Bring on the Fall! It's November 2019!

On November 1st I took down our Halloween decorations and put up our Thanksgiving and Christmas decorations!

[Christmas decorations, Lakers and Pakers fanfare, and one beanie baby turkey!]

[Josh, Theo, Brodee, and Courtney]

I've been working hard at becoming a better runner, but my ankles are not cooperating. I'm sticking to a strict RICE (rest, ice, compress, elevate) routine so that I can recover and continue my running journey!

[Ice]

[Elevate]

[Compress] 

Next April Josh and I (mom is coming to watch Theo) are going to Orlando for a few days. We were invited to go on a cruise with some of my friends, but we don't feel comfortable leaving the country without Theo. So, I suggested we go to Disney World and Universal Studios before the cruise so I can see all my friends and then they will go on the cruise and we will go home. I'm so excited!

Theo is still having serious gas/acid reflux/tummy issues. We've been getting up at midnight to give him water and 4:00 AM to vent him.

 

 Theo continues to have 7-10 therapy appointments a week. It's very busy (and it's about to get busier), but it's so good for him. He is getting stronger and better with his head control.

Did you know that most places stop making onesies at 24 months? I've been able to get a few in larger sizes but they are usually very expensive. Theo needs to be in onesies because he is still on the ground so much and if he is in just a shirt and pants then his pants fall down and his shirt rides up. Solution?! Overalls! Doesn't he look so handsome?!

We started Theo on a new blended food, Harvest. Our GI Specialist is having us try a new one (along with new meds) in the hopes that it helps his stomach. So far, things have been getting worse.

We got Disney Plus and The Mandalorian came out! It's such a great show! Check it out!

[I guess the system got a little overloaded!]

I'm part of a Facebook "Buy Nothing/Sell Nothing Group" which focuses on asking, giving, and borrowing. For example: A lady wanted to borrow the Harry Potter books. She posted the request and I responded that I have a set that she can borrow. She came by the house and picked them up a few weeks ago. I'm not using them right now, so I was happy to help!

Theo is getting too tall to lay down in the tub so we got him a bath chair. It was crazy expensive, but he seems to like it.

 [Working on sitting in the corner]

November 16th was the day I had been working towards for the last six weeks: a 30 minute run. I know, I know. Most people can run for 30 minutes easily, but I couldn't and now I can! YAY! This program was so fun! We ran through Portugal (visiting places I had been to before) and Morocco. Tommy Rivs is such a great trainer. He teaches you how to not only run, but how to listen to your body, not over do it, and avoid injury. I'm excited to start my next running series! This time we are going to be running and hiking in Switzerland! 

  

[I like to spy on Theo]

[Theo is really warming up to his new therapist. I was shocked and super happy to see Theo holding hands with his DTV (Vision Therapist). He doesn't like to be touched at all! Especially his hands! YAY! Progress!]

[Theo with Becca at PT]

My mom asked what candy we wanted for Christmas. I sent her these pictures: 

[This is how Theo cuddles]

Theo is getting better at sitting up and hold up his head. He still needs help and he gets nervous, but he's getting better every day!

[Santa sent this to Brodee, so we *cough*, so SANTA could find out what he wants for Christmas!] 

[UGH! Baby Yoda merch won't be available until February 2020!]

[Crazy hair!]

[Playing with dad!]

[This is what Josh's final day onsite looked like]

I love hanging all of Theo's art work from Toddler School!

I thought this was SOOO VERY IMPORTANT!

Theo's brain continues to be a challenge for his doctors. 

A few days after his MRV/MRV I got a call from the APN with Interventional Radiology, Jessica, and she said that the doctors (Neurosurgery, Vascular Surgery, and Interventional Radiology) met the other day and the Vascular Surgeon and Dr Fraser agree that they need to act sooner rather than later. She said that they determined that the fistula is residual (or reoccurring) and is linked to the vein of Galen embolizations. She sent all of Theo’s medical records to San Francisco to see what they think. It can take a few days for them to get his records and then 10 days (or so) to read through everything since it’s a pretty complex case. If the doctors in SF agree with Dr Fraser and Dr Klopfenstein then they will likely more forward and do the surgery in Peoria. Theres a chance the doctors in SF will want to treat Theo there, so that’s always an option.

A few days after that I got another call from nurse Jessica with IR. They spoke with one of the doctors in SF and he thinks it’s better to wait on embolizing the fistula. It’s in a dangerous location in the brain, so it’s best not to mess with it right now. They are still waiting to hear back from the other Dr in SF (who is the AVM specialist), but she thinks he will agree. As of right now they will repeat an angiogram in a year. But if Theo doesn’t continue to progress (on “Theo’s Time”) or if we notice anything different about him we need to call IR immediately and they will want to check him out.

I hate hate HATE the "wait and see" game. Last time we did that Theo got hydrocephalus and brain damage. BUT if the procedure is too dangerous and it's better to wait then that's what we will do. We have to trust the doctors.