Here I am: Theo's 20 Months Old

Today Theo has his YEAR evaluation for Early Interventions (I can’t believe it’s been a whole year). Our Case Manager and most of a Theo’s Therapist met at our house to discuss his progress. The therapist each took turns to discuss Theo, their concerns, and their goals for him. It was all very overwhelming, but the therapist are hopeful. They all think that once Theo gets his head under control then the rest will fall into place. Now that we’ve gotten his nutrition in line, Theo is gaining weight and getting stronger. I know I’ve been saying this for MONTHS, but hopefully we can get him holding up his head soon. We are working so hard and I would love to see just a little bit of progress.

[Reports from all of Theo's Therapist's]

THEO UPDATED THERAPY:

- Physical - Twice a week (60 min session)

- Occupational - Once a week (60 min session)

- Chiropractor - Once a week

- Vision - Twice a month (60 min session)

- Nutrition - Twice a month (75 min session)

- Feeding/Speech - Twice a month (60 min session)

- Development - Once a month (60 min session)

Theo is also 20 months old today! So it’s time for a family update:

This months been a rough one on our little Theo. We tried a few different G Tube foods, and it did not go well. First we tried Nourish, which is a bean-based blended food. I started by adding one once per day to Theo's diet. It gave him terrible gas and stomach pains, so I stopped that pretty quickly.

I then had a lady contact me about donating some G Tube food to Theo. I told her he takes Compleat and she said she could send us THREE boxes full of Compleat food! Yay! Once the food arrived I noticed that it had a different packaging then what we have, but it looked close enough, so I started giving it to Theo. That's when all hell broke loose! Theo threw up ALL DAY LONG. After his second dose of the new food, I sent a picture of it to Theo's Nutritionist. She said that the food has dairy in it and I shouldn't give Theo any more. UGH! Theo threw up for FIVE days. It was horrible and I felt so bad for him!

[I tried sitting Theo up during feeds to see if that would help... it didn't]

Once we got the food situation under control and I got the award for "Worst Mom EVER," Theo started doing much better. He's tolerating his feeds better and we ended up having a great therapy session with his Feeding/Speech Therapist. Theo was able to relax (thanks, in part, to his weighted blanket) and he not only ate apples and prunes, but pumpkin too! He took most of the food via his paci (since it has to be his idea), but I managed to get him to eat a little off of his Olábaby spoon. He even let his therapist hold his hands, which he is usually VERY protective of. It’s been such a hard week (Theo’s been throwing up after most meals), but I’m glad we ended on a high note! His Feeding Therapist also wants to see Theo more often. She is happy with how he is progressing and she thinks we will be able to get him eating orally soon.

[Sitting in his "big boy" chair]

[Trying to get him to roll to the right by putting all of his fun toys over there. But he would rather be on his left and look at a black box.]

[Showing off how he can get his toes]

[Working with the HeadPod and switch]

[He doesn't like the HeadPod very much]

[On March 17th we got a Spring snow storm! It was really pretty!]

[Theo doesn't like to hold a lot of things, but he really liked to hold this small container. Don't worry, I didn't let him have it for long.]

[I ordered a bunch of G Tube supplies off of Etsy. They are so awesome!]

Theo has also been struggling with sleeping. We were warned that the phenobarbital weaning process would have side affects, but I wasn’t ready for this. He will be up for hours at night and then want to sleep a bunch during the day. I hope once the weaning process is over he will get back on a good schedule.

[Oops! I forgot to put the gate up!]

[Theo LOVES Star Wars!]

[Theo likes to "help" when we are changing his diaper, so we bought this. I think it's meant for smaller babies!]

[Two toys at once?!]

This month Theo, Josh, and I were able to make a quick trip to Ohio to see Missy and Tyson get married. AND I was able to sneak away one day too see Captain Marvel! I can’t wait for Endgame! Speaking of nerdy stuff, I’m so excited to see my family this week and go to STAR WARS CELEBRATION with my brothers! If you see Darth Vader and some Stormtroopers walking around downtown Chicago don’t be alarmed - us nerds are just gathering! MAY THE FORCE BE WITH YOU!

While we were in Ohio, I was able to retrieve some things from my parents basement (our wedding pictures, Star Wars pictures, and the tapestries I bought in Peru). I was so excited to get these pictures hung up in Theo's Star Wars room. There is plenty of empty space so maybe I can find some more cool pictures at Celebration!