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.
Showing posts with label PT. Show all posts
Showing posts with label PT. Show all posts
Wednesday, October 16, 2013
Busy, Busy Boy
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!!
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.
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!
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 4, 2012
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...
Friday, October 12, 2012
Early Intervention and a New Doc
It has been FOREVER since I posted an update about Carter. First let's get the medical stuff squared away. Since our last update on urology, he has been wonderful - ZERO UTIs. HOORAH! He had hand/foot/mouth - BOO. And we've been for a check up with our absolute fave - Ms Mary Jane! His creatinine has creeped up a tiny bit, but it's nothing to get wound up about yet. They look for increases over a 6-9 month trend rather than one or two increased reports. However, Carter's potassium was running on the low end of normal, so we were able to start adding whole milk to his bottles. He's now taking in about 2/3 whole milk, and the other 1/3 is still PM 60/40. We had labs drawn last week to see how this affected his levels, and they were still low, which is a great sign. Once we get him completely weaned off of formula, we'll have another set drawn just to make sure there are no surprises. Overall, we got a great progress report since Carter's weight was up. Even though he's still not as chunky as they'd like, he is at a good weight/height ratio, so they're pleased.
Yesterday we went to Birmingham to see our new neurosurgeon, Dr Blount. While we're sad to see Dr Wellons go, we are very happy after our first encounter with Dr Blount. A co-worker of mine has a boy who is also a patient of Blount, so I dropped their last name, and he was quick to say, "Yes, I know William." There's nothing better than a doctor that really knows their patients, and that's not just herding them through like cattle. Carter seemed to really like him, as well. This was a quick check, just to make sure we didn't have any concerns. He took a look at his scar from the surgery, and we talked a little bit about the MRI that Dr Harmon had on file from this past November, and he said he'd take a look at it to make sure there was nothing that was of value from a neurosurgery standpoint on it. We'll see him again in Spina Bifida Clinic in February, as well as Dr Conklin and Dr Joseph for ortho and urology. I'm really excited about being able to be seen in this clinic... it'll be nice to get through three appointments in one trip! Here are some pictures from our visit yesterday.
Josh and I both got iPhones last week, so I've been playing with Instagram and Pic Stitch. Carter loves playing with the Fisher Price and Disney apps!
Tub time!
Daddy had a birthday in September!
Carter's eating habits have been steadily getting better. He'll drink sweet tea now, and eats on a pretty regular schedule throughout the day.
Hey, Papa! Look here!
We took Greyson to the zoo for his birthday last weekend - it was C's first time, and he loved it! He even got to pet a giraffe.
These are from today, playing at Meemer's house.
Another thing I wanted to update was the fact that we finally referred ourselves to the Early Intervention program. This is a state/federal funded program that provides therapy services to qualifying children, to include physical therapy, occupational therapy, and speech/hearing and vision therapy. We've known about this program since Carter was in the NICU, but had been putting it off until he got his feet straightened out. A friend of mine recently got married, and her new mother-in-law just so happens to work for an agency as a service coordinator for therapies that participates in the Early Intervention program. After talking with her at the rehearsal dinner, we finally got things going to get Carter set up. They came yesterday morning to do his initial developmental assessment - it was so fun to watch them "test" him to see what skills he had. The thing that impressed them most was his nose-blowing skills! (He's one of the few kids that will actually blow through their nose and not their mouth.) He seems to be doing really well with cognitive skills, and he showed off with his signs and sweet little Southern drawl with his speech. Our biggest concern is obviously his motor skills and mobility. He's definitely progressing, he's just very far behind. In the past couple of weeks he has finally become proficient at pulling himself to standing position with the table or couch, and will even take some side steps around. He's lacking core strength and leg strength due to the prune belly and arthrogryposis. Once he's been qualified through the program, Early Intervention will coordinate with the therapists he needs, and they will visit once a month or so and work with him, as well as give us "homework" to do! I can't wait to see the progress he makes through this program, and I'm so thankful God sent Mrs Vines our way to coordinate Carter's care!
Besides a follow-up appointment with nephrology in December, our slate is clean until February. We hope to enjoy this holiday season with ZERO hospital stays, little to no illness, and lots of family time.
Thursday, August 9, 2012
Urology/Ortho Update
In case you don't remember, Carter's renal ultrasound last month didn't look too great. Tuesday we went up to Children's to have a repeat ultrasound and see if the 3-4 times daily cathing was helping his fluid retention on his kidney/bladder. Dr. Joseph said everything looked much better - his ureter was still dilated, but it probably always will be. He said eventually we will talk about "reconnecting" Carter's urological plumbing, but he would probably always need to be cathed to keep fluid off of his kidney. It won't be for at least another year that we have to worry about that. The only other thing he addressed was that his urinary stoma was definitely too small, and should we need to go to the OR with any other doctor, he'd like to know so he could possibly revise the stoma while he was already under. We've been released for another 6 months, assuming he has no complications :) We like to hear that! This was an awesome appointment, and we were in and out before our actual appointment time ever came around! Carter had a blast flirting with the nurses and the resident. Afterward we took a trip to Johnny Rockets for burgers and milkshakes!
Today we went to Children's South to follow-up with Dr Conklin. Carter has been out of casts for 6 weeks, and has been tolerating his braces wonderfully. He actually doesn't like to have them off, and asks to have his socks and "shoes" back on! We've been wearing them pretty much 24x7... besides during swimming/bath time. Today, Dr Conklin let us know that his feet look beautiful, and that he's comfortable with us decreasing our wear to just 8 hours a day. He wants us to start seeing Early Intervention for physical therapy to help with Carter's developmental delays that have been caused by his muscular/skeletal issues. We'll be calling to set that up in the next month. He said he had no doubt that Carter would continue progressing on his own, but EI would help get him up to speed faster, and give us some things to work with him on at home. He released us for 6 months, but also suggested that we may want to be seen in the Spina Bifida Clinic, which incorporates Neurosurgery, Orthopedics, and Urology all in one day's worth of appointments. Dr Conklin, Dr Joseph, and Dr Blount all participate in this clinic - so we would essentially be seeing the same doctors, just all in one day. This will more than likely work really well for us now that we're going 6 months or so between most of our appointments. Dr Conklin's nurse is forwarding our information to Betsy (nurse in charge of SB Clinic) to see if we qualify to be seen in this clinic... while Carter's tethered cord was not a true case of SB, his history with urology and neurosurgery may fit the bill.
Tuesday in Urology clinic, Carter weighed in at 22 lbs. Today, he weighed in at a whopping 24 lbs. Mind you, he was fully clothed, shoes, AFOs, the whole deal - at both of these weights, but it's great to see numbers like that. The kid has been eating NON-STOP. It makes my heart happy to see him munch on mini-waffles in the morning :) He's even chugging his formula while holding the bottle himself... a big improvement from us having to sit and hold it/offer it for an hour for him to drink half. He basically eats anything we're eating - even most meats! He's a big fan of ice cream and cheddar Chex mix right now. I think for the first time we aren't stressing about his weight, and may actually be looking forward to our September appointment with Mary Jane!
Carter's speech also continues to thrive. The kid is such a ham and will show out like no other when you ask him to do or say something. He's an expert copy-cat... especially with noises. We love the way he says "Meemer"... which comes out something like "Muhhhmuhr" and sometimes he growls it when he really wants to get her attention. He's not big on calling out "Dadda," but has no qualms about shouting "Momma"... over.... and over... and over. His new favorite animal noise is the cow - "Booo!" We had a miscommunication on that one... but it's close! It's too much fun to watch him learn new things.
Getting used to these legs!
Today we went to Children's South to follow-up with Dr Conklin. Carter has been out of casts for 6 weeks, and has been tolerating his braces wonderfully. He actually doesn't like to have them off, and asks to have his socks and "shoes" back on! We've been wearing them pretty much 24x7... besides during swimming/bath time. Today, Dr Conklin let us know that his feet look beautiful, and that he's comfortable with us decreasing our wear to just 8 hours a day. He wants us to start seeing Early Intervention for physical therapy to help with Carter's developmental delays that have been caused by his muscular/skeletal issues. We'll be calling to set that up in the next month. He said he had no doubt that Carter would continue progressing on his own, but EI would help get him up to speed faster, and give us some things to work with him on at home. He released us for 6 months, but also suggested that we may want to be seen in the Spina Bifida Clinic, which incorporates Neurosurgery, Orthopedics, and Urology all in one day's worth of appointments. Dr Conklin, Dr Joseph, and Dr Blount all participate in this clinic - so we would essentially be seeing the same doctors, just all in one day. This will more than likely work really well for us now that we're going 6 months or so between most of our appointments. Dr Conklin's nurse is forwarding our information to Betsy (nurse in charge of SB Clinic) to see if we qualify to be seen in this clinic... while Carter's tethered cord was not a true case of SB, his history with urology and neurosurgery may fit the bill.
Tuesday in Urology clinic, Carter weighed in at 22 lbs. Today, he weighed in at a whopping 24 lbs. Mind you, he was fully clothed, shoes, AFOs, the whole deal - at both of these weights, but it's great to see numbers like that. The kid has been eating NON-STOP. It makes my heart happy to see him munch on mini-waffles in the morning :) He's even chugging his formula while holding the bottle himself... a big improvement from us having to sit and hold it/offer it for an hour for him to drink half. He basically eats anything we're eating - even most meats! He's a big fan of ice cream and cheddar Chex mix right now. I think for the first time we aren't stressing about his weight, and may actually be looking forward to our September appointment with Mary Jane!
Carter's speech also continues to thrive. The kid is such a ham and will show out like no other when you ask him to do or say something. He's an expert copy-cat... especially with noises. We love the way he says "Meemer"... which comes out something like "Muhhhmuhr" and sometimes he growls it when he really wants to get her attention. He's not big on calling out "Dadda," but has no qualms about shouting "Momma"... over.... and over... and over. His new favorite animal noise is the cow - "Booo!" We had a miscommunication on that one... but it's close! It's too much fun to watch him learn new things.
And now... for some pictures :)
Getting used to these legs!
Munchin' on a waffle before church
Ice cream cones are delicious!
I love Cracker Barrel!
Hold on tight!
Johnny Rockets after our Urology appointment... he loves milkshakes and hamburgers!
Having fun while we waited for our Orthopedic appointment
Tuesday, September 27, 2011
Ephesians 6:10
Finally, be strong in the Lord, and in the strength of his might.
Yesterday’s agenda:
0900 – leave for Birmingham
1035 – park at Children’s, realize bottles are still in Deatsville
1100 – Josh takes Carter to PT appointment, I run to nephrology clinic to beg for formula and a bottle
1130 – nutritionist Brooke saves the day with a can of PM 60/40
1200 – Carter has a new boot, finally! & Connie is so proud of his progress!
1215 – lab slip from nephrology, Carter eats apples while we wait to be stuck
1230 – labs drawn, such a big boy! Didn’t even cry with the tourniquet, just with the poke!
1245 – lunch for mommy and daddy
1310 – check in at neurosurgery
1345 – called back
1400 – Dr Wellons says everything looks great with his scar and lower body function as far as he’s concerned, and the helmet is an option to straighten out his head shape, but not an absolute necessity… and since insurance usually doesn’t cover the $4,000+ helmet… we think Carter will be fine without one :) We won’t see neurosurgery until next year!
1500 – head over to nephrology (again) and they’re waiting on us. Nurse Nikki weighed, measured, and got a blood pressure and temp on him. He weighed 19lbs 13oz, 27in long. Mary Jane saw us shortly after we finished vitals, and said his labs looks great – his potassium has leveled itself out even more, so we’re cutting back on the kalexate again. She didn’t even bother having him cathed for a urine sample since he’s not running fever and has been doing so well (plus, she knows that we see the signs and will bring him in if needed). The only thing of concern is his weight! We were shocked… because he’s a healthy boy, not by any means scrawny. He’s always been on the short side – 9th percentile for height :) However, at our last appointment he was near the 100th percentile for weight, and has since dropped to the 50th. He’s gained 8oz since we were admitted last, but that’s apparently not enough. We haven’t been giving him a lot of baby food for fear he’d want even less of his formula… as we struggle to get 20-24oz in him every day. She listened to our concerns, and we told the nutritionist the same, and we came up with a game plan. For his kidney to stay healthy and hydrated, they recommend he take in no less than 27oz of fluid daily… 24oz of that should come from formula to aid in calorie intake. We will feed him some form of baby food or cereal three times a day for extra calories… a major leap from our 1-2oz of baby food twice a day. This could all just be a fluke from him being sick again this month – the gagging and vomiting spells force us to stop baby food feeds in order to keep formula and medicine down – so now that his snot is manageable and we have a routine to keep it at bay, hopefully he will gain in the next two months. Worst case scenario is he drops to the 40th percentile by our next appointment, and they will place a G-tube in his nose to feed him through… this will be a NIGHTMARE! He had an NG tube several times while in the NICU, and was constantly pulling it out. His dexterity is much greater now… so I can only imagine how often we would be at the ER having it replaced! She said he is by no means at a “failure to thrive” stage, and that renal patients tend to have sorry appetites for unknown reasons… but that’s usually in patients that have more severe cases of kidney disease (Note: Carter’s kidney disease is considered mild – not moderate, or severe – MILD – praise God!) So, all that said – please pray that Carter will be HUNGRY! We need this boy’s appetite to increase greatly, or there will be consequences.
1600 – we headed back home. Traffic wasn’t great, and Carter slept most of the 2 hour drive back…
1800 – Walmart… Zaxby’s for sustenance…
1845 – change the bag, bath time!
2030 – why is Carter still so awake? ….oh… the 2 hour nap 3 hours before bedtime… BUT, guess who managed to get on their knees a little bit last night due to his wild hair?! He got tickled with himself when he did it :) This is pretty cool, because we weren’t sure if his hips would allow him to get into this position!
2130 – little man finally sacked out after a super long day
Up Next:
October 11: Dr Harmon in General Surgery for follow-up on colostomy
October 17: Dr Conklin in Orthopedics for follow-up on arthrogryposis and bilaterally dislocated hips
November 28: Mary Jane, CRNP in Nephrology for follow-up on kidneys/nutritional issues
After our nephrology appointment on November 28th, we’ll be admitted under the nephrology team to start Carter on fluids for his urology surgery the next day. The night before surgery they always stop feedings at midnight, and for renal patients this can get tricky for electrolyte needs, so we’ll be admitted just to make sure Carter doesn’t end up dehydrated and is good and ready for surgery the morning of the 29th. This surgery is the first in a series to descend Carter’s testicles, which is normal for babies with prune belly syndrome. Dr Joseph explained that the first surgery shouldn’t entail anything major – expanding vessels and tissue to prepare for future surgeries – and that if he doesn’t start descending them that we shouldn’t even have to restrict Carter’s movement afterward. This surgery is not a huge deal, but any time a little one is subject to anesthesia there is always paranoia on the parent’s part :) We know he’ll do fine, though.
Our new prophylactic, bactrim, along with draining Carter’s bladder by manipulating it manually (mashing on his belly), has worked wonders apparently. We have been UTI free for over a month, and hope to continue that run! Thanks for your prayers, and keep ‘em coming!
Yesterday’s agenda:
0900 – leave for Birmingham
1035 – park at Children’s, realize bottles are still in Deatsville
1100 – Josh takes Carter to PT appointment, I run to nephrology clinic to beg for formula and a bottle
1130 – nutritionist Brooke saves the day with a can of PM 60/40
1200 – Carter has a new boot, finally! & Connie is so proud of his progress!
1215 – lab slip from nephrology, Carter eats apples while we wait to be stuck
1230 – labs drawn, such a big boy! Didn’t even cry with the tourniquet, just with the poke!
1245 – lunch for mommy and daddy
1310 – check in at neurosurgery
1345 – called back
1400 – Dr Wellons says everything looks great with his scar and lower body function as far as he’s concerned, and the helmet is an option to straighten out his head shape, but not an absolute necessity… and since insurance usually doesn’t cover the $4,000+ helmet… we think Carter will be fine without one :) We won’t see neurosurgery until next year!
1500 – head over to nephrology (again) and they’re waiting on us. Nurse Nikki weighed, measured, and got a blood pressure and temp on him. He weighed 19lbs 13oz, 27in long. Mary Jane saw us shortly after we finished vitals, and said his labs looks great – his potassium has leveled itself out even more, so we’re cutting back on the kalexate again. She didn’t even bother having him cathed for a urine sample since he’s not running fever and has been doing so well (plus, she knows that we see the signs and will bring him in if needed). The only thing of concern is his weight! We were shocked… because he’s a healthy boy, not by any means scrawny. He’s always been on the short side – 9th percentile for height :) However, at our last appointment he was near the 100th percentile for weight, and has since dropped to the 50th. He’s gained 8oz since we were admitted last, but that’s apparently not enough. We haven’t been giving him a lot of baby food for fear he’d want even less of his formula… as we struggle to get 20-24oz in him every day. She listened to our concerns, and we told the nutritionist the same, and we came up with a game plan. For his kidney to stay healthy and hydrated, they recommend he take in no less than 27oz of fluid daily… 24oz of that should come from formula to aid in calorie intake. We will feed him some form of baby food or cereal three times a day for extra calories… a major leap from our 1-2oz of baby food twice a day. This could all just be a fluke from him being sick again this month – the gagging and vomiting spells force us to stop baby food feeds in order to keep formula and medicine down – so now that his snot is manageable and we have a routine to keep it at bay, hopefully he will gain in the next two months. Worst case scenario is he drops to the 40th percentile by our next appointment, and they will place a G-tube in his nose to feed him through… this will be a NIGHTMARE! He had an NG tube several times while in the NICU, and was constantly pulling it out. His dexterity is much greater now… so I can only imagine how often we would be at the ER having it replaced! She said he is by no means at a “failure to thrive” stage, and that renal patients tend to have sorry appetites for unknown reasons… but that’s usually in patients that have more severe cases of kidney disease (Note: Carter’s kidney disease is considered mild – not moderate, or severe – MILD – praise God!) So, all that said – please pray that Carter will be HUNGRY! We need this boy’s appetite to increase greatly, or there will be consequences.
1600 – we headed back home. Traffic wasn’t great, and Carter slept most of the 2 hour drive back…
1800 – Walmart… Zaxby’s for sustenance…
1845 – change the bag, bath time!
2030 – why is Carter still so awake? ….oh… the 2 hour nap 3 hours before bedtime… BUT, guess who managed to get on their knees a little bit last night due to his wild hair?! He got tickled with himself when he did it :) This is pretty cool, because we weren’t sure if his hips would allow him to get into this position!
2130 – little man finally sacked out after a super long day
Up Next:
October 11: Dr Harmon in General Surgery for follow-up on colostomy
October 17: Dr Conklin in Orthopedics for follow-up on arthrogryposis and bilaterally dislocated hips
November 28: Mary Jane, CRNP in Nephrology for follow-up on kidneys/nutritional issues
After our nephrology appointment on November 28th, we’ll be admitted under the nephrology team to start Carter on fluids for his urology surgery the next day. The night before surgery they always stop feedings at midnight, and for renal patients this can get tricky for electrolyte needs, so we’ll be admitted just to make sure Carter doesn’t end up dehydrated and is good and ready for surgery the morning of the 29th. This surgery is the first in a series to descend Carter’s testicles, which is normal for babies with prune belly syndrome. Dr Joseph explained that the first surgery shouldn’t entail anything major – expanding vessels and tissue to prepare for future surgeries – and that if he doesn’t start descending them that we shouldn’t even have to restrict Carter’s movement afterward. This surgery is not a huge deal, but any time a little one is subject to anesthesia there is always paranoia on the parent’s part :) We know he’ll do fine, though.
Our new prophylactic, bactrim, along with draining Carter’s bladder by manipulating it manually (mashing on his belly), has worked wonders apparently. We have been UTI free for over a month, and hope to continue that run! Thanks for your prayers, and keep ‘em coming!
Friday, July 15, 2011
Movin' On Up!
This week has been a busy week at the Piatt house. We somehow (more specifically - a miracle) managed to sell our trailer without losing hardly any money on it. We also close on our new house next Friday :) The couple buying our trailer is sweet as can be, and they're purchasing it for their daughter who is 21 and disabled. She'll live in the trailer on their property to give her a little freedom, but they can still be there for her. They're moving the trailer Wednesday, so we're moving out of the tin box this weekend, and into my parent's house. Carter and I moved in last night while Josh was at work, and he'll join us tonight. Carter's got a cute green and pink pack-n-play and he's sleeping in his Uncle Greyson's room! As tiny and confining as it was, I'll be sad to see the trailer go... we've had alot of life changing events in that little tin box. Josh proposed there, I told him we were pregnant there, and it was the first place Carter was brought home to. However, many memories are yet to be made in our new home, and it will definitely provide a larger space for those events :) The yard is massive, so Maverick will definitely be pleased. And there's a screened in back porch that we'll be able to hang out with him in. He's being boarded from Tuesday through Friday, and will have a pampering day while he's there. Please send up prayers for us this coming week - moving is stressful, but we also have appointments at Children's on Monday. We'll be seeing urology and nephrology, to include renal labs and a renal ultrasound. We're trying to work in a stop at PT for a boot stretching... Carter's gained a few pounds in his legs :) so it will be a very long day. Josh may have to work, so my dad will be accompanying me. He's not much for diaper changing or feeding, but Carter loves him and he'll be a big help with driving and hauling stuff. Now that we're on the Carter subject - he is officially 6 months old. We took him this past Saturday to have his pictures made, and boy, did he have fun! He did so well, and we got some great shots. He also rolled over for the first time Sunday! He loves going to school, and gets so excited when he sees his teacher in the morning. He does much better with his feeds at daycare, also... probably because they're more persistent with him. He's down to 4 or 5 bottles a day, and averages about 30 ounces a day.... still a sore spot for me, since nephrology is aiming for 40 ounces for his kidney. I can't wait to see what his renal panels show now that his eating habits have changed. He eats oatmeal and fruit mid-morning, and a vegetable with rice cereal in the evening. I've been making his food myself, and he thoroughly enjoys it. He loves pears, apples, squash, and zucchini.... and sweet potatoes! but those make him a little constipated :-/ We've tried bananas, but avoid them for fear of increased potassium levels.... we're still adding kalexate to his formula to regulate the potassium he gets from his bottles. Hopefully everything will read normal on his bloodwork Monday. Carter was wearing his boots really well for about a month after we had new ones made, but has recently started crying in the middle of the night to have them taken off. We're hoping PT can see us to adjust them so they aren't as tight on his poor chunky legs. And, NEWSFLASH: We've been UTI free for TWO MONTHS! What a blessing!! Our next big step medically is to see about getting referred to Cincinnati Children's colorectal program. We have an appointment with Dr. Harmon, Carter's pediatric surgeon, on August 4th, and will discuss the referral and application then. Please keep us in your prayers as we make big decisions for Carter over the next year, mainly about his colostomy and hips. We are so blessed that he was a full-term, and a rather large baby so we could get all of the immediately necessary surgeries knocked out in his first month of life. He is such a happy boy, and takes everything in stride :)
Sunday, June 26, 2011
father's day & more
Josh's first Father's Day was nice :) My mom was out of town with Greyson, so we cooked out with my dad. He got Josh a Porterhouse... amazing hunk of meat. Tebow and Mav got Josh's leftovers :)
Josh got a red PS3 controller for his gift. One of the gifts we got my dad was this picture of Carter framed.
While Meemer was out of town we took alot of pictures to text to her... here are some of the best ones.
He's getting very independent... he doesn't want help with ANYTHING.
Bright lights!
He likes to take naps in our bed on the weekends :) and so do I!
Carter is almost 6 months old now! Time flies! We've managed to be out of the hospital and UTI free for over a month now - what a blessing!! Maybe it's his body growing and adjusting, or it could be our new macrobid suspension... but something is working to our benefit! Our next appointment is July 18th for urology and nephrology, and they'll be doing another renal ultrasound to make sure everything still looks the same. I'm anxious to see how his panels go... last time we were in, the nutritionist said that for his solitary kidney he needed to be taking in 40 oz of formula a day. On a good day we get 35... most days it's more like 27-30. Everyone else's doctors have told them to cut back on formula and supplement with more baby food! Carter's doing the food thing, but we don't give him a whole lot because it's already hard enough to force formula down him when he's not full. His urination seems to have decreased... but not enough for me to worry. I'm sure they'll dilate his urinary stoma again when we go in July. We saw physical therapy at our last nephrology appointment and got some new boots :) he's been wearing them most nights to bed, and his feet have made alot of progress. His right foot is really loose, and he can even hold it straight for a few seconds after I've stretched him. His left is still pretty stiff, but has made good progress. He's starting to put weight on his legs and feet when we hold him up, so we've gotta get those suckers straightened out so he can walk when the time comes! Not sure if it was mentioned in the last post... but we switched to Victory for daycare... and we are LOVING it! We don't have to worry about him, and I know he's getting great care! One of my best friends works there every other week for a couple of days, and a few others that I grew up with work there also. :) Plus, it's cool that Carter's care is being overseen by the same director that was there when I was little - Mrs Joyce Parker! Well, I'm through rambling for now. I hope everyone's enjoying this hot summer!
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