Worry, frustration, money and the will to never give up

Yes, yesterday we were in the hospital, Freja had pain in both her feet which is good when you have to visit a physiotherapist and occupational therapist. But as usual Freja chooses when she shows that she has pain or not which is both positive and negative of course. She has a fighting spirit of its own but a little too difficult for her own good to pull the handbrake for her own good so we adults have to help her with that.

We plan to try to get an assistant who is with her at school just to guide and keep her at a reasonable balance so that she saves or distributes her energy in the best way. The teacher has suggested taking a break but then there has to be a really good reason for her such as being able to lie down with the plate and play some game for her to agree to take a break, we all know that the break has always been the most important highlight for all of us throughout the school years.

She will be able to bathe every week at school which will help her a lot to save her body and energy, then the opportunity to change positions during lessons, rest when she needs to and simply change body positions because she can't sit for that long during the day.

It's hard to see and hear your child complain about pain, it takes a toll on you and you want nothing more than to take over what she's carrying, give it to me I can take the pain. Tiredness and pain are now more unmanageable at home where rage and crying attacks replace each other on her.

The occupational therapist has now ordered two new chairs with electric function so that she can control her seat better herself. Then she was recommended knee supports, and wondered how her sleep is and it's hard to answer since she now lies in her own room and bed and sleeps, I know she sometimes wakes up at night. Sleep is super important to feeling good, so last night I put my iWatch on her to see how she sleeps for a week.

Her bed is also not optimal and I would have needed to buy her a Tempur bed or mattress but the money is not there and this is not something we can get so now I am looking through the municipality if there is any help to get just to give her better conditions to cope with school. Who doesn't want your child to feel good? I will also check if you can get help through additional costs from the insurance company but god everything takes time, is hard and frustrating and you feel powerless when you can't just press the buy button because honestly I would have bought the whole world for her as long as she feels good and has a good time. But everything is governed by money, it doesn't matter what it is about, everything costs and now you are in a situation where you don't know what the hell to do to solve and fix everything, sometimes it is too much. I also want to be able to have the opportunity to give her nutritional supplements to increase her energy and satisfy her intake that she sorts out in food such as fruit and vegetables. She has two values ​​that point a little in that direction, but getting the healthcare system to open its eyes and realize that they are not living in the 50s and realize that diet is a big part of one's life and prevention of diseases and well-being seems hopeless. They seem to believe in their fantasy world that all children eat broccoli and spinach and herbs on their plates apparently.....

Freja has been interviewed by the newspaper so within a couple of days we hope to read a nice article about her. She is also so excited to fly down to Gothenburg soon for the Marfan meeting for a whole week. She thinks it is so fun that her big sister is coming along. Our schedule will be packed with lectures all week and we hope to come home with a lot of experiences, meetings and knowledge, but above all, Freja finally gets to meet other children with Marfan who are like her, she says.

Freja's syndrome affects all of us here at home and now it has really shown what it is going for when she is so tired and can barely bear to go to school.

I'm struggling, looking for help, everything you want to do costs money.... I've looked into an infrared sauna, I want to buy one someday, she loves heat and I've read how good it is for body aches. I also want to get a bubble bath, this because it will also help her feel good. She swims every evening because it feels good for her body. She has been lying in the pool all summer that we heated up to 35 degrees and this was a sadness for her to take away now before the fall.

Yes, you can go to the bathhouse, but not the warmth of floating around and a significantly higher noise level...maybe not as relaxing as at home alone in a warm pool.

Freja is also recommended by an occupational therapist to also rest from all sensory impressions, which also takes a toll on her battery...so yes, I feel that I have some challenges ahead of me.

Well, now she has come home and sits and plays with her big sister for a while. I'll see how she's in the mood now that I'm going down and how much energy she has to do her homework because we've had to put that on hold after talking to the teacher, she doesn't have the energy to do that when she gets home... but one thing at a time, now we're going to try to arrange so she can be at school, that's step one and I'm working on trying to solve it.

Have a nice day all readers

Love and Respect

Petra