What happens now?

Yesterday Freja was at NUS and x-rayed the entire spine to see the curvature she has, hope it's small and doesn't give her more pain than she can feel today. We will see what the message will be and how we should think in that case. You don't want the kid to become one with the disease, if you understand what I mean, but it's difficult when she's so small, so you don't really know how to handle all the discussions with her. I try not to ask leading questions, but now she's getting bigger and wiser and she actually says when she's in pain or tired in her body.

You want to make this trip as good as possible and introduce the idea of ​​freshness to her. Many adults live in their ailments on a daily basis and limit themselves because they told themselves that they can't etc...well then they depend on the situation of course when we talk about limitations...Freja must be allowed to play but there are things she absolutely should not do, such as stretching joints, contact sports etc...

Living in motion is good for everyone, that's why we've tested the therapy bath in Umeå, a hot water pool is good for the body and he can splash around and feel good. It's difficult at her age so free play is the best physical therapy because when she gets older she will have real exercises to do to make her body feel good.

Yes, but now we have to wait and see what is seen in the X-ray...

Another concern since the turn of the year is that Freja has difficulty holding urine, I have raised this with the Marfang Group in the USA if it has anything to do with the disease and it cannot be ruled out because it could be nerve damage in some way, but the investigation continues into this . We constantly remind her about the toilet and some days it goes great and other days not at all because then she pees herself all the time. If it has nothing to do with the disease at all, it turns out, but we take it one day at a time and work on helping her.

Also sitting and waiting for an eye appointment at NUS when the phone rings, next week there will be two visits to the hospital, one on Tuesday to the occupational therapist and on Thursday to the eyes to check her right eye which they couldn't measure last time. They were going to send home eye drops so we give her before the visit. Hope to GOD that she doesn't have to have premature surgery on that eye now that those in Gothenburg were hoping we could put it off until an older age.

At the occupational therapist, we will discuss aids etc. what we can and cannot get...I would like her to get a proper mattress for the sake of her body so that it is properly rested.

Maybe it's time to fix the compensation for all drives into Umeå, after all 14 miles back and forth and the fuel costs the shirt!