la Cour Marker Rasmussen: November 2007

More than two months without internet connection - and therefore no updates! We have moved from the house, had to live temporarily for three weeks in a flat until we finally were able to move into our new place. The telecom company let us down for several weeks, and we have finally chosen another company for the internet access. Being back online feels great!

We were so lucky that the take over of the house and the actual move took place in October. I have grown really big, and had the move been a month later, the pregnancy would no doubt have been a major obstacle. It has indeed been an effort to move from the house, and not least to pack and unpack all our stuff. But things have now settled a bit, and we are very happy for the flat that we have now moved into. It lies in an area with a large park and other green, open spaces, and the flat itself has great views. Sebastian is very pleased as well, as he has got more room to play on and a whole room just for his toys. However, when we tell him that he will soon have to share the 'toy-room' with his soon to arrive little sister, Marie-Louise, he does not seem convinced at all ;-)

Last week we went to see Sebastians hematologist, for the half-yearly check-up. The CBC was within normal ranges, and last months visit at the growth clinic showed positive results as well: the growth hormone treatment seems to work very well on Sebastian, so far without any major side-effects. He actually gains both height and weight, which we have been told is rather rare. When you 'strecht' a child with growth hormone treatment, the child will usually not be able to keep the weight-curve. However, Sebastian has gained more in weight than in height which is great news. He is still a small boy (13,5 kg and 94 cm tall), with delicate features, but now we see development which indeed is preferable to the no-growth we witnessed from he was 6-24 months old.

We had a long talk with the hematologist on the question of a possible future donor for Sebastian. Fortunately this is not an question we need to find answers for right now, but with FA it is definately a good idea to have a plan of what to do 'when and if'. At the hospital they have now assesed Sebastians HLA-type, to get an idea of whether his type seems 'normal' or 'anormal'. Unfortunately Sebastians HLA type seems to be 'anormal', which could make it very difficult to find an unrelated donor in the donor registry. Along with this news we are therefore trying to push for another consultation with the geneticists, with whom we would like to discuss the possibilities of PGD (ægsortering) again. Not that the chances of success are great, because they are not :-(, but we could at least try it out.

We are looking so much forward to our new little baby-girl, who will be born on the 12th of December. Amazing how fast time passes - we are getting very close now. We have settled for a cesarean - not least because we are not ready for any surprises this time. We want a controlled and planned birth, and after having taken the decision we both feel very calm and relaxed about it all. We both need to be able to get through another birth experience, although we know that part of the stress which we experienced during the first weeks with Sebastian unavoidedly will turn up again. In our point of view the best way to handle this, will be to try to control the situation as much as we possibly can.

Sebastian is doing great - not only with perfect blood counts - but over all. He has started to say the most funny things, and we often roll over laughing! A few examples:

In Sebastians kindergarten they usually go for a nap at mid-day. One of the grown ups 'sleep' the kids in - which usually takes quite a lot of patience. One day Sebastian asks Stine (one of the grown ups) whether she is married. "No" is the answer. "My mother is married" Sebastian carries on. "Then what about your father", Stine wants to know. "No, he is not married" is Sebastians answer! A conversation which has led to other conversations at home, as you can imagine :-)

Another day in the nap-room in kindergarten, he tries to convince Sidsel, another of the grown-ups, to go back playing, and forget about the nap. "Shouldn't we go next-door and play with the toys, Sidsel?". "No, it is time to sleep, Sebastian". A few moments later: "Why don't we go out fishing now, Sidsel?". "Shhss, Sebastian, it is time to sleep". A little later: "Then why don't we make a great party - is that what it takes?". Sidsels starts laughing ...

At the latest hearing test (1½ months ago). Sebastians hearing is tested without his hearing-aid on, in order to find out what his actual hearing loss is. The two very nice women who conduct the test have given him a head-set on, and one of them explains Sebastian that he must say 'now' as soon as he hears a sound. He says "yes, I will do that" and they start the test. Soon after we can all hear that there was a sound in the head-set, but Sebastian does not react promptly. A little too late he suddenly says: "Now, there was a dangerously silent sound" ("Der var en farlig tavs lyd"). Ehhh? Was there a sound or not? After re-testing approximately 10 times with the same nonsense answer "now, another dangerously silent sound", we are all in tears from laughing!

I hopefully will be able to update again soon - and will try to post new pictures and movies as well.