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mandag den 26. december 2011

Arthur sover ikke - Arthur does not sleep

Arthur har aldrig sovet godt. 
Da han var halvandet, kravlede han ud over tremmesengen og fra da af, har han ikke kunne finde ro om natten.

I lange perioder, blev Arthur ved med at stå op, når vi puttede ham. Vi fulgte ham gang på gang tilbage i seng. Dette kunne fortsætte i timevis. Nogle gange holdt vi ham i sengen, eller lagde os sammen med ham, så han kunne finde fysisk ro. I en periode havde vi sågar en sele i hans seng, som vi så tog af ham, når han var faldet i søvn. Han elskede denne sele og bad selv om at få den på. Vi erstattede selen med en kugledyne (http://www.protac.dk/Default.aspx?ID=5), men den virkede aldrig rigtig. I perioder faldt Arthur først i søvn efter kl. 24.00 - Han var selvfølgelig alt for træt dagen efter og kunne ikke holde til sin dag i vuggestuen (nu Børnhaven).
I sommer spurgte vi så Arthurs læge til råds. Han ordinerede Melatonin til Arthur. I løbet af få dage, var vores aftener ændrede til det bedre. Arthur faldt i søvn en time efter han havde fået sin pille - og sov! 
Dette varede desværre ikke ret længe. Kort efter begyndte Arthur at vågne om natten, hvilket han fortsat gør. Arthur vågner mellem kl. 01.00 og 03.30 og er vågen i 2-5 timer. Han vil virkelig gerne sove, men kan ikke finde ro. Han mosler rundt, men vil hverken lege eller stå op - Han kan ganske simpelt bare ikke falde i søvn.
Om et par måneder skal Arthur derfor søvnudredes - Vi har derfor udfyldt et søvnskema til Riget. I første omgang skal han overnatte på videostue, dernæst skal han måske på søvnlaboratorium i Glostrup - Jeg håber så meget nogen/noget kan hjælpe ham og dermed os. 

26.12.11
Arthur does not sleep

Arthur never slept well. When he turned a year and a half, he figured out how to get out of the crib and from that time, he has not been able to find rest at night.

For long stretches of time, Arthur kept getting out of bed after we had tucked him in. Time after time, we escorted him back to bed. It would go on for hours. Sometimes, we would hold him down in bed or lay down with him and he would be physically calm. For a while, we even had a rein in his bed, which we removed once he has fallen asleep.  He loved the rein, and asked to have it put on him. We tried to replace the rein with a ball duvet, but it never really has any effect. Sometimes, Arthur would not be asleep until midnight, which of course made for bad days in daycare because he was tired.

This summer, we asked our doctor for advice. Ha gave Arthur Melatonin. Within a few days, our nights got better. Arthur would fall asleep an hour after getting the pill and stay asleep until morning. Unfortunately, this did not last. Shortly after, Arthur began to wake in the middle of the night – he still does. He wakes between one and three thirty and is awake for two to five hours. He really wants to sleep but cannot find rest. He is restless and moves about but does not want to get out of bed or play. He just cannot get back to sleep.

As a result, Arthur’s sleep will be tested by a hospital in a few months. We have filled out a sleep schedule and first of he has to spend the night in a room with video surveillance. Afterwards, he might have to sleep over in a sleep laboratory as well. I really hope that some of this will end up helping him – and us. 

søndag den 25. december 2011

Mollie er helt rask :) - Mollie does'nt have Hyperekplexia

Så fik vi svar på prøverne - Arthurs lillesøster er helt rask - Hun har ikke Startle Disease, men er bærer ligesom jeg selv er...

Mollie does'nt have Hyperekplexia
So we got the testresults from Mollies bloodsamples - Arthur's little sister is completely healthy - She does'nt have Startle Disease, but is a carrier like myself ...

torsdag den 1. december 2011

Arthur er blevet storebror - Arthur is a bigbrother

Kl. 06.10 den 29. november, blev Arthurs lillesøster, Mollie, født.
Som aftalt, tog jordemoderen en blodprøve fra Mollies navlestreng til genetisk udredning i Wales.
Kort efter Mollies fødsel, kom en børnelæge ind på stuen. Han undersøgte hende og vurderede at hun havde det godt. Han så ingen tegn på Startle Disease (ikke at jeg tror, han vidste hvad han skulle se efter). Alligevel blev Mollie indlagt på neonatalafdeling (?!?). Jesper fulgte med Mollie og jeg lå i mange timer og ventede på at se dem. Da jeg endelig kom over på Mollies afdeling, sov de begge. En sygeplejerske kom ind for at tage imod mig. Jeg spurgte ind til hvorfor Mollie var blevet indlagt og ikke måtte være på barselsafsnittet og hun forklarede, at vi afventede en læge, der kunne undersøge Mollie med henblik på, at finde ud af, om hun havde Startle Disease. Jeg forklarede, at det kun var Arthurs læge, der kunne give et skøn på dette og at vi måtte afvente svar på blodprøverne. Alligevel skulle hun blive.
Vi ventede hele dagen forgæves og da kl. var 17.30 fortalte jeg sygeplejerskerne, at lægen måtte være gået hjem. Jeg ringede til hans sekretær, men ingen tog telefonen.
Kort efter fik jeg Mollie udskrevet og fik hende med hen på barselsafsnittet.

Næste morgen ringede jeg igen til Arthurs læge, denne gang tog sekretæren telefonen og forsikrede mig om, at Arthurs læge ville komme op på afdelingen og undersøge Mollie i løbet af et par timer. 
Kort før undersøgelsen, ringede Jespers bror for at høre om, han måtte komme forbi og se Mollie. Jeg ventede på ham på hospitalsgangen sammen med Mollie. Jeg ville så gerne spørge, om han ville gå med ind til lægen, når hun skulle undersøges, men jeg turde ikke. Jeg var så bange for, at lægen ville undersøge Mollie og konkludere, at hun også havde Startle Disease mens jeg stod dér helt alene med hende. Samtidig ville jeg ikke bede Jespers bror om at vente sammen med mig. Jeg var bange for... at spilde hans tid?

Kl. 12 kom lægen. En helt skare af børnelæger og sygeplejersker gik med ind på stuen, nysgerrige så de til, hvordan han undersøgte Mollie nøje. Lægen tappede Mollie på panden og på næsen. Han trykkede hende under fødderne, bevægede hendes ben og arme. Han klappede tæt ved hendes øre, lyden føltes utrolig høj og gennemtrængende... Det tog maksimalt 10 minutter, så smilede han til mig og sagde, at han ikke så nogle tegn på Startle Disease. 
- - -
Fra Mollie blev født, føltes hun anderledes end Arthur. Hendes krop virkede afslappet og rolig. I timerne på hospitalet, fulgte jeg hendes bevægelser nøje. Hvert et lille ryk eller sitren gjorde mig frygtelig bange. Jeg googlede alle baby-reflekser og læste op på Mororefleksen. Hendes arme der viftende siterede, var det bare den? Eller kunne hun have Startle Disease? Hun rystede ikke som Arthur, slet ikke...
Vores forældre kom og besøgte os på hospitalet, alle kommenterede de på Mollies rolige krop. Gættede på at hun var rask... 

1.12.11
Arthur is a big brother

At 6.10 in the morning of November 29th Arthur’s baby sister Mollie was born.
As we had agreed, the midwife took a blood sample from Mollies umbilical cord for genetic diagnosis in Wales. Shortly after Mollie’s birth, a doctor came to our ward to examine her and check that she was doing fine.  He saw no signs of Startle Disease, but I doubt that he has much of an idea of what he was looking for. Either way, Mollie was admitted to the neonatal ward. Jesper came with her and I had to wait hours to see them. When I finally got to her ward, both Mollie and Jesper were sleeping. A nurse came to greet me and I asked her why Mollie had to be at the neonatal ward. She explained that we had to wait for a doctor to examine Mollie in order to find out if she had Startle Disease. I explained that only Arthur’s doctor would be able to make that assessment but Mollie still had to stay.
We waited all day and at haft past five in the afternoon, I told the nurses that the doctor must have left for the day. I called his secretary but no one answered so I discharged Mollie and brought her back to the maternity ward with me.

The next morning I called Arthurs doctor. This time, the secretary promised that we would some to the ward and examine Mollie within a few hours. Shortly before the examination, Jesper’s brother called to ask if he could meet his new niece. I waited for him in the hospital hallway with Mollie. I really wanted to ask him to stay with us when the doctor came but I was afraid. I was so scared that the doctor would examine Mollie and say that she also has Startle Disease while I was standing there all alone with her. At the same time I did not want to ask Jesper’s brother to wait with me – I guess I, irrationally, did not want to waste his time.

The doctor came at noon. A crowd of doctors and nurses came into the room and curiously looked on as he examined Mollie. He tapped on the forehead and by the nose. He pressed under her feet and moved her arms and legs. He clapped close by her ear, the sound seeming very loud and piercing. It all lasted less than ten minutes and then he smiled at me and told me he saw to signs of Startle Disease.

From the moment she was born, Mollie was different from Arthur. Her body seemed relaxed and calm. During the hours at the hospital, I closely followed her moves. Every little jerk or tremble scared me. I googled every baby reflex and read about the Moto-reflex, trying to determine if her quivering arms could be that or Startle Disease. She did not have the same shakes as her brother at all.
Our parent came to visit at the hospital. They all commented on Mollies calm body and guessed that she was not ill.