Monday, December 2nd:
After Theo headed off to school I had a home visit with the Division of Specialized Care for Children (DSCC) representative. She was at our home for a couple of hours and we went over EVERYTHING! I showed her around the house and she was very interested in how much electricity we need for Theo's equipment. She told me that if we are accepted into the program that we can get a grant for home improvement. A lot of families use this grant for lifts, other home modifications, or even for generators. Theo had medication that is refrigerated and we use the pump, Vest, nebulizer, SAMI cam, air purifier, etc. on a daily basis, so losing power for a long period of time could be messy. It's definitely something we can look into! We also went over the Medicaid application and she said that she will reach out to Theo's doctors and get the rest of the info before submitting everything.
After school Josh took Theo to OT. Ms. Laura said he worked very hard and didn't complain once!
A new Star Wars TV show, Skeleton Crew, premiered today and it's awesome! This is my favorite character, Neel. He is so precious! The show is "Goonies in Space" so if you love the Goonies and Star Wars than this is the show for you!
Theo had eight observable seizures today including one that was 94 seconds long.
Tuesday, December 3rd:
We sent Theo off to school and then I went to run some errands. Right after I got home I received a call from the school nurse, Brad, and Ms. Jess. They told me that Theo took a nap and he has been having a lot of seizures since waking up. This is very typical, but they were worried. Josh and I decided that it would be best to go pick him up and take him home.
Once Theo got home he took a nap and then went to PT and to see Sherman.
He did great at both lessons since he was well rested!
That evening I had a Zoom call with my fellow Changing Spaces chapter leads. We had some promising updates and some not so promising updates. What can I say? You win some and you lose some. After the meeting I put together some flyers that I can pass out along with my business card. I'll keep them in the van and make sure they are easily accessible!
Theo had eight observable seizures today including ones that were 106, 61, and 75 seconds long.
Wednesday, December 4th:
We received a letter from Cigna saying that our PT is not in-network, but they sent us a list of PTs that are in-network. Seems helpful, right? Not so much. Theo needs a Pediatric, Special Needs, Physical Therapist. They are rare and very specialized. The list Cigna sent us was generated from the system and included three doctors that don't see children and aren't certified to treat special needs kids. But yes, they are doctors of physical therapy *face palm*
I decided that I should just call our Case Manager, Michelle, and see what was going on. We ended up talking for over an hour about Theo, his needs, and how we are going to handle this. We came up with a plan to get his current therapists certified by Cigna so that we can continue to see them in-network. It's a bit complicated, but Michelle said it's the best plan for us. Wish us luck!
That evening we saw Theo's feeding/speech therapists, Ms. Jen. I filled her in on all things Theo and Cigna and we are on the same page. I'm so happy Ms. Jen is willing to fight for us so we can continue to see her!
Oh come on Chicago! It's too early for this!
Theo had six observable seizures today.
Thursday, December 5th:
After Theo got to school I received a message from Ms. Jess. She asked if she could pull his tooth. That thing has been loose for MONTHS and is literally just barely hanging in there. I told her to pull it and she sent me this picture a few seconds later:
She said there was very little blood and he was only upset for a second! That's three down!
[It's so tiny!]
After school I took Theo to see Ms. Laura at OT. I explained our situation to her and she also agreed to do some extra work, so that Cigna will cover our sessions. We can't lose these amazing therapists!
Theo had five observable seizures today.
Friday, December 6th:
After we sent Theo off to school I went shopping and got our Christmas presents for Theo's teachers, therapists, and helpers ready (he has 27 of them) 😁 I also started working on the gift bags for Theo's classmates.
They are going to be store under the Harry Potter Village table until it's time to pass them out!
After school we took Theo to PT to see Ms. Cody and Ms. Becca. Ms. Jeannine, Theo's dietitian, met us there too! I walked them all through our plan with Cigna and they also agreed to fill out some extra paperwork to get covered by Cigna. We really do have the best team! Ms. Jeannine and I also talked about a new feeding plan for Theo.
Theo had four observable seizures today.
Weekend:
We had a very busy weekend! The weather was nice and we took advantage of it! On Saturday we went to the Legacy Ranch to get pictures with Santa and the horses. We brought Theo's red button with the rooster crow from Peek-a-Boo Barn because it makes him laugh! Hopefully it produced a nice smile for the picture!
[Only Josh and the rooster can get him to smile like that!]
After pictures we bought some cookies that were made by the Life Styles class and we also got some hot chocolate. On our way home we went to downtown Minooka to check out their Christmas Market. It wasn't very big, but they had some fun booths and it was a really nice afternoon to be outside.
Theo got a little sad today, but cuddles with dad made it all better:
I've really disliked the Jets since they beat the Chargers in 2010. I was at that game with my brothers and my dad. Jet fans are really loud and annoying!
Who goes 14 consecutive seasons missing the playoffs?! J-E-T-S JETS JETS JETS!
Happy birthday dad! 🎉🎉 I hope you have a great day! Remember when we went to Egypt?! That was pretty fun!
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