Sunday, January 31, 2010
Thursday, January 28, 2010
Friday, January 15, 2010
Friday, January 8, 2010
This is how I do it, Emma
Sebastian has started to show interest in other children with 'Fanconi' as we call it when we talk about Sebastians disease. A couple of days ago we told Sebastian about Emma from the US, who has low bloodcounts. Her doctors want her to take some medicine, that might boost her counts. Emma is not happy about the medicine, and do not want to swallow it. When Sebastian heard this, he wanted to go and visit Emma, and show her how to swallow medicine. We told him that we hope to meet Emma and her family at Camp Sunshine this Summer, but in the meantime it might help her, if he made a little video showing her, how he himself is doing with his medicine.
However, just after shooting the video I learned that Emma is doing great with the medicine now (way to go Emma!). Sebastian is still looking forward to meeting up in the Summer with Emma and the other Fanconi kids.
Wednesday, January 6, 2010
Not getting her way...
It is Wednesday morning, and Marie-Louise is insisting on watching 'Pip og Papegøje' (a Danish movie for children). Heartbreaking and nice try Marie-Louise, but no TV in the morning ;-)
Tuesday, January 5, 2010
Everything went well
The surgery yesterday went very well. Sebastian had a good sleep afterwards, and this in combination with some drug to avoid naussea probably helped him to wake up without pain or discomfort. He was able to pee 3-4 hours later, and this with not too much pain. The doctor came by and told us, that the foreskin had been extremely tight on the inside, and that only surgery could help in this case.
This morning Sebastian woke up with lots of energy, and we have been outside playing in the snow for a while today. Great! Everything is white, white, white and brings in so much light in the house during daytime.
Today we went to see a new ear specialist for Marie-Louise. One of her drainage tubes from May 2009 had come out in early December, and her new doctor did not hesistate long: Marie-Louise needs new drainage tubes on both sides. Right side is clogged, and the left side is out. Both ears holds liquid, and especially the left ear is low on hearing. So yet another surgery (fortunately very small) on the 15th of January.
Sunday, January 3, 2010
To our blog-friend Ron ...
Hi Ron,
Thank you for you comments and your concern. The surgery tomorrow is not a circumcision but a 'slit', probably like the one you mention. And yes, we have been down the ointment road. However, it did not solve the problem.
We have now consulted with no less than four doctors on this, and they all start out by telling us that ointment is the proper treatment - until they actually examine Sebastian. They have all four reached the same conclusion that surgery - unfortunately - is nescessary.
Saturday, January 2, 2010
They make our day!
Having a nice and cosy start on 2010 with our two sweeties.
Sebastian is having surgery for his phimosis on Monday, and we are talking it over and over and over with him several times a day. He is not too keen on yet another surgery in his private parts, but tonight he named his prize: a Darth Vader costume. We will see what we can do. Sebastian is so much into Star Wars these days. We have the Wii game, and he is quite good - despite one missing thumb - on getting through the many levels and chapters. Being very fond of black (!) his favorite is Darth Vader, but actually all of the bad guys are very 'appealing' to him. Not trying to over-analyse on this, but I am pretty sure that this is one of Sebastians defence mechanisms in life: you have to know evil, and know what can possible threathen you, before you know what is good.
Marie-Louise is playing around all day, and is generally a very happy child. She is a good and solid eater - very welcome news in the house! We will see if her appetite could boost Sebastians a little, or if Sebastians choosyness will affect her more in the long run. Marie-Louise is very much into fruit, and often enjoys a whole melon on her own! Bananas and apples are favorites as well. She likes chicken, paste bolognese, roast pork, and potatoes, potatoes and potatoes - with gravy. My daughter!
She is very interested in the toilet for the time being, and likes to read sitting on her potty. For now it is just for play, and nothing is really produced during these looooooooong bathroom visits ;-)
Marie-Louise is very much into cuddling, and in the morning we carry her from her bed into ours, and snuggle with her for about half an hour. Then she will sit up, and say 'done' followed by 'breakfast' (mårnemad), and then we better get out of the bed! Great way to start the day.
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