It's August!

Monday, July 31st:

Josh went to work and I took Theo to PT at the clinic. He's been getting stronger and stronger and works harder at PT if there is a friend there for him to observe. He loves to see other kids playing!

Tuesday, August 1st:

It's August and school starts in 17 days! Woot!

Today I took Theo with me to get my allergy shots. He seemed a little nervous, but once he realized the shots weren't for him he calmed down a bit. The nurses thought he was soooo cute!

That afternoon we went to Ms. Becca's house for PT!

Theo didn't need any time to warm up. The moment he was in the water he was splashing and being extra silly!

He worked so hard that he took a 90 minute nap after we got home! 

Wednesday, August 2nd:

Today I took Theo to OT and then we had feeding therapy with Ms. Jen. We've been working daily on taking big bites of food and Theo has been doing really well. 

[Laying on his right side]

Thursday, August 3rd:

Errand day! Ms Jess came over to hang out with Theo while I ran some errands. Theo had fun with Ms Jess and they even had a snack!

After errands I took Theo to OT. He had a great time with Ms. Laura!

Friday, August 4th:

Theo didn't have any therapy today, so we just hung out at home and worked on his long list of activities. He even had TWO snacks today!

Weekend:

Josh worked on Saturday, but he was home on Sunday which was nice. We worked on plans for the bathroom renovation and we started talking about what we wanted to do in the backyard. Do we get a swim spa? Do we put in a deck? Do we add a gazebo?! I guess we should wait and see how much the bathroom is going to cost first before we start making crazy plans for the rest of the house.

Theo is still only having 3-5 observable seizures a day 🙂

Hydra Facial (Treat Yo Self) and More PT Swimming

Monday, July 24th:

Josh headed off to work while Theo and I hung out at home. We went through his long list of exercises and went to PT that afternoon. Theo worked hard and is getting better and better at weight bearing through his legs.

Tuesday, July 25th:

After Josh went to work Ms. Jess came over to babysit Theo. I went to the dermatologist office and got an amazing hydra facial before meeting with the dermatologist to talk about my hair growth. The hydra facial was really cool and I'll definitely be getting another one in the winter when my skin dries out.

That afternoon we went to Ms Becca's house for some PT in the pool. It took Theo a long time to get comfortable in the pool, but this time he was ready to party immediately! He was kicking both legs, splashing with both hands, and squealing joyously! 

I wish I was back in CA so I could attend this game!

AND in other LA news:

YAY! We love Herbert! 

Wednesday, July 26th:

Josh headed off to work while Theo and I hung out until it was time to go to OT. He was extra silly at OT and even made a new friend.

After OT we came home and got ready for feeding/speech therapy with Ms Jen and our Zoom with our dietitian, Ms Jeannine. 

I made chocolate pudding (with almond milk) and mixed it with coconut cool whip to make it fluffy. I would ask Theo if he wanted another bite and he would snap his mouth closed. We noticed that once the food was in Theo's mouth he didn't spit it out. He would actually chew and swallow. Ms. Jen suggested that I don't ask Theo if he wanted another bite and instead I just tell him it's time for another bite. That worked! He opened his mouth slightly and took a little bite! Progress!

We got some new plants for the house:

I love them all!

Thursday, July 27th:

Ms Jess came over again to hang out with Theo while I ran some errands. While I was out and about I got a few pictures and videos from Ms. Jess. I knew they would have a great time!

After I got home I took Theo to OT, so he could play with Ms. Laura. At the end of the lesson I was talking to one of the other therapist about how much Theo loves the pool. I showed her the video and I'm pretty sure Theo was listening. Ms. Laura and Theo were on the swing and she asked him if he wanted "more" or if he was "all done" (he ALWAYS signs "more"), but he kept signing "all done." He was very excited to leave which was strange because he usually gets upset when we leave. On the drive home I told him we were going home to play. He got really upset and started crying! I think he thought I was taking him swimming! Oh sweet boy!

Ohtani did an amazing thing today:

Friday, July 28th:

Theo and I had a nice long day at home. We did all of his exercises and then watched Star Wars Rebels. Theo LOVES that show!

That night I went and saw Haunted Mansion. I really liked it!

On my way home I could see a pretty intense thunderstorm rolling in from the northwest. I made it home before the rain started but the storm was so loud and bright that I had a hard time sleeping!

Weekend:

Josh worked on Saturday and we just hung out around the house on Sunday. Not too much to report there!

Theo's strength is continuing to come back and he is army crawling all over the place! He is still irritable and will cry randomly, but I'm hoping that is a side effect from the Clobazam wean.

Swimming PT & Brodee Stars School

Monday, July 17th:

Theo had two therapy appointments today: OT in the morning and PT in the afternoon. He did great at both appointments!

Tuesday, July 18th:

Today I listened into the Master HOA meeting for our properties in Orlando. It went pretty long, but it's good to know what's going on at the resort.

While I was on my Zoom a local contractor stopped by to look at our bathroom. Josh showed her around and told her what we were looking to have done. She said she would get back to us later this week with a quote.

I put Theo in his KidWalk today and he did great! He hasn't been in the KidWalk since last autumn since he's been so weak, but he was able to stand for 15 minutes today. He was so proud of himself! My super strong boy!

Theo went in his swing after working hard in the KidWalk.

I was able to watch the Tour from the couch while Theo enjoyed his swing! 😬

We've been pretty mild here so far, but it's hot around the rest of the world. It's the hottest month on record!

Wednesday, July 19th:

I took Theo to Ms Becca's house so they could have swimming PT today! Ms Cody came too and Theo had so much fun! He thought it was hilarious to splash them and he was really proud when he was walking around in the shallow end.

["Walking"]

Theo was laughing pretty hard when Ms Becca was making him go super fast! He kept signing "more more!"

I think we need to invest in an Arctic Spa for our backyard! Theo would love it!

Thursday, July 21st:

On Thursday's I run errands! Ms Jess came over to play with Theo so I could get out of the house for a few hours. I was able to stop by Walmart and Target and pickup all of Theo's school supplies. He's going to be in first grade!

[Sitting up and being super strong for Ms Jess]

Brodee and Sara moved from Fort Stockton, TX to Kingman, AZ. Along with most of Arizona, Kingman started school today. I'm sure Brodee will have a great year as a 7th grader!

Friday, July 21st:

Theo's day started a little rough. He was really sad and I couldn't figure out what he wanted. I gave him toys, changed his music, a tried to play a few games, but he was still really upset. Finally I put on Wheel of Fortune and he perked right up!

After Josh got home I went to see Oppenheimer. It was really good, but I also love history, so I know that it may not be for everyone. 

[Guys night!]

Weekend:

Theo takes a lot of medications and supplements. These are his morning meds:

On Sunday another contractor came over to give us a quote for our bathroom remodel. Hopefully he will get back to us soon!

Theo is still having 3-5 observable seizures a day.

Swimming!

Monday, July 10:

Josh went to work while Theo and I played at home. Theo got in his Gazelle and sat nicely in his chair for a while. We did our daily stretches and activities for OT, PT, and Feeding/Speech.

That afternoon I took Theo to PT. He was well rested and did great!

Our yard is full of babies this week! We've seen four baby bunnies (they are tiny!) and a cute little fledgling that was hanging out on (and pooping all over!) our front porch. It's okay. He was cute too!

Tuesday, July 11th:

It was time for Theo to get some new AFOs and SMOs. He has grown so much and the ones he has now are really short! Theo and I went to meet his new CPO, Cole, at Comprehensive Prosthetics & Orthotics. He was very nice and Theo didn't give him to much trouble when Cole was doing all his measurements. If all goes well with insurance we should have his new AFOs and SMOs in the next few months.

That afternoon we went swimming! Ms Jess' complex has a pool and she invited us over. I wasn't sure if Theo would like it, but we thought we would give it a shot.

I got him dressed in his swimming diaper, swim trunks, long sleeve rash guard, sunglasses, hat, and lifejacket. I carried him into the water and he had no reaction. None. He sat on my knee in the shallow end while I chatted with Ms. Jess and two other ladies from the school. 

About an hour into our experience, Theo realized that he could splash! I laid him on his back and he started kicking his legs and splashing everyone. He thought it was soooo funny!

After about two hours we decided to call it a day. Theo was sad when we took him out of the water, but I told him we would be back!

Thanks Ms. Jess for inviting us over!

Wednesday, July 12th: 

Josh headed off to work while Theo and I headed down to Peoria to see the GI Specialist. We haven't see Dr. M in a long time (we had to cancel our last appointment with her when Theo was in the PICU). She is one of my favorite doctors because she is super nice, she listens, and she doesn't assume that everything that is going on with Theo has to do with her speciality. We had a long chat about everything that's happened in the last 10 months. I asked her about getting Theo tested for aspiration since Theo's Pediatrician thinks it could be the cause of his pneumonia. Dr. M thinks that we need to wait and see how he does after he is weaned off of the Clobazam and gets his strength back before we do any testing. I completely agree! We will see her in three months to discuss weaning Theo off of the Prilosec and she can evaluated him for any kind of testing.

We drove straight from the hospital to Thrive for OT. It was really great timing since Thrive is on our way home from the hospital.

That afternoon Theo had feeding/speech therapy with Ms. Jen and Ms. Jeannine (Dietitian) Zoomed in. We haven't see Ms Jeannine in five weeks and she noticed how much more awake and active Theo was. The Clobazam wean is going really well!

Thursday, July 13th:

Ms. Jess came over this morning and watched Theo so I could go run some errands. It's just so much easier to run around without Theo and he LOVES to hangout with Ms Jess!

After I got back from errands I took Theo to OT.

Friday, July 14th:

Josh went to work (per usual) while Theo and I hung out at home. Theo decided to drive me crazy by army crawling all over the family room and getting into situations. I'm so happy he is getting more mobile! It's just proof that the Clobazam was really affecting him.

That afternoon Theo and I went to High Hopes for PT. Josh met us there so he could take Theo home and I could go get my allergy shots. 

Weekend:

Josh and I have been talking for a while about renovating Theo's bathroom. We've contacted a few local contractors and one of them came out this weekend to look at the bathroom. We are thinking about combining the jack-and-jill bathroom with the powder room so make one giant bathroom, BUT we have to make sure that both bedrooms and the main house can still access the bathroom. It looks like putting the shower in the middle of the bathroom will be our best bet. It's going to cost an insane amount of money, but we really need a roll in shower for this growing boy.

[Shower in the middle]

We also like these more neutral colors:

We have asked four contractors so far to come give us quotes, so we'll see what everyone comes up with.

I know it's stupid hot in the West and Southwest. Stay cool friends!

And LeBron is coming back for another year. Let's do this!

Theo is having about 3-5 observable seizures a day. They are getting less intense, so they are hard to see. That VNS is working hard!