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.
Beep, beep, beep!
One of Harrison’s favorite books is “Little Blue Truck”. It is a really great children’s book with a good lesson. “Now I see a lot depends on a helping hand from a few good friends.” Harrison was pretty excited to take a trip with his dad to pick up a real life little blue truck.
It has been a dream of mine for a while now to have a vintage truck. Ryan found this 1964 Ford F100 on Craigslist for a great deal. Of course, the truck was a great price, mostly because it isn’t currently running. Ryan is confident he can fix the engine issues (the previous owner says it was just an issue with the clutch). He really didn’t want to get a truck that needed body work, and this one is really great.
This F100 has a long bed and a custom cab, with chrome trim. It’s beautiful. It has an 8 cylinder 292 Y-block engine with a 4 speed manual transmission. <— I don’t know what most of that means, but I’ve been told it’s important. I hope to learn more about trucks and engines as Ryan and I tackle this project together.
It is going to be a bit of an adventure to get this thing running and put back together. Ryan joked that since we didn’t have enough going on we needed a project. For now, it is safely tucked away in the garage. Once Ryan gets it running I will have to learn to drive a manual. I’m also going to need a pig, sheep, cow, horse, goat, and big green toad to help me out when I get stuck in the mud.
We have a lot of half finished projects going on around here and not much time to do them. We are big believers in watching the market for quite some time, finding a deal, and setting it aside for a bit if we have to. We have gotten great deals on cars, our camper, boat, and houses by patiently waiting for the right thing to come along. I hope we will have an update on this beauty soon though, because I can’t wait to take it for a ride. Thanks for reading and check back soon!
My garden is looking promising, even with our short growing season and the excessive rain we have gotten this year. I see buds or flowers on almost every plant and I’m really excited to see what kind of yield I can get!
Everything has sprouted, except the rhubarb. I’m not sure why, but the rhubarb just never came up. Today I weeded it and turned the soil. I planted some green beans in the 4×4 box so it didn’t seem like a waste. There is still plenty of time, so I think the beans will do well.
I had 3 leftover tomato plants that I put in near the cucumbers and they are doing amazing. The tomatoes I planted in the pots are drowning from all of the rain. They just don’t have enough drainage and we got over 10″ of rain in June, 4″ came all at once! Just last night we got another inch of rain. I have not watered the garden since I first planted it.
The pumpkins and zucchini are growing rapidly and I have high hopes for them. Last year something ate most of the buds off of the zucchini, so I’m hoping we have better luck this year with a better fence.
I also have sweet peppers, broccoli, carrots, herbs, and asparagus that are all doing well. I must say, I’m pretty proud! I even picked my first green pepper today. I’ve been feeling very lucky to have this distraction to keep me extra busy. Last night we had a beautiful rainbow after the rain. What a beautiful property we have!
More updates to come soon! Thanks for reading!
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.
I have been busy, busy getting our garden put in this year and I am excited to share with you! Our first summer in this house (2015) I had a 4’x4′ raised bed garden and some tomato plants in pots on the deck. Last year, I doubled my garden bed space by adding 2 4’x2′ garden beds. Needless to say, we didn’t have all that much success with that small amount of space.
This year I decided to step it up and put in my “forever garden.” I added 2 large raised beds. One is 27’x3′ split into 4 sections. The other is 13’x4′ split into 2 sections. We went from a total of 32 square feet to 165 square feet! We also added an 8’x8′ green house and have several pots of tomatoes and herbs. It is still a work on progress, but I am happy with how far it has come.
We have planted green beans, zucchini, pumpkins, sweet peppers, green peppers, carrots, cucumbers, broccoli, rhubarb, asparagus, tomatoes, chives, basil, oregano, dill, marjoram, and parsley.
So what’s next? I bought a great metal arbor and a really cool bamboo gate that will be installed soon. I am also planning on laying down landscape fabric and mulch between the boxes. The greenhouse will eventually get a brick floor and some built in shelves. It may take a while to finish the project list, but everything is functional as it is and our plants are doing great so far.
Over the last 48 hours we have received almost 5 inches of rain. We were lucky to not have any storm damage and the garden seems to be loving the extra water. I am excited to see what the garden will yield this year. I am definitely not a professional, but I learn a little more each year. If nothing else, it sure is pretty and Harrison loves it! He is becoming a little gardener and even has his own wildflower garden.
We have a busy summer, but we love our little homestead so much. We love to see the apple trees and blackberry bushes blooming with flowers. We love collecting the eggs every day, especially the beautiful blue ones! The roses and wildflowers are blooming. We are really, really lucky to raise our boys here. I wouldn’t have it any other way.
People often ask us how many animals we have, so I thought I would do a little update of our creatures.
I will start with our most beloved animals, our blue heeler mixes, also called Australian cattle dogs. We have 2 and both are adopted from shelters. Sadie is estimated to be about 7-8 years old, but her age was unknown when we adopted her. She is a sweet dog with some quirks. She hates wheels and is very attached to Ryan. Sadie also sticks pretty close to Micah’s side but has never taken much interest in Harrison.
Kelty is our rambunctious dog. She is sweet but full of energy and likes to bark. We adopted her as a puppy in June 2012. We try to discourage our dogs from barking, but they protect their flock in the backyard, so I can’t complain too much.
We currently have 18 egg laying chickens and a rooster. We do lose a few chickens every year to predators. It is sad every time we have a loss but it is the cost of letting the chickens live a free-range life. We could keep them safer in their run, but they really love digging up treats from the forest floor. We have had issues with coyotes, fox, and bear (more on that later). Our biggest predator prevention is allowing our dogs outside for most of the day. Every spring we get more chicks to replace any loss we predict for the summer. We currently have 6 more chicks in the brooder, bringing our total to 25.
We have 7 ducks. 6 are females that lay eggs nearly every day. The ducks nest on the floor of the chicken coop. They love swimming in their pool (when it is above freezing). Ducks are messy with water and have added a little bit of adventure to our homestead. We originally had 15 ducks, but we butchered the males. Our ducks are 2 years old.
We also currently have meat chickens. We had a tragic run in with a bear that killed several of them before we were able to get rid of it. The bear ripped the locked door open on our garage and helped himself to the birds (which were about 2 weeks old at the time). We assume this is the same bear that killed our turkeys last year when it climbed on top of and collapsed our tractor coop. The bear will not be returning… Anyways, we currently have about 35 chickens left. The remaining birds are doing well and gaining weight like crazy. We will put them outside next week with an electric fence.
Every spring we talk about getting a few milking goats. We won’t be getting them anytime soon, but I guarantee they will be part of our homestead in the future. I would also love a cat, but Ryan is allergic so it would have to be a barn cat. That means we need a barn…..Ryan?… I mean, the kids will love it.
We raised turkeys last year. The bear got our first batch, but we did successfully grow a second batch. We ground most of the meat and it is delicious. We will grow turkeys again in the future, but they take a bit more work than the chickens and we wanted to have more time to travel this summer. Between the chickens, fresh eggs, my garden, and our fruit trees we should have plenty to put in the freezer for the next year. I’ll be sure to update throughout the summer. Thanks for reading!
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!