In English below.
Igår var lillebror och jag nere i stan. Vi tog en Uber till Temple Square där bland annat Tabernaklet finns. Jag antar att det vid sidan av bergsvyn, som ramar in dalen som utgör Salt Lake City, är den mest berömda sevärdheten. Lillebror var mer imponerad av ett par av höghusen bredvid. Det var också han som skötte kameran, han valde att fotografera höghusen och ventilationsanläggningen framför kyrkan istället för själva tabernaklet – en förmildrande omständighet var att det pågår omfattande renovering av kyrkan. Vi hann gå på HM också. Jag hoppas att vi får möjlighet att åka upp i bergen, det verkar vara storslagen natur. Park City ska vara fint också.
Idag hade Edith ork och lust att gå ut en sväng. Det är tydligen värmebölja i Sverige men det är varmare här, så vi nöjde oss med lite sällskapsspel i skuggan. Edith och mamma spöade lillebror i 500. Lillebror vann i Rätt eller Fel. Det var ett av spelen som ingick i resepaketet Edith fick av en kompis och hennes familj. Det fanns godis i också, Edith har kvar ganska mycket, lillebrors tog väl slut på planet hit.
Just nu tänker jag att vi väntar på anfall. Innan det finns anfall registrerade i RNS-dosan vill man inte starta upp stimuleringen. Det låter rimligt, ännu bättre är väl om den har hunnit registrera några stycken. Det finns något som Dr Bollo beskrivit som ”implantation effect”. Den innebär att själva ingreppet i sig kan ha effekten att anfallen uteblir en tid. Han pratade om veckor i vissa fall, flera månader i sällsynta fall. Innan vi kan boka om hembiljetten vill vi också ha haft igång RNS-dosan i stimuleringsläge någon vecka, så att vi ser att Edith mår bra av den.
Det är väl ursprungligen inte så svenskt, men i kväll ska vi laga svensk nutida husman – köttfärssås och spagetti. Vi saknar fläkt på rummet, men förhoppningsvis klarar vi det utan att dra igång brandlarmet, det ser ut att vara kopplat till brandkåren. Det är också tvättdag idag.
/Ediths pappa Carl
In English.
DAY 19 in SLC – laundry day
Yesterday, little brother and I were down town. We took an Uber to Temple Square where, among other things, the Tabernacle is located. I guess next to the mountain views, which frames the valley that makes up Salt Lake City, is the most famous sight. Little brother was more impressed by a couple of the high-rise buildings next door. He was also in charge of the camera, he chose to photograph the high-rise buildings and the ventilation system in front of the Tabernacle instead of the Tabernacle itself – a mitigating circumstance was that extensive renovation of the church is underway. We went to HM as well. I hope we get the opportunity to go up into the mountains, it seems to be magnificent nature. Park city should be nice too. When the renovation is done I would like to visit Temple Square and the Tabernacle again.
Today Edith had the will and the strength to go outside. It is a heat wave in Sweden, but it is hotter here, so we settled for card games in the shade. Edith and mom beat little brother in 500 (card game). Little brother won in Right or Wrong. It was one of the games included in the travel kit Edith received from a friend. There were candy in the kit too, Edith has quite a lot left, little brother´s run out on the plane from Sweden.
Right now I think we’re waiting for seizures. Before there are seizures registered by the RNS, you do not want to start the stimulation. It sounds reasonable, even better is if it can register a few. There is something that Dr Bollo described as an ”implantation effect”. It means that the procedure itself can have the effect that the seizures ceases for a while. Dr Bollo talked about weeks in some cases, several months in rare cases. The lack of seizures right now don’t necessarily have anything to do with that. Before we can book the ticket home, we also want to have the RNS started in stimulation mode for a couple of weeks, so that we can be sure that Edith isn’t feeling bad from it.
It’s originally not that Swedish, but tonight we will cook true Swedish contemporary home cooking – Spaghetti Bolognese. We lack a kitchen fan in the room, but hopefully we can cook it without activating the fire alarm, it seems to be connected to the fire brigade… It is also laundry day today.
*Mountain views from the third floor of the McDonald’s house, the gray bus is the shuttle.
**Edith has taken off the bandage, in a couple of days we can wash her hair again.
***The only way to get little brother to eat right now seems to be if he cooks the food himself. Sometimes it does not work either.
/Edith´s father Carl
More information about Edith´s journey
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FIRES fighter Edith 