Theo's 18 Months Old

How is my baby 18 months old?! HOW?! 

We started this month by getting back from our epic South American and Antarctic Adventure. We only had a few days at home before Josh had to go back to work (in northwestern Illinois) and Theo and I headed south to the OSF St Francis Children’s Hospital of Illinois, for his G Tube surgery. 

[New carseat with a lot of head/neck support]

Josh will be the Chief on a project close to home this year, but that job isn't scheduled to start up until the spring. So, to hold him over until then, they have sent him to Galena, Illinois (about three hours northwest) to work on a project.

[Playing Peek-a-Boo]

[Theo was ready to get rid of the NG tube]

[My super talented Aunt Janice Neilson sent Theo this sensory blanket! It's amazing and all of the therapist have been using it with Theo during their sessions!]

Theo and I drove down to Peoria on January 13th and stayed at the Marriott. It is much easier to drive seven minutes to the hospital from the hotel instead of driving two hours from the Raptor.

On January 14th, We arrived at the hospital for Theo's 6:00 AM check in time, got registered, and then headed downstairs to the waiting area. A nurse came for us and took us into a smaller waiting room where we met with various nurses, the General Pediatric Surgeon (Dr. Robertson), and the Anesthesiologist. 

They took Theo for his surgery and then 45 minutes later I got a page saying Dr. Robertson wanted to meet with me. I went to a "Conference Room" where Dr. Robertson told me that Theo did very well and we should be able to go home tomorrow!

I was then taken to recovery where I saw Theo. He was NOT happy and since they had put the IV in his right arm (and taped his arm up), he wasn't able to put his Paci in his mouth on his own. I would do it for him and then he would spit it out and try to do it himself. UGH! 

We stayed the night on the 6th Floor (General Pediatric Recovery) and neither of us got any sleep. Theo was whining most of the night because he couldn't put his Paci in his mouth. I had to sit next to him all night and sing him songs while he cried. It was heartbreaking!

The next day, January 15th, Dr. Lin (Theo's Neurosurgeon) stopped by and said they would do a quick CT Scan to check on the shunt. After the CT scan, the General Pediatric Surgery team came in and removed some of Theo's stitches (he SCREAMED!) and then made sure I was comfortable with the G Tube before discharging us.

Over the next week we worked hard to figure out how to feed Theo with the G Tube. The tube is much larger and shorter than his NG Tube, so the milk flows faster and if we can't slow it down then it'll make Theo throw up. There is definitely a learning curve!

[Feeding Theo]

[I cut holes in his clothes so I could feed him without taking his PJs off]

On January 20th, we were able to see the "Super Wolf Blood Moon" Eclipse! It was gorgeous!

[Josh took this picture]

On January 22nd we met with Dr Robertson so he could check Theo's wounds. Everything looked great so we scheduled another appointment with him for March 7th. At that time they will switch out Theo's "button" and show me how to switch out the "button" myself.

[Theo finally fits into his Christmas 2017 PJs]

[Backstreet Boys on GMA?!]

[How I feed Theo at night]

On January 27th, Theo and I drove down to Peoria so that we could stay at the Marriott before his EEG. According to the rules, I had to keep him awake until midnight the night before, wake him up at 4 AM, and not let him sleep AT ALL until his test at noon. We have a two hour drive to Peoria and there was NO WAY I would be able to keep him awake for that. So, we went to the hotel the night before. 

We were both exhausted, but I was able to keep Theo awake and he fell asleep right after the technician finished putting the electrodes on his head.

After about 30 minutes the technician told me to wake Theo up. The test was over and it was time for us to leave. UGH! Theo was expecting a good nap and he was not happy to be woken up!

After the EEG we went and saw Theo's GI Specialist. She was very happy to see that Theo was gaining weight (did I mentioned he gained TWO pounds while we were on our trip?!) and told me to keep up the good work!

[Drive home from Peoria. Here comes the Polar Vortex!]

A few days after the EEG I received a call from the Neurologist Nurse. She said that our doctor asked her to call me and tell me the results of Theo's EEG. My heart sank. If they call it's usually not good news. She said that Theo's EEG was "abnormal, but he's not having seizures." She told me to continue giving him his seizure medication and then she made an appointment for us to come see Dr Avula on March 7th.

Of course, this news was expected, but it didn't stop me from calling Josh and bawling my eyes out. Theo's brain is not normal. He has an unidentified Neurocutaneous disorder, a brain aneurysm, enlarged ventricles, and brain damage. I know this. But it still hurts every time I think about it. 

We will be meeting with the Geneticist and Neurologist next month and I’m curious to see what they will say about Theo’s severe physical and developmental delays. Hopefully they can shed some light on our situation. 

On January 29th, 30th, and 31st, we were hit with the Polar Vortex. Josh and I went through this when we lived in Indiana in January 2014, so we knew the Raptor would be fine, but it's still not fun.

[The anti-freeze froze]

Theo and I bunkered down (Josh still had to work) and ran our water constantly so that the pipes in the Raptor didn't freeze.

On January 30th we awoke to running water and a warm Raptor. I thought we had made it, BUT then the water stopped running! We called the campground owners and they told us that one of the campground pipes had burst. Bummer. 

We were supposed to move into a house that weekend, but since there was no water at the campground and the home's owners were gone, we decided to pack up a few things and head to our new home a couple days early.

My parents came up that weekend to help us get moved in and to watch the Super Bowl. Everything turned out great!

So far we love the house! It’s so nice to have more room especially since Theo is growing and his therapy equipment takes up so much space. 

Theo is still seeing a therapist almost daily. We've also received a bunch of new equipment that should help Theo with his physical and developmental development. 

[HeadPod - Helps with building neck muscles and getting better head control]

[Feeding Therapy - I dip Theo's Paci in baby food and then he puts the Paci in his mouth. He usually gags the first few times, but then he gets use to it.]

[Vision Therapy - Light board]

[Playing with his light board and switch - towards the end of the video Theo gets silly and teases me]

Theo still won’t take any food by mouth and he doesn’t have head control, but we are working on it!

[Theo does this funny chicken wing dance, but he won't do it on camera!]

On February 5th we received a large package from a home pharmacy group. The package contained a food pump, syringes, bags, and formula for Theo. We will receive this shipment monthly. On February 6th we had a visit from a home health nurse. She showed me how to use the feeding pump and then checked Theo. She will be visiting us every week until she is sure that we are comfortable using the feeding pump and Theo is healed from his surgery.

[Trying some new food]

[First time using the food pump]

[Theo threw up right as we got to Physical Therapy and I forgot to pack him a change of clothes. Oops! Nakey therapy it is!]

I know these post are all about Theo, but Josh and I have lives too... I guess. 

I spend a lot of time thinking about how excited I am for Star Wars Celebration in April and Josh works very hard so that I can go to fun, nerdy conventions! 

I also watch Lakers games when they are on TV. Right now we are trying to get AD. I don't think it's worth trading the ENTIRE team (minus LeBron) away, but I'm not Magic Johnson, so we'll see what they do.