Näääää minsann!!!

Nu vill damen minsjäl sova "säger" hon här!

Önskar att få tillbaka min pigga glada Mathilda igen...
Å längtar efter sol & strand så vi kan softa hon & jag hela dagarna <3


En utflykt förra veckan


Naturum

Idag har Mathilda varit på utflykt med skolan, Naturum. Letat efter vassa föremål och mjuka föremål för att känna på.
Också åkt "låtsas"helikopter och ubåt.

För övrigt är mathilda väldigt trött å dann, inte alls direkt på topp. Bara kprta stunder...
Att se sin dotter så nedstämd och negativ är ingen höjdare när man är van vid en överlycklig tjej <3


Svårt..

Att vara en bra fru, mamma, faster, moster, svägerska, syster, dotter, vän och allt... Är så jäkla svårt när man inte känner sig själv på topp :-/

Också är det svårt att "gå vidare".. Komma på vad man vill göra?! Då jag tror jag ska lämna personlig assistans bakom mig.. Men dock fortsätta med att vara arbetsledare....

Hmm


Seg dag

Varit en seg dag för fröken, och dagarna går så fruktansvärt sakta när man väntar på att läkaren ska ringa vilket nog dröjer ett tag till ju :-(

Blir inte klok på varför Mathildas epilepsi ibland ger en förhoppningar och plötsligt sen ger oss en käftsmäll :-( tragisk!

Med så mkt epilepsi aktivitet betyder det ju också att det hämmar utveckligen :-(
Hade det inte varit för epilepsin i hennes liv så undras då hur hennes utveckling idag hade varit.....

Hennes utveckling är inte för mig något problem för övrigt, för hon trivs med sitt liv och jag trivs med henne precis som hon är <3 Men visst hade det varit kul om epilepsin ngn gång låter henne va så hon hade kunnat få chansen att utvecklas och upptäcka världen!

Varit seg dag även för mig... Att gå å tänka på Mathilda och längta efter henne!


Vill påminna alla människor att låta bli andra.... Att "sparka" på människor som redan "ligger ner" är fruktansvärt lågt.. Att tänka sig för, även om en människa visar sig glad så vet man aldrig hur det är på insidan.
Att låta bli snacka onödig skit om varann, istället ta vara på era nära å kära för man vet aldrig när livet sitt böir mkt skört <3
Om man inte umgås med varann eller är osams, så behöver man inte snacka... Låt bli och prata om allt gott! <3 KRAM TILL ER ALLA IKVÄLL


Såhär tyckte Mathilda om..

Dagis grillkvällen ...


Humörsvängningar

Min älskade Mathilda vid min sida efter skoldag! Varit på småsyskonens dagisgrillkväll.. Mathilda sov igenom hela vistelsen men när vi skulle hem efter två timmar så blev hon jätte glad...

Dina humörsvängningar & viljor lilla fröken -jag älskar dem!

Nu på väg hem sitter min tjej med tydliga epilepsiaktiviteter, sorgset ledasamt!
HATAR EPILEPSI


Tack

Tack ni söta som lämnar några ord här till oss, det ger oss lite extra styrka & glöd att kämpa på och ta denna fight med <3


Tynger i min kropp

Precis släppt iväg mitt hjärta till skolan, det tynger min kropp & knopp när jag helst hade velat vara vid hennes sida...

Men det är lika bra att släppa taget, låta henne gå till skolan...
Det har redan en gång i tiden varit jobbigt att skilja oss åt då hon började i nollan, vill inte gå igenom den persen igen.. Det vill nog inte Mathilda heller. Vi är EN!

Det är jobbigt att sånt här med epilepsin sker mot sommarens tider... När alla läkare går på semester, dem man litar på och låter ta beslut över sitt barn..
Man vet hur tufft det är sommartid att få bra läkarhjälp efter alla de andra ggr det inträffat...

Måtte det bli en någonlunda bra sommar, full av kärlek!

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class="image">


Hjärnspöken

Medicin e ökad, och imorgon får hon även nya morgondosen. Hoppas hon kommer må relativt bra min finaste Mathilda!

Hon ligger i sin säng och har massa epilepsi aktivitet, ingen ro alls min tjej. Önskar jag kunde byta med dig!!!
Ta alla dina krämpor och du alltid få leva som en prinsessa!
Vill vara med dig dygnet runt, varenda sekund nu när jag verkligen vet hur din hjärna rullar på med massa hjärnspöken hela dygnen :-(

Kommer kännas som en lååång väntan att läkaren ska ringa igen, de har påbörjat en ny utredning igen... Vad min tjej kan behöva. Läkaren är noga med att berätta att man inte alls ngnsin kan räkna med en anfallsfrihet för denna lilla dam ....
Vääänta och hoppas på under... Att de kommer fram till något bra!

Inte undran på att mathilda varit så deprimerad på senaste tiden :-(

Medicinbyten, vns operation, ketogen.....huaaa vi får se vart vi hamnar denna gång..

Fina bästa Mathilda <3


Du kan, Du vill, Du gör det Igen!


Tårarna brinner innanför ögonlocken...

För ngr veckor sen var vi på läkarundersökning osv på habiliteringen.
Det varade väl omkring 30minuter och under den stunden visade Mathilda upp minst 20tal epaktiviteter:-/
Tragisk verkligen och hon visade upp det nyaste hon sysslat med ett tag som vi varit rätt säkra på att det oxo var något. Och det höll läkaren med om.

Idag ringde läkaren med svar på förra veckans EEG.
Det var ett skutt tillbaka på ruta 1.
Mathildas svåra epilepsi har verkligen börjat ta fart igen (den går i perioder på olika punkter).
Och de nya hon börjat med var som vi trodde.
EEGet visade att min tjej har epilepsiaktivter heeeeeeela tiden så gott som, det är inte många minuter man kan räkna utan ep-aktiviteter. :-(
Det blev verkligen en smäll i bröstet och tårarna dem brinner innanför ögonlocken.
Va faaaan liksom????! Jävla epilepsi, det värsta jag vet!!!!! Fan försvinn!!!!!

Den här epilepsin går i perioder i olika vågor, och nu är den verkligen på g attballa ur totalt.
Tur i oturen att detta syntes för läkaren nu.
Blev en snabb höjning på ena medicinen omgående utan upptrappning. =kommer bli en slö flicka som inte mår så bra kanske, har vi "tur" så e hon "imun" å reagerar inte dåligt på det... Då får vi ha tur!
Och nu pågår en ny utredning på min flickas epilepsi, vi får se vart de böir av det här <3

Min älskling Mathilda, Varför ska du behöva ha det så här :-( det gör så ont i mig att se dina ögon rulla iväg, ditt medvetande försvinna och att få veta att din epilepsi börjar balla ur FÖR FEMTIOELFTE gången!!!!

Nya mediciner..... Kanske en Vns operation..... Vi får se var livet tar oss.... Igen..

Kämpa Mathilda, du klarar allt detta slit & skit igen!!!!!


Man försöker lära sig se saker positivt, vara positiv, vara glad och pigg!
Men hur gör man??
När det känns som ngn knuffar tillbaka det och ger en negativ energi???!
Jag vill inget annat än att Min mathilda ska må bäst!! Det är hon väl ändå värd efter så många tuffa stunder i hennes liv <3

Mathilda detta gör vi tillsammans!


Jag vill påminna alla människor att man bör tänka sig för vad man säger,tycker å tänker... Attmänniskor kan se så lyckliga ut på utsidan men insida är väldigt sköör <3
Kram till er alla läsare!


Here we go again

Om igen känns det som vi hamnat tillbaka på ruta 1 igen. Som alla andra femtioelva gånger...
Är det egentligen konstigt att man knappt hinner lära sig se positivt på saker, känna hopp och bara va??

Bilder från EEG som gjordes förra veckan på Mathilda... Och på en söt liten skyddsängel som hon fick efter för att hon var så duktig!


8åring

Jag fick en vovve när jag fyllde år som pratar och sjunger, den är jäääätte kul!


Mys


Bloggtorka

Bloggtorka!
Men ställ gärna frågor om ni har ngr så kan jag skriva svar på dem i bloggen :-)
Ni är ju en del här och kollar dagligen trots min bloggtorka :-)


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