la Cour Marker Rasmussen: December 2006

Friday, December 22, 2006

Merry Christmas

Sebastian is doing pretty well for the time being. With appetite, good health and growth we find ourselves very lucky and look forward to the christmas holidays. We wish all of you a merry christmas and hope you will share peaceful moments with your loved ones.

Wednesday, December 13, 2006

An answer

We spoke to Sebastians hematologist today and he was not concerned with the increase in the HbF levels. It is quite common in children with FA actually - why this is so science does not yet know for sure.

He told us that he does not use the level of HbF as a meassure of or sign of leukeamia. What is crucial is the CBC-results and so far Sebastian is doing fine. We are of course very relieved.

Tuesday, December 12, 2006

On the train with Stig and Anna

Eating with Anna at Wagamama

Hospital consultations - and a grand day in Tivoli

The last couple of weeks has been busy with various hospital consultations. The visit at the audiologists went well, and Sebastian impressed with his talking. However, the growth hormones have not changed anything in the auditory channels, so we decided to stay on using the BAHA-softband hearing aid, which seems to work well for Sebastian. Last wednesday we started the day at the physiotherapist, who was surprised to see how well the growth hormones have influenced Sebastians motor function. We decided to meet in 5-6 months, where the physiotherapist would perform a formal test on Sebastian and where we could talk more about whether he will need special therapy regarding the hands/thumb. Sebastian charmed his way through and ended the session with a kiss to Ulla (the psysiotherapist) - it seemed to go down well with her ;-). Later that day we saw Sebastians hematologist, who is very pleased with the latest CBC - and so are we!

Friday we went to see the 'Growth' doctor.Sebastian has been followed due to very poor growth since birth (he has been growing at a very slow rate, approx. -4/-4,5 SD). After a couple of very tedious tests of his ability to produce growth factors (which he does not have at all) it was finally decided this spring that he should start on growth hormones. Sebastian (who is soon 2½ years old) has now been treated for four months, and we are all astounded with the results: since 2^nd of August Sebastian has grown 8 cm and his weight has gone up as well (from 8,9 kg to 10,3 kg)! On top of this his appetite has increased immensely from almost nothing to now three big meals a day. He has developed muscles and are now ‘firmer’ and stronger.

The growth doctor told us Friday that a biochemist had called her and told her that he had found increased concentrations of fetal hemoglobin in the recent bloodsample (to check the growth factor levels). The growth doctor being a growth doctor did not really know what to do about this information, but we asked her of course to tell this immediately to Sebastians hematologist in case it was a sign of something. We are now waiting for the hemotologist to answer.

Despite this piece of news, we managed to have a lot of fun over the weekend. Especially Sunday where me met up with Malene, Stig and Anna in Tivoli Garden. Sebastian rode his favorite veteran-cars, went on a H. C. Andersen fairy tale trip and helped Tue win at the horse race. No wonder he went to bed a little early Sunday night!