I spent a lot of time this week talking to the coordinators for Theo's ESY. We are trying to figure out of they have people who can take care of Theo while he is at school. And they are asking for a lot more paperwork that his school didn't need during the school year (like a prescription from his doctor with the exact time that he needs to be given water). It's been a little frustrating. I've also been talking to Theo's Neurologist and they want to change Theo's "Seizure Action Plan" (SAP). His current plan was written by the doctors that saw Theo everyday for six days while he was in the hospital. The plan says that if Theo has one seizure lasting more than 2 minutes or 10 seizures in 10 minutes we are supposed to give him his emergency meds and call 911. Theo's Neurologist (who we've only seen in person once) doesn't like this plan and changed it. Now if Theo has a seizure lasting more than five minutes or three seizures in one hour we give him his emergency meds and call 911. He also changed the type of emergency meds from a rectal gel to a dissoluble pill that we are supposed to put under his tongue. Yep, we are supposed to put a pill under Theo's tongue. My child who has a SEVERE oral aversion will be getting a pill under his tongue. I'll let you know how it goes.
On Monday, April 25th, we spent all day at home and worked on some homework.
Theo had nine seizures today.
[Working on wearing headphones]
On Tuesday, April 26th, Ms. Laura came over for OT and we got Theo to sit up on the floor. He is working so hard!
[Ms Laura brought Theo all these awesome "get well soon" gifts! Thank you!]
[Speech homework]
We got another notice from Holland America about our cruise. As of right now Russia, Finland, Estonia, and Latvia have all been cancelled, BUT we are going to NORWAY! YAY! So we'll have two ports in Denmark, two in Germany, two in Sweden, and one in Norway. I'm not complaining!
We bought these awesome vacuum sealed bags, so we can pack Theo's liquid food and diapers. I think this will work well for our trip!
Theo had seven seizures today.
On Wednesday, April 27th, Theo had PT and Feeding therapy at home.
Josh and I talked some more about our options for the fall and we decided that Theo would benefit greatly from attending Kindergarten in the fall. I sent off an email to the Kindergarten coordinator and she was very excited to hear that Theo would be joining their program.
Spring is kinda here so Josh has been playing around in the yard.
[Before]
[After]
Theo had 10 seizures today.
Thursday, April 28th, Theo had OT at home and worked on some speech homework.
I had to take some pictures of Theo's wheelchair, bag, and carseat for our travel agent.
Theo had eight seizures today.
We woke up early on Friday, April 29th, like we do everyday. BUT today was different because Missy and Tyson were at the hospital waiting for little Ty to make his appearance!
Theo had PT at home and we worked on rolling over.
Josh got some new plants!
That afternoon we finally got the good news: baby Ty was here and everyone is healthy and happy!
Congrats Missy and Tyson! I am so excited to meet my newest nephew next month!
Theo had six seizures today.
On Saturday, April 30th, we had an "extreme weather day," so we spent all day inside watching the local news. There were a few intense thunderstorms at our house, but luckily no tornados.
Missy and Ty were discharged from the hospital just one day after he was born!
Theo had nine seizures today.
On Sunday, May 1st, Josh planted his new trees and we finished removing the tape from Theo's wounds.
[Hip surgery incision]
I don't know why, but Theo had 12 seizures today. He had five within one hour and we ended up giving him his emergency meds. Of course he freaked out when I tried to put a pill in his mouth. He coughed and gagged and I thought he was going to throw up, but he didn't. Don't worry. I'm going to send a message to his Neurologist soon to talk about this new SAP.
I'm going to be brave and get a bike. I am scared to exercise where people can see me, but I know I can't work out in my basement forever (or can I?). I already looked up some routes that will take me out into the cornfields were there are less people (and traffic). Hopefully we can go find a bike in a few weeks. Wish me luck!
The biggest reason I want a bike is so I can complete a triathlon before my 40th birthday. It's been on my bucket list FOREVER and I just need to do it! My goal is to complete one next May.
I've also been working on my next decorating project. I ordered these beautiful wand holders from Etsy. I love them because there is a place to have the person's name along with the wand!
I downloaded the character signatures and we traced them with Theo's light board. It worked pretty well!
Of course, my first three wands are Harry, Ron, and Hermione's. It'll take a long time to fill the displays up, but that's okay!
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