We were contacted over the weekend by Mobility Works. They said the Chrysler Pacifica was ready for us! Eek!
Monday, November 28th:
After I put Theo on the bus I met Josh at Mobility Works. The Pacifica was there and looked all shinny and clean! I brought my DVDs and made sure that the DVD player worked and I knew how to use it. Everything looked great, so we signed the paperwork and handed over the keys to our Traverse.
[Four tie downs for Theo's wheelchair]
[Backseat]
[TVs]
I am sad to say goodbye to the Traverse, but this van is going to be so much better for all of us.
I left the dealership and headed to Walmart to pick up a few more cleaning supplies. I am so determined to get that cigarette smoke smell out of the stander pads.
That afternoon Josh met me at Theo's school so he could see Theo the first time he used the ramp.
Theo loves to be in his wheelchair, so the transition was easy.
I took Theo to PT and then we went home and had a Zoom meeting with our PUNS list case worker. She asked a bunch of questions and said that we qualified to get on the PUNS list. This doesn't guarantee us services, but it's a step in the right direction.
That night I joined our annual Zoom meeting for our local HOA. I was the only other person on the Zoom besides the board. It was a quick meeting, but I like to know what's going on in the community (did you know that beavers keep causing problems in our pond?!) and they said that our HOA fees were going to raise slightly in 2024. See? Good to know!
Theo had one seizure today.
The next morning (Tuesday, November 29th) I received an email from Holland American letting me know that my case was closed, my money had been refunded, and that they are very sorry for the confusion. It's about freakin time! That was beyond frustrating.
After I sent Theo off to school I went downstairs and finished my running series with Knox. We ran all over South Africa and it was a lot of fun! I'll definitely do another series with him in the near future.
Theo had another great day at school and has been asking for "more more" yogurt during snack time!
[Art]
I gave these darn pads so many scrub downs with a combination of dish soap, baking soda, vinegar, and hydrogen peroxide and they still smelled. I then sprayed them with a bunch of different "odor reducing" sprays and those didn't work. Finally we bought an ozone air purifier (we have one for the condo to get rid of smoke smell). We put it in a box with the pads, sealed it up, and let it run for three hours.
[We couldn't seal up the box completely, so we sealed up the room too]
After three hours I went in and smelled the pads and the smoke smell was GONE! It returned a few hours later, but it was very faint. Over the next few days we alternated between the ozone machine and sealing the pads in the box with charcoal and putting the box in the sun. The combination of these two did the unthinkable and the pads no longer smell! It's a Christmas miracle!
That night we weighed Theo so we could discuss his weight with his dietitian tomorrow. Even though she had reduced his calories he is still gaining! It's hard to burn calories when you sleep a lot and aren't very active.
Theo had three seizures today.
The next day (Wednesday, November 30th), Josh, Theo, and I headed up to the Lurie Children's Hospital of Chicago's Epilepsy Center to meet with the Epilepsy Specialist. It only took us an hour to get from our house to the parking garage, which isn't too bad.
[Theo fell asleep during Moana]
We found the right floor (it's strange to be in a high-rise hospital) and met with two nurses and the doctor. The meeting lasted about two hours. The Specialist was great and listened to all of our concerns. I told her that we were concerned with Theo regressing and that the four meds he was currently on were working (he is down to about 2 seizures a day), BUT they make him SOOO tired. It's awful. After listening to our concerns she asked us a lot of questions. After she gathered all the data she made the conclusion that Theo needs intervention. She said that we can continue to adjust his meds, but she feels that he is an excellent candidate for VNS or RNS surgery. Josh and I agreed and we told her that we would like to move forward with surgery as quickly as possible. She told us that they would need to admit Theo to the EMU (Epilepsy Monitoring Unit) for 4-5 days for testing. He will need to undergo a CAT scan, an MRI, and a video EEG. Once they have collected enough data they will present it to all of the Epilepsy doctors and they will vote on the next steps (likely VNS or RNS).
We also discussed Theo's current medications. The clobazam has been the best for reducing his seizures, but it makes him the most lethargic. Currently he takes 2 mls in the morning and 5 mls at night. She said we can give him the whole 7 mls at night and that should help him to not be so tired during the day. We then discussed Theo's future care. She said that they were willing to take him on as a patient and they would be able to provide care for all of his Neurology needs. She then had us take Theo downstairs for some bloodwork. Before we headed out she said that a scheduler will be calling us soon to talk about dates.
Overall the meeting with the Epilepsy Specialist went great and we are looking forward to working with the team in the near future!
It took us TWO hours to drive home from the hospital (it's on the Near North-Side of Chicago). While Josh drove I Zoomed with Theo's feeding/speech therapist and his dietitian. They are also very excited for Theo's next step with the Epilepsy Specialist. We also discussed Theo's weight gain and his dietitian suggested that we decrease his food intake slightly again, but she wanted me to consult with his GI Specialist first.
After we got home I sent an email to Theo's Neurologist, Dr Sinha, letting him know how the meeting today went. Dr Sinha was the one who recommended that we get a second opinion from the Specialist at Lurie's. I thanked him for all his help and let him know that we were going to move Theo's care to Lurie's. I also emailed Theo's GI Specialist about Theo's weight gain.
[The Lakers aren't in last place anymore]
Theo had three seizures today.
Thursday, December 1st:
I put Theo on the bus, did a strength training workout, and then headed to my appointment with my esthetician. The last few times I saw her she did a microdermabrasion and a facial, but this time she did a dermaplaining treatment. It was so cool and my face felt amazing!
That afternoon I picked Theo up from school and took him to OT. Everyone was very excited to hear all about our experience at Lurie's 🙂
I also got a call from the scheduler for Theo's EMU stay. She said they can get him in the week of February 6th, but she MAY have a cancellation on January 3rd. I told her that if January 3rd open up (or any other days) we will gladly take it!
Theo had one seizure today.
The next morning (Friday, December 2nd), I put Theo on the bus, ran a few miles, and the met up with Josh at Costco. We bought a bunch of Christmas candy and some cute toys for Theo's classmates.
After I got home I started putting together Christmas bags for all of Theo's therapist, classroom helpers, and friends.
[Aren't they so cute?!]
As I was about to leave to go pickup Theo from school I got a message from his teacher. She said that he was having a cluster of seizures. I told her that if he had one more seizure before I got there that they should give him his emergency pill. When I arrived at the school I was met by Theo's teacher, his OT, his aid, and the school nurse. They all looked so worried. Ms. Jess told me that he did have another seizure so she gave him his pill. She then said he had one more after that. While we were talking he had another one, but it was very small. I told everyone that Theo will be fine and that they did the right thing.
Ms Jess thinks that Theo got overwhelmed with their class field trip today. They went to Walmart to pick out some gifts for a charity. She said Theo was really excited when they got on the bus, but was really upset when they got to Walmart. Usually he loves to go to the store and walk around, but I think he was just overwhelmed and didn't like the change of scenery. When he gets on the bus he is supposed to go to school or go home. That's it. Getting on the bus and ending up at Walmart wasn't right to him. Theo likes consistency (don't we all?), so I agree that he was probably confused and overwhelmed, which can cause seizures.
It's been a while (June 13th) since Theo's had nine seizures in one day. Of course, he was fine, but he was extra tired when we arrived at PT. That emergency pill really knocks him out.
Over the weekend Josh and I worked on things around the house while Theo rested and played with his toys.
[I got a massage table for the van, so I can change Theo's diapers in public]
[Bolt for the swing/lift system]
I made Theo some diary-free chocolate pudding and he was really into it! He kept licking his lips and chomping!
Since the pads for the Gazelle stander were odor free, Josh put it back together and then we put Theo in it.
It's super cool because it tilts all the way back and you can load Theo while he is laying down.
He looks pretty good, huh?! We just need to take out one of the pads, lower the headrest, and fix the left foot hold. Easy!
We are going to install a ramp in our garage for Theo's wheelchair. To make room Josh bought a shed and moved some of his supplies out there.
Next spring Josh will probably make a pad and put the shed on the side of the house. But it can stay in the backyard for now.
Theo only had two seizures on Saturday and two on Sunday.
It's sad and pathetic that this needs to be stated over and over again in 2022, but it does. The Holocaust happened. If you don't believe it did, I really hope you will take some time to reflect on yourself and why you believe that.
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