We’re back! Not just to update the blog, but also in Texas for a check in with Max’s team. I haven’t updated in a while on here. Here are the major takeaways:
- When Max was released, it felt oddly anticlimactic. We hung out at Ronald McDonald House for a few days to make sure we could function outside the hospital after being in the joint for almost 30 days.
- We flew home September 22nd and have been trying to learn to be regular people which is a weird but in a good way problem.
- Max has been kicking butt at PT 2x/ week. He had been bed bound for a month pretty much and it caused some major deconditioning of his core and quads. He has made SO much progress with gait, stamina, balance, and his attitude is inspiring.
- Both kids have been loving the new house and new schools since we moved right before the big trip here.- still not unpacked.. Maybe never will be?!
- I resigned from my job of 17 years and took one in Max & Frankie’s District. I will be at Max’s school and on their same school break calendar.
- We adopted 2 guinea pigs formerly known as Click and Rick, now known as Spot and Rusty. They are hilarious little furry potatoes who deliver serotonin to our house daily.
- Max has a bearded dragon named Bernie Sanders who is very mellow and awesome. Max is loving having his own pet to take care of and being very responsible for him. If you come over, he will take you on a tour and provide a TED talk about Beardies for you.
- We haven’t seen any seizures since some little aftershocks/ eye rolling movements due to swelling in the area of his optic nerve on the day of surgery.
I know I buried the lead there. Knock on wood, throw some salt over your shoulder, spit in the wind, anything, please. If you know me, then you know that I have become more than a little superstitious. Things were terrible for so long and we’d been in crisis mode for years. We’re trying to learn how to function without constant emergencies happening. I’m unsettled by not running on straight adrenaline every single day. It manifests in strange ways. I have PTSD. I am definitely experiencing that as Max and I are back in the same hotel we stayed at when we were here in the Fall. I took him down to the hotel breakfast and the smells and setting brought me right back to the last time we were there. He had a bad status seizure and I had to get him back upstairs to administer his rescues and Matt and I missed each other on the elevators. I am hoping to rewire us both with some happier memories over the harder ones but it definitely hits like a punch to the stomach at very unexpected times.
We only had two appointments lined up for follow up during this visit. We needed to do imaging Friday. We had brain and abdominal MRIs and then we meet with both surgeons Tuesday. Max has a significant amount of medical anxieties and trauma because of everything he’s gone through. I think this is especially true for him, since we’re back to where he had so much done in such a short amount of time. It’s like emotional muscle memory. Despite being very nervous, he’s been a rockstar. We make sure to prep him for things beforehand so he can ask questions and know what’s coming.
The MRI was frustrating because that took some serious pre scheduling. Some of the planning was due in part to Max’s RNS. Although it is only set to detection mode, and not stimulation, it needs to be turned to MRI mode in order for Max to go into an MRI and not have the machine completely drain the battery. We had put in a request to get some abdominal imaging done because Max’s kidneys haven’t been imaged since his Tuberous Sclerosis diagnosis 4 years ago. We’re struggling with finding a solid team at home and coordinating the best care so we figured if the RNS would be off, we could get the most bang for our buck. Everything was scheduled and the appointment was set for 10:30. We were told it would take 2 hours. Max hates IVs and is a rockstar about sitting still so no sedation was required. He and I arrived at 10 because just like the airport.. I like to arrive early to sit and wait…just in case? (thanks anxiety!) . They had some coordination issues so things didn’t really start happening until 12:30/ 1:00. It was pretty brutal. Max needed an IV for contrast and I hadn’t prepped him because I didn’t know. That caused a lot of anxiety. Then we ended up being at the hospital until 8pm. They would do ½ an hour of images in the machine, then ½ an hour out and rinse, wash, repeat. I think it has something to do with exposure to the machine. He was tired and hungry because we hadn’t eaten since 8:00 that morning but he pushed through because he’s Max. We made it! We ate some delicious chicken salad, video chatted our favorites, and relaxed. We’ve been squeezing in some visits to Max’s favorite Houston spots in the meantime between appointments. I think it’s helping to create some good memories.
I am looking forward to meeting with his surgeons tomorrow and hearing what the plan is going forward. We have been trying to learn to relax and enjoy some normalcy. It’s very hard to let our guard down because we are conditioned to expect the worst because we honestly have been living it for so long. We don’t know if this wave will last, we’re making sure the kids are enjoying it and we’re trying really hard to let our guard down.
Thank you so much to everyone who has been checking in with us and asking after all of us. We appreciate your support more than I could ever say. It means a lot to us to have so many people thinking of Max and our family. Things are less terrible when you know you’ve got so many people pulling for you.
