Occupational therapist and vision examination

Yes, then they went to the occupational therapist to discuss aids for Freja and her pain and how to make it easier for her in the future. Wow, what a committed person! Otherwise, I feel that I have had to pull everything myself with all the questions and concerns I have about Marfan syndrome. She would make sure things happen and that people I have questions for give feedback.

Otherwise, in terms of information, it is Facebook that applies and the global Facebook group where I keep up to date and try to learn. It is of course a horror to read about all the heart operations on small children and lung collapses that affect many at a young age. This also helps me to look for ways to prevent this.

Freja got a little exercise to strengthen her wrists, which are very mobile, then she got a weighted blanket to test so she gets a better sleep because she spins and moves around and dreams a lot at night. I actually experience an improvement in her sleep. An ergonomic chair has also been ordered for her so she will hopefully make it easier for her body and can sit still when she eats and when she does crafts. I didn't take any pictures there, forgot about it but I will next time. Freja thought it was exciting there because she got to rummage through the occupational therapist's therapy cabinet :)

Eye exam two days later with pupil dilating drops...

I don't understand how they can get a good result, I really don't understand, they are children and children are children if you say so, they are serious for a few seconds then laugh at them and do other things. Freja is apparently as talented as they say, but I see it from my side when she is mischievous and doesn't look at the board and does everything else hahaha. I am impressed with how they do the job they do. But now new glasses will soon be ordered. We are waiting for them to keep an eye on the round to discuss if Freja needs a trip down to Gothenburg because that is where they are experts. It applies to the eye that has not yet been operated on Freja, which needs to be discussed. We're keeping our fingers crossed that she doesn't need an OP right now, but that can wait. But I feel that she squints a lot in that eye now.

Well, we can see, of course this is part of the disease, so now it is to do everything we can so that she can see as well as possible, that is the only thing that is important because she will never be completely well.