Diabetes-Johanna

Känner att jag nog ska göra ett inlägg utifrån hatattackerna i VM och det stundande valet Sverige ska göra för framtiden. Jimmy Durmaz var så hyllad efter insatsen i kvalet och det är förvånansvärt vad snabbt "fansen" vände honom ryggen efter matchen mot Tyskland i lördags. Att kalla honom diverse skällsord (rasistiska skällsord), fälla diverse rasistiska kommentarer och mordhota hans liv, hans frus liv och hans barns liv... ja det har sänt oss, de riktiga fansen, i chock. Det är ett fruktansvärt beteende. "I med- och motgång tillsammans" det är så man är ett riktigt fan. Eller som min kusin skrev "i landslaget är vi gula och blå, inte svarta och vita" och så tycker jag att det alltid är. Ja vi ser olika ut men det har vi alltid gjort; en är lång och en är kort, en är normalviktig och en är smal, en tycker om gröna kläder och en annan gillar rosa, en har blåa ögon och en annan gröna, en har nästan vitt hår och en annan helt svart. Varför spelar hu...

Well after a Swedish Midsummer celebration at the camp site with a lot of goddies it was back to reality yesterday. I did one episode cardio in the morning and then one episode cardio in the afternoon alongside some allround exercizes and now my muscles are really burning. When I went to sleep last night my legs were really restless so I had trouble laying still but I was so tired and it's better today but the muscles are so tense. I was planning to do something today as well but now I guess I'll have to wait and see if I even have the strength to do anything. Last week before we're of from work for the summer... it's gonna be a long week... and I'm already tired...

Being a special needs parent is different! Imagine being overjoyed about your kid rolling of the couch - of course not because it hurt them but because they managed to roll over. Or being overjoyed because your baby shewed on... well anything really cause it means sparking that curiosity that most kids have early on. Imagine being burnt out from worrying, from fighting for your kids needs and rights, from making every appointment, from waiting for the diagnosis, from being left to fend for your own family, from feeling like you are all alone. But you're not! There are so many familys in the same situation and they need someone to connect with as well. To be allegable for the Swedish Habiliation unit you need to first get the diagnosis wich leaves a lot of familys in nowhereland while they are waiting for the diagnosis. We waited for 9 months, however our specialist unit helped us getting assessed by a psycologist that could refer Freja onwards to the Habilitation u...

We've been talking about the Swedish welfare system for children and people with disabilitys. The running party did downsize that welfare system a few years ago and have now changed colors pending the upcoming election. However that downsizing period did a lot of damage to people, parents, familys and childrens lifes in order to get to those cheating the system. In my opinion there is a very easy way to get to the cheaters - LSS need to cooperate with the Habilitation unit. That way there would be no middle man able to cheat and all LSS really would need is a consent from the person or the parents. Easy... Freja is disabled so we have nothing to hide and no reason to cheat the system so please... get my consent and just help us without us having to go through such a long process or having to wright the longest application (again) cause the Habilitation unit could just deliver that directly! I mean... our lifes will already be hard - always! So why does everything surro...

So we really do think that walking will be Frejas next move. Since she started crawling last year after her 2nd birthday she also started standing against furniture so it's been a long process but she will probably start walking in the next few months. And that would just be... increadabe! Everything that Freja undertakes is a really long process and we are so grateful that she is still evolving and moving forward even though she is so much later than her pears. She is our little trouper. Even though she is still developing in the right direction I have a hard time believing that she will ever talk. I know a lot of PTHS kids start talking very late but to me... well I just don't see that happening. It would truly be the greatest gift if she would! There is Always a lot of feelings surrounding Frejas being, her overall day, her development, her mood... it's hard not to understand your Child after 3 years cause she doesn't know how to make herself underst...

This increadable weather is holding on! A bit cloudy today but it's still really warm. Been looking at our Pictures from our wakations with the caravan last year. I was really negative and didn't really Think it would be suited for us but to my surprise it was really good. We enjoyed it so much and all the kids seemed happy. This year presents a new (welcomed) challenge with Freja crawling all over the place and hopefully she will walk at the end of summer our maybe come autumn. However we've been trying to come up with some solutions for the outside space for Freja so now we have a large plastic carpet for her to crawl on and we will be putting up wind shields as a fence. I think it will work nicely. This may very well be the last year in this caravan cause the girls are all growing tall so fast and now we are looking at finding a caravan with three story kids beds so that we all can fit in and sleep comfortably. Well... that's another project for our litt...

Well now we've had tropical heat for several weeks here in Sweden and we are really not used to that and Freja is not a happy camper. I don't know if it's PTHS related but we have discussed this is the PTHS Facebook Group that maybe these kids don't really sweat!? And I have considered Freja having trouble regulating her body temperature and of course if she doesn't sweat then she is not regulated so we just have to wait and see. Maybe the doctors know something or maybe the conference in Amsterdam resulted in some knowledge regarding this!? There will be another conference in the US later this month I think. Anyways Freja is going around in just a diaper all day and when she is going to bed for the night we need to have a fan in the room. Poor little baby. Even the big kids Think it's too hot at night time so yesterday Klara couldn't sleep and we had just found another fan in our garage so we had to put that one in her room just so she could fall a...