New years eve with Camille, Laura and Sylvester

Having fun with the new toys

Christmas with Stig, Malene, Anna, Elisabeth and Jørgen

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.

Christmas baking

Playing around

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.

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!

Visiting Bob-the-Magnus-Builder

Getting ready for Christmas

First sunday of December with the Gregers Clausen family

Opening the first present in December

Playing around

My name is...

Visiting Camille, Rikke and Lars

Drawing

Nice weekend

What a nice, relaxing weekend we just had. First of all: Sebastian made it the whole week through in kindergarten! Wouw! No infections - great. To celebrate this we went to grandmother Libbe and grandfather Jørgens summerhouse in Rågeleje as soon as Tue was home from work Friday afternoon. Libbe & Jørgen had turned on the heat when we arrived, and we cooked a nice dinner with lamb. Saturday we went to the near-by town Helsinge, where they have this impressive childrens toys and clothes shop called Troldeæsken. Sebastian had a treat in the kids corner with pop-corns, 'pebernødder', and a little playful puppy. Sunday we went to buy this years christmas tree (and a few other necessities for the 24th of December) before we went back to Copenhagen

 

In the afternoon we went to Tivoli Garden for some kids event, and Sebastian finally got a ride in the veteran-cars. It felt like being a normal family, with a normal need to play, relax and have fun in the weekend. How extraordinary! Speaking of normal: Sebastians appetite has changed dramatically over the past months. This past week he has been crying for food in the evening (at 5 in the afternoon!), he has eaten his breakfast with no complaint and a lot of it too, and he has even been hungry at lunch-time. Those growth hormones really has changed a lot, and the strain of him turning his back on the table again and again has been easing up. It makes everything so much easier - and so much fun. We are looking forward - very much - to seeing the results of the bloodwork made last week, concerning his growth factors. Even we, as his sceptical parents, can see a huge difference, in height, in weight and in appetite.

Car-driving in Tivoli

Cow-riding-boy Sebastian

Our new aquarium

Jumping with Anna

Happy kid!

Visit from Sweden - Thomas and Cilla came for brunch

Duck of Mortens's night

The rash is still there, but much better and not so itchy. A dermatologist told us yesterday that it is a virus-rash, which you can get after fever and infections. Well, we have seen quite a lot of that for the last three months! Sebastian has been in kindergarden less than 50% of the days since Summer, so we all do hope that he will have less of this in the coming time - with Winther coming up we will see about that. Despite the rash and despite a little cold that has been on for the last 4-5 days, Sebastian has been cheerful as ever. 

Especially on Saturday when we had the great family-the-duck-of-Morten-'s-night (the Danish version of Thanksgiving I suppose) at my sisters place - a homemade, vivid family competition on who can cook the best duck. Tue and I found ourselves with a perfectly roast duck, but how to convince the others that this must be the winner? We dressed it up a bit, and arranged it neatly, and surely this did the trick. 

We won the competition this year - and we better, you could say, as Christmas is to be held in our house, with duck as the traditional Danish main course. Sebastian do not eat duck, but going to my sisters place made him run in circles for hours before we were actually going there. My niece, Anna, is THE goodess (not only to Sebastian - she is a very sweet 8 year old princess), not to speak of 'Mene' (my sister Malene), 'Di' (my brother-in-law Stig) and of course 'Misser' (their cat Emil). Sebastian had quite a night running part-time after Anna, part-time after Misser, in a M&M's sugar-rush. We managed to get him to sleep a little before midnight!

Seeing Vera, Mette and Niels

Ready to go to kindergarten - with lunchbox

Guess the tune

Wrrraauuuu

A little song

Playing with grandmother Libbe

Speedcrawling

Good news

Pheww - it turned out that Sebastian did NOT have shingles. Great. What he has must be some kind of a rash. No fever and happy as ever. We will go and see a dermatologist as soon as they have the time. From today he is back in kindergarten - he did not even have the time to say goodbye to me! Saturday we had to go and buy new clothes for Sebastian - those growth hormones really seem to help a lot. He eats much better - although still not very adventerous when it comes to tasting new stuff - and has got three full meal-times a day. We are looking forward to December, where he will be meassured and weighed at hospital. It is such a relief not to have to worry about the food any more. Now we just have to work on plarality on that front in order to avoid him living on ice-cream, chocolate and biscuits (which would most certainly be Sebastians choice!).

Back in the house

Well, just as we thought that Sebastian was back on his feet after the last infection (he made it 5 days in a row in kindergarten this time!) we are now back in the house for some days. In the end of last week we found that Sebastian had a rash on the upper-right side of his chest. We did not think much of it until the weekend when it started to spread a little and get more red-ish. Monday we heard from the kindergarten that another kid had got the chicken pox, but fortunately we had Sebastian vaccinated this Summer. Today - just to make sure - we saw a doctor at the hospital, and she could not rule out that the rash might be shingles. Hmmmmm. Sebastian seems to be fine though, no fever and the rash does not seem to cause him any pain yet. He has been started on zovir-treatment today, and in a couple of days a bloodtest will show us whether it is shingles or not. 

Playing with Dino

Playing pirate at Samuels

Riding on Ida

On the phone

Visiting Juliane and her cat

In the tub

Snapshots