Monday, February 26th:
After we got Theo on the bus our contractor came over to settle the next part of our bill and to talk about what we have left. We are SOOO close to being done which is great because I'm sick of writing checks. The one we gave him today was over $20,000. It actually makes me nauseated.
Since Theo didn't have any therapy today he came home on the bus. He just loves the bus!
I received a call from Theo's speech therapist from school, Megan. She told me that the trial for the eye gaze speech device was ending this week and they have to send it back. But they are going to work on getting him one! They'll have to submit a letter to our insurance and get signed scripts from Theo's doctors. She asked if I thought our insurance would give them any problems. I said yes because they denied Theo's bath chair and activity chair. She said, "What insurance company denies a non-verbal kid a speech device?" and I said, "One that doesn't think a kid who can't hold up his own head doesn't need a bath chair because it's not 'medically necessary.'" This may be a fight, but we are going to try! Theo has been working so hard and using his device really well. And we know he is saying what he's thinking because he's constantly asking to go "bye, bye on the bus to see dada!" Oh this kid and his dad!
Theo had 12 observable seizures today.
Tuesday, February 27th:
Today was school picture day! After we got Theo in his wheelchair we fluffed up his hair and sent him off to school. Ms. Jess had a bunch of ideas on how to get Theo to smile for the picture so I wasn't too worried!
I got this hilarious text from Ms. Jess:
Theo is letting Ms. Jess know when he needs to go potty and at home he is doing the sign for diaper when he needs a change. I love all the communication! And I love that he knows that he's doing a great job!
Ms. Jess also said that they had a lesson about President's Day in social studies and Theo actively participated during the whole lesson. He also ate some turkey food pouch and two yogurt melts!
After school we went to PT with Ms. Cody and then to The Legacy Ranch for his lessons with Sherman.
We knew severe weather was coming, but we were not worried since it wasn't supposed to be here until sundown. It hit 72 degrees today (of course that was a record) and you could feel the humidity rising right before the sun went down. It felt gross, like you could tell things were unstable and about to get wild.
We watched the news most of the evening. Luckily all 11 tornados touched down to our north. We got a crazy amount of lightning down here, but no rain and no tornados. The people to the north were not as luckily, but it looks like no one was injured and all the tornados were EF0s or EF1s.
Theo had eight observable seizures today.
Wednesday, February 28th:
Our beautiful vanity was delivered today! The contractor will be here tomorrow to install it and do a few other punch list items.
Theo had a half day so he was home by noon. He took a quick nap and then we headed to the dentist. Theo wasn't happy to be there or to have them looking in his mouth, but he did fine. The hygienist was able to get a good look around and even polished his teeth. Then Dr. Denise came in, took a look, and did his fluoride treatment. She said his teeth look great and she can't see any issues! YAY!
After the dentist, Theo had feeding/speech therapy with Ms. Jen. I was worried he would be too upset and protective of his mouth to participate, but he actually had three yogurt melts and was in a good mood.
Theo had seven observable seizures today.
Thursday, February 29th:
Today is Leap Day and Rare Diseases Day! We love our Zebra!
“When you hear the sound of hooves, think horses, not zebras.”
This phrase is taught to medical students throughout their training.
In medicine, the term “zebra” is used in reference to a rare disease or condition. Doctors are taught to assume that the simplest explanation is usually correct to avoid patients being misdiagnosed with rare illnesses. Doctors learn to expect common conditions.
But many medical professionals seem to forget that “zebras” DO exist and so getting a diagnosis and treatment can be more difficult for sufferers of rare conditions. VOGM is considered a rare condition and so Theo is known as a medical zebra. Theo also has a long list (over 20) of medical diagnoses including an unidentified Neurocutaneous Disorder. They don't even have a name for what he has, so he is our Zebra!
After we got Theo on the bus I went to the dentist. My cleaning went great and the dentist said I have fantastic teeth 😊 I do have a small bump on the interior of my lip. It's been there for YEARS, but he told me that it won't go away on it's own and I should just have it removed. Apparently I subconsciously suck on my lip and over the years this bump of tissue formed. He said I could go see an oral surgeon, but he recommends an ENT. Works for me because I need to go see an ENT anyways.
Our contractor came over today to install the vanity, hang a mirror, install transition strips, and touch up the hardwood floor that they had to repurpose.
The counter top guy will be here on Monday to take his measurements. After he gets the vanity stone cut and installed the plumbers will come back in to install the sinks and hook up all the plumbing.
We decided to move the "archaeology nook" to the corner of the dining room. There's not enough room for all of my books, so I decided to donate some of them.
While Theo and I were at OT Josh installed the shelves.
I think it's perfect!
Theo had six observable seizures today.
Friday, March 1st:
While Theo was at school Josh and I ran some errands. We bought a couple of fake plants for our new "archaeology nook." I like how they add some extra texture and color to the shelves.
After school I took Theo to PT while Josh had a conference call. I hope that means work will be starting up soon! I love having Josh home, but our bank account is going the wrong way very quickly!
Theo had six observable seizures today.
Weekend:
On Saturday we went to a used book store to donate some of my books. They said they didn't take text books, but I also had some regular reading books. The lady at the front desk said she didn't think people around here would be interested in archaeology, anthropology, or geology. Well, that's a shame.
[Archaeology books]
[Anthropology books]
[Geology books]
We ended up dropping them off at a Goodwill. Maybe some lucky person will find them there.
That night we watched the Lakers vs Denver game and LeBron James became the first player to hi 40,000 points! Pretty insane!
The Lakers lost the game though. Congrats to Lebron! Now please focus on getting us to the Playoffs!
[Theo loves to cuddle his blanket]
We got rid of our satellite DIRECTV because it was getting too expensive. And now with all of the streaming services we are up around the same price again! AND we have to watch commercials 🤦♀️
We are in for a warm and erratic March!
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