A piece of art

Sebastian has never been very keen working with his hands. With a missing thumb on the left hand and a rather weak thumb on the right hand it has never been a surprise to us, that painting, gluing, drawing and modelling were not a first priority to Sebastian.

However, he has now entered school. After the normal hours of school, the whole place turns into a recreation centre, where the kids can play and work in a whole range of different workshops (clay, wood, knitting etc.).

Yesterday Sebastian came out, proud, from the 'multi-workshop' with this creation:

A little taken my surprise of holding his very first piece of art in my hands, I asked him what it was? "A burial place" was his answer. "With a tombstone and an urn" (the white ball with the red pearl as the lid on the right). Ahh!

And yes, it was right, this past weekend we went to the southern part of Jutland to take part in the funeral (placing the urn in the burial place) of one of my mothers brothers Poul, who had died. He was an old man, with a full life behind him, and part of the grand family on my mothers side gathered in Abild for the occassion.

The weekend was much more than that, though, meeting up with cousins and relatives, diving down in the candy-markets over the German border, watching the birds and the North Sea by Højer Sluse and visiting friends in the northern part of Germany. But sure, the burial place and an the urn of Poul did make for a lasting impact on Sebastian. And then he was able - thumbs or not - to model his cardboard version of the experience. Great!

On top of it, the burial place had been a great inspiration to a lot of other kids in school yesterday. Apparently a whole range of tombstones, urns and fantastic burial places were created in the multiworkshop yesterday - inspired by the creation of Sebastian (which he, by the way, plans on using for his teddies - the cardboard box can open and close).

I wonder what the next piece of art will be ... ;-)

Life is sweet

Well, another half year gone by ... wow, time is spinning out of control!

We are all doing well, and have - touch wood - not seen much illness since January. Great! Two days ago Sebastian started school. We succeded in getting him into a school (Kongevejens Skole), which seems to be able to manage his challenges. First a couple of pictures of Sebastians first day at school:

Sebastian brought with him Scrabbers, his mouse (which in my unexperienced eyes looks more like at rat!) and a cool hairstyle ;-)

With his flowers in the schoolyard.

The kids brought out 'Kongevejeren', a lion which only comes out once a year, on the first day of school.

0.B. on Kongevejens Skole.

o.B. with their teachers Birgit and Jette.

Sebastian, William and Tobias L. meeting their 'uncles' Alfred and Benjamin from the 5th grade.

It seems as though Sebastian likes his school - even though he still speaks very fondly of his old kindergarten. And the first days have been a bit tough for him, with many new things to learn. On Friday we have an appointment at the hospital with a specialist in stomach issues, and we hope to get some good advice, as Sebastians 'accidents' seem to have augmented considerable. Mayby because he is nervous, we do not really know.

Marie-Louise is doing very well, and seems a little less 'red-haired' compared to half a year ago - she is behaving a little better, and the conflicts do not spin out of control as often. She is strong-willed, no doubt, but we can better handle it now. Her language is definately getting better and stronger, which helps a lot. We have asked for some help to her when it comes to pronouncation of sounds, which we hope to start up on during this fall.

She is a sweet, sweet girl with good creativity: she loves to paint and draw, cut and glue and play with play-dough. Here some recent photos of her:

On the bike in Rågeleje ...

... and on a horse in Dyrehaven.

We are still trying to get pregnant with a healthy child, which could also be a HLA match for Sebastian, via PGD. However, we have not been lucky so far. I have now started the 9th attempt with daily injections with hormones, and hope that this time we will have many and good eggs. Egg-retrieval is planned for beginning of September.

Along with this we have been lucky to make contact with a German doctor in Berlin, who is willing to help us out when it comes to the question of possible donor-material for Sebastian. In Copenhagen we have - so far - not received much help on this, except a fluffy statement telling us that Sebastians HLA type seems 'rare'. How rare, have we asked. But they have not been able to tell us more. It turns out that we need a more specific test on Sebastians blood, to be able to make a search in the international donor register. Information which could have been nice to have, already before we started the PGD cycles now 2 1/2 years ago! However, it seems as though we can get help from Berlin, if we manage to make Copenhagen do another bloodtest on Sebastian. The answer to that is still not in, but hopefully we know before next weeks routine blood-draw on Sebastian.

I hope to be able to post pictures from our Summer in the US and in Denmark soon. Thank you for checking up on our family ;-)

News from Ørholm

Better later than never! Life is treating us well, and we are all doing well at the moment.

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):

And then a bike and a lot of other presents:

A grand day! In the afternoon we baked a special cake and went for a little walk in the snow:

In the evening Marie-Louise had more guests and presents:

And then it was time for the cake:

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!