Here I am: Theo's 23 Months Old

Monday, July 8, 2019

Theo's 23 Months Old

It’s been quite a busy month for us. Theo is 23 months old, so it’s time for an update!

My parents came out to visit and watch Theo, so Josh and I could go see Paul McCartney in concert (see previous post). It was probably the best rock concert I’ve ever been to!

While my parents were in town, Theo and I went to the dentist. The poor kid has EIGHT teeth coming in at the same time (including four molars).

Theo continues to tolerate his G Tube feeds well. So well, in fact, he’s over 30 lbs and is 35.5 inches long! I can’t believe he’s in the 85th percentile for weight when he was in the 5th percentile last November! Theo also has the “Compleat Glow,” which happens when you eat a lot of Compleat (his G Tube food) and your skin turns yellow thanks to the sweet potatoes and squash!

DIET numbers from February until now:

February:

21st weight for age

89th length for age

4th weight for length

June:

85th weight for age

91st length for age

68th weight for length

Theo is continuing to get stronger and is tolerating his stander and HeadPod for longer periods of time. He is also sitting up (in my lap) and is allowing people to touch his hands. He still has therapy almost daily, but he seems to enjoy (tolerate?!) those sessions a lot better.

[How big is Theo?]

[SOOO BIG!]

For Father’s Day, we Theo got Josh an antenna for his car and a cute Love Pop card.

[Happy Father's Day to all the great dads!]

After opening his presents, Josh worked on decorating Theo's Star Wars room. We just need a few more things and I think we’ll be done.

[Theo is having a hard time figuring out when to sleep. He will whine and act tired so I put him in his bed, but then he will just lay in there and laugh. Then when I bring him back out to the family room to play he falls asleep on the floor. Ugh.]

[Josh and I went out and got sushi and then to Crusade to get this delicious shake! It was a great date night!]

[Working in the stander at home]

[Looking to the right]

[Laying on his right side at PT]

[Working on his prunes]

I was contacted by a doctor from Yale who is studying Vein of Galen malformations and he asked if we would participate in a study. OF COURSE! Josh, Theo, and I all submitted our cheek-swabs and hopefully the doctors at Yale will find out what’s causing this horrible condition.

[Happy Canada Day!]

[We started feeing Theo with syringes instead of using the pump. Bye-bye pump bags!]

Theo and I visited the hospital in Peoria just once this month, so he could get an ABR (auditory brainstem response test). This will tells us how the cochlea and the brain pathways for hearing are working. Since Theo’s first embolization on his aneurysm, he won’t roll onto his right side or put his right ear down. No one knows why. An ENT suggested getting his hearing tested. I’m sure that’s not the problem, but why not check? Of course, in the two weeks leading up to the test Theo started rolling to his right side and is getting better at putting his right ear to the ground. He’s still not happy about it but he doesn’t scream and cry like he use to.

Theo and I went to Peoria the night before the test so we could stay at a hotel. I was supposed to keep Theo awake as much as I could so he would sleep during the test.

[I put Theo on a mattress on the floor and he slept pretty well.]

[I came prepared with my headphones. Theo goes to bed a littler earlier than I do.]

[Breakfast!]

The audiologist ran the test and noticed that Theo has very mild hearing loss in his right ear. So, she did another test to check his eardrum. His eardrum wasn’t responding like it was supposed to, so she concluded that he has fluid behind his right eardrum. She doesn’t think it’s infected though since Theo doesn’t have a fever. This could explain why it’s painful or uncomfortable to roll onto his right ear. So we are going to talk to a Pediatric ENT and they’ll either drain the fluid or prescribe medication to do that.

[I bought these cute beanbag chairs for Theo's room online. I had no idea they were this big!]

Theo still isn’t sleeping well, so I contacted his Neurologist and asked if we could wean Theo off of his second anti-seizure medication, Keppra. He said that was fine and we finished the wean a few days ago. Only time will tell how this affects Theo.