Since September Sebastian has only had one general anaesthesia, and that was last week. After several years of discussion with our Danish hemathologists they finally agreed to make a bone marrow biopsi and aspiration. This is something which is done once a year on FA-patients in most countries, if they have stable blood-counts as Sebastian has. But not in Denmark. Here the doctors only do the examination if the bloodcounts start to decline.
From what I have read and heard in the FA community, the normal bloodcounts can often 'not tell the full story' when it comes to abnormal behaviour of the marrow. And therefore it needs to be monitored regularly. Tue and I are not very keen on putting Sebastian under (again), and we have not pushed for this examination too hard. However, a closer look on his marrow, now that Sebastians counts are stable, does seem like a very good idea now. In this way, we have a better knowledge of how 'odd' the marrow was with normal counts and can compare this to his marrow when and if the counts start to decline.
The procedure only took 1/2 hour, and Sebastian woke up well this time. He was not very keen to go down to the theatre this time (he screamed his lungs out for 20 min!!!) - which is very understandable of course. We had bought (bribed!) Sebastian with the LEGO Atlantis portal set, which made him shine as a big sun after waking up. Other than being a little tired and pale in the days after, Sebastian has recovered well.
We do not plan to repeat the biopsi every year from now. At least not if the counts stay stable. Instead we have arranged to send a bloodsample to Berlin twice a year. In Berlin researchers have found a way to detect changes in the marrow in a simple bloodtest, and Sebastian already gave blood once. The test showed no changes in the marrow, which we therefore hope will be the same answer as will be found in marrow biopsi/aspiration.
On a very positive note Sebastian keeps being very healthy. He started in a normal kindergarten in April last year, and we were all prepared for him to get sick from meeting the bacterias from the 'real world'. He did not - rather on the contrary, he has only been home with illness 7 days since April! Both Marie-Louise and Sebastian went down with a lung-infection over Christmas, but a good dose of penicillin worked very well on both of them.
No new GA is in the calendar, and I really hope that Sebastian will get a little break now. He benefits a lot developmentally when things are calm medically, and when he gets to play with kids his own age. Sebastian has started working a lot with his fingers, and do a lot of beads, some writing and some drawing at the time. He is still very fond of LEGO of course, and can now build small sets on his own. It is very good practice!
Choosing a school for Sebastian has turned out to be a very messy affair. Tue and I have visited 7 schools, and have tried to get the municipal system working, trying to make them realise that especially the hearing loss will need some special attention. This has proved very difficult, and meetings and e-mails have piled up on the case. Yesterday we sent a complaint to the mayor, in the faint hope that something can be done to ensure that Sebastian will be able to go to a school that can cope with and has the space nescessarry to his handicaps.
It has been very frustrating in the process. Having lost confidence in the municipal system, we went out to visit a little handfull of private schools too. However, the general attitude to children with a diagnosis (and Sebastian has 17!) is depressing: at one school they would not even let us come visit! At another they just made it clear that it could be VERY difficult to get admittance. Then finally, at a nearby Catholic school they at first seemed interested in Sebastian. However, when they heard and read a little more about him, they called us and said that they could not admit him. And that they thought that he was better off in the municipal system. Back to square one! Well, we hope to get some answers within the next few weeks, and are first and foremost thrilled by the fact that Sebastian has finally seen the light about school (up untill now, school was 'stupid'): "I can learn how to read, so that I can read Donald Duck stories myself."
Marie-Louise started kindergarten in December, and turned three years old on the 12th of December. Both of them milestones in her life, which she is very proud of. In kindergarten she is together with her friend Mette (from the creche) and they have a lot of fun. Once a week they play also in the afternoon, and usually get on well :-) The birthday had been planned for a whole year. Especially the part about the cake. First some pictures from her day:
First Marie-Louise got a very special present from Sebastian:
And then a very special present from Patricia (from Camp):
In the evening Marie-Louise had more guests and presents:
A couple of days later, Marie-Louise had invited her kindergarten to her birthday in our house. They played, had lunch and cake - another great day!:
On the 13th of December, Sebastian was part of the Lucia procession. The oldest kids from Kindergarten sing the Lucia song, and walk - all dressed in white - with lights through the whole building. As you can imagine, parents and siblings are having a great time watching the show! Sebastian was a little reluctant in the beginning, as they were to wear all white. He prefers black, as you maybe know! A pair of white stockings and a good influence from his friend Anne, convinced him that the Lucia procession was a must!
Just before Christmas we also had another PGD attempt. 14 eggs were retrieved on the 11th of December. However, none of them had the right HLA-match, and we will therefore just have to try again. We are also trying to figure out when to stop the attempts. I will turn 40 this Summer, and we would really like to have another child. The decision is a tough one though, as we know that Sebastians HLA-type is very uncommon. First of all we hope to be able to try again, for the seventh time, in January/February.
Thank you for taking your time to visit our family!
