Wednesday, February 26, 2014

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!

Wednesday, October 16, 2013

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.

Monday, September 9, 2013

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.

Wednesday, July 3, 2013

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.

Sunday, June 30, 2013

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!!


Wednesday, December 5, 2012

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!

Sunday, November 11, 2012

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.