Thursday, December 31, 2009
Wednesday, December 23, 2009
Happy holidays!
Entering the holidays we want to wish you all a Merry Christmas and a happy New Year!
Saturday, December 19, 2009
Childhood talking
Global warming does not seem to have hit Denmark this year. We have snow all over the place, and it is cold to the bone. However, we regret the inability of the worlds leaders to reach a strong agreement here in Copenhagen for the climate summit - they definately had the chance to make a difference. Too bad!
Christmas is coming up and we are looking very much forward to spending the holidays with Sebastian and Marie-Louise. Last weekend we celebrated Marie-Louises 2 year old birthday. A great day, with a nice family breakfast in the morning and a little party in the evening with Libbe, Jørgen, Marie, Thomas, Emilia, Malene, Stig, Anna, Thomas Emil, Aksel and Irene. Pictures are on their way. She is just getting so big and has started to talk a lot. Most of it in Chinese we think, but some of it we understand and that just feels so good. Marie-Louise is strong-willed, but also very caring, very sweet, funny and adorable. Well, the mother speaking ;-) I will try to post some pictures from the day soon.
Sebastian is doing fine. For the last 3-4 weeks he has started to ask us to talk about his childhood. He will say, e.i. at bedtime "mom, let us talk about my childhood. You start" and then both Tue and I have told him all kinds of fun stories from when he was a baby. One day he wanted to hear about his birth. And the days that followed. And suddenly it has occured to us that this is Sebastians way to ask about his illness. We have been a little worried actually that he never ever asked about e.i. his missing thumb, his hearing aid, his big scar on his tommy etc. But now, finally, he has found his way into this. We have not wanted to slap the facts in his face, and have been adviced to let him start asking himself. Well, he just did not. Untill now. Two weeks ago I asked him directly when he started his 'let's talk about my childhood': "what should I tell? Some of the fun stuff from when you were a baby, or the illness-stuff". Without hesitation he said: "the illness-stuff". It is definately brewing in his head and we talk a lot with eachother on how best to address his need to know. I think we are on the right track, and will be able to help him through this very delicate phase the best we can.
Tonight Sebastian tried to distance himself from the 'Fanconi' illness as we call it. He said "I am no longer ill with Fanconi". "Unfortunately, yes you are Sebastian". "No, I do not feel ill", was his answer. "No, now you are doing fine. But one day your bloodcounts will most likely drop, and then we will talk about how to correct this". "You are lying, mom, my bloodcounts will not drop. It is not true". "Well, as I said, you are doing fine, and you numbers are very impressive for the time being. We would like them to stay this way, this is why the doctors help us monitor them often. In order to keep you healthy". This is really heavy stuff to discuss with your 5 year old child. But I believe that Sebastian will take his time to let it in, and we will try as well as we can to help him digest.
Since last update there has come yet another diagnosis to the long list: phimosis (forhudsforsnævring). It is not a big thing, but it always hits us finding new problems, and this will have to be corrected by surgery, which again means hurting for Sebastian. Not really our cup of tea. But it has to be done. The surgery is set for the 4th of January, and will hopefully be short and uncomplicated.
Saturday, December 12, 2009
Monday, November 16, 2009
What to believe?
After having called the neurosurgeons office in Århus several times, the doctor finally came back with a written evaluation on the MRI scan, which she had looked through as well. Contrary to the doctors at Rigshospitalet (Denmarks biggest university hospital in Copenhagen) she found that Sebastian has a tethered cord. Actually, the 'filum terminale lipom' (fatty tissue in the end of the spine) which the doctors in Copenhagen called a 'casual finding of no importance' does indeed seem to be of importance. It is the tethered cord in itself, and being a casual finding or not, it needs to be addressed.
We are still trying to learn more about tethered cord, but one thing stands out: if it is not dealt with as early as possible, it could lead to irreparable damage of the cord, resulting in total loss of bowel, urinary and leg control. Whether or not the neurosurgeons will chose to try to untether the cord by surgery, we do not know. Right now, with Sebastian being 'dry' during day-time, one of the main symptoms seems to have gone away for now. It hopefully buyies some time.
We are of course very eager to get a consultation with the neurosurgeon in Århus, and hopefully we can go and see her - and ask our tons of questions - very soon. Upon mentioning this new diagnosis, and not least how we had to dig it up ourselves, to our primary doctor (the hemathologist), he now wants an explanation from the neuropeadiatric team at Rigshospitalet: why would we have to fight to get a scan in the first place, why was it not performed immediately, and why did they not detect the tethered cord? We can hardly wait to hear the 'specialists' answers ;-)
As we are going to see the growth doctor next week, we are of course preparing questions to her as well: is it still 'safe' to stretch Sebastian so to speak with growth hormones, when the growth spurt is possibly tethering the cord? The problem is that the growth doctor most likely do not know anything about tethered cords, as well as neurosurgeons most likely will not know anything about growth hormones. We will see.
On a positive note we went to see the surgeon who descended both Sebastians testicles. They have both stayed in place, which is great. The surgeon had found them to be VERY small, and could not promise that we will not encounter fertility problems ahead, but we already know that fertility is very rare in FA patients. Having both testicles down makes it easier to examine them, which was our initial goal with descending them.
The latest bloodwork showed still relatively stable counts. However, both platelets and white blood cells were below the normal ranges, only with a little, fortunately. We have a new appointment in three months time.
For the PGD, we will have another try starting out in December (the November cycle of course collided with the clinic-holidays). We cross our fingers that we will succeed - I am longing to become pregnant again!
Apart from our rather full hospital life, we are having a good life in Ørholm. Marie-Louise is doing great in her creche, and she has started to form words and small sentences. Many of the word she forms is still mystery to us, most of it is certainly chinese ;-) She loves to cuddle now which goes very well with Sebastian - and us of course! Last week Marie-Louise finally broke the television code, and she now watches Teletubbies (oh no ...) and a little bit of childrens tv. At her age, Sebastian had his first 20 or so DVD's which he couldn't live without. The two of them are just SO different. Which is very funny and interesting to watch.
Sebastian is doing great in kindergarten as well. He loves it when he can play with Frederik, Sofie and Tue both in kindergarten and at home. For the time being he is very much into playing Wii Mario Cart - a great exercise for his thumb - as well as Lego Star Wars. He has a great imagination, and loves to play.
Wednesday, October 7, 2009
Already autumn?
Another couple of months of hectic life in Ørholm. We have had a very pleasant Summer in our new house with a few small trips to the Summerhouse in Rågeleje, a trip to Legoland and seeing friends and family. Time is flying, and although the weather fits only too well, it is odd to know that it is already autumn again.
In August Sebastian had surgery to take down what we had planned to be one testicle, which had not descended on its own. When we turned up on Monday the 3rd of August, both testicles had decided to stay up, and we agreed with the doctor that both should be taken down. Although this would not make it less painfull afterwards. As no one had thought about having bloodwork done prior to the procedure, and as it was almost three months since the last CBC, the surgery was almost cancelled by the anaestetics, but we ended up meassuring the hgb as sort of an indicator. Well, the surgery went well, but Sebastian was very poor for the whole day, and ended up being sick to his stomach. The following days he felt better, although the doublesided surgery did not make it easy to walk. After a weeks time he was able to go back to kindergarten, and all in all it seems like he got through it allright. We have a check up in November on this.
As written in the last update, a neurosurgeon had asked for a MRI scan on Sebastian to detect a possible tethered cord in his spine. The scan was done in the beginning of September, and a week later the doctor called me with good news: no tethered cord. Sebastian has on top of this had a good bladder and bowel control since mid-July, so all in all good news. However, a little fatty thing called a fillum terminale lipom was detected in the spine, but as the neurosurgeon put it: "it is most likely a casual finding of no importance." After having searched the internet I am not so convinced about that. A lipoma could possibly lead to tethered cord later on, as far as the info on the internet tells me. We will see. I have asked for a second opinion from a doctor at another big hospital here in Denmark, but she has not called me back yet.
We have gone through another round of PGD, with relatively positive results: 14 eggs were retrieved, and one of them a perfect HLA match for Sebastian. However, it did not turn into a pregnancy this time as well. We will just have to try again, hopefully starting out again before Christmas.
In mid-September we went to Geneva, Schwitzerland, to visit our friends Rikke, Lars, Camille and Laura. We stayed at their place for three days, and the kids had a blast. We were treated like kings and queens, and had once again expelled Rikke and Lars from their bedroom! Marie-Louise grew very fond of Rikke, who knows how to treat a real little lady: juwellery, hair-slides, high heels, pearls and lots of princess outfits! She was just SO happy! We went to see Geneva for one day, and tried quite a few playgrounds in the area. It was great to spend time with the Paganos in Versoix, and we do hope to be able to see them all again soon.
Wednesday, September 16, 2009
Tuesday, September 8, 2009
Monday, September 7, 2009
Thursday, August 27, 2009
Saturday, August 22, 2009
Sunday, August 16, 2009
Tuesday, August 11, 2009
Friday, August 7, 2009
Thursday, August 6, 2009
Sunday, August 2, 2009
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