la Cour Marker Rasmussen: February 2008

Friday, February 29, 2008

Growing fast

Wednesday we went to see Sebastians growth doctor. The growth factors still look great, and Sebastian grows at an amazing speed: this time 4,5 cm in just 3 months! He is outgrowing all of his clothes - a whole new experience for us to have to go and buy new clothes all the time. Well, we certainly can live with that! Sebastians thyroid levels were a little low, so we will raise his dose of eltroxin just a bit. New check-up in three months time.

Monday, February 25, 2008

New blog!

Welcome to our new blog! We have decided to move our 'news-room' to this blog. We have put the old journal, photos and video-clips from the past in the archive.

For those os you who do not know us, we are a small family of four: Tue, Kirstine, Sebastian and Marie-Louise.

Marie-Louise has - so far - had a rather uncomplicated life: she was born on the 12th of December 2007, and is eating, sleeping and growing the best she can. She is the sweetest little baby girl and we are so thankfull to have her with us!

Sebastian was born on the 5th of July 2004. At birth Sebastian was missing one thumb while the thumb on the right hand is not working properly. What was much worse was that he was unable to eat due to duodonal atresia, for which he had surgery on day 2 of his life. While recovering from the surgery, Sebastians bloodcounts went down and 3 weeks old he was given a red-cell transfusion, which seemed to stabilise him, and his counts have been fine ever since. The transfusion gave the suspicion of Fanconi Anemia, and a bloodsample comfirmed his diagnosis. Apart from the thumb and stomach issues, Sebastian has hearing loss and wears a Baha-softband hearing aid and he is producing no growth hormones. We have started treatment with growth hormones in the Summer of 2006 and they have helped him a lot. A mutation analysis has categorised Sebastian as FA-D2, and we are continously trying to get a grib of the significance of this.

Despite all these challenges, Sebastian seems very keen on fighting every one of them! Sebastian is in a special kindergarten which is located nearby where we live. In all of Denmark this is the only kindergarten for children with immune-system issues. We are so thrilled that he can go and play with other children, and have relations with other kids his age.

Although we - as his parents - worry a lot about the future, we have been convinced by our little, happy kid that the best therapy is to spend our time together, to have a lot of fun and to experience Sebastians - and now also Marie-Louises - progress in life.

Here is a recent photo of Marie-Louise, Sebastian and Tue:

Sunday, February 24, 2008

Bee movie!

Sebastian went to see his first show: the bee movie. An organisation in Denmark, Families of cancer-kids, had organised a morning show, and Sebastian was hooked for 90 minuttes, only slightly distracted by his popcorns...