Sebastians hand-surgery has turned out very well. When his right arm came out of the cast it only took a week or two before it was completely healed up. The scars do not show much, and the ability to grip has certainly improved a lot. Great. The thumb is still rather weak muscle-wise, and we will see over time if this will improve. We bought a wii-console with a Mario game on it, but the thumb is still a bit too weak to keep the gas-pedal down. Some excercise will hopefully help. Sebastian has not changed his opinion on drawing - it is still a no-go for him, and maybe this is just how he is.
After the first round of antibiotics, which all of us had because of the streptococcus infection, I went down with the infection again. Then a new 10 days round of antibiotics, this time fortunately only for me. My immune-system must have been a bit off, as I got yet another throat-virus after the second round of streptococcus. This time not a bacterial one, but another 3 days in bed and with a very sore throat. Since then my system have stabilised, but off course I cannot but think that the first round of PGD - and all the medication that comes along with that - might have put my body under serious stress. We will see how the next round goes. I will start on medication in late July, and egg-retrieval will be around end-August.
Because of these PGD-dates, our holiday plans to both Norway and the US (for the Camp Sunshine) have had to be cancelled. We are very sad not to be able to travel this Summer, visiting old friends in Norway and attending the Camp and our FAmily in Maine, but we have had to put priority to the PGD-process this year. Hopefully we will be able to go next year. With our new house and a beautiful Summer weather-wise so far, it is somehow ok to have to stay home. We are planning smaller 1-2 day trips from here, hopefully to Legoland (again!) and visiting friends and family around Denmark.
Sebastian has had a prolonged period now with increasing problems of incontinence. From having accidents maybe once or a couple of times a week, he has now had almost daily accidents - both big and small - for a couple of months time. I have consulted with the FA-email-group and a couple of suggestions led us to look into the possibility of Sebastian having a tethered cord. A couple of weeks ago we saw a neurosurgeon who recommended an MRI scan of both spine and head. At birth, it was found that Sebastian had dillitated ventricles and he was followed with a couple of scans for hydrocephalus. This did not turn out to be the case, but with this 'history' the neurosurgeon thought it was reasonable to take a look at it all with a scan. However, the system is working rather slow, and we have not even got a date for the scan yet. I guess it is going to be in August or September.
In August, Sebastian is going through a surgery to take down a testicle, which has not descended on its own. The risk of cancer is higher if we let it stay where it is, and together with the increased risk of cancer for FA-people on top of this, it will be a good thing to get it down, which will make it easier to screen. The surgery is sceduled to the 3rd of August. It is a same day procedure, so it should be manegeable.
Since Wednesday last week both Sebastian and Marie-Louise has been ill with hand, foot and mouth disease. The both got very high fevers from it (40 + dC) and Marie-Louise got ulcers on her feet and hands. Sebastian got ulcers in his mouth, some rather serious ones, very big and painful. He has not eaten much - not even ice-cream, but he seems to be allright though. He can only come back to his kindergarten, when the ulcers are completely gone. Probably next week. Marie-Louise is back in her creche as of today, and her ulcers has already dissapeared.
On Sunday Sebastian turns 5 years old. It feels odd even to write this. His FA-diagnosis, his many issues related to FA and his complementation group (D2) would all suggest that we at this age already would see general problems with his blood. However, our last appointment with Sebastians hemathologist once again showed some impressive counts, all of them still within normal ranges. So we greet this coming event of a 5 year birthday, and are looking so much forward to celebrate it with friends and family. Sebasian has an extensive list of wishes, most of the items naturally in black (including a black toy harpoon!!!), and it is just such a thrill to watch him counting down the days for his candy and gift day.
