Physical therapy has been a blast. He had progressed so much! Just over the past month or so he has started trying to stand on his own in the middle of the floor. He's also getting much better at balancing and walking with assistance. Our current "homework" is to have him walk as much as possible. The hope is that keeping him on his feet will continue to strengthen his legs and core and give him more confidence in his abilities to stand and walk on his own. All is well on the speech-front.... this boy LOVES to talk!!

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...