News from Ørholm

Marie-Louise's surgery (drainage tubes) went very well on the 15th of January. However, little did we know that apparently she had caught a bug from her creche causing her to spike a very high fever from the afternoon after the surgery. Our first thought was of course, that this had to be related to the procedure, but after two doctors visits it was apparent that it must have been a virus with a very bad timing ;-) Marie-Louise had 39,5 C + for five nights in a row, and developped a cough after this. Well, since mid-last week she was back on her feet and her ear-doctor has checked that the tubes are in the right place. We have her on ear-drops now, though, as one of her ears started to run a bit. But overall she is fine.

Our third PGD-cycle has come to an end. A week ago 17 eggs were retrieved, which we initially were very thrilled about. However, only 8 of them started to grow, and of these only 6 responded when it came to the HLA-test. Despite the fact that 25% of the 6 eggs statistically could have had the right HLA-code, none of them had it. So this time no eggs to make a try with. Fortunately we had prepared ourselves that this might happen at some point, and we are confident that there is still a chance if we keep on trying. Next round will likely be in 2-3 months time.

Last Thursday we went to the second largest city in Denmark, Århus, with Sebastian. The MRI-scan from September 2009 had unveiled a 'filum terminale lipom' (a lipoma in the spinal area), which in Copenhagen had been described as "not at all related to tethered cord" and "a casual finding". Well, having searched a little on the internet on the subject, it turns out that a doctor in Århus, Dorte Clemmensen, has specialised in precisely tethered cord. Asking her for a second opinion on the MRI-scan, she came back with a clear message: Sebastian has indeed a tethered cord.

Needless to say, we were rather eager to go and see her i Århus late last week, and she confirmed what we had been reading about this rare condition in the spine: given Sebastians age (he is 5 1/2) and his likelyhood of growing for many years to come, the tethering of the cord in the spine will become worse. What we saw in the Spring 2009 with serious problems with incontinence and what we see now with aches in Sebastians feet and lower legs might indeed be symptoms of tethered cord. In her experience the likelyhood of Sebastian loosing control of bladder and bowel, and even loosing the ability to walk is bigger than the likelyhood of status quo. She strongly recommends surgery, which - in her words - should be "rather uncomplicated".

We are very thankfull that it seems as though we have found a specialist on this who knows what she is talking about. However, we are appalled about the fact that Sebastian will need to go through another surgery. And this time in the spine, which to us seems very delicate. To even complicate matters, it seems as though we need to do another MRI-scan on Sebastian (with the right angles on the pictures) before a date for the surgery is set. The good news is that Dorte Clemmensen does not think that the tethering of the cord in the spine is acute, and surgery will most likely take place within the next 6-9 months. In the meantime we need to work on the fact that it will be the hospital in Copenhagen (Rigshospitalet) which will have to transfer the surgery to Århus - a move which potentially could prove to be complicated when it comes to bureaucracy. We will see.

Apart from a couple of days last week with a severe cough, Sebastian is doing fine. He keeps on saying the funnies things, as e.i. the other morning, when his first comment was: "I have a piece of good news and a piece of bad news for you. The good news is that I would like to keep living together with you. The bad news - I have thrown away!" Well, not that we knew that he apparently was planning on moving away from us ... ;-)