The December Cram

Our December was super busy! We crammed a lot into the three weeks leading up to our Cancun Christmas Trip.

Theo got a new toy from a local "Buy Nothing/Sell Nothing" Facebook group. Theo has this robot in miniature size, so I was hoping that he would take to the large one. Theo's visual impairment makes it hard for him to see/comprehend new toys, so it's better if we introduce toys that are similar to the ones he already plays with. I gave this a shot and and Theo LOVES it!

[Theo with mini BeBo]


[Theo with giant BeBo]

On December 4th we all went down to Peoria for Theo's ENT post-op check up. His tubes look good and the doctor still has no idea why Theo won't roll over his right ear. Back to the drawing board on that one.

After the ENT we went to the hospital to meet with Theo's GI Specialist. She is so great! She sat and listened to us as we told her all of the issues that Theo's been having. She was still concerned about him throwing up every day (aren't we all?), but he is 34 lbs 8 ounces (92nd percentile for weight) and 38.5 inches long (99th percentile), so we know he's still getting a lot of healthy nutrition.

We switched up his feeding schedule a little bit and added in some new medications to help Theo be a little more regular. He'll now be taking two cap fulls of Miralax, 10 mls of Milk of Magnesia, and 5 mls of Senna a day along with his water and Harvest. She then sent us downstairs to get an x-ray done. If Theo was really "backed up" then she was going to admit us to the hospital for a "clean out." After the results came back she told us that Theo was constipated, but it wasn't bad enough for a hospital stay.

She also noticed in his x-ray that he has subluxation of the right hip. More on that later.

[The Lakers are crushing it this year!]

[I was finally able to get some containers in the basement organized. Don't they look beautiful?!]

We've been doing a lot of tummy time lately and trying to get Theo to roll over from tummy to back. He would get stuck on his tummy if he rolled over and would usually need help getting back to his back. Not any more! He can roll from front to back and back to front like a champ! 

[Isn't he the cutest in his overalls?!]

On Saturday, December 14th, we had a family outing to the Christkindlmarket in Ottawa. It was freezing cold, but we had fun anyways! We got some chocolate, hot apple cider wine, and cookies! After walking around for a few minutes we walked down to the Lone Buffalo for some brunch.

[I thought this was so cute!]

Theo has 11 therapist now and I wanted to get them each something for Christmas, since they are all so amazing and patient with Theo (and me).

I got each therapist a small Christmas-season-smelling candle, a card, and a few pieces of candy.

Speaking of therapy, Theo continues to work super hard and is still progressing. He goes to Toddler School twice a week, PT twice a week, Feeding and Speech twice a week, OT once a week (soon to be twice a week), Dietitian every other week, Vision every other week, and DT once a month. Phew! Is that all?!

[Theo sitting with Cody]

On December 10th Theo and I went and met with his Pediatric Surgeon for a check up. He checked Theo's g-tube and said he was very happy with how it looks. We then talked about Theo's tummy issues and that we are working close with GI to fix all the issues. He was glad to hear that and told me that surgery is the last option, so he hopes we can figure it all out with medication and avoid any additional surgeries.

On December 12th we met with a Developmental Specialist in Peoria. We have been waiting six months to meet with her and I was nervous and excited to hear what her opinion was.

The doctor met with us for over an hour and it was a very productive meeting. She went over Theo's most recent MRI and X-Ray and she did an intense physical exam. She is referring us to an Orthopedic Surgeon because there is subluxation of Theo's right hip and his tight left hamstring. His MRI showed the closed Vein of Galen, the new fistula, microangiopathic mineralization (cerebral calcification), and periventricular leukomalacia (PVL) (death of the tissue around the ventricles). She also diagnosed him with Cerebral Palsy. She wants him to go back on Gabapentin to see if that will help with his tight muscles and his sensory issues. She's also worried about Theo throwing up every morning and think it could have to do with pressure in the brain and his shunt not working properly (GI thinks it's due to GI issues though 🤷‍♀️). So, we'll probably have to go see Neurosurgery and they can test his shunt. Better to be safe than sorry, right? 

Overall the meeting with the Developmental Specialist was great. I saw the CP diagnosis coming. CP is a "neurological disorder caused by a brain injury that affects body movement and muscle coordination." Yep, that sounds exactly like our little Theo. the PVL and mineralization were not news to us, but it always sucks to hear about brain damage and tissue death. 

I'm anxious to meet with the Orthopedic Surgeon to see what he thinks is the best thing to do about Theo's tight left hamstring and his subluxation.

We are still hoping to get in and talk with IR about Theo's most recent MRI too. They wanted to wait until we heard back from all the Drs in San Francisco before we went in and discussed a plan. It still seems like they want to hold off on surgery for now.

After a pretty exhausting few weeks I decided to go and treat myself to a massage, hair cut, mani/pedi, and lashes. I'm all ready for Cancun!

Theo also got a haircut this week! Doesn't he look so grown up?

Over the summer our DT, Ms. Kelly, (now Theo's Toddler School teacher) told me about Amtryke and how the local Mason Lodge teams up with them to build trikes for Special Needs kids. She said she thought Theo would benefit from one and I agreed it would be great! As the date was set I got more and more nervous about the situation. It's hard for me to accept charity because I feel like we are so blessed and other people need it more than we do. I was reminded that these people want to serve and I needed to let them.

We headed to the Mason Lodge in Marseilles where we met Ms. Kelly and some members of the local Mason chapter. They presented Theo with a stocking filled with small toys and his trike. It is so COOL! The foot pedals have straps, there is a seat with trunk support, a water bottle, a safety flag, a helmet, and it can be pushed and directed from behind with a handle.

[They forgot Theo's headrest, so we will get that later]

[Straps for Theo's hands so he can hold onto the handle bars]

[Isn't it so awesome?!]

I want to thank Ms. Kelly and the local Mason Lodge for this amazing little trike! Once we get the headrest I think Theo will love zooming around the basement!

After we got Theo's trike we headed back to the Christkindlmarket in Ottawa to get a few things.

[Giant turtles! YUM!] 

On December 16th we headed to the Dentist so Josh and I could get cleanings and Theo could get a check up. I told Josh that we could all get ice cream if we didn't have cavities. Theo and I got ice cream, Josh did not. Bummer! The dentist told me to keep brushing Theo's teeth twice a day and as long as his teeth look great she won't send us to a Special Needs dentist.

[Art from Toddler School! Look at those little "MistleTOES!" Too cute!]

Our Cancun trip technically starts tomorrow (December 17th). Sara and Brodee will be heading to Odessa/Midland to stay at a hotel, so they can catch his early flight to Dallas the next morning. Josh will be flying out to Dallas from O'hare on the same day and will meet Brodee there! We can't wait to see him and take him to Cancun! I'll post all about the trip when we get home! 

I hope you all have a very Merry Christmas and Happy Holidays!