Theo's 13 Months Old

Theo’s 13th month has been another busy one! We started this month at the end of our two week trip to Downers Grove and ended the month at the OSF St Francis Children's Hospital for Theo's Second Embolization Procedure (both covered in other post).

Theo is still going to PT, OT, DT, DTV, and the Chiropractor weekly.  

Theo continues to have a love/dislike relationship with all of his therapist. But they can usually make up any hard feelings with the swing!

[Theo didn't know what to think about this one!]

While Theo is sitting up in his feeder chair he will look both ways. But when he is down in the floor he has a hard time looking to his right. The therapist think it may be an inner ear issue. We have been working on getting Theo's right ear down, but it is a hard process.

[Distraction with lights]

Since Theo's one year check up at the Pediatrician we have been working really hard to get him to gain weight. If you don't remember, he's only 18 lbs 10 ounces (15th percentile). We have been giving him full fat dairy products and even sneaking heavy whipping cream into his formula. After a week he gained almost a pound (yay!), but his stomach was NOT happy!

Through Early Interventions we started seeing a Dietitian. She suggested cutting out ALL dairy and seeing if that helps. She also thinks that he may have some acid reflux. She put Theo on a high calorie, non-dairy formula called Elecare Jr. It's insanely expensive ($45 for a 14.1 oz can vs Enfagrow at $22 for 36.6 oz), BUT Theo needs the calories. She also recommended that we start seeing a Feeding/Speech Therapist ASAP.

It was hard getting Theo switched over to the non-dairy formula, but after a week of transitioning we were successful! He is a VERY picky eater!

  

He still doesn't want to eat non-formula food. And we've tried EVERYTHING!

[Holding his own spoon]

Theo's weight is a HUGE concern of mine (and the doctors), so we really need to see the Feeding Specialist so I can pick her brain and she can help my kid eat!

[Theo is still wearing his DOC Band 23 hours a day. It's been rubbing his hair off on his left side though. It doesn't seem to bother him, but it can look a little strange]

[Helmet hair!] 

This month Theo also had an eye appointment with his Ophthalmologist. Theo’s left eye is a little “behind” but the doctor has a plan for us. We are most likely going to do some patch therapy (like a pirate) and if that doesn’t work then Theo may need glasses.

We also had an appointment with Theo’s Cardiologist this month. They did an Echocardiogram and EKG and everything looks great! He’s approved by Cardiology to go ahead with his MRI and Second Embolization.

Josh and I continue to try and be the best parents possible for little Theo. Josh works a lot, but we love being a able to FaceTime with him!

Josh had off THREE full days for Veterans Day so we took advantage of that by getting some frozen yogurt, Lou Malnati's, and Portillo's.

We were told that Giordanos and Lou Malnati's had the BEST deep dish pizza in the Chicago area. Lou's has the better crust, and Gio's has more cheese and is stuffed. So, when we decided to try Lou's we ordered extra cheese (since that was the biggest complaint against the deep dish chain). OOPS! The pizza was delicious and it DID NOT need extra cheese!

We also went to another Chicago-land staple: Portillo's! We've been here before (a few years ago?) and neither of us were impressed. I did some research and we wen't back to try it again. It was good, but I don't get the hype 🤷‍♀️

[Date night! We go on a "Family Date Night" once a week, which usually consist on going out to dinner, coming home, and going to bed. But since Josh was off for a few days and could sleep in, he decided to bust out his Play Station and get a little gaming in before bedtime.]

I decided to go and get pampered at a salon close to Theo's PT. I got a mani/pedi and it was totally worth it!

Along with taking care of Theo, I work out six days a week. It's hard in the Raptor, but I make it work!

[New exercise bike in the back]

I went to go get Theo from his crib and when I put my arm in I felt a bunch of spider webs. Gross! I turned on the lights and just two inches from Theo's face was a HUGE spider! I freaked out, grabbed Theo, and called Josh. He offered to come home and take care of it because I was sobbing, but I put on my big girl pants and took care of it! After saving my baby, I put a Tupperware container over the spider and then put a large candle on top of it. I didn't know how strong the spider was! After an hour, or so, I got my courage, removed the Tupperware, grabbed the spider with a paper towel, and threw it outside! I'M SO BRAVE!

Theo is currently at the OSF St. Francis Children's Hospital in Peoria recovering from his second embolization on his brain aneurysm. According to the Interventional Radiologist, the procedure was a “tough one,” but Theo did well. They managed to plug two of the four “feeder” veins, thus stopping 80% of blood flow to the aneurysm. During recovery Theo’s platelet and hemoglobin levels got too low so he had platelet and blood transfusions. We will be back at the hospital for Theo’s third embolization on October 15th. After that is done Neurosurgery will decide if and when to put a shunt in. I'll be writing a full post on this next.