Diabetes-Johanna

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...

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 ...

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...

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...

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...

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...

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...

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...

Ibland känner vi att vi hade behövt avlastning - det har varit, och är fortfarande, både fysiskt och psykiskt påfrestande. Jag är på väg tillbaka från utbrändhet med depression och det är också tungt... och svårt. Sen har vi tvillingarna som behöver och kräver sitt. Vi har tur som har familj på båda sidor som hjälper oss för utan dem hade vi nog varit mycket värre däran. Enligt LSS har vi rätt till hjälp men regeringens påtryckningar har tagit konstig form hos Försäkringskassan. Som jag förstår det har assistansbolagen fuskat till sig bidrag som hamnat i egen kassa istället för i assistanstid till behövande. Alltså borde FK utföra kontroller på de bidrag de ger bolagen och istället låta behövande familjer behålla sin välbehövda hjälp. Forskning har tex visat att föräldrar till barn med särskilda behov ofta lever helt eller delvis på sjukpenning - finns ju en klar anledning till detta som både FK och regeringen är medvetna om. Det kan inte vara rätt att minska assistans...

Not so surprising that parents of NPF-children are burnt out and living on sick leave or partial sick leave. It's a hard life with many obligations. We have meetings with the principal of our day care, we have meetings with the day care personnel, with the special pedagogue and then we have our habilitation institute were we have regular meetings with the psysiotherapist and the speech therapist, we have psysical therapy in a warm water pool once a week, and then there are some extra meetings each semester at the University Hospital due to her poor eyesight and her neurological difficulties. I mean... it's a lot and you just want to do everything for her because we want her to have the best possible care she can get but it's hard trying to make time for everything and at the same time trying to keep up with work. Now the speech therapist really wants us to do a kommunikation course once a week, for 7 weeks and 2-3 hours per meeting. I really want to get some ...

Jag är starkt positiv till att vaccinera! Jag tror inte på konspirationsteorier och jag tror inte på att vaccin orsakar autism till exempel. Barn kan reagera illa på vaccin men det behöver inte bero på vaccinet för har man en underliggande förkylning så ska man ju inte vaccinera sig den dagen, även om det såklart kan råka hända ändå. När Freja gjorde sin MR så fick hon ju inte heller ha en underliggande förkylning (vilket förskolebarn nästan har konstant), hon undersöktes noga och bedömdes klara nedsövningen. Allt gick bra men på kvällen fick hon väldigt hög feber som först inte ville gå ner av Alvedon och Ipren men efter en (ytterst kort) tripp till akuten så gav den med sig. Tillbaka till vaccinet. Vi har gått med i en internationell föräldragrupp för Pitt-Hopkins och där diskuteras vaccination livligt. PTHS innebär en hjärnskada redan från början men hade vi inte vaccinerat mot till exempel mässlingen så hade Freja kunnat få en hjärnskada om hon hade varit frisk eller s...

This happens from time to time with Freja - she wakes upp at night and can't go back to sleep for several hours. She woke up at 3.15 and didn't fall back asleep until about 5.30 - I am totally spent. This was still a mild case cause she could as well wake up at 00-01 and not fall asleep until 4-5 in the morning. It's so tough. Not getting enough sleep makes everything feel like shit. When we had the twins the pediatric nurse thought I was having the baby-blues but NO I was just sooo tired. I need my sleep desperatly. Well, I've been depressed now, this last year, and still not sleeping makes everything just worse. You need sleep, exercise and to eat regularly in order to feel better! Haha... Lucky I bought a snack and I will get some healthy salad for lunch and maybe I will get back on track. At least my diabetes is being compliant and not too much of a roller coaster. Onwards and upwards...

Under julens buffébord kan man välja mat som man vill men nu börjar vardagen igen! Nu är jag ensam med barnen under veckan och idag småstartade vi med makaroner och falukorv till lunch men på grund av Frejas magbesvär så ville neurologen att hon helst inte ska äta pasta eftersom det är förstoppande. Så nu börjar livet då vi lagar olika mat! Jag kokade bulgur till Freja som jag blandade med väldigt lite fullkornspasta. Vi har bara fullkornspasta här hemma så det fick stora tjejerna, den pastan är dock inte tillräcklig för Frejas lilla mage! Jag åt också bulgur och pasta blandat i sympati för lilla Frejisen men det var helt okej. Mjölk är också förstoppande så istället fick hon vatten med movicol i och vi får se hur vi kan lösa det sen när hon börjar förskolan igen! Vi har köpt husk som vi ska byta ut lite välling mot men vi har inte riktigt börjat med det ännu! Om två veckor ska vi till Hab och då ska jag se till att vi får tid till dietist och sen också att vi får en r...

”There is something wrong”. Those thoughts, that sentense - nobody wants that. In ”The other woman” when Kates world is falling apart Carly tells her to ”cry on the inside like a winner” - it’s sort of a funny scene but in truth that is what most of us do. We hide it, trying to hold it back, nobody wants to seeme that voulnerable or week. But what about when your world truly crumbles? When you get a result you can do nothing about? When you are completly helpless? What then? You can’t keep crying on the inside, you need an outlet! And you need tools for dealing with all those emotions. It’s so hard and it takes a lot of work to get out of that dark place - but in time you will heal some of those wounds and you will begin to function again. I’ve realised that although I have come quite a bit on my journey back I have one huge issue, something I think I will have to live with for a very long time if not forever - acceptance! I can talk about Freja and her diagnosis outsi...