Micah was seen at the UW hospital yesterday for a bladder dynamics study. The test (called a CMG for short) measured the pressure in the bladder as well as bladder capacity and muscle use. We discovered a couple of things from this test, with mostly positive results. The test itself went well and took about 2 hours. Micah was lightly sedated and likely won’t remember it. Child life brought toys and books to keep him occupied. Keep in mind that I am not a doctor and this is my understanding of the results, which may not be perfect.
The urologist was trying to find out whether Micah has a spinal or brain disorder that prevents him from being able to empty his bladder. He has all of the symptoms of a neuroligical issue called a neurogenic bladder (similar to the bladder issues found in children with spina bifida or other spinal injuries). He has a large bladder capacity but doesn’t fully empty it. On his last x-ray study it looked as though he had high bladder pressures and a thick bladder wall, leading the doctors to believe he couldn’t feel how full his bladder is.
The CMG found that it does seem as though he can’t feel how full his bladder is. A typical 16 month old will fill his bladder completely with 80-100ml. Micah’s bladder took 180ml each time, about double what a normal bladder would hold. The good news though, is that once it is full enough to be uncomfortable in his abdomen he has the ability to use the muscles to partially empty the bladder. That would not be the result if he had a neurological issue.
The urologist believes Micah has Hinman’s syndrome. The other name is non-neurogenic neurogenic bladder. Clear as mud, huh? Simply put, Micah has bladder dysfunction for an unexplained, non-neurologic reason. It is likely just a developmental mishap which also affected his ureters and kidneys early on during pregnancy. This diagnosis is better than a neurological disorder because there is hope that he will be able to train his bladder to empty. He has muscle control to some extent and we hope to teach him how to use those muscles once he is old enough to understand potty training.
In the meantime, we will do our best to keep Micah healthy and free of UTIs. If he begins to get UTIs or further kidney damage he will need catheters several times a day to help him empty his bladder, with the hopes that he will eventually gain the ability to control urination without a catheter. Once he has control over bladder pressure, he will be able to have the surgery on his ureters to fix the reflux issue. This will likely be done around age 5, or whenever he is fully potty trained.
While we are relatively happy with the conclusions of the test, we are still concerned about his kidney function and size. The issues Micah has in his urinary tract were probably caused by the same early developmental mishap, which leads us to the Hinman Syndrome diagnosis. On the positive side, the urologist thinks this was more likely a developmental mishap than an inherited gene. She does not believe we should have to worry about Harrison or any future children’s urinary tracts with this diagnosis, but we will stay on the lookout for any alarming signs.
We are finally at a point where we can stop searching for a diagnosis. Micah has hypoplastic kidneys with VUR and bladder dysfunction. He has a diagnosis and treatment plan. He will only have to undergo routine ultrasounds and blood tests to check kidney function every 6 months without any other major testing. He can stay off of the antibiotics and avoid catheters unless he starts to get UTIs. He will have surgery around age 5 to further prevent kidney infections.
I know sometimes the terminology becomes overwhelming if you aren’t dealing with this issue yourself, so if any part of this seems confusing I would be happy to answer any questions to the best of my ability. This has been quite the journey, but Micah is mostly just a happy kiddo.
I have a major love affair with Instagram. I love choosing a photo every day or two to show off what we have been up to. As a bonus, it is hooked up to Facebook, so the pictures can be seen on Scott Family Homestead there too. I know not everyone has Instagram, so I thought I would do a little recap of what July had in store for us.
We started out the month with a week of 4th of July celebrations. We went to the fireworks and 2 parades. The kids are at a great age for holiday celebrations and they had a blast. We went up north to Michigan and enjoyed great weather at the lake.
The chickens and ducks have been laying eggs like crazy. They have been happy and healthy. Hoping not to jinx things…we haven’t had any predator issues since the bear in the spring. We have had some deer in the yard, but they have stayed out of the garden, so I’m happy.
The garden has been such an adventure this summer. Ryan has been super helpful with weeding and watering. We have had some great successes and some failures, but we are learning a lot. The zucchini, cucumbers, green beans, and tomatoes have been a major success. The carrots, pumpkins, and broccoli need a little more time, but they look great too.
One of the most exciting events of July was purchasing our Little Blue Truck. It has been a good project for Ryan and I can happily say it is up and running. The kids love it and have been “helping” dad work on it.
This spring we made a promise that we would really enjoy this summer with the kids and pack it with as much fun as possible, but also time at home. We don’t often spend weekends at home, but we wanted to enjoy it this summer. We live where everyone else comes for vacation and we have enjoyed going to town and doing the tourist things that everyone else enjoys. It has been a great summer so far and I am looking forward to what August has in store!
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Today we met with a great pediatric urologist who has been studying Micah’s case. We learned a couple of things and have a plan for another test, date to be determined. *As a reminder, I am not a doctor and I am only trying to convey the information as we received it and try my best not to pass on misinformation.*
First, the good news! After turning 1, the chance of UTI in boys with kidney reflux goes down considerably. This means as long as we closely monitor Micah for signs and symptoms of UTI, we can take him off of the antibiotics!! This is such great news for our little boy who gets very sick from those medications.
Now, there are 2 possible issues we are worried about. The first is primary reflux. This means the problem could be VUR alone. That would be solved by ureter reimpimplantation surgery. While the reflux should not get worse over time, it may be possible that the first VCUG (a test with a series of xrays with contrast in the bladder) when Micah was 1 day old didn’t show the extent of reflux on both sides. It did show very clearly that there was no urethral blockage, so that has been ruled out.
Surgery can not be done before ruling out a neurological disorder that keeps the bladder from emptying. This would explain why the problem appears to have gotten worse with time. This would also explain why his very first and most persistent symptom has been an enlarged bladder. There may be a syndrome associated with that issue, or it may just be a dysfunctional bladder on its own. While this issue would be a long term problem, most problematic around potty training, it may allow Micah to outgrow the reflux once he learns to control his bladder on a schedule. While we would never wish for a neurological or spinal problem, the idea of avoiding a major surgery that could lead to more complications does have it’s advantages. If it is determined to be a neurogenic bladder, tests will be done to rule out spinal issues and the reflux will be closely monitored until potty training age. If the reflux does not improve by age 4 or so, reimplantation surgery may be required.
The next step is a test that measures pressure in the bladder as fluid is added (a cystometrograms or CMG). It will measure bladder size, pressure, and flow rate. If the bladder does not empty at the appropriate pressure, it is likely a neurogenic bladder. The test is similar to a VCUG. Micah will be lightly sedated and the test takes about an hour. The test will be done in Madison at the UW Children’s Hospital, but it has not been scheduled yet. Sometimes it can be months to get on the schedule, but we should know more next week.
The kidney size and function is something that was determined during development and won’t be changed through surgery or time. It will be what it will be, and we just have to do our best to protect his kidneys as they are. It is disappointing that we can’t do anything as a quick fix, but taking Micah off of the antibiotics should at least make his day to day better.
Thank you to everyone who is keeping Micah in their thoughts and prayers. We are doing our best to stay positive and the support is very comforting.
Our sweet boy had a rough day today. The results of Micah’s tests were not what we had hoped for. The issues to this point were in the left side of his urinary tract only. This scan showed severe reflux, a large ureter, and a smaller than normal kidney on both sides.
We can not schedule a corrective surgery without ruling out bladder disorders or blockages since it is now a problem on both sides. We also need to have a better idea of kidney function, so new blood and urine tests are being run. The hospital is having a radiology clinic tonight with radiologists, nephrologists, and urologists that will review Micah’s history and scans to better treat him.
We will be seeing a urologist in 2 weeks to rule out other disorders or blockages. Other than waiting on more test results we don’t have much else to report. Please keep Micah in your thoughts as we continue on this journey.
Micah, our 14 month old, has an important nephrology appointment coming up next week and I wanted to do a little update on him. As some of you know, Micah was born with some urinary tract issues.
During pregnancy the doctors noticed that he had a large bladder that never seemed to empty and hydronephrosis (fluid in the kidneys). When he was just 1 day old, Micah had an ultrasound and a VCUG. The VCUG is a series of x-rays taken while a catheter is inserted with contrast fluid. The contrast shows the flow of urine and fills the urinary tract structures in order to see their shape and size better. We learned several things from this test.
- Micah has reflux (VUR) from his bladder to both kidneys, much more severe on the left side (Grade 5). When his bladder fills up it also fills his kidneys and ureters (the tubes that go from bladder to kidney) with a back flow of urine . This makes him at greater risk for infection. Micah has been on antibiotics since birth for this and will continue until we can surgically correct the reflux. If Micah were to get an infection it would damage his kidney significantly.
- Micah’s left ureter should look like a small straight tube, but instead looks more like intestines. It is thick, long, and meandering. They call this a torturous ureter.
- Micah has renal dysplasia on the left side. His left kidney is small, has a cyst, and has some limit to it’s function. Renal dysplasia makes Micah at greater risk for high blood pressure, so we monitor that at every appointment.
It was determined that nothing could be done while he was so small. Micah was seen again at 6 months and had an ultrasound and blood panel taken. He had some signs in his blood of kidney malfunction. His creatinine was higher than normal and his CO2 was low. This along with other factors shows some decreased function from “normal”. The kidney did grow some between birth and his appointment around 6 months and we are hopeful it has continued to grow. The scan at 6 months also showed a cyst on it that did not appear at birth, although that is not significant on it’s own and can be fairly common (but more so with age). A cyst IN the kidney would be more of an issue.
We have been playing the waiting game for a while and he is finally getting to the age we can move forward with treatment. We did a new blood draw a couple weeks ago and were sorry to see the createnine and CO2 numbers as well as some other indicators for kidney function have gotten slightly worse. This could indicate kidney failure on the left side or the growth of the left kidney may have slowed or stopped.
Next week Micah will have an ultrasound and another VCUG. The VCUG will tell us a lot, especially since he hasn’t had one since birth. We will see if he has grown into the extra large ureter at all, we will see if his kidney is growing, and we should be able to see if the reflux on the right side has resolved.
Grade 5 VUR is the most severe and requires surgery. We are hopeful that Micah can have his surgery sooner than later so that he can be taken off of the antibiotics. The surgery will entail re-positioning where his ureter enters the bladder and tapering it so fluid can not back up so easy. He may also need the upper part of his ureter tapered where it meets the kidney. We are hopeful that his kidney is still functioning enough to not need it removed, but the tests will tell us more.
Once surgery is complete, he will remain on antibiotics for 3 months and until another set of tests are done. This is unfortunate because Micah gets sick from his antibiotics and we have been fighting acid reflux and vomiting since he was born. He still doesn’t sleep through the night, but he has gotten better since we switched his antibiotic to the morning rather than bedtime. We might be able to try a different antibiotic after seeing the nephrologist.
We are looking forward to having a healthy baby boy and putting this behind us. Please keep Micah in your thoughts and prayers over the next week and I will update when we have more information.
First of all, I want to send a big thank you to everyone who attended our Lumberjack brunch! I love throwing birthday parties for my kids. Getting everyone together and celebrating the two best things that have ever happened to me sounds just about perfect. Besides, I’m a bit of a Pinterest addict and love to fill my evenings with projects when I have the time. While this party wasn’t exactly Pinterest worthy, I would love to share some of the fun things we had.
Lucky for us, Hobby Lobby has a whole section of lumberjack party supplies. If you know Ryan and I, you will understand that we are kind of lumberjack people. I majored in Forestry, we live in the country, plaid is a staple in our wardrobes, and Ryan has the lumberjack beard. We pretty much didn’t have any choice but to have a big ol’ brunch with plaid on every surface. I still had some birch disks and lanterns from our wedding center pieces, and they fit right in.
I made some simple envelop pillow covers in some “Bearly Beaver” fabrics I found on Fabric.com. Micah has some cloth diapers made in this fabric and it was too cute not to use it at the party. I have a bunch of mismatched pillows that I’ve been meaning to made seasonal covers for and I think these will look great in the fall/winter next year. You can see them in our family picture.
I made a progression banner of Micah’s monthly pictures, which hung above our drink station (complete with paper birch straws from Amazon). All it took was a little bit of card stock, pictures, and some plaid ribbon.
We had all of the good brunch foods, including pancakes, french toast, farm fresh eggs, bacon, sausage, homemade maple syrup, fruit, juice, coffee, mimosas, and beer. What could be better? We bought some great red chaffing dishes from Party City that fit the theme perfectly and labeled the food with some plaid card stock.
Oh, and several posts on Pinterest got me interested in s’more mix, a tasty treat of marshmallows, chocolate chips, and golden grahams. I highly recommend it.
Like I mentioned before, Hobby Lobby had an assortment of lumberjack decorations and party supplies.
We finished the day with a lumberjack cake and some cupcakes with ax toppers, also from Hobby Lobby.
The boys had a great time and I hope our guests did too! Ryan and I enjoyed having everyone here. Now we have to think up a theme for next year! As any parent knows, the months go by fast and it will be here before we know it. As always, thanks for reading and check back soon for more fun!
Our smiley boy is already 1 year old! Sometimes it seems like he was just born yesterday and other times it seems so long (especially when I think of how many times I’ve seen 3 a.m. this year). Micah is learning and growing every day. This month was a big one for him. He took his first steps, got his first haircut, and celebrated his first birthday.
Micah weighs 23 lbs and measures 30.5 inches. In the last year he grew 14 lbs and 8 inches! He is right at the 75th percentile for all of his measurements.
Micah is such a daredevil. He loves to climb anything and gets especially excited if he sees the baby gate is open to the stairs. With supervision he can easily climb all the way up. Micah loves Harrison’s toys (which we are still learning to share). He has really started to like books, which makes me very happy. He also loves music more than I thought a 1 year old ever could. He has a hard time getting anything done in a day because he has to stop what he is doing every time he hears music, which is a lot in our house. He loves to dance.
Micah is a terrible sleeper and loves to nurse. He still wakes up to eat and I can’t quite get him to quit, but we are working on it. I am happy to say I have been breastfeeding for 30 of the last 35 months, but I’m ready to be done whenever he is. I think we have quite the journey ahead of us though, because he is still nursing about 7 times a day. He also eats 3 solid meals a day. It’s no surprise why he’s in the 75th percentile!
Every time I talk about my kids being close in age the first question I get is “How do they get along?” I am pleasantly surprised that these boys love each other so much. Harrison loves being a big brother. They fight over toys but Harrison is starting to be more understanding, We are very blessed having such a laid back kid for our first.
Our baby has come so far in the past year and we are so excited about what the next year will bring! Happy birthday Micah!
Since your baby only turns 1 once, you might as well go big! We did a cake smash for Harrison’s first birthday as well and it’s just so much fun. We had to do Micah’s cake indoors, which was a big mess but completely worth it! Get ready for picture overload!
We decided on a lumberjack party theme when we got this Best Bottom diaper cover in burly beaver plaid. It is one of my all time favorites and the fabric is available on Fabric.com, which we used for our backdrop. We bought the wall hangings from Hobby Lobby and the lantern is from Amazon.
I made a cake shaped like a bear using a round cake and 2 cupcakes. I bought 2 different frosting colors, which turned out to look the same, so it wasn’t quite what I was going for. Since it was cute and about to get smashed to bits, I didn’t worry too much.
Both kids gave us the same look when we set them up for their cake smash. (This devious look combined with “Can I actually eat this?”)
Micah started out slow and got a good taste. Turns out, he’s a big fan of cake.
He didn’t eat much cake before he decided it would be fun to see how much he could get on the walls and ceiling.
The mess was totally worth it. About 3/4 of the pictures were blurry because Micah is a mover. He is very different than Harrison in that way. While Harrison takes his time with things, Micah is all over the place.
He ended up with a pretty epic lumberjack beard.
I’m not a professional cake decorator or photographer, but these moments will be some of my best memories with the kids. I can’t believe Micah will be 1 next week. It is incredible how much kids change in that first year. Micah, you will always be my baby. Happy birthday!
We were very lucky to score a great deal at a Disney Resort for the end of January/beginning of February. The All Star Music resort ended up being less than $90 per night and the kids are still both free at the parks since they are under 3. With a deal like that, we couldn’t pass up the chance to relax and enjoy the nice Florida weather while it was snowy and freezing at home. We were lucky enough to get such a great deal that my parents came with too.
How did we get such a great deal? I checked their website a couple of times each week and priced out every week for the next couple of months to see if there was a deal. For whatever reason, each day the prices seem to change for each week at each resort. We had an “up to 30% off” code for returning guests, but you can often get an “up to 25% off” or free dining plan code if you wait until the right time to book. Sometimes it takes a bit of patience and the ability to travel within the next few weeks to get the best deals. Keep in mind that the best rates are during the week, so if you travel Sunday – Friday you will get the best rates.
We have been to Disney many times and have even stayed at Disney resorts a handful of times. We really love the value resorts because they seem to be much more geared towards kids than the moderate resort we have stayed at (Coronado Springs). The rooms are cheaper, and so are the dining options. We have stayed at All Star Music and Pop Century and I would recommend both.
We had nonstop flights from Milwaukee to Orlando and back. The kids did remarkably well. Harrison got his own seat and Micah snuggled up with us. The trip back was definitely harder, but the car ride was the worst part. Harrison had a backpack of entertainment and Micah was mostly entertained by snacks.
Once we arrived, we used Disney’s Magical Express for transportation. This service is nice because you don’t need to get a rental car, and they deliver your luggage right to your room. As long as you plan on staying within the resorts and parks I recommend this service.
We had 4 days of park hopper tickets. We spent the first morning (Monday) at Animal Kingdom and then hopped over to Magic Kingdom. The next day we spent at Epcot. Wednesday we were at Magic Kingdom all day and stayed until the fireworks. We relaxed and spent some time at Disney Springs on Thursday, and we finished out the trip at Hollywood Studios on Friday. We booked our fast passes as soon as we booked our room, so we were able to do most of the rides we wanted to. The last 2 times I was at Disney I was pregnant, so it was nice to finally have a chance to do some of the roller coasters.
Micah slept so much during the day. We took pictures with him all over the parks sleeping in his carrier. It made the day easy and he was happy whenever he was awake! Harrison also took naps in his toddler Tula baby carrier.
Harrison LOVED meeting the characters. He watches Mickey Mouse Clubhouse and Winnie the Pooh at home, so those were really big hits. We did a Character Lunch at Magic Kingdom where the characters from Winnie the Pooh come right to the table (Crystal Palace). We really enjoyed it, but it was the most expensive part of the trip.
We brought a sit and stand stroller, which was a life saver. Both kids loved it and we had a lot of storage space for everything the kids needed. We brought a lot of food and snacks with us to save money, which was also a big help.
Harrison asks us every single day if we can go back to Disney, so I’m sure there will be more trips in our future. It is such a great family vacation and the kids love the magic of it all (Harrison especially). As Micah gets older I’m sure he will love it too.
I would be happy to answer any questions about our trip! We aren’t exactly experts, but we really do love Disney. As always, thanks for reading!
If you follow along on Instagram or Facebook, you already know that we recently made a trip to Chicago for MommyCon/Wear, a natural parenting conference with extra emphasis on babywearing. This was the second MommyCon we have attended and we already have our tickets purchased for next year, because we love it so much. We love everything about it, including the vendors, talks, giveaways, and support from other parents. They have several shows around the US throughout the year and we definitely recommend it to any parents looking for natural parenting ideas.
We started the weekend at the Wear Party, hosted by Abby’s Lane. Our boys loved seeing and playing with other kids, while Ryan and I socialized and filled up on yummy appetizers. The theme of the party was “Keep Doing What you Love” and several amazing women spoke about getting their businesses started and maintaining it all while raising a family. Ryan won an awesome Smartbottoms potty training set for Harrison, including 2 trainers, a seat saver, and key chain. We are very appreciative to Abby’s Lane and Smartbottoms for this giveaway and we can’t wait to try them out.
Everyone who attends gets a gift bag of freebies and coupons from vendors. There are several giveaways at the parties and in the vendor hall. We did not have tickets to the Tula or Cottonbabies parties, but we heard they were great too. Tula Baby announced their newest product, the Free to Grow carrier that can be used from birth to toddler without an insert. We are sad we missed the party and reveal!
My favorite part of the conference is getting a chance to meet and speak with vendors. There is something to be said about getting hands on with products before purchasing them, and the discounts were nice too! I finally got a few things I have been really excited about and have a few more added to my wish list.
MommyCon also offers information sessions that focus on natural parenting concepts (cloth diapering, babywearing, breastfeeding, labor and birth, etc.) I attended a sleep consultation and sessions on crying prevention, car seat safety, and growing your passion into your profession. Ryan attended those talks and a session about being the support in a breastfeeding relationship. There are a lot of sessions geared just towards dads. Each room is set up with a toy box of goodies for the kids to play with so parents can enjoy the talks. The entire schedule is available online if you are curious about what else MommyCon has to offer.