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!

To Peoria and Back (Three Times)

Monday, July 3rd:

Today was a VERY busy day! At 7:30 AM Josh, Theo, and I jumped in the van and made the long trek to Peoria. 

First we met with Dr Stewart with Pulmonology. We haven't seen her in person since Theo was released from the hospital, but we have been in contact and had a video visit since then. 

We filled her in on all things Theo and she was very happy that we've been able to keep Theo out of the hospital with all of our tools (oscilation vest, nebulizer, cough assist, inhaler, etc) even though Theo has been sick twice since his last hospitalization. I told her that Neuromodulation mentioned doing a Sleep Study (since the VNS can affect breathing) and she thought that was a good idea. She went ahead and ordered a Sleep Study and a chest x-ray and we'll see her again in a few months.

We then headed to the next building to see ENT. APN Amanda looked in Theo's ears and said that the tube is still in his left ear, but she couldn't tell with his right ear because he has a lot of ear wax. She told us to put ear drops in his right ear twice a day for the next two weeks, so we can get that all cleared out. She also ordered an audiogram that we can get done once Theo's right ear is clear. 

We then made the long drive back home where we were able to relax for a few minutes before Josh took Theo to PT.

Ms Cody said Theo did great and he was very alert!

HAPPY INDEPENDENCE DAY!

In the morning the three of us headed to the local clinic to see if we could get Theo's bloodwork done there instead of going all the way to the hospital in Ottawa. They said they could do three out of his four orders, but since one of them has to be done at a hospital we should go to the Morris hospital to get it all done there. We haven't been to the little Morris hospital since Theo fainted, but it's a lot closer than Ottawa, so we went there first to see if their lab was open and able to do his bloodwork. They were! YAY! It's good to know that we can just go to the hospital in Morris (20 minutes away) from now on for labs. 

That night we stayed at home and watched the fireworks that were set off in our neighborhood. Our neighbors went all out and bought tons of HUGE fireworks. It was a great show and we could watch it from our kitchen, so that was a plus!

Wednesday, July 5th:

Josh went back to work today while Theo and I went back down to Peoria. Our first stop was imaging so Theo could get an ultrasound. Theo was very patient and did great during the ultrasound. Next, we headed over to St Judes to see Oncology and Hematology. The doctor did her physical exam and said she didn't see any concerns. She didn't have the results back from the ultrasound yet, but once those come in she will call me. Back in December they found a lesion on Theo's liver, but during the last ultrasound (when he was in the PICU) they didn't see it. She said that sometimes they can go away on their own and even if it does show up again they wouldn't do anything about it unless it was affecting blood flow. 

On our way home I got a message from the radiologist stating that the ultrasound was clear. YAY!

We headed straight from Peoria to Thrive so Theo could see Ms. Laura for OT. Luckily, he took a good nap during our two hour drive and he worked hard for Ms Laura.

After OT we went home and then had feeding therapy with Ms Jen. Theo took a few big bites, but didn't seem to interested in his food. Ms. Jen recommended getting a dental mirror, dipping it in cold water, and then rubbing it on the inside of his cheeks to "wake his mouth up." I ordered a mirror and we will give it a shot!

Meanwhile at Josh's work, the contractor hit a waterline, which caused some flooding and a boil order for the area. Oh boy!

Thursday, July 6th:

I needed to run some errands today, so Ms. Jess came over to hang out with Theo for a few hours. He loves hanging out with her and it looks like they had a lot of fun!

[Theo has been pushing his vest down and he thinks he's so funny!]

After my errands I took Theo to OT. He was a little more whiny today, but he still worked hard.

Friday, Jul 7th:

Josh headed to work while Theo and I went back down to Peoria. Third time this week 🤦‍♀️ Luckily, I have plenty of podcast to listen to and Theo usually does pretty well in the car.

Today Theo got a hip x-ray and then we met with his Orthopedic Surgeon, Dr. Akeson. Theo was in a bad mood after his x-ray and I was worried he wouldn't calm down before the doctor saw him. But once I got him on the exam table and turned on his music videos he calmed right down. Phew!

Theo stayed relaxed and let Dr. Akeson stretch him out. I mentioned Theo's tight hip and that a radiologist noticed possible scoliosis during his last chest x-ray. Dr. Akeson checked Theo's flexibility and showed me some stretches I can do with Theo to help his right hip and his tight adductor muscles. He then looked at his back. The doctor noticed there is a slight curve in Theo's lower back. He said this is likely related to his tight right hip. If we get that adductor muscle stretched out and the proper rotation back in his hip that will help his back. Dr. Akeson wants Theo to spend as much time as he can in his stander too. We will see him again in the spring 🙂

We made it back home with just enough time for a quick rest before heading to PT.

Weekend:

I had no desire to go anywhere this weekend, so we just stayed home (Josh worked on Saturday) and played. 

I updated this list from our time at home during the pandemic. We are going to try to do most of these everyday of the summer to keep Theo on track!

[Working hard in the gazelle]

[I don't have a Twitter handle, but I did sign up for Threads today]

[NICE!]

I like to be outside, but I hate bugs. I saw this video and thought it was such a cool idea! Motorized screens?! Yes please!

Theo had 3-5 seizures every day this week. We are still weaning him off Clobazam and he is reacting a lot better than I thought he would. Sometimes he is irritable, but he is waking up more and is getting stronger! 

While we were in CA we got professional photos taken by my cousin Annie. They turned out fantastic!