We are slowly adjusting to life back at home. You’d think that being free at last from the hospital, you’d want to be out and about every day! Getting Tintin to leave the house takes a little bit of encouragement but she manages fine as long as she’s with somebody she knows and trusts. This is because of the short-term memory issues that I think I mentioned in the last update. I’m not sure what it feels like, but I imagine it’s something like what Dory goes through, and you forget what you were supposed to be doing. I called and spoke with Dr. Rosenberg the other day, about having him be our neurologist to follow-up with, and he delightfully said yes, and he mentioned that the memory thing can sometimes take up to a year to heal.
She will be doing her speech and occupational therapy here by the house at Casa Colina in Azusa, and the speech is the one she will probably dread the most lol! It’s like going to school again for her, and she’s not the best at math or spelling as it is, so I hope they don’t think it has to do with the illness! Nope. That’s just my Tintin! She makes up for it by being an awesome loving person.
As you may have seen on social media, she went to the fair twice this past weekend, and she walked at least 2 miles easily each night. She keeps eyeing the electric carts that you can rent, but I encouraged her to take breaks as needed and just people watch. I said maybe if we go for an entire day or something, then we can rent one. She got to witness Alina see her photos and artwork for the first time, on display at the fair, which was all because Tintin had them take pics and do colorings so that she could submit them to the fair. Both Ray and Alina got a few first place and second place ribbons! Thanks auntie Tintin!
She is now caught up on Game of Thrones. Actually, she is catching up on quite a bit of her tv shows that we’ve been saving on our Tivo for her. Shocker that this girl remembered how to operate the tv remote, but can’t remember what drawers to put her clothes away in! Sounds just like the girl I know, mmhmm. Maybe I can slip the occupational therapist some money on the side to teach her some of these cleaning routines and organizational skills, lol. Tintin 2.0 coming soon!
Sorry if she hasn’t been responding to your texts or phone calls. She’s been avoiding her phone like the plague. I think she is still very shy, or insecure and doesn’t know what to say to most of you. Don’t take it personal though, please. Here’s a perfect example of what I mean. Nini was coming over today to pick her up and go run a few errands with her, just to get her out of the house for a bit, and before Nini arrived, Tin asked me “when I go run errands with Nini, do I just wait in the car or do I go with her?”. She’s so innocent and sincere about it, and it makes you wanna cry. It’s like I want to protect her from everything out there, but I want her to build up her confidence of going outside and seeing things, and dealing with the everyday sights and sounds that are currently overstimulating her mind. I see it at the fair when we walk through the carnival area and there’s music pumping from one direction, simultaneously while a ride is going and you hear 5th grade girls screaming at the top of their lungs, and then there’s the carnies shouting at you to play their game. You’re being bombarded from every direction! I’m hypersensitive to all these things now because I’ve got my head on a swivel for any and everything that may bother her. She complains that it’s too loud or too much, but not sure if she is just unable to concentrate cause of the clashing of all the sounds. It is quite a chaotic setting and probably isn’t the best place to take her in the fair, but she gets through it and I firmly believe it’s helping her get stronger in her recovery. She has her moments of confidence and her old self though, as in stuff like her pic she posted on Instagram, famous random hashtags and all! So you see…she’s working on it!
If you want to come by and visit, just text me or msg me on Facebook. We’re usually here unless we have appointments or something. I work from home, so that helps tremendously. I’m sure she’d love some company just to sit and watch TV with. She probably won’t have much to say in terms of a conversation, but if you’re cool with that, then come and kick it! I think small intimate visits work better for her, because as we’ve seen with big group gatherings, she tends to just want to go hide and lay down from the overstimulation. We just got to give her time, that’s all. Okay guys, thanks for still keeping her in your hearts and mind. We’re far from out of the woods, but we are on the trail to recovery!
They found the teratoma!!! Yes, you read that right everybody! The doctors have finally found what they’ve been searching for since Tintin was diagnosed with Anti-NMDA Receptor Encephalitis. You’re asking what this means right? Well, if you’re like most, you probably haven’t researched what her disease is about and what typically causes it. Teratomas found in the ovaries are the most common cause, and FINALLY they found and removed one from her left ovary. We’re hoping that this is it.
She’s already been on a positive trajectory since she was admitted to the rehab hospital on Tuesday. The Physical, Occupational, and Speech Therapists have had her busy each day doing things like walking without a walker (see the video I attached), taking a shower sitting on the bench, and reading, writing, and arithmetic. She’s young and strong so the physical stuff is coming back really quickly, but like I’ve mentioned before, the memory and brain functions will still need some more exercise before we can say she is 100%. The best thing is that she may be able to come home soon! No need to keep her here for that part. We can do that as outpatient I’m sure.
So basically, I feel like the weight of the world has been lifted off my shoulders with the doctors finally finding the teratoma and removing it. I vividly remember talking with Carla, the friend of a friend who went through this same ordeal, and her telling me that it would be awesome if they found a teratoma on her ovaries, because it would mean once it’s removed, everything goes back to normal. I really hope this is it!! Tin’s sister Michelle said she’s never been so excited to hear about a tumor being found, lol. Me either Michelle! Me either. Whew! Looks like that party is coming sooner than later. Love you all! – Billy