I've been working on my bucket list, so this week Josh and I watched Casablanca and Ben Hur. Casablanca was great and Ben Hur was LONG! Don't get me wrong, Ben Hur was also great too, but I wouldn't watch it again 🙂
Monday, January 23rd:
Theo was very excited when we sent him off to school on the bus. He's such a funny kid! He loves school, naps, and baths!
After I finished my workout I headed to the dermatologist office. I had an appointment with Tricia, so she could check and see how I was doing on my hair growth journey. She checked my head and noticed that I had a lot of new, fine baby hairs! She told me to keep up with the meds and the serum and I need to be careful with the new hair growth. She told me to be careful with headbands, hair ties, and straighteners 😬 She then told me that she can renew my prescription, but I need to get bloodwork again. No problem! After talking to Tricia I had a microdermabrasion and facial with the esthetician. It was fantastic! As I was heading out I ran into one of Theo's therapist! She was there for a facial too!
Today Splash Mountain closed at Disney World and people started selling water from the ride on eBay. I saw mason jars full of water selling for (well, asking for...) $100 a pop! I saw this post and thought it was funny:
Seriously people, don't buy water from people on eBay.
After school I took Theo to PT. He was very tired, but still tried hard!
We then sent Theo off to school on the bus. After I finished working out in the basement Josh went down there to install our new home humidifier. I am so excited for a humidifier! It is too dry in the winter time. My hands are cracking and Theo's lips are very dry (we put chapstick on him all the time!). I hope the humidifier helps.
[New guy on the Lakers!]
Theo had another great day at school. He's learned to sleep on the bus, so I think that helps him stay awake more at school. After school I took him to OT. Theo was so excited to see Ms. Laura and swing on the big swing!
[Theo's old pom-pom was falling apart, so I got him a new one. He's not too sure about it.]
Theo had four observable seizures today.
Wednesday morning we woke up to a few inches of snow! It was fluffy and so pretty!
It was a half day at school and they were supposed to go on a field trip to the library, but it got cancelled. Bummer. Theo got home around 12:30 PM, so he had plenty of time to take a nap before Feeding/Speech therapy and our Zoom with his Dietitian, Ms. Jeannine. Theo only gained 0.4 lbs over the last two weeks, so it looks like his diet is working!
Right before bed we changed Theo's g-tube. He went from a 12 fringe by 2.5 cm to a 14 fringe by 3.0 cm. We've changed his g-tube plenty of times before, but we've never gone up in fringe size. Dr. Robertson told us to try the 14 fringe and if we couldn't get it in put the 12 fringe back in and give him a call. He said that sometimes he needs to stretch the stoma a bit when the kids upgrade to a larger size. Josh distracted Theo while I took out the 12 fringe g-tube and put the new one in. It was a little tougher than usual, but I got it in. Theo was a bit upset, but Josh was able to calmed him down and get him to bed. Phew! I'm glad it worked out and we don't have to go all the way to Peoria to get Theo's stoma stretched.
That night Josh and I started watching Ben Hur. The movie is 3 hours and 45 minutes, so we figured it would be best to break it up over multiple nights.
Theo had five observable seizures today.
Thursday, January 26th:
As I was putting Theo on the bus I told him I would see him at school in a few hours. I don't think he understood me, but I didn't want him to be surprised when I showed up in his classroom. His aid and the nurse were both out today, so I needed to go to the school to feed Theo his lunch. Theo was pretty shocked when he saw me! He waved and then kicked his foot ("go, go"), but I told him I was there just to give him his lunch and it wasn't time to go home. He was pretty sad about that, but then his teacher started singing a song about the seasons and he got distracted. While I was at the school I ran into Theo's PT. We chatted about Theo and what they had been working on. She showed me his new stander. It's similar to the gazelle he has at home, which is super nice and supportive.
While I was at the school, Josh finished installing the humidifier!
After school I took Theo to OT.
Theo had four observable seizures today.
Friday, January 27th, was a pretty busy day for me. After Theo went to school I did my strength training workout, drove to the lab to get my blood drawn, headed to the allergist to get my shots, and then drove up to Crumbl to get their chocolate satin pie cookie! It was delicious! As I was driving home it started snowing. At first it wasn't too bad, but then it started sticking to the roads and people were sliding out. Luckily, the van is over 6000 lbs (due to the modifications), so it did very well in the snow.
It kept snowing after I got home and Josh was nervous about me going to pick up Theo and take him to PT, so he came with me. It was warming up and, thankfully, the roads were pretty clear. We made it to PT without any issues.
Ms. Cody said that Theo was very alert and in a good mood during all of PT. He was even laughing and being "super strong" while working on standing.
Theo had four observable seizures today.
We stayed inside over the weekend (we don't go out much anyways) due to the weather. It snowed on and off all day on Saturday and Sunday.
My little sleepy boy. Playing his drums with his eyes closed.
Theo had one observable seizure on Saturday and Sunday and he took two naps on both days!
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