Diabetes-Johanna

Nu börjar äntligen min och Frejas 3 veckor långa dunderförkylning släppa! Det har varit riktigt jobbigt med hosta, halsont, snor, feber och gnällig Freja! Hon som är vår lilla solstråle och aldrig brukar vara tjurig! Det blev påfrestande för oss alla! Vi fick dessutom ta en tripp till akuten mitt i natten när hon fick 40 graders feber som inte ville släppa och en massa feberfrossa på det! Lilla plutten! Men som sagt börjar det släppa nu och de senaste 4 dagarna har hon varit en dröm! Glad, skrattande, nöjd och bara följt sitt schema! För mig har de här veckorna inneburit att jag inte kunnat träna och det har i sin tur påverkat blodsockret. Mitt bs har fortfarande hållit sig relativt lågt men istället för den där stabila kurvan så har det varit mycket upp och ner. Nu har vi tränat i tre dagar och det ger effekt direkt - jätteskönt! Det visar också hur viktigt det är med träningen även om man redan äter bra - det samspelar! Idag är det vilodag - det är ju nyårsafton!...

Jag har ju varit lite besviken på att viktnedgången uteblivit de senaste veckorna men förra veckan hände något. Jag vill inte erkänna hur mycket jag vägde som mest men nu har jag nästan gått ner 10 kilo för den senaste veckan gick jag ner 1,5 kilo... helt plötsligt. Det är ju kul att det äntligen börjar ge med sig. Känns som att kroppen hållit emot de där 6-7 veckorna då inget hände på vågen alls men nu kanske de kan börja rulla på. Diabetesen är ju fortfarande fantastisk. I förra veckan har jag inte kunnat träna pga dunderförkylning (har fortfarande lite ont i halsen faktiskt) och det märks på kurvan. Det blir jämnare kurva när man tränar och nu är det mer upp och ner även om det inte blir så många superhöga värden men det blir liksom inte den fina, fina kurvan som jag har haft utan toppar och dalar. Det bara visar hur viktigt båda delarna är för diabetesen. Kosthållning OCH motion/rörelse. Båda delarna har faktiskt gått väldigt bra sista tiden, portionerna känns helt...

Jag fortsätter att räkna mina kalorier och fortsatt ligger min diabetes fantastiskt bra! Tänk att det kunde vara så lätt ändå! Jag hade verkligen gett upp och bara accepterat att min diabetes var som den var och hade inte ens en tanke på att kaloriräknandet skulle ha den effekt som det hade! Jag tar nu fortfarande samma doser som när jag först fick diabetes för 15 år sedan och jag har fortfarande svårt att fatta det! När jag någon gång syndat och fått högre bs så har jag tagit för mycket insulin för huvudet är fortfarande lite kvar i det som var innan. Men nu har min acceptans för högt bs också sänkts så allt över 10 känns JÄTTEHÖGT för majoriteten av tiden ligger jag inom målområdet, 4-9, som är på Freestyle Libre. Trodde inte ens att det var möjligt. Jag ser ju inte heller detta som en diet, för jag säger alltid att man inte kan gå på diet som diabetiker, utan snarare som ett sätt att lära sig hur mycket man bör äta. Jag har ju ätit alldeles för mycket, för stora portion...

So yesterday we had an ultrasound on Frejas little foot to see if the bumps she got this spring were indeed ganglion, the results were inconclusive. They are a long the tendons and they seem to "grow" from pressure however they didn't really look like ganglion usually look on an ultrasound. Thankfully our refering doctor wasn't satisfied so next is going to be the child orthopeadist. Hopefully we will get some answers. Today Frejas broken tooth is gonna get pulled out. Thankfully David is with her for this one. I've never had any holes in my teeth and have never had to fix my teeth like that so it's a bit unnerving for me so I'm thankful David took that appointment. Next week, or maybe it's the week after that, I will go with Freja to try out new glasses. Thankfully she now seem to understand that the glasses help her and usually lets them stay on. She usually pulls them off when she gets tired - understandably! In between all this she has...

So I'm still on the same weight I've been for the last 3-4 weeks and I just don't get it. I still only eat 1300 kcals per day, I exercise and I try to choose better foods. So maybe next week I will try to go vegetarian, or at least half way vegetarian. I think that for example mixing minced meat with equal part quorn is a good way to start. Also I have a recepy for vegetarian lasagne with aubergine, mozarella and parmesan with a wonderful tomato sauce - so that's one recepy I know I will love. Otherwise there is always veggie sausage, falafel and vegetarian thai spring rolls. Haha... maybe not the best choices... I guess the declerations will determine what I will choose. I do like meze dishes so maybe I'll look for some of those recepies. Vegetarian for the win?

Well my weightloss isn't going too well right now. My body is still changeing due to my counting calories and the exercise but the scale has stood still for almost 3 weeks I'm afraid. This week hubby and I are racing to loose 1,5 kilo each so hopefully it will show some results - but it's still frustrating. But to be honest... this happens every time I try to get a healthier lifestyle going. It takes a long time for my body to catch up and do what every other persons body would have done - loose the weight. I remember before we went to Australia we went to the gym 6 days a week and still my body did not react the same way as my hubbys. I almost didn't loose any weight but then eventually something happened. I took a week off from the gym and just rested and that week I lost a lot of weight and after that the body started responding correctly. Right now a lot of stuff in my life is connected to my exercise and the gym. Exercising gets the endorfins going...

I read a lot of articles about how you can exercise and loose weight... well yes you can but you have to do 7000-7500 kcals to loose 1 kilo. I mean... that's too much. If the goal is to loose weight then it's 90% the food and 10% your exercise - so that's something to Think about if you're frustrated about not loosing any weight even though you're training. My diabetes is still perfect from counting calories and I couldn't be happier. I really should send in an HbA1c just to see the real differense. I'm expecting it to be grand so I really hope that it is but you never know until you get the results. Maybe I'll try and send it in on monday och tuesday. My weight have been still for a few weeks now and it's been frustrating for me as well but now it has started to move again. We've had a couple of weeks with sick kids, being sick our selfs and all routines you get from being at work just went out the window. But... three days back at ...

It's that time of year for me and my diabetes - time for eye screening. Well I have done this a few times during my 15 years with diabetes, it's just a part of living with diabetes. First you get pupil dilating eye drops (they sting), then you have to wait for 30 minutes and then they take photos of the bottom of your eyes in a very dark room. The procedure will show any changes, like small bleedings, in your eyes that are diabetes related. I do have some small bleedings, first showed after my youngest was born in 2015. When you've had diabetes for more than 10 years these kind of changes are common. Because your pupils are dilated your eyes get really sensitive to the light and they can't really focus so you often get blurry eyesight. I had my sunglasses on for at least 3 hours after - even inside when I got back to work. It worked out really good yesterday actually. I walked there (just a few houses away), got the eye drops, ate my lunch while waiting...

So while I'm doing this counting calories I've changed some things during my day but I still eat a lot of the same things just smaller portions. While I'm trying to loose weight I'm set to eat 1300 kcal per day but when I've reached my goal weight I will probably be able to eat 1500-1600 kcal per day - that's a 100 more kcal per meal. Due to my insulin resistance in the morning my breakfast is very low carb or no carb at all. Well this is how my food is planned. Breakfast - 325 kcal: 2 boiled eggs or a protein shake/pudding. Lunch - 390 kcal: Soop of some kind and one slice of bread with two slices of cheese (no butter) is a good lunch. Dinner - 390 kcal: Something more sturdy then lunch just to keep the blood sugar level for some excercize. Swedish fika ;) - 195 kcal: So breakfast is set at 325 kcal however I never reach that level and really with diabetes you need some "extra" calories during the day for snacks, s...

I never thought I would EVER do that but now I am. I've tried many different things but nothing has ever really worked and this way I can still eat things I love - I just have to calculate everything. Although right now pizza and chips are out of the question! Hahaha... I love salty so for me that's a big sacrifice but in the end I know I'll feel better. My diabetes is actually feeling excellent. I now take the same doses as I did 15 years ago when I first got my diagnosis! It's truly amazing. I try to exercise 4 times a week for at least 30 minutes and I'm focusing on cardio. And surprisingly it's going okay even though I don't eat as much and I don't have as many calories to play with in case I get a low blood sugar. The most eye opening thing about this experience is to learn how much more than I need that I've been eating! OMG!!! Now I eat about half the portions I did before so it's no wonder I didn't loose any weight. W...

... have me turning negative. Negative towards the racist party getting such a large amount of the votes. I mean they may "only" be tha third largest party in all of Sweden but here in the South of Sweden they are actually the biggest party in most of the small communities. I mean... what is going to happen with all of that? I don't want them to rule my Community, I don't trust them to do that! That is my kids wellbeing and education at stake. Also negative towards the ruling government to still be ruling. I mean... they have dismantled the whole help system for kids and adults with special needs. We can't trust them... Look at what they've done to these poor families. Feels hopeless...

So starting my journey towards better health! I did buy some fancy training clothes after Freja was born to motivate myself to get back in shape but then everything happened and exercise was not my priority even though it would probably have helped my mental state when I was at my lowest point. However I’m trying to fix that now! My doctor have put me on partial work leave mostly for exercise for my mental wellbeing and my diabetes. And I really need to do this now cause my diabetes could be much better and I really want it to get better. Just hoping I can find a way to keep everything going and a way to stay motivated.

My mom is visiting us for a few days while dad is on his golftrip. We were watching old videos of the twins and it just hit me that I had totally forgotten what it was like to have normal babies. The way they moved, the sounds they made, how they laughed and what they laughed at, the... just the normal and non-pressured everyday we had back then... Today Freja turned 3 years... time has just flied and we have so much going on all the time and sometimes we just forget to enjoy the moments, to saver them. Having a special needs child means to have a more strained everyday. Looking at the videos there were also videos of Freja before we knew anything was odd about her - it was a bit bittersweet. She was so cute, such a sweet baby and how could we ever think something was odd about her.  She is still so cute and so sweet but she is not an ordinary baby and living in it we maybe don’t think that much about it, but when she makes progress we get super happy - much happie...

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...

This weekend has been very productive. We still havn't begun putting the garden house together but now we are almost done with the foundation. I have moved one cubic meter of stone dust from one end of the garden to the other - every muscle is aching. David has placed 70 concrete garden tiles as the bottom frame soo... that was two days full work and we were so tired last night. After that I still had to clean the house and prepare the laundry... zzzzz... In the middle of the night Freja woke up and refused to go back to sleep for about 4 hours so come morning it was chaos and my alarm didn't go of. Somehow the kids got to daycare and I was only 17 minutes late for work - how it all came together in the end I have no idea. Hahaha... Well at work you couldn't really tell that I had that chaotic morning cause I've had a lot of energy and gotten a lot done! Now I'm just excited, and a bit nervous, to get home and see one of our trees being taken down. ...

Freja will turn 3 years in about 3 months and she still can't walk but she is a fast crawler. Our outdoor decking is nice but for a small child that crawls she can easily get splinters. So now we decided to make the decking "Freja-friendly" by laying a outdoor broadloom on top (antracite color) so now she can crawl freely out there without getting splinters and it's really nice for all of us actually. Now we are just waiting for the child safety gates to arrive and then we will have a huge playpen outside for Freja to move around in! How great is that!

We have always said that Freja is the most content and happy baby you could ever get... well now she has gotten herself a temper! We know that it's progress that she is showing her own will and that gives her a drive to test and explore new things, but since we can't understand her nor she us it's strains the everyday life. She gets grumpy when she doesn't get her will and whines... a lot. Not understanding each other is just hard. Most kids understand commands and sentenses even though they can't talk/respond at a very young age and we have a, soon to be, 3 year old who doesn't seem to understand anything we say. "Where is mommy?" doesn't get the appropriate respons. It's just... hard... The weather is getting warmer and we've been outside every day when we get home from daycare and actually Freja likes crawling in the grass now. Last year she started screaming when we sat her in the grass, but now she thinks it's a lot of...

So... we are trying to teach the twins to ride their bikes. Well it really isn’t easy teching two kids at the same time and to do it proparly! Eyes forward and use the footbreak! OMG... Hahaha... I have two days alone with the kids and of course they wanna bike and I want them to but it sure wasn’t easy! And at the same time I was pushing Freja in her pram, a few more hands would have been helpful! 😊 But it has been like that all the way with the twins cause they have learned the same things at the same time so we’ve had double all the time! It’s so special having twins and watching them learn stuff together as well. They inspire and push each other to develop further all the time and we are among the lucky few that gets to have identical twins. They are growing up so sweet, considerate, polite and gives you the cutest comments that just makes your day! Yay for the twins! 👧👧

So... a while ago I posted about how I don't feel like myself anymore - that this experience with my daughter and me being burnt out-depressed-anxious has changed me. Well I'm glad to say that I'm starting to feel like myself again, something I actually didn't think was possible. My hubby told that 'Yes you will come back again' but I didn't really believe it. I was torn down and needed to slowly build myself up again and it was a lot of work, a lot of hard work. I've been working 50% now (started with 25%) and soon I will go up to 75% so I'm well on my way. I'm thankful for my supporting family, my amazing doctor and insightful therapist. Mental health usually intails stigma but in truth we all meet difficult times and you never know how you'll react. I never thought this would've broken me but it did. BUT there is a way back and eventually you'll get there. Nobodys life is perfect all the time cause life moves in waves ...

So... the past weekend we started preparing our backyard for the greenhouse that hopefully will arrive later this week. It was pretty hard work both saturday and sunday. 54 bags of bark to cover the ground inside the greenhouse and to big piles of ground dirt to fill holes where the greenhouse is going to be placed to even it out. It's pretty far walking from one side of the plot to the other carrying the bags or pushing the gravel... very hard work. But it is nice to see everything taking shape - come on greens. Anyways now I have muscle fever in muscles I don't ordinary use - mostly in the back. Some weird muscle that is probably used when shoveling dirt and some others that I probably used carrying the bags. Well well... the reward should be great... ;)

I’ve always been more rational than emotional. What happened with Freja and how that burned me out, the depression and the anxiety has luft me with my emotions more on the outside. I think those that have met me would probably not describe me as emotional, maybe they would even describe me as harsh. So this new life being so close to tears, to all my emotions is really hard getting used to! Last year one of my favourite artists died and I got really emotional. I wasn’t a hardcore fan, I hadn’t Even seen a show, but I loved the music and every playlist I ever made had at least one song by the band. Being more emotional means I feel more for others than I used to. I’ve always had a lot of empathy and compassion for others but now I just tear up aswell, a lot.  So a few days ago Swedish superstar Tim ”Avicii” Bergling dies. He was only 28 years old, it’s very sad and very chocking. I mean almost everyone listen to his songs and love them so there are a lot of people m...

Äntligen en dom man förstår! Förstår ni att sondmatning inte har bedömts som grundläggande behov av Försäkringskassan? Nä inte jag heller. Att hjälpa att mata någon med bestick räknas som grundläggande behov men alltså inte sondmatning. Helt och totalt ofattbart! Men så i förmiddags kom prejudikatet, en dom som innebär att funkisfamiljer visst har rätt till assistans eller assistansersättning för sondmatning. Tack för en dom, en bedömning, som vi alla förstår mitt i nedrustningen av assistansen. #RäddaLSS #RättenTillPersonligAssistans

Igår togs det slutgiltiga beskedet att barnens förskola ska läggas ner... suck... Alltid är det nåt som inte ska bara kunna flyta på. Vi har haft en väldigt liten förskola med bara 20 barn i blandad grupp, kontinuitet bland personalen och en väldigt förutsägbar och gemytlig vardag för barnen. Nu ska vi flytta till en stor förskola med 3 småbarnsgrupper och 3 storbarnsgrupper, säkerligen stor personalrörelse och det kommer att bli en stor omställning för alla. Vi har förhoppning om att någon av fröknarna från vår nuvarande förskola ska placeras i en av storbarnsgrupperna och att våra stora tjejer ska hamna i samma grupp så att övergången blir mer smidig för dem. För Freja kommer hennes elevassistent att följa med henne vilket var en förutsättning för oss. Problemet här kan bli att i den lilla personalgruppen vi har nu så kan alla Freja så om hennes assistent är sjuk så känns det fortfarande tryggt att lämna Freja med de andra. I en stor personalgrupp krävs nästan att ett pa...

Finally we have had two weeks without any of the kids being sick, I was the only one with a little bit of a cold but it's gone now. Finally!!! So last week I managed to go to the gym tuesday-saturday-sunday. It feels really good to be back at it again. Saturday I went to a training session in a group, it's the toughest session in our gym I think, anyways the instructor is so good. But training that hard when I'm not in shape gave me the worst muscle fever. Even though I have lost a few kilos it still feels like such a long way to go before I reach my goal. After the twins I had 5 kilos extra but after Freja it was kaos and then when we started investigating for a diagnosis it just got worse and worse - so now I have made it difficult for myself and I have to loose 20 kilos! Aahhrggg... Well I am on my way now so I just need to keep my focus! I'm really looking forward to better regulated diabetes, better fitting clothes and just feeling better overall. Th...

Idag rockar många sockorna! Det uppkom ju som ett sätt att uppmärksamma Downs syndrom men vi som har ett barn med en väldigt ovanlig diagnos som också är ett syndrom och som också är en avvikelse i en kromosom - i gen TCF4 i kromosom 18 - vi rockar också sockorna... fast vi kan göra det varje dag! ;) Stora barnen har börjat prata om att Freja är annorlunda ibland. Vi pratade en dag om att de kunde gå när de var 1 år och någon dag efter det så pratade de med mig om det som "mamma, när vi var 1 år då kunde vi gå, men Freja kan inte gå!?", "nej Freja kan inte gå än men hon kanske kan lära sig det", "ja och hon kan lära sig att prata", "ja kanske, vi får se. Vi hoppas att hon ska lära sig att prata men annars kanske vi kan ha en app där hon kan trycka på bilder så att vi förstår vad hon vill", "ja och då pratar hon så", "ja då pratar hon så". *snyft* Barnen är väldigt uppmärksamma och de förstår så mycket fast de bara...

Han var stor - den största under min tid! Tänk att han var Världens smartaste, fick ALS som ung och lyckades leva med det i typ 50 år - tror inte jag läst om något liknande fall!? ALS är ju faktiskt vanligare bland högpresterande, en märklig korrelation och jag hoppas att forskare kan hitta ett bot snart för det är en grym sjukdom. Hawking ska i alla fall nu få sista vilan i Westminster Abbey vid sidan om Charles Darwin och Isaac Newton, helt självklart att han ska vara där för han var också en a de allra största under människans tid. RIP Stephen Hawking...

Yesterday was a really good day! Nice weather and I got a day with friends just hanging out and talking about life and whats next. It was really nice and I realized that I miss hanging out with them a lot. Our family life is full on, we have our three kids and weekends are often holy and it's often family time. During the week I pick the kids up a couple of hours before David comes home, then it's dinner and often after that bedtime. During the week there just isn't time for much else, not right now anyways. The kids need their sleep and still goes to bed at 19. We get them up at 6 in the morning and they can still be very sleepy. Well, wonder how they will cope with after school activities when that time comes. They have one activity at sundays now. Anyways, what I was getting at is that it was noce to have a little break, hang out with friends and just be me. But I still suffer from residue from my burn out/depression/anxiety so when I was just about to g...

Rubriken inspirerad av Jessica Anderssons ”Party voice” nu när barnen älskar Mello och vi har sett ALLA lördagar! 😬 Någonstans tror jag hon sjunger ’friday is my day’ eller något liknande jaja men detta var vår fredag! Köpemat (jag åt en macka för jag var inte sugen på något, klockan 7 måste Freja gå och sova annars blir det jobbigt, halv 8 fick stora tjejerna gå och lägga sig för de var sååå trötta (de sov över i Klaras rum - de brukar sova över hos varandra på helgen), klockan 9 somnade jag på soffan, klockan 10 somnade David på soffan. Hahaha... Klockan 4 på natten vaknade David och var jättepigg, klockan 5 vaknade jag av att Freja vaknade och hon somnade inte om av vällingen så hon fick komma upp och sova hos mig i sängen (hon kämpade emot lite men somnade till slut), jag och David somnade också om i sängen, 07.30 väcker Klara oss. Nästan 10 timmars sömn, som ett litet barn... gött... 😴😂😎

Sista dagen på penicillinet idag och jag har lyckats få en förkylning för att fira detta! Jag blir fantastiskt trött på alla dagissjukdomar! Suck... Imorgon har jag haft mina naglar i en månad och det ska bli så skönt att få bort plasttipparna och bara bygga på mina egna naglar som nu har vuxit en halv centimeter. Sista två veckorna har jag inte orkat fila plastnaglarna för man får ju sitta i flera dagar bara för att få ner en nagel till rätt längd! Hahaha... Nu är det i alla fall alldeles för långa och det är jobbigt att skriva på tangentbordet, går knappt att skriva på telefonen och jag hade stora problem att få in rätt kod på ett kodlås! Hahaha.... Dagens I-landsproblem. Men det har faktiskt varit jätteskönt att slippa alla onda flisor och sprickor som jag jämt får i naglarna. Framförallt sprickan jag brukar få som går rakt ner i mitten av ena tumnageln - men nu är nageln typ "ihoplimmad" så inga sprickor alls! Yeay... Det får vara min vardagslyx, min fåfänga!...

Jag har haft halsfluss två omgångar i hela mitt liv! Första gången var hösten 2014, tvillingarnas första höst på dagis. Då fick jag först halsfluss med strep A och en månad senare halsfluss med strep C. I slutet av januari var jag och Freja hemma tillsammans med halsfluss, strep A. I måndags när jag kom hem från jobbet var jag helt slut, Freja var hos faster i Malmö så jag satte på Mello till Klara och Stella på TV och lade mig under en filt i soffan. Det räckte inte med en filt så tjejerna gav mig en till och sen somnade jag och sov tills David kom hem. Hade ambitionen att gå till jobbet på tisdagen men när alla barnen var påklädda och redo så andades jag ut och riktigt kände ur dåligt jag mådde, så det blev till att stanna hemma. Ringde vårdcentralen direkt när de öppnade och fick en tid. Jo men visst var det strep A igen! Suck... Men penicillin hjälper rätt fort ändå så har inte så jätteont i halsen längre även om det gör sjukt ont att gäspa! Haha... Jag smittar...

Förslaget om att dra in personlig assistans för barn under 12 år och äldre över 80 år blev nedröstat - eller inte ens nedröstat för det var aldrig en fråga om att ta upp det! TACK OCH LOV! Ibland undrar man hur de tänker när de kommer med ett sådant förslag!? Upp till 12 år, alltså nästan tonåringar, och då ska man inte kunna få den avlastningen... på 12 år! Alltså hade förslaget gått igenom hade man haft minst lika många sjukskrivna föräldrar som barn med funktionshinder eller behov av personlig assistans. Nu utreder de att ändra i assistansen istället - för att urskilja de som behöver mer omvårdnad. Ibland kan allt kännas så himla hopplöst och man verkar inte kunna påverka någonting utan allt bara händer mot en. Jag kanske får ta och bli politiker! Hahaha... Dock tycker jag att regeringen borde införa an väldigt enkel förändring; ge LSS möjlighet att ta in journalkopior direkt från Habiliteringen/utredande enheter eller andra medicinska instanser. Detta borde redan v...

When we had twins our pediatric nurse was really worried I was getting a postpartum depression - but i was really just tired... so so tired! I think there are many similaritys between being depressed and sleep deprived. Sleep is just so important for your well-being. Sleep, excersize and food. ;) I've been reading a book by Swedish brainscientist (is it even called that? hahaha) Anders Hansen called "Brain Power". It is really good and it explaines why you need these things for your brain and how you can mend os heal your brain. It gives you some epiphanys and you hopefully get determind to test the thesis that the connections in your brain will improve in a year if you sleep well, eat well and excersize at least 30 minutes three times a week. I'm already a believer, I just really wanna believe that I can change things for myself and my well-being so I'm gonna do this and I hope I can make it a habit and not just testing the thesis. I wanna live well,...

I have always prioritized my kids before all else - I even think I made a post about it cause my diabetes suffered a bit. Right now I'm trying to prioritize my own well-being cause it's really bad right now. I gained a lot of weight during my last pregnancy and havn't lost any of it, this effects my diabetes demanding more insulin and being harder to regulate, loss of strength both physical and psycological among other stuff. It's been really hard to change my mind set and actually allow myself to go to the gym and take that time to get back to a good feeling for and about myself. Just being at the gym three times a week at least 30 minutes each has made a ton of differens for my psyche. Right now I havn't been able to train because of the child deseases the kids bring home from day care have just relieved each other just when I think I'm getting better! I really miss the gym right now and hopefully I can go there soon. February is usually calle...

We were watching a speech by an American psycologist about todays social media displays. All the pictures you see are perfect, the perfect dinner, the perfectly cleaned house, the perfect family Picture, all the perfectly happy people with perfect make-up, perfect hair, expensive clothes and accessories. That is a hard reality to live up to. However, the thing is that nearly nobodys life is like that - nobody lives in a perfect house ad. When you actually live in your house that will show no matter how much you clean or how many times you do a raid to pick up all the stuff your kids spread over the floors - your house will never look that perfect, that untouched. And why should it? In these pics you only see a fragment of that room and they have probably just pushed the mess out of the way to get that "perfectness". For adults, hopefully, we can see past that and understand what reality actually looks like, but for kids and young adults it may not be so easy. It ...

Asså diskussionerna kring LSS blir bara värre och värre!   Om vi först ska ta personlig assistans till våra äldsta - alltså alla över 80 år. Man har arbetat hela sitt liv eller kämpat hela sitt liv men helt plötsligt betyder det ingenting. Du får ingen medbestämmanderätt över ditt liv utan ditt enda val är ett boende. Idag när vi vet att den stora majoriteten vill bo kvar i eget boende så länge de kan, också idag när en flytt från eget boende kan leda till en snabb försämring av hela allmäntillståndet hos den äldre. Men detta blir belöningen för våra allra mest utsatta. Skam.   Om vi nu ska ta barn upp till 12 år. Oj jag får tårar i ögonen bara av att tänka på vilka ord jag ska välja för att beskriva det svek som dessa funkisfamiljer nu känner, som vi känner. Att som enda avlastning få valet att lämna bort sitt barn på korttidsboende känns verkligen helt orimligt. Föräldrar med barn som behöver hjälp med det mesta i vardagen, som bara vill kunna umgås och leka med sit...

Älskar när det kommer sådana här artiklar: https://www.expressen.se/kvallsposten/mamma-lina-har-trottnat-pa-tjatet-om-egentid/ Jag tycker fortfarande att det är helt otroligt att personer hela tiden ska anse sig "ha mer rätt" än andra. Varför ska du skambelägga andra? Du hade inte tyckt om att de gjorde så mot dig! Så nu ska jag försöka bemöta innehållet utan att skamma tillbaka! För mig hade det känts väldigt konstigt att bara vara mitt mamma-jag precis som mitt tidigare jag-jag inte fanns. Mitt mamma-jag är såklart dominerande och styr majoriteten av tiden men emellanåt får mitt jag-jag chansen att komma fram även om mitt mamma-jag alltid är närvarande. På jobbet är jag mest mitt jag-jag, den ambitiösa och presterande Johanna som tycker om att jobba snabbt, effektivt och noggrant, som tycker om att organisera och strukturera. Hemma är jag mest mitt mamma-jag som ska hämta och lämna barn på dagis, leka med barnen, pyssla med barnen, laga mat, tvätta konstant...

Efter att ha haft samma layout och bakgrund i flera år så var det dags för ett ansiktslyft för bloggen som ni kanske märkt! Efter lite experimenterande så tror jag nog att detta blev en vinnare. Känns mindre plottrigt och sen gillar jag soluppgången - ja för mig är det en soluppgång. Vi går mot ljusare tider nu i mer än en bemärkelse så det känns bra. Freja åkte på en dunderförkylning i natt igen. Det gick så fort, igår var hon inte snorig alls och hon hade haft samma dregellapp hela dagen men så när vi skulle lägga oss så hördes det riktigt täppt i näsen och imorse kunde hon knappt äta sin välling, stackaren. Efter lite övervägning så fick hon stanna hemma för hon var rätt grinig också men ingen feber i alla fall! Hon är tyvärr mycket känsligare för bakterier osv så det blir mycket vab med vår lilla plutt. Det heter ju inte Vabruari för ingenting! Suck...

Jag kan inte släppa alla dessa tankar om LSS. Jag har nu haft diabetes i 15 år i år, shit 15 år, och en sak med diabetes som brukar beröra mig är familjer som har barn med diabetes och speciellt när de inte får den bästa hjälpen som finns tillgänglig. Det finns till exempel blodsockermätare som mäter kontinuerligt och som larmar, antingen till handenheten eller till telefonen (man kan ha flera kopplade nummer), och för mig är det HELT ofattbart att dessa barn inte får en sådan enhet direkt. Här har vi familjer i kris som måste gå upp en gång i timmen VARJE natt för att mäta blodsockret på sitt barn med diabetes. Diabetesen beter sig oftast annorlunda på små barn än på vuxna, och annorlunda på tonåringar än på vuxna, och annorlunda på nydiagnostiserade än på de som haft diabetes en längre tid. Men att bevilja dessa kontinuerliga blodsockermätare för dessa familjer hade gjort så himla stor skillnad för deras livskvalitet och deras ork - dessutom hade det underlättat för förskola...

So this happened yesterday... All of the sudden Freja, who was sitting on the floor, leand on her hands while turning her body and putting her feet down to start raising up. She doesn't really have the balance to stand herself up but she has started to prepare her body for that next step. Amazing!!! She was just standing like that, on her hands and feet, and it was just incredible to see. For the longest time nothing really big happened in her motorical development but these last 6 months so much has happened and we are so excited for her, and for us! It's so great that she gets to progress this fast for a while because she has started to get more frustrated at late. Go Freja go...

Since Freja is still ”small” and crawling we really want her to keep wearing bodys for a while but she is now size 92 and that used to be the last size for bodys unfortiunatly! Now I think in the light of everything that’s happened with H&M I really don’t wanna buy any clothes from them but they are the only brand I’ve found that are now making bodys in size 104!  So with mixed feelings we have now bought some bodys in this size hoping that other brands will follow! Freja will soon go up one size to 98 but we usually buy according to double-size like 98-104 so that's why we bought size 104! Pomp de Luxe has some bodys in size 98 so we will probably buy some from them when their new collection comes out cause right now they are sold out! Well, well... lets hope for bigger bodys and bigger bibs in the general clothes stores! 🤞

I see all these pregnancy- and babypictures everywhere and it’s hard not to feel afraid for them! My whole pregnancy with Freja all ultrasounds showed a healthy baby with good heartrate! After she was born she developed och progressed the way she should for the first 6 months! She was like any other child without a neurological condition. And still... she didn’t turn out like any other child! I’m so glad that we are done with having kids - we have three beautiful hooligans and that is really more than enough! Having identical twins is a low procenter at 0,25 % chance, and both surviving is probably even less of a chance. Having a child with Frejas PTHS is for now around 1:100 000 so thats really low chance of that happening - and since neither of us were carriers, it was a spontanious mutation of the gene, I think that’s even more rare. And to be honest pregnancy never agreed with me. I had hyperemesis both times, with the twins I hurled every day from morning until ab...