Sweet Summertime

Carter is doing so awesome! He's been participating in CrossFit Kids this summer, and he loves working out with his friends. He starts K-4 next week... we are so excited to see how he adjusts to his new classroom and schedule. He'll start back up with physical therapy as well, and I can't wait for his therapist to see the progress he's made in his mobility over the summer!

As far as Carter's current medical status is concerned, he is so stable right now! He just got over Strep throat (yay for regular kid sicknesses!), and we haven't had a UTI in quite a while, which is super exciting since we came off of his prophylactic antibiotic a few months ago. His kidney labs are pretty solid. Iron is still low - we have an infusion on my birthday next Thursday. His inactive vitamin D levels were low, so we've been supplementing that for the past couple of months and hope to see that number higher at his next lab draw. Our nephrology team is working on insurance approval for growth hormones. When we go for infusion next week he has to have a hip x-ray and an endocrine lab study drawn. We checked in with ortho prior to the paperwork process and their only concern was that his scoliosis may worsen slightly with the rapid growth, but they believe the risk is worth the overall benefit.

Carter is so full of life and he makes every day awesome. We love watching him tackle new things fearlessly, stepping out in confidence boldly, and learning to navigate relationships and situations so shamelessly. There are hard parenting days, but we get through it together and adapt for the future. This summer we've had so much fun - we've had lots of pool time, competitions, and ice cream! We're looking forward to the cooler fall weather, football, and camping!

Pray with us:
- Next Thursdays infusion and tests go smoothly
- Carter's bladder and kidney to continue to be healthy
- This momma's needle-shy heart as she prepares to give daily growth hormone injections for an unknown period of time, and for NO adverse side effects
- K-4 adventures and PT progression

Pack A Bag

Last month we went to Children's for a full day of appointments: renal ultrasound, urology, iron infusion, and nephrology. 

C's renal ultrasound looked better than the month before. Dr Joseph also talked to us about some options for preventing UTIs if he kept getting them so frequently. The first option is to revise his vesicostomy, or we can look at switching to a urostomy (from the ureter, before the bladder). He said eventually he may do some bladder reconstruction. 

Infusion went as usual, but our nurse practitioner from nephrology popped in and asked about any symptoms because his labs were alarming. His creatinine had doubled, his bicarb was out of whack, and his iron had dropped even lower since his previous infusion. He had run fever over the weekend and his urine started showing symptoms that Monday morning. They ultimately decided to admit him until they knew there was an oral drug he could go home on. 

As always, Children's was a humbling experience. I shot a message to our small group that we were missing and they covered us in prayer. It was so different being in the new hospital with a mobile toddler. We took advantage of the many Child Life offerings and he ate all of his favorite foods every day. We had nurses from his infancy that cared for him and loved on him. We spent Wednesday night with our church family virtually from our room and were blessed immensely with a message on spiritual warfare. 4 days of abnormalcy to remind us of how far we've come. 

Fast forward a month and we're back in Birmingham for another iron infusion and a follow up with Nephrology. 

C's had some symptoms of UTI (bladder pain and cloudy urine), so I've been a little leery about this visit. The nurses at Children's swear by packing a bag to "ward off evil spirits." Last night we packed a spiritual bag by praying proactively. Our small group covered us in powerful prayer, and we prayed with C that his appointments would go well and his labs would be stable. This morning I packed a ceremonial bag with changes of clothes and toothbrushes, and we headed north. 

We're currently pumping iron and Mary Jane just popped in. His labs look good and we're going home! She's going to get a urinalysis started to try to catch anything that may be growing, but otherwise his kidney looks awesome compared to our last visit. 

Carter is the toughest kid and I couldn't be more thankful for his presence in my life. He teaches Josh and I so much about life, faith, and love. God is GOOD! Thank you for your prayers!

SB Clinic

Today we took C to spina bifida clinic. Although he doesn't have spina bifida, since he sees all of the specialties involved they let us come to avoid multiple trips and appointments. Such a blessing. Carter was a rockstar for x-rays and ultrasound, and then we moved on to the doctor visits. 

Urology - Dr Joseph

Dr Joseph came by and checked out C's vesicostomy and read his renal ultrasound. He wasn't thrilled with how dilated his ureter looked, so we'll have a repeat ultrasound when we go back for nephrology and infusion next month. He also laid it out for us very plainly that eventually Carter's kidney will fail. Nephrology always uses the phrase "outgrow it's function" and apparently that means "WILL fail." We're thankful for that wake up call so we can start screening our friends by blood type to find a donor ;) Just kidding. Our one question for him was a timeline on the reversal of his vesicostomy to a cathable channel. He's not in any hurry to do this as he doesn't want to disrupt his semi-stable bladder and kidney. We're good with that. 

Neurosurgery - Dr Blount

Carter told him he didn't look like a doctor. He loved that. C showed off his walking skills, and let him check out his scar. Our question for Dr Blount was in regards to his un-tethered cord re-tethering in the future. Essentially his answer was that until there are symptoms pointing to a possible re-tether, we wouldn't worry about it. It usually doesn't happen until a big growth spurt, and would be made evident by loss of sensation or function in the Southern Hemisphere of his little body (leg numbness, pain, loss or degradation of mobility in the feet and legs). 6 months before we see him again. 

Orthopedics - Dr Conklin

C showed off his walking skills again and Dr Conklin was very pleased with his mobility. His scoliosis x-ray looked very close to the previous appointment and is still not a concern. We talked extensively about his dislocated hips. I've done a lot of research since he explained that a surgery would be very difficult to get both hips symmetrical and functional. The question for Dr C: what's the long term prognosis of leaving his hips un-corrected? My primary concern was that he would have pain as a byproduct of mobility. He explained that kids who have hips that come out during or after birth and have corrections typically have a greater chance for dislocations repeating, or bad placement of the femoral head in the hip socket, which causes friction on the cartilage and bone in those areas, and thus pain. Since Carter's pelvis never formed completely with sockets, his femoral head rides high on his pelvis and doesn't form a joint anywhere. He said with a deformity like this, while mobility can be more limited, the likelihood of pain is very low. Eventually he will probably develop some type of arthritis as a result of his anatomy, but he expects it to be much later in life (as late as his 50s!). We talked about some of the cases in our support group, and he asked how many kids had or hadn't had their hips corrected, and we discussed that his case is so much LESS complex than most of the kids. The majority of these kids have bladder or cloacal Extrophy and need osteotomies done, and it's all corrected in one major surgery, or resulting revision surgeries for the "big" surgery. He is so very knowledgeable about such a broad range of complexes and defects, in addition to his general ortho skills - we love our doctors! 6 months until we see him again, as well. 

We're glad to have our questions answered, and to have some rest in the fact that there are still no surgeries on our schedule for quite a while. Please be in prayer that Carter's bladder and kidney continue to function well, and for this battle with anemia to end soon. We appreciate it!

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.

Fearfully Made

Carter is now in P-2 at Victory, and he absolutely loves it. He has three 15 minute classes every day and he is learning so much! His first class is Bible, and they learn a verse every week. Last week he came home with his verse card... one of my favorites:

I will praise You, for I am fearfully and wonderfully made; 

- Psalm 139:14a

I can't think of a better verse for Carter to devote to heart than this one. I know as he grows older he'll question why he's different from other children. He's already starting to realize that others don't have bags, that he doesn't have a belly button, and that the older children go to the potty. I never want him to question the fact that he was made perfectly in the sight of God, and that we wouldn't change a thing about him. Obviously if there are medical advances made that will benefit his quality of life, we'll pursue those avenues, but regardless he will be loved just as he is. When I think about this verse... I've always been baffled as to the meaning of "fearfully." I was sure God didn't want us to fear our existence in this world... so I took to the interwebs to find an original translation of the word. This is what I found:

"In the original Hebrew text, the word 'fearfully' means: with great reverence and heart-felt interest and respect. The word 'wonderfully' means: unique, set apart, uniquely marvelous."

There you have it. Not only are we made in the image of an Almighty God, but He made each of us with great reverence and heart-felt interest. Each of us are unique and marvelous in our own way, and most importantly, we are LOVED beyond measure. With that, I'd submit to you that Carter's birth defects are not defects at all, but rather blessings that have allowed us to experience the healing power of our Lord, and have enabled us to share His work in our life through this amazing child. My prayer is that every time Carter sees one of his scars, he remembers that Jesus suffered worse on the cross to make sure he had a way to an eternity in Heaven, and that God made him exactly the way he is for a purpose that may not yet be known. God makes no mistakes.

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!!