I have some wonderful news! We are done in Iowa city until July 28. We still have a few random appointments here and there and we are thankful we don’t have to drive to Milwaukee, but even the trek to Iowa city was getting pretty long.
This week was crazy. I worked all day on Monday. Bright and early Tuesday morning Gannon and I were on the road by 5:30 AM to get to Iowa city by 7:30 AM.
We had our cardiology follow up appointment to gain some clarification on his echocardiogram. We really like our pediatric cardiologist. I love doctors who really love kids and it’s obvious that he really loves kids.
He explained that as Gannon’s heart is right now, it is considered normal. While he is on the very high end of normal, he is still normal. This is something that we will check every year. We have a follow up appointment scheduled for next July with an echocardiogram and then to see our cardiologist again.
Gannon does have what’s called a PFO or a patent foramen ovale which effects 25% of the population has. It is a hole between the top two chambers of the heart. This is a very normal variation and he said it’s only an issue if he ever wants to go deep-sea diving or if he becomes symptomatic.
While his arteries are on the more dilated side of things, he is still considered normal and he kept reiterating that to us. After that we got a Covid swab before our Wednesday procedure and we were on our way home.
On Wednesday, we had to be up and on the road by 6:30 AM to make it to Waterloo to be fitted for fitted for his braces for his feet and ankles. We had originally thought that the braces had to go up to his knees, but after further evaluation we think it would be best if they just went up to above his ankle to offer more stability and not take away the mobility he has.
When we got to the Waterloo orthotics office, the lights were all off in the parking lot was empty. I ended up calling the receptionist and asking if I had gotten the time wrong and she said “no, you are scheduled for 8:30 this morning in the Cedar Rapids office not the Waterloo office!”
Thankfully they were able to fit us in in the Cedar Rapids office and we were already on our way to Iowa city that day anyway.
In the meantime, Gannon has a new fun feature where he gets extremely carsick. Throughout this whole time, the drive to Waterloo, the drive to Cedar Rapids, and the drive to Iowa city Gannon had vomited and gone through three full outfits. We have no idea where this started or came from but ever since he got his first COVID swab before his motility test in Milwaukee, he has been vomiting if we drive for more than 30 minutes in the car.
Any and all suggestions on how to deal and help with car sickness is so welcome. I ended up getting him a silicone bib to wear so that it catches some of the vomit, I put together again and puke kit for the car, and I asked for Zofran for the ride home after his procedure on Wednesday which helped him keep down his food after his procedure.
Anyway, we got to Iowa city and Gannon got the Botox injections into his anus. He had to be sedated for it and everything went really well without any complications which is the first procedure or surgery that has gone perfectly as expected. We are so happy with our care at the University of Iowa.
When we got home, (after supper at my mom’s – thanks mom and thanks Karl for picking up Carver after work!) Craig and I cleaned up the house put the kids to bed and spend our evening in the pool catching up. They made oatlage this week and have been super busy so it was so nice to have alone time.
I know some of you were looking for an update on how the room sharing situation has been and I am happy to say that it was a good switch and worth tearing apart the crib for. You can read more on that in the latest post link below. Although I did come in and find this last night:
For some reason his floor looked way more comfy than his bed? I’ve got some strange little boys.
Gannon gets his braces two weeks from now, and then we have genetic testing on July 28 which we are so excited for! Tomorrow the boys both have an eye exam! Lots of appointments and things to do but getting closer to answers and the long list of appointments. Thanks for reading! I’m off to work the weekend!
- Friedman Family Update – March 2023
- ONE MORE MONTH!
- PROUD MINI VAN OWNER!
- Gannon Update – Genetics 🧬
- Friedman Fam Update – January 2023
YEA YEA and YEA! Great news and forward progress. I’m bettin’ the N/V is a stress response related to that first time. Hopefully as Gannon learns that not all long car trips are unpleasant results, it will subside?
A friend of mine’s son was under his bed every single morning when she went to check on him. It lasted over a year. Sam could never explain why but he did grow out of it (he’s 7 now).
Happy TGIF!
Glad you are finding answers! Carver sleeps like Grandpa Moo rested… on the floor. You are doing all the right things for your family.
For the car sickness, have you thought about changing his diet the day before and the day of his travels? I’m thinking about BRAT-banana, rice, applesauce, toast. Maybe pedialyte or Gatorade? Scopolamine isn’t approved for children, but a doctor could possibly prescribe it. There seems to be herbal remedies, Dramamine for kids, etc. from a google search I did on motion sickness in children. Although I’m a nurse, I’m not the expert on Gannon like you are. These are just ideas for you to investigate and discuss with his doctors. Good luck!
Maybe the floor is cooler — hot air rises, right? But I’m sure you are glad he’s sleeping, and in his own room. Floor, bed, who cares? 🙂
I’m glad you are making progress and getting answers on Gannon’s health!
We have a daughter who detests being alone. As a child, she didn’t even like going to her bedroom alone to change clothes after school. And she was really unhappy sleeping alone and, as an adult, she still is unhappy being alone at home. So, maybe that is Carver? He needs to have someone else in the room? And, if this works, then I would have them share a room until one of them, as they get older, complains? You could make one bedroom for sleeping the other bedroom the playroom with the toys? Who cares if they sleep on the bed, or on the floor. My only concern would be if he decides to wake Gannon up. But, I bet, just having another person in the room is all he needs to help him sleep. You mentioned your nightlight needs recharging… why not buy an old fashioned one that just plugs in? You can get them that come on at dark and go off in the daylight?
I don’t have a solution for car sickness, I know I’me prone to it if I don’t drive….. but he isn’t driving yet! Peppermint, is supposed to help I’m thinking maybe a oil, or food flavoring that you could put under his nose….Keep us posted. you are doing what you have to do to get him the help he needs.
At least Carver is sleeping!!! And you actually got alone awake time with Craig!!! So glad everything has been going well with the doctor appointments – finally!!! If you want to try oils for car sickness, here is a recipe from Young Living Oils: De-Gize (2-3 drops) in 1 T of coconut oil. Apply to feet, temples and wrists. You could also use peppermint oil, ginger oil, nutmeg oil or spearmint oil. They all need to be diluted in a carrier oil because of his age. I hope you find something that works!!
I had a sister that vomited every time she rode in the back seat. Something to do with her ears. I get nausea when riding on a rough road or some one bouncing on a couch. Mom always carried a lidded can to catch the messes.
Do you have a pediatric nutritionist helping you at all? They might be able to give you some insight into what could help from that point of view. I’m close to 70 and still get carsick. He’s a little too young to focus on the horizon. Probably wouldn’t keep the pressure point wrist on. Singing with my son used to help a lot to distract him. Is he sitting behind you? Can you put something in front of him that he can focus on? You have to trick the brain.