Sebastian and Marie-Louise are both on the Judo team now. Once a week they join a group of other kids and learn the basic judo moves.
Monday, March 12, 2012
Update
Spring is on its way, and we are all looking forward to seeing the sun a little more. Good news is that we have booked a week on Tenerife (Spanish island off of Africas Western coast) right after Easter. We are looking so much forward to having a little pre-summer there ;-)
Just before Easter we will have to go back to Århus for another MR-scan of Sebastians back. In autumn we finally got a little closer to why Sebastian kept having accidents (big and small), sometimes several times a day. It was a little annoying as he started school in August, and incontinence does not make socialising any easier. Well, Sebastian seemed not to notice much, and he made a lot of friends, despite his problems with his bowel and bladder control. By combining the charts from his growth and his 'accidents' there appear to be a connection between augmenting the doses in his growth- and metabolism (thyroid) medication. It seems as though that in the periods when he is 'stretched' more than the average (his growth is not a straight line, due to the medication) he gets the problems. On a chart it jumps to the eye. The neurosurgeon whom we are consulting in Århus is pretty sure that it stems from the tight fillum terminale (which is also a bit fatty) which can be seen on the MR-scan from 2 years ago now. To find out whether the fillum is still in the wrong place in his spine, we will have to make an updated MR-scan. If it still seems to be the case, the neurosurgeon will probably do a surgery in Sebastians spine to cut the fillum terminale, which should solve the problem with the stretching. The surgery will take place in late May, tentatively.
Right now Sebastian is not growing more than the average, and since November last year he has not had many accidents. For the last four weeks he has only had one, which of course is brilliant. On last weeks consultation with Sebastians growth doctor, we agreed that his medications will not be augmentet as long as we are awaiting the MR-scan and the conclusion of it. We will see.
Apart from this, both kids are doing good. Sebastian is happy about his school, and has learned to read! He read a bed-time story both for Tue and me last week. We are of course very proud of him ;-)
Marie-Louise is working hard on her pronunciation. Having had problems with her hearing due to fluid on both ears (and tubes x 3 to solve the problem), she is a little 'special' in her spoken language. We of course find that it sounds rather cute, and sometimes we do not even notice any more that she omits certain letters. However, she will start school in a years time, and we have to try to help her a little better now. It is especially the 's'-sounds together with a consonant that makes it difficult for her, and we a currently playing a lot of games where we have to say all the difficult words. Again and again. And again ;-) I am sure it will help - we just need some patience.
A month ago or so Marie-Louise learned to ride her bike, and we can now go on bike trips, all four of us. With Spring coming up, we will definately find places to go on two weels ;-)
Picture from our last bike-trip ;-)
Saturday, March 10, 2012
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