Tuesday, December 6, 2011

Double-dose

There’s a lot to catch up on since my last post.
For Halloween we took Carter to the Candy Walk in Downtown Prattville… the Sayer/Piatt clan had a Wizard of Oz theme, and Carter made his debut as the Tinman.

Tinman

Dorothy

Lion

Greyson

On Halloween night we took him to see Josh’s family, and then met Meemer and Uncle Greyson to go Trick-R-Treating in Pop’s neighborhood. Carter had a good time, and Josh got a lot of candy that he didn’t eat :)


On November 2, we admitted through Nephrology for Carter’s MRI for Dr Harmon. His urine had started to smell funny to me, so we had them go ahead and take a sample just in case. Sure enough, it was another UTI starting. He did really well with his MRI, which took about an hour, and woke up quickly. However, he had been snotty, and the meds they gave him while under anesthesia stopped him up pretty badly. To top it all off, Josh ended up sick with the stomach virus while we were in the hospital, and so did Carter. However, we all made it home well by Saturday in time to watch the Alabama/LSU game. (I had the stomach virus the next week…)

Cool headband!

Sleepy boys

"Big Al" at Children's Harbor
The following week was quiet but frantic as I prepared for my trip to Maryland, and my first long stay away from Carter. I left Sunday and didn’t come home until Saturday… it was a work trip for an Intern Conference. We had a really great time, but I was so glad to get my hands on my baby on Saturday! :) Josh and Meemer handled him like pros, of course. The next week was the week of Thanksgiving, and Carter made his first trip out of state. We visited my cousins in Valdosta, GA, for the second year in a row. Our family has been doing Thanksgiving there for the past several years now. It’s gorgeous and quiet, and we have bon fires and the boys go hunting. Carter enjoyed being passed around, playing with his cousin Nathaniel, and being outside. He even got to play with some kittens… while I tried hard to convince Josh to take one home with us :) This year we had a lot to be thankful for. Carter made it into the world safely, and has overcome major obstacles this year. I graduated from college. We got married. And we bought our first home.

Eating cheese puffs

Sweet kitty

Shoes!
Playing!

Monday we headed back up to Birmingham to check in through Nephrology for the second time in a month – this time for Carter’s urology surgery. We had our nephrology clinic appointment with Mary Jane before we admitted, and his labs showed an elevated white blood cell count, so they did another urinalysis to check for a UTI. Nephrology warned us that if it came back positive for UTI, urology may reschedule the surgery once the infection cleared up. Of course, his urine is always dirty, and our urologist made it clear to us that he would NOT have treated Carter again if it weren’t for the surgery, but that he didn’t feel it was a risk to go ahead with the surgery… We trust this man completely and gave him the go-ahead. Carter’s feeds were stopped at midnight on Monday night, and he didn’t go down for surgery until almost noon on Tuesday. We surprised him with a pillow pet that we received from one of the craft rooms at Children’s before the surgery to keep his mind off of being hungry. The surgery lasted 3-4 hours and he did extremely well, as usual. Dr Joseph was super-pleased with the way things went. Originally, he thought we would take a phased approach to this part of Carter’s problems, but he managed to descend both testicles, circumcise him, and fix the urethra opening that was slightly misplaced. All of this was done laproscopically, so we had no incisions to clean or deal with. Carter has three “holes” across his tummy, and one in each side of his scrotum. The stitches are all dissolvable, and the only wound care we have to do is to put polysporin on the circumcision area. It’s already healing up wonderfully (today is a week since surgery). He’s a little swollen and bruised, but otherwise is fine! It took him a very long time to wake up all the way from surgery, and we started him with water to make sure he didn’t get sick to his stomach after the anesthesia. He didn’t have a real feed for nearly 18 hours, and never fussed about it! We would have been able to go home Wednesday, but had to wait until Thursday for the final culture to come back on the UTI. This time we came home on two antibiotics for two bugs.

Night before surgery

Will Laugh For Food!!

Waking up

This is serious, mom

Saturday Carter went to his first parade! We met the Sayers for the Prattville Christmas Parade, and then had dinner with them. He enjoyed being outside, petting their dogs, and eating green beans at supper.

Carter is almost 11 months old. I’ve started planning his birthday party… which is blowing my mind. He’s still a happy baby, but is starting to get a little attitude. We still have to fight with him to eat his bottles. He’s not a fan of a sippy cup. He likes fruit baby food and not vegetable, but LOVES table food vegetables. We’ve started giving him toast, graham crackers, and the baby cheese puffs. He still won’t touch juice in a bottle or cup, but loves it in his oatmeal. He’s now able to army crawl to get what he wants, but rolls where he needs to go even faster. He loves the Christmas tree and his Elf on a Shelf. He bangs toys together, throws them, shares them with you, and gives his stuffed animals kisses. He’s started reaching for people he wants to go to, and is still shy in big groups and loud or unfamiliar places. He and Maverick are finally getting used to each other…. Mav is now calm around him and will let Carter pet him without licking his whole face, and Carter isn’t as scared and talks to him through the kitchen door often. Speaking of talking, we still have no English words out of Carter’s mouth, but he babbles and giggles constantly. I love this chunky man more than life, and enjoy seeing him grow and learn.


Coming soon – Carter’s first Christmas. We can’t wait! We have a follow-up with Dr Joseph the end of December. The first part of January will be busy – One year pictures. One year check-up. Birthday party. The middle of January we have a follow-up with Dr Harmon to discuss the MRI findings. And the end of January we will take another trip to see Ms Mary Jane to check on Carter’s kidney.
Please pray that we make good decisions concerning Carter’s upcoming care. The next year will definitely bring more surgeries, more recoveries, and more struggles. Pray for peace and understanding as we go through the coming year with this little angel. Pray for strength and healing for him. Pray for us financially – we have both been blessed with wonderful jobs, and so far have managed to stay on top of the constant influx of hospital statements. Pray that this boy will gain weight (we’re still being bullied about it)! Pray for us to have patience as he starts getting more mobile and getting into things, and developing his personality and attitude :)
I’ll try to update more frequently… this was a huge gap! Enjoy time with your families, and have a wonderful holiday season!


Sunday, October 23, 2011

Family Pictures

This past Thursday we took some family photos and captured Carter at 9 months!
Honey-pie was not sure about the cold, and definitely wasn't a fan of his first encounter with grass... but he did really well!
A big thanks to Lindzie Smitherman of The Lindz Photography! We had a great time and they turned out AMAZING!











Thursday, October 20, 2011

One-tooth Wonder

It’s official! As of this past Saturday, Carter has his first tooth!! My friend Alisha watched Carter for me while my Dad and I went to the Florida/Auburn game, and she called me shortly after I left with the news that she found a tooth! He’s so cute with it, and thinks it’s funny when he bites you and you pretend it hurts :)

In other news, Carter is now 9 months old! He weighs 20 ½ pounds now (he gained a ½ lb in 2 weeks, so Mary Jane is pleased!) He’s still not sitting up by himself, but his tummy muscles get stronger everyday! He gets up on his knees and rocks, and grins because he knows he’s done something. He squeals and giggles and flaps his arms. He loves puffs, and chews them well. He watches intently when Josh and I eat, and smacks along with us! I’ll have to post a video of that soon. He’s starting to experience stranger anxiety, but is still really great in crowds… only occasionally does he get upset about someone talking to him or approaching him. He went to his first birthday party this past Sunday – his friend Kade. He did so good! And of course, Meemer fed him some cupcake! He loves my parent’s dog Tebow and their cat Noel, and is starting to get more comfortable with Maverick. We’re taking 9 month pictures this afternoon, along with some family pictures, and we’re doing Christmas cards this year! I’m so ready for the holidays and getting to capture so many memories with family as we enjoy Carter’s firsts!
Now, on to the medical news. We saw Dr Harmon in General Surgery last Tuesday, and he said Carter looked great. It’s not ideal for his bag to be covering the fistula, as it is supposed to drain once that “loose end” of the intestine fills up… it has to have somewhere to go! However, we did schedule an MRI for November 3rd (we’ll check in the night before to appease Nephrology for an IV for fluids). This MRI will be looking at the musculature near the rectum, to see if he’s developed any more muscle since his first MRI around 1 week of age. It will also show if the fistula is filling up, which isn’t necessarily a problem… it will force itself to reopen if it needs to, or Dr Harmon can re-dilate it to allow it to drain. We also talked about the Prune Belly Syndrome part of our diagnosis, and whether or not any muscle-tightening surgeries would need to be done on his abdomen. He said that our urologist would be more heavily involved in that part of his diagnosis, but that typically they don’t do those surgeries because they don’t always correct things, and sometimes do more harm than good. Plus, he said Carter’s is not too floppy compared to most, and that if he’s able to sit and pull up that he’ll be able to tighten them naturally, but may always be a little floppy.
We had an appointment with Dr Conklin, our Orthopedic specialist, this past Monday. They did a scoliosis series x-ray, since the tethered cord usually points to some form of it. He has a 14 degree curve. Scoliosis begins at a 10 degree curve. They consider bracing around a 20 degree curve, and surgical procedures are necessary for degrees of a much higher value. He said Carter’s is mild, and that it shouldn’t get worse since his tummy muscles are strengthening more and making him more stable in his posture. They’ll just keep an eye on it. As far as the arthrogrypossis, he said Carter’s movement is really great. Typically kids with arthrogrypossis have extremely stiff joints and have a lot of pain with movement, but his seems to be fine! He’s a little stiff through his knees and has always had some neck issues, but is doing really well overall. He said that they would not plan to do any surgeries on his hips unless he has hip pain once he gets old while walking, and even then that may not be our best route since it’s such a hit or miss surgery. In order to fix them they would have to pull the bone down (his sit up behind the socket that never truly formed) and cut a segment of bone out to make it short enough for the muscle and replace it on the pocket of the hip. Then, he would be in a series of SERIOUS casting to heal the cut bone and try to form a socket on the hip, which may still never happen to the extent that it would need to be pain-free. This is more easily done if it just one side, but becomes much harder when dealing with both hips, since he would be off-balance if they didn’t get it just right. So, he said he may walk with a slight waddle, but all-in-all should be able to walk! We’ll take that! He would like to do a foot surgery sometime next year to help completely correct his foot placement. The boots have helped tremendously in stretching his muscles in his legs, but his feet still turn up significantly. The tendon that runs down your shin and flexes your foot is too tight on Carter and runs toward the inside of his ankle. The surgery will be to snip that tendon on both feet, drill a hole in a bone on the top of the foot, and place the tendon there. Since the bones in the feet are so small right now, he wants to give him some time to grow and develop on his own before they plan a surgery. We’ll follow-up in March to see if he’s got enough bone to work with. Did you know that the typical white male child doesn’t walk until 13 months? Carter will more than likely be behind because of his conditions, but it actually is in our favor, because he’ll hopefully be getting around some, but not enough to be setting him back too far when he’s in casts for 6 weeks! Thankfully these casts will only come above the knee a little ways.
We’ve been out of the hospital for well over 2 months now, and we’re loving it!! I can’t tell you how great it is to be able to enjoy this sweet child at home. Thanks so much for your prayers, and keep ‘em coming!
waiting for Dr. Conklin

video
showing off his good movement :)

Saturday, October 8, 2011

Bottoms Up

The past 2 weeks we have been shoving food in Carter’s mouth every 2 hours while he’s awake. Here’s our “Champion Eating Schedule.”

0630: 2 oz water
0800: 6 oz bottle
1000: 2 oz juice with 3 tbsp oatmeal
1200: 6 oz bottle
1400: 2 oz fruit
1600: 6 oz bottle
1800: 2 oz veggie
2000: 6 oz bottle
I think his tummy has finally stretched and adjusted, because the past couple of days, he’s actually finishing two or three of the four 6-8 oz bottles in a day. The 8 o’clock bedtime bottle usually gets neglected because he’s just TOO tired to eat… but he usually takes at least 3oz. We’re averaging about 22oz of formula now… still not the 24oz they want, but it’s progress :) He’s also getting 2oz of juice and 2oz of water, for a grand total of 24oz of fluid intake. Still, not the 27oz they want… but it’s something!!
He had follow-up labs drawn last Friday to make sure the kalexate adjustment worked. Mary Jane called Monday and said everything looked great, and she’d like us to see our pediatrician in the next couple of weeks to weigh Carter just to make sure he’s not losing. We’re hoping he’ll have gained quite a bit thanks to his new diet!
Carter’s Uncle Greyson’s birthday was Friday, so we went to dinner with them after a busy week. Thank goodness it’s a long weekend! Tuesday, we’re off to Birmingham again for a follow-up with General Surgery. We “missed” our last appointment due to being admitted, but his resident did come around to see us. Hopefully we can get an MRI scheduled to see what Dr. Harmon thinks about Carter’s muscle function in his lower bowel area… this will be a major determining factor in possible pull-through. Thursday we see the pediatrician for Carter’s 9 month check-up, so hopefully his weight will reflect an improvement so I can call Mary Jane with good news :) The next appointment will be Monday, Oct 17 with Dr. Conklin in Orthopedics. I’m anxious for this appointment, because we’ve only seen him one other time outside of being admitted, and growth is the driving factor for any orthopedic surgeries he may have. At our first follow-up, he said he didn’t expect us to do anything before he was a year old. I’m still praying for a miracle – that the next ultrasound shows his hips in the socket! A girl can hope :) We’re also hoping that his feet have corrected quite a bit from his new boots, which he wears every night to bed without fussing about them!
The next few months will be super busy with the holidays. I’m going to try to update as much as possible, and to capture all of Carter’s firsts – pumpkin patch, Halloween, trip to Georgia for Thanksgiving, CHRISTMAS! He’s even going to his first birthday party, his friend Kade’s first birthday, next weekend! Pray for me… I have to go to Maryland/DC for a week in November for work, and it’s stressing me! I know Carter will be fine without me, but I’m sure going to miss him!

 still no teeth!

 getting BIG!


 going for a walk!

little pumpkin

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!



Saturday, August 6, 2011

Cell 792

Carter had been having some issues. Snotty issues. He had so much snot that he would gag on it when we'd give him the amoxicillin that he was taking for the UTI, and sometimes on food, and other times he would just gag on air. Last Sunday it became such a problem that he threw up just about everything we'd give him. So, to avoid dehydration, we headed up to the Children's ER. We checked in at 1 o'clock and they immediately took us back and checked his temp - what do you know, a FEVER! curious. They took a urine sample to check for UTI - hey guys, we've been on meds for 7 days for a UTI!! still checking. they never addressed the fact that the reason we were there was for SNOT! we were a little frustrated, and Carter was quite fussy. They started an IV and fluids since he hadn't kept much down in a day or two, and we waited for the dipstick results to come back. UTI. duh. so we checked in to room (cell) 792 at about 8 o'clock. Thankfully, we love 7NW. There are some great nurses up here. And even more thankfully, Nurse Emily has been ours this week during the day, Heath for swings, and Christy for mids - SCORE! It turned out to be a completely different bug this time - totally different gram of bacteria (gram negative/gram positive blah blah). Which is great, because we were a little worried that the antibiotics just weren't working on the old bacteria. However, this new bacteria is best treated with IV meds, so we've landed ourselves a 10 day stay at the Chilton. The plan is for us to make a prison break on Tuesday after our meds at 8am. We managed to sleep two nights in our new house and stock the pantry and fridge with tons of food, before we left the new-unorganized-goodness of our humble abode. Carter is much more mobile now than our last stay here, and he is pretty much going insane not being able to get in the floor and roll around. His crib is more like a jail cell for him. He immediately rolls onto his tummy and starts spinning in circles if we lay him down and he's not tired. He's also decided that the crib's metal bars are quite tasty... that or the cold metal feels good on his gummies. He was miserable the first day, but after hefty doses of antibiotics and a couple bags of fluid he is his active, happy self again. His eating has picked back up, and he's now been vomit-free for 2 whole days. As far as the snot problem, we've been using saline and suctioning him quite often, which results in alot of screaming, restraint, and tears. We've been taking him on frequent walks to keep him busy. His Meemer (my mom) came up Wednesday with Greyson to visit. After living with them for almost two weeks, they were going through withdrawals from their sudden and extended separation from him. She brought his rocker up so he'd have somewhere besides the bed to play. They kept an eye on him while Josh and I got out of the hospital for dinner at the Cheesecake Factory. I'm pretty sure I've gained back alot of the weight I'd lost, as the cafeteria doesn't have many delicious healthy options. I can do healthy... but only if it's at least semi-delicious. The lack of real-life vegetables is the hardest... so we usually pick something up for dinner. Yesterday I made a quick trip home for a few items and a decent shower (water pressure isn't so great in cell 792), and was reminded that my house is still a disheveled-move-in-mess. While I was gone Josh took Carter to the Harbor to see Mickey and Minnie Mouse... he said he liked to look at them from afar, but when Mickey spotted him and came over, he wasn't too thrilled :) He likes to look out of our top-floor window at what dad calls "freedom" and enjoys the crosswalk to the Harbor for the same reason. Tomorrow dear Joshua will go back to work, and I will rough it alone with the little man. My parents may be making a visit, and also some of Josh's family. Monday we'll draw labs again, and Tuesday morning will be our last dose of meds before we escape. Now that I've gotten the details out and my complaining, I'll add that while being in the hospital sucks, at least we get to room in, and we are definitely in better shape than alot of the kids here.

If you don't know, I'm a little bit of a bird fanatic. Not real-life birds... I think they're gross... but birds as art, and the idea of birds. Today, I found a blog that tells the story of a small miracle, whom her mother refers to as Little Bird.  http://rachaelsanko.blogspot.com/ Her blog is witty and entertaining (beware of mature language). She is an amazing mother of six children - most recently, Little Bird. This tiny miracle was born almost 14 weeks early, weighed 1 lb 13 oz, and will be at the top of my prayer list as Carter and I pray for sick babies and he giggles and coos about it. She should be at the top of yours, too!

Below are some pictures, and a video, of my sweet man during our stay in cell 792.

sleepy boy


watching tv


going for a walk


hangin out


looking at freedom


in his cell


dad & carter playing pee-pie

video


Monday, July 18, 2011

In & Out

Today we took a trip to Birmingham for urology and nephrology. First stop, 11am was a renal ultrasound. Carter flirted with the tech and it was painless. Next stop, checking in at urology 11:30am. Not sure what time we went back finally, but we got a good report from Dr Joseph - kidneys/ureters/bladder unchanged. We also scheduled Carter's surgery to start descending his testicles for November 29th. He normally does a phased approach in 2 to 3 laproscopic surgeries. Typically, they are out-patient, but because Carter has one kidney, and he has to fast for 8 hours before surgery, they will admit us the afternoon before surgery so they can make sure his electrolytes don't fluctuate from fasting. We'll more than likely stay the night after the surgery, also, to make sure he's stable. We had urology cath Carter while we were there so the lab wouldn't have to...

Next stop was the lab to get blood work done. Approximately 1:15pm. Carter was sleepy... it was nap time. And of course, as soon as he fell asleep they called us back to get stuck. The first girl made one stick.. no good. Next lady got it, but he was mad about her holding him down, and they had to draw four tubes... so there were alot of tears. He fell asleep after that and we headed to our nephrology appointment at 1:45ish. Didn't take long to get back, and Mrs Mary Jane saw us quickly. Potassium was a little low... so we're cutting our kayexalate in half. Iron a little low, so we're adding back an iron supplement - yuck! Carter was ill about being tired, hungry, and them not being able to get a blood pressure, but finally fell asleep again. She said everything looked well - he's growing great... he's in the 80th percentile for weight. And his kidney function is really good. After she checked the UA, she scared us by saying she needed to talk to the nephrologist (new guy, Dr. Feig) since it looked dirty. Since he wasn't running fever and his white cells weren't elevated, they decided to let us go home while the culture grows. They're going to test for yeast growth, which takes longer than most cultures (5 days). She said if it grows yeast that it may explain some of his past infections. Depending on the strain, we may still get to stay home and just do oral meds. Hopefully we're clear though!

We didn't make it to PT, but overall it was a good in & out visit! Once we got home, Carter got to play in the bath.... he loves it! :) Pictures to follow - stay tuned!!

Update - Mary Jane just called and let me know that Carter's definitely got a UTI brewing and yeast is already growing. They're going to let us hang out at home, though, until cultures come back as long as he's not running fever and he's eating well.

Here are some pictures of the happy boy in his bath last night :)




And from a nap Saturday :)

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 :)