Brief summary of everything that has happened since the last...

Yes, my God, what a journey every day is, both up and down, now I think it's mostly chaos and trouble with Freja.

Sees that I haven't even written since last spring but the days are filled with something to do constantly. What also happened last spring with my eye was cracking to see as if through water, sickeningly difficult and I didn't dare to drive a car for a long time because my vision was so sickeningly bad. (swelling, fluid in front of the macula)

Today it has finally healed and I can see "normally" which is of course liberating. You have to stay away from stress, hahaha ok...will be easy, or not. Likewise cortisone which can affect this condition.

What happened before the summer is that Freja started limping a lot, she complained a lot about pain in one leg, the tibia. I contacted Freja's hospital regarding this so we got time. There were four people in the room, physiotherapists, occupational therapists and a doctor. The doctor squeezed and felt so hard that she had bruises the next day. Doctors said that if it had been a fracture, she would never have been able to squeeze like that, and she did. Doctors recommended rest for two weeks in case there was any inflammation, plus she was also recommended to take anti-inflammatory medication. . The pain and limping continued and escalated, I had to chase doctors again. This time we were called in for an X-ray. They could find some swelling in the leg but couldn't really see what it was. They didn't really think it was a stress fracture so Freja was referred to an MRI. We went on holiday in Skåne and Freja had to take it easy until they showed what it was. They wanted to rule out the worst, i.e. tumor.

The MRI went well, Freja falls asleep very quickly on just the nasal spray she gets so she never has to feel needles and other nasty things. Now she has been sedated a couple of times so we have gotten a bit of a routine with it.

We had such a good time in Skåne, so lovely to meet the whole family. Freja finally got to be by the sea but the water was sickly cold so no one could swim so it had to be my mother's pool and the pool at my little sister's house instead.

At home we had a pool and I bought a pool heater because Freja really hates when it's cold, her body hurts, she says.

So in the water we floated in and took it easy while waiting for X-ray results.

The answer came and it turned out to be a stress fracture, which they didn't believe because she is too small for it, but they could tell that this was due to high strain and because of the Marfan that she has. So Freja was completely plastered, from the foot up to the end of the thigh, four weeks, it didn't end there...Jonas had to bring out his father's anger that incompetence arose where the occupational therapist refused to give out a wheelchair and thought she should walk where needed and then sit inside for 4 weeks. Thought Jonas was going to explode, I was almost silenced by shock....

Freja already has restrictions where she should not walk so much on hard surfaces and conserve her strength and now she would throw out her leg which was fully plastered and also put extreme strain on her pelvis! My dear partner did not give in and demanded a wheelchair for her. Another occupational therapist came in and with him there was no talk of her needing a wheelchair. That it will be necessary to argue about everything? I am shocked at this ignorance about her illness.

She got pain pretty soon in both her feet and knees and didn't think the plaster was particularly fun, luckily it was possible to bathe with the plaster so she could actually do that a bit, but she chose not to do it anyway because she thought the water was too cold despite the heat pump .

After a couple of days we had to go in and reinforce the cast because she is so active and cannot sit still. Freja ran and played with the fracture before she was plastered. She has an insanely high pain threshold so it is super difficult with her pain. After two weeks it was time to change the plaster and then she chose a white plaster so she could draw on it.

We bought her a nintendo switch, best purchase ever because we could finally get her to sit still and take it easy, yahoo!

We've had a good summer, but one that was marred by frustration and pain for Freja. When they then removed the cast, she couldn't even stand, yes, of course it's common... you lose the muscles quite quickly after a month with a cast, but what about Freja's condition? How are you affected when you have Marfan? She had to use a wheelchair for a while because the pain was bothersome for her and it was the foot and the knee that were the culprit now.

Now time has passed here, people have been conspicuous by their absence, I mean the so-called Team behind Freja that doesn't seem to exist. So she's been left to her own devices with the words, it's common for it to be like this after cast removal....

Where do I stand today?

Well, pissed off, frustrated and damn disappointed! Why wasn't the physiotherapist waiting for us when they removed the cast? You have had to chase people yourself and no one does anything.

Now Freja can walk anyway, God knows if the fracture healed, but it should do so they said...no team, no one who cares, just words and refer to the orthopedist who at the next turn says it's completely normal but then in the next moment nothing can be done about Marfan.....he was the one who thought Freja should walk around in plaster and not need a wheelchair...he was the one who didn't think about her hips and other joints that they would take a beating from improper loading. ..yes they were him...

Today I asked for a new physiotherapist because I'm tired and don't think that the one who was Freja's physiotherapist was the most active! I think she needs help on the spot, that they stretch and have training with her because at home it doesn't work...there will only be conflicts, it's enough to make noise if you ask her to go to the toilet and pee so it doesn't get in her pants. I am tired and angry, I am frustrated and speechless at the same time at this flatness and disrespect towards my child.

Remind yourself that today you have to be smart and healthy enough to handle healthcare, thank god I'm the one! I am a lioness who will do anything for my children and am prepared to fight for my life if I have to!

Freja was at a birthday party last Saturday, two hours.....those two hours made her legs hurt so much that she had to take painkillers. Understand then that preschool for a whole day is out of the question and how damn hard it must be to get this into your head as a doctor or physiotherapist.

My goal is to give my child quality of life and it is NOT to run out of the little body she has today because she will have that body for the rest of her life...what she does today has consequences for the next day etc...so you have to think going forward, give her the social part of preschool, of course, but in the right way so that she can last longer! We would be allowed to keep the wheelchair, it is for long walks to save on "unnecessary" walking... for example when preschool goes to the forest, then Freja can ride a wheelchair there and then play in the forest, then she has simply saved her body .

Now we'll see if there's a little fire in the butt of the doctor after my conversation with Freja's occupational therapist who promised to press on... I hope it's more than words that apply now because now this mother has had enough of this nonsense!

Love and respect

Petra