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February 8, 2021

Sam did great! We had to be there at 7am, so it was quite an early morning at our house. Sam and mama rested on the drive to Milwaukee.
The new building at Children's is super bright and spacious. It was so nice being able to have both mom and dad along. Since Sam was only being measured, it wasn't too complex of a visit. He was so excited to have a yellow bracelet for his puppy.

This was the first time they used an ET tube rather than a LMA for his intubation. He was not a fan and complained for quite a while about his sore throat. Loved his orange slushie again, and drank it so fast! He doesn't understand the vomit bags yet, but was coughing into it and making us laugh. Once he was ready to get dressed we went downstairs to the new café for lunch. He was so excited for the applesauce and saltines.
We will be back in two weeks to fit his new brace (and see which print we get) and get an X-ray to make sure it has his spine held straight.
It was so cold outside that his apple juice was also a frozen slushie when we got back to the van. He drank that pretty quickly too. We rested on the way home, but also played a bit of "I spy". Just before Fond du Lac, he was complaining that his car set clip was hurting his belly, so we stopped for gas (and a diaper change). 
Back in Oshkosh, Sam went down for nap and dad got to go to work for a few hours. 

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January/February 2021

Sam has been more and more whiny about putting his brace back on. We’ve been in contact with the nurse practitioner for about a month and a half. He had a bout of dry skin that we thought was yeast by his belly button, so he had a bit of time off from his brace. Now that he’s sharing lotion with James, he is doing much better that way.
Sam and mommy went down to Children’s Hospital on January 26 (snow storm) and got a set of new x-rays. Sam is progressing beautifully in his brace and we are going to have him fitted for a new one next week! His middle/main curve is down from 33° to 22°, and his bottom curve is at only 10°! 
Monday 2/8 we get to be at Children’s Hospital at 7 AM for the 3-D imaging in the OR. They’ve finally relaxed Covid restrictions a little so both mommy and daddy can be there! They say that his new brace should be ready in 14 days. I wonder what he will pick for his new design; he has been saying dog paws, stars, outer space, or dinosaurs again!



It's been a while!
Sam received his brace on July 21. He and daddy went down to Milwaukee to make sure it fit correctly. They did an x-ray with his brace on and he looks awesome! 

Nana made velcro braces for Sam and James' teddies. They're so cute!

Sam and mama went back down to Milwaukee on August 6 to have ventilation holes drilled into the brace. It was super hot outside, and he would get flushed and very itchy. Now, when we take off the brace, you can see dots on Sam's belly where he was protruding out of the ventilation holes!

Mama, daddy, and Sam went to see Dr Thometz on September 1. New x-rays without his brace show that Sam is doing well with the brace on, but regresses without it. The team was ecstatic & surprised with how compliant he has been for time in the brace. 

We went to The National Railroad Museum in Green Bay September 12 and the boys loved it. They missed a lot of the history and reading, but have been talking about it ever since.

Pumpkin farm activities and pumpkin picking in West Bend October 4 with Grandpa Brian and Grandma Debbie. The corn maze was long, but a hit. The goats were fun to feed, but the emu stole Sam's entire bag of feed! 

Sam grew again, so we went back to the Hanger Clinic October 19. Nana drove down with mama and Sam... it certainly was a good thing she was along because that was a record-setting blow-out that he had in his car seat. We needed to change all of his clothes, stop for Clorox Wipes, and apologize profusely to the ladies at the Hanger Clinic...she used bleach and got us new velcro. Gross! Thank goodness that's where we were headed!

Maama got a visit from mama and Sam-he behaved for errands, so we went to Culver's for a treat (that he had been begging for all day). He chose chocolate custard with M&Ms and devoured it! Passed out on the way home in his car seat from the busy day.

James' first day of 4K was August 26. We went to the pediatrician the week before school started for allergy testing, and are still trying to figure out what is making him so itchy. Currently, his diet is free of: cow's milk, wheat, gluten, sesame, coconut, and peanut. We met virtually with the new allergy doctor in Madison on September 10 and will have an in-person follow-up in November.

July 14, 2020 Pre-op

Sam has been super cute this morning. We had to arrive by 8, so we were up super early and he wasn’t hungry. He did fall asleep again on the way south. 
On the way from the parking ramp, he got to see a front loader skid steer and the driver WAVED AT US! 
The covered walkway was busy and he was saying “hi” and “good morning” to everyone. 
When they took us back the nurse Amy was awesome. She got his vitals and we met the rest of today’s care team. Someone poked their head in really early saying she could give him the pre-med goofy juice. They’re ahead of schedule! He got the color options again and stuck with yellow-how summery!
He did great with the syringe (thank goodness). We snuggled and started reading so he wouldn’t tip over. 
Only when his OR nurse came in, did we realize we were having a miscommunication on him getting a new cast as well as the 3D scanning for his brace. No one was prepared or set up for a cast.  Well this ruckus lasted probably 15 minutes between the OR nurse, Dr Thometz, Dr Liu (neuro), and the Hangar Clinic (orthotist). We had been told yesterday that the brace will take 4-5 weeks to fabricate; Dr Thometz says it will be done in a week, so NO NEW CAST!!!
Now just to wait for ...just kidding the update screen just changed to “case finishing”. Wow 💙

July 13, 2020

The day started with a Covid test. Man do I not like that thing getting shoved in my face.!?! On the plus side they gave me a free toy and it makes noise so I can annoy daddy all day long. Once we got to the parking structure daddy made me get in the stroller which lasted about enough time to get out of the parking structure. 

The construction equipment was way too interesting to be able to stay confined to that device. I was a big boy and wore my mask for about five minutes. Then daddy let me push the elevator buttons and we got to walk the whole way to the ortho department. But before our appointment I had a special surprise for daddy! POOP!!!  It got everywhere! Once we were in the ortho department Terry got to help me take my cast off he’s really cool! Once my cast was off daddy could see why this cast didn’t really make me happy. My whole side was red and itchy luckily he had the lotion and got me all squared away.

Once the cast was off we had an appointment with the orthotist at the Hanger Clinic. A really nice lady took lots of measurements and I even let her continue to use the tape measure without interruption. She says they’re going to make my brace special for me and I’ve got to choose my pattern all by myself daddy kind of helped me but the decision was mine! So cool!

Before we headed home it was time for lunch! I got to choose my own food at Culvers. Then I promptly fell asleep face first into my burger on the way home. It was a long and tiring day; after all I did walk everywhere by myself except in the parking structure where I let daddy put me back in the stroller.


Cast #2

So when we got home from Children’s that Tuesday night, we ended up putting a whole bunch of moleskin and tape onto Sam’s cast. He was having a really rough time with it and there were lots of sharp spots, even spots where the fiberglass color came past the cotton padding. 
Our postop visit was scheduled for one week later. Most nights he wouldn’t sleep through the night, and was asking us to scratch inside the cast where it was super tight-how is this supposed to last six weeks? 
The evening before our postop appointment, the nurse practitioner messaged us to let us know if Sam was fine that we didn’t need to drive to Milwaukee for the appointment. We let her know all of the issues we were having, and she apologize profusely and let us know we would see what we could do. 
At the appointment they were able to trim off some fiberglass in two key areas so that Sam doesn’t say that he has ouchies anymore, but he still not sleeping through the night, still extra clumsy, and outright uncomfortable. She let us know that sometimes you do just get a “bad cast” and that seems to be where we are. We were to message her after the long holiday weekend and let her know his progress. Some progress, but not much...
She talked to the doctor this Tuesday and they agreed that we should proceed to remove this cast and try to 3-D scan him for a brace! We will probably have a third cast while we are waiting for the brace to be made, but hopefully he won’t be so uncomfortable! The surgery scheduler called yesterday and let me know that we are on the OR calendar for next Tuesday the 14th! Hooray!


June 22-23, 2020

Monday Sam had another pre-op COVID test and we convinced the office to take his cast off for a day. 
He had over 24 hours of freedom; baths, flexibility, etc. 
Tuesday we went to Children’s to have his second cast applied. It seemed like we waited forever, it was past naptime when he got wheeled away. He did not want anything to do with the gown unless it was a cape, and he still was pounding on the door to escape. He even got a mosquito bite in the middle of his back while we were waiting!
It didn’t seem like long at all when Dr Thometz came out to tell me Sam had done great and was recovering. 
I met up with him this time in recovery instead of in post-op. He was so very sleepy. A bit of whining when he woke up this time, but nothing like last time. 
He was super excited for the slush the nurse offered instead of a popsicle. 
When his cup was empty he was raring to go. Go out the door; go color on the white board, go get dressed, go get dad. 

May 19, 2020