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 kidney. Show all posts
Showing posts with label kidney. 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!
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, July 3, 2012
Swimming & Urology
Saturday Josh took Carter swimming for the first time. He wasn't so sure about it at first, but after they got a ball to play with he decided it was okay. Sunday I got out there with him and dunked him a couple times - he did great! He didn't even cry about it :)
Funny pictures from his bag change after swimming. I couldn't catch C with the sunglasses on, so Josh will suffice!
Yesterday we went to Birmingham for a visit with one of Carter's favorites - Dr Joseph - our urologist. It was a long day. We checked in right before 11 to get our paperwork, and headed up to imaging. Carter screamed through the entire renal ultrasound, but was gentleman enough to blow kisses to his tech as we left :) In his defense, he was hungry from not being allowed to eat for 3 hours. He scarfed some bottle on our way to the cafeteria, and followed it up with some hamburger and french fries. They called us back as soon as we made it back to clinic. We kept him entertained while we waited for the doctor by playing hide and seek around the curtain, eating goldfish, and playing with Mountain Dew bottles.
Dr Joseph came in right around our appointment time (1:30p) and after calming Carter down enough to finish chewing his goldfish, took a peek in his diaper. He immediately mentioned that his urinary stoma was too small. He said the ultrasound showed retention of fluid on the bladder and backed up in his kidney. The plan is to cath 3-4 times a day to really drain his bladder well. He taught Josh and I how to do it, and watched me do it to make sure we were able. We'll go back in a month for a repeat ultrasound, and if he's still retaining too much we'll either cath more or have a surgery to revise his stoma. He checked C's testicles and said both were still in place from the prior surgery. We talked about the plan long-term for Carter's urology needs - a Mitrofanoff is more than likely in our future. He gave Carter a high-five when he was finished, and his nurse set-up our supply delivery. While I scheduled our August appointment, Josh headed down to check-in at Nephrology clinic for our cast-less weigh-in. After a short wait, we were taken back for the moment of truth. 21 pounds 3 ounces. Since our April appointment he's averaged 5 grams gained a day. I think 10 was our big goal, but Mary Jane said as long as he's progressing, eating better, and not losing we'll hold tight. All of our favorites came to see him while we were in Clinic 7, and raved over how great his feet look :)
Josh went back to work after we got home, and Carter and I headed over to Meemer's to wait for some of our family to get in from Florida. We're having our 4th of July shin-dig again this year. We took Meemer Billie Earl, and Aunts Mary Anne and Rochelle to eat Mexican. Carter - little pig - ate half of my beans, some rice, several chips, and some tortilla. He asked for his bottle on the way back to Meemer's... a first, I think. I fed him his medicine bottle, and then Meemer Billie fed him the rest. He snuggled right up to her and was playing with her afterward :) He's such a sweet little man.
New words: yes (yeh-yeh), no (uhn-uh)... both of these are accompanied by dramatic head shakes, eat (eeee) he'll sign this sometimes, too. thank you (da-da) this one gets signed, sometimes.
He's getting really good at telling us what he wants. We can go through a series of yes or no questions and usually figure it out. He's a very smart, attentive child. Yesterday he hollered for me over the monitor for the first time - he's got us both wrapped :)
Stay tuned for tons of pictures from our fabulous 4th!
Funny pictures from his bag change after swimming. I couldn't catch C with the sunglasses on, so Josh will suffice!
Yesterday we went to Birmingham for a visit with one of Carter's favorites - Dr Joseph - our urologist. It was a long day. We checked in right before 11 to get our paperwork, and headed up to imaging. Carter screamed through the entire renal ultrasound, but was gentleman enough to blow kisses to his tech as we left :) In his defense, he was hungry from not being allowed to eat for 3 hours. He scarfed some bottle on our way to the cafeteria, and followed it up with some hamburger and french fries. They called us back as soon as we made it back to clinic. We kept him entertained while we waited for the doctor by playing hide and seek around the curtain, eating goldfish, and playing with Mountain Dew bottles.
Dr Joseph came in right around our appointment time (1:30p) and after calming Carter down enough to finish chewing his goldfish, took a peek in his diaper. He immediately mentioned that his urinary stoma was too small. He said the ultrasound showed retention of fluid on the bladder and backed up in his kidney. The plan is to cath 3-4 times a day to really drain his bladder well. He taught Josh and I how to do it, and watched me do it to make sure we were able. We'll go back in a month for a repeat ultrasound, and if he's still retaining too much we'll either cath more or have a surgery to revise his stoma. He checked C's testicles and said both were still in place from the prior surgery. We talked about the plan long-term for Carter's urology needs - a Mitrofanoff is more than likely in our future. He gave Carter a high-five when he was finished, and his nurse set-up our supply delivery. While I scheduled our August appointment, Josh headed down to check-in at Nephrology clinic for our cast-less weigh-in. After a short wait, we were taken back for the moment of truth. 21 pounds 3 ounces. Since our April appointment he's averaged 5 grams gained a day. I think 10 was our big goal, but Mary Jane said as long as he's progressing, eating better, and not losing we'll hold tight. All of our favorites came to see him while we were in Clinic 7, and raved over how great his feet look :)
Josh went back to work after we got home, and Carter and I headed over to Meemer's to wait for some of our family to get in from Florida. We're having our 4th of July shin-dig again this year. We took Meemer Billie Earl, and Aunts Mary Anne and Rochelle to eat Mexican. Carter - little pig - ate half of my beans, some rice, several chips, and some tortilla. He asked for his bottle on the way back to Meemer's... a first, I think. I fed him his medicine bottle, and then Meemer Billie fed him the rest. He snuggled right up to her and was playing with her afterward :) He's such a sweet little man.
New words: yes (yeh-yeh), no (uhn-uh)... both of these are accompanied by dramatic head shakes, eat (eeee) he'll sign this sometimes, too. thank you (da-da) this one gets signed, sometimes.
He's getting really good at telling us what he wants. We can go through a series of yes or no questions and usually figure it out. He's a very smart, attentive child. Yesterday he hollered for me over the monitor for the first time - he's got us both wrapped :)
Stay tuned for tons of pictures from our fabulous 4th!
Monday, June 4, 2012
June Kidney Report Card
Carter's kidney is doing wonderfully! Today we went to see Ms Mary Jane, and let me tell you... it was a long afternoon. Our appointment was at 1, and the clinic was super busy (along with the lab). We didn't leave the hospital until almost 4. Carter cried for the stick. Enjoyed a wagon ride (because now he has a small episode when he sees a wagon... he HAS to get in it!). Screamed because it was nap time. For nearly 2 hours. Screamed. They didn't even try to get a blood pressure on him because he was so irritated. He managed to flirt with our favorite renal nurse, Nikki, and of course batted eyes at Mary Jane. They couldn't get a completely accurate weight on him because of the casts, but he came in at 21.8#. She said according to his recorded weight the day of his surgery back in May, though, he had gained at a good rate for that month. We talked about how his appetite has definitely increased, and that he is doing really well with table foods now, as well as the added oil in his bottles. His potassium was smack-dab in the middle of normal - woot! Maybe next time it will be on the low end and we can start trying whole milk instead of this uber-expensive formula! Speaking of next time - they've released us for a 3 month stretch this time, as opposed to our normal 2 month check up. She wants us to get a weight on their scale when we come next month (cast-less) for our urology appointment, and then we'll see her in September! We're also switching back to the macrodantin for his prophylactic since he always ends up with e. coli, which is resistant to bactrim. It's a little bit of a pain since he has to take half of a capsule... therefore we have to guess what half of the powder inside is... mix it in a small amount of formula that we know he will actually eat.... pray fervently that he eats that whole amount.... etc, etc, etc. Maybe it will cut down our UTI's further, though! His iron/hematocrit still needs improvement.... today instead of G-tube threats, we talked about IV iron. We shall start being more faithful with iron, lest we end up starting an IV every month - BLAH. Dr Feig stopped by to say "hi", and then we made our way back down 65. Overall, the kid is doing well. We couldn't be more blessed that what we originally thought would be our biggest struggle medically is actually the least of our worries. When Mary Jane and Dr Herndon did our initial consult and viewed our ultrasound, they went over possible scenarios of dialysis, transplant, hospitalization. 2 weeks or 2 years. They had no clue what the extent of damage (or lack thereof) may be to his lone kidney. For whatever reason, God allowed that tiny bean shaped organ to be healthy. thankyoujesus!
Wednesday, April 18, 2012
weigh-in
Quick update - Josh took Carter to the pediatrician's office yesterday to have him weighed. He stayed pretty much the same since his weigh-in two weeks ago with nephrology. Mary Jane said she wasn't super concerned yet, and just to work on building him up to bigger amounts of fattier foods. We started adding the oil in... so far no tummy issues like we had with the chocolate syrup. He still just eats sucky at daycare in the middle of the day. We have no idea why. Maybe distraction? Who knows. ANYWAY... I caught some cute pictures of him this afternoon...
He was a little irritated, and wanted the camera - but look at those baby blues!
"How did I get down here?"
"Mom! Did you see that?!"
I took this a couple weeks ago during bath time. I thought some of you may be curious what a hole-less hiney looks like. That line is not a crack... it's his scar from his tethered cord release. Before that his lower back/butt had no indentions.
Monday, April 2, 2012
Junk Food Junkie
Today we travelled North to see our favorite nurse practitioner - Mary Jane Gillum - for a renal report card! We've been shoveling food in Carter all weekend to make up for his weight loss from being sick, knowing that he needed a decent weigh-in for this appointment. He's been eating like a champion, but it still wasn't enough to get him back up to our 21 pound high. Last week at our ortho appointment he weighed 19 lbs 3 oz (fully clothed). Today, completely nakey he weighed in at 20 lbs 3 oz. and is only in the 4th percentile for weight and height (he's 28 in tall today!) Honestly, we're just happy to still be on the charts! However, they understand that with his bronchiolitis and the weird UTI-like symptoms a couple weeks ago, it's pretty impressive that he gained over a pound in a week! As long as we can keep the boy well he may chunk up again. We were given orders to make him a junk food junkie. Anything he'll eat that's super high in saturated fats - keep it coming! Our nutritionist, Brooke, paid a visit to give us some tips and tricks. We're going to try adding 1 mL of oil per oz to his bottles, and can also add flavored syrups - hello, chocolate milk!! She said to keep carb loading him since he likes it, and add butter or oils to any veggies we may get him to eat. The higher the calories and fat content, the better! The boy is addicted to the Gerber cheese puffs, so Mary Jane suggested a Lays natural white cheddar cheese puffs that her girls like. Josh is currently a healthy eating nut, so it made him cringe. Dr. Feig encouraged us that kid's nutritional needs are very different from ours - while saturated fats make us have a gut, they provide nutrition for Carter's brain to develop! So, after we got back in town, we made a stop at Winn-Dixie for these fattening treats!
Unfortunately, they didn't have the cheese puffs, so I'll have to check Publix for those later this week. He ate spaghetti o's tonight, and loved them! Also a big fan of the mini Nilla wafers - he gets that from his Meemer! Overall, Carter's kidney health continues to be stable. His iron was down a little, so we've got to start giving him his supplement more faithfully. His potassium is still holding steady, so we're staying on the low elemental formula for now. We're so thankul that his kidney is healthy, and that all we have to worry about is weight gain. It seems like alot at times, but it could be much more stressful if we were having to deal with poor function of an organ that has no back-up plan! Please send prayers our way for C to be HUNGRY! We'll be weighing in with our pediatrician in a couple of weeks just to see if he's put anything on... if not, we've been warned that a G-tube may be in our future. As long as they're satisfied with his weight, next up will be our ortho surgery on May 2nd, then another renal check the first part of June! We're so glad that our visits are becoming more sparse, although we love everyone up there! Here are some pictures from today - Josh loves Carter in overalls, so that's what he wore today to visit with his doctor and nurse friends :)
Where'd it go?!
Clinging to dad for dear life before labs
Playing after a busy day
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