21st of December

4.13pm Sunday afternoon. Sunday is a rest day for Jaana, so she right now recharging for next week. Even though it is Christmas, she has more work to do, all until Christmas eve. After that a few days holiday before a New Year begin again. She has been okay lately, putting in some effort. She is still working a lot on coordination and hip balance. A rocking horse we gave Camille for Christmas a few years ago has been dusted off and has now come of use again.
Kids are great and Camille is counting days until Christmas. Her wish list included a computer, iPod and a mobile phone and last time I checked with Santa, she might be a bit sort on all those... Instead I know she will be very happy with all the other nice things she will get. The Christmas tree is all inside and ready with artificial snow bought in London. I put the lights and the kids put up all the ornaments.
Ludde has a friend for a sleep over tonight and we might all go diving tomorrow morning.
My dad came over from Sweden yesterday and Jaanas mother will come on the 29th and stay until the 12th. Weather wise, I will not bother to make you jealous...

9th of Decmber

1.24pm Tuesday afternoon. Sorry for the long intervals between new postings, but there really has not been too much to write about. Jaana is working along and the Neuropsychiatrist is coming down on Friday from the US. Last week Jaana did a great job and all the therapist were very happy with what she did. She participated and actually wanted to do the exercises. Hope that it last for a while since we still have a long road in front of us.
Kids are doing fine. This is the last week in school before their three week Christmas holiday. We will stay here for the festive season and maybe travel a bit during the winter break in February instead.
Parmi got her new passport without having to travel, which made us all very happy. I have applied for a new passport for Jaana over the mail, so let us see how that goes.

18th of November

11.56am Tuesday midday. It has been some time since the last post, due to a busy time with school holidays and other travels. Jaana has been working, but sometimes her motivation is a bit low. I think she is looking forward to a bit of slower time over Christmas, even though there will be some exercises then as well. She is talking weekly with the neuropsychologist after which she puts in a bit more effort. She still is quite depressed and such, but we all try to keep her spirit up. Yesterday during her speech session, she was asked how she was feeling and she spelled out: 'S', 'H', 'I', 'T', and smiled! The humour is no problem.
Kids are fine. Three more weeks and it is Christmas holidays! It is a bit hard to imagine with 31 degrees, sun and no real extravagance retail. In the US, I passed IKEA to pick up some herring, ginger cookie dough, julmust etc so I guess we will be getting the atmosphere soon. There will be quite a few families staying around for Christmas so we have decided to have a Christmas day bbq at our home on xmas day. Should be fun.
Parmi is doing fine, and again I need to reiterate her fantastic character and her energy. She is doing so much for Jaana, that you could not believe! Without her, Jaana's, my and the kids life would look very much different.

24th of October 2008

6.37pm Friday evening. The last week we have had some doctors over from the US. The first batch was the Neurologist with a friend of his who injected some more botox for Jaana. This is already taking effect and the arm is yet again easier to move for her. Neurology wise there is no change, as expected. Later in the week we had a Neropsychologist in from North Carolina. She asked Jaana a lot of questions and had quite a bit of information to give us in the end and had some great concrete ways we could change and improve her day. She was quite tough with Jaana but the result is that we now know that Jaana is quite in a depressed state of mine with great fear of dying, having no future, never improving, guilt etc etc. We all know that is wrong, but as I am sure you all can appreciate, we would all likely feel the same. Anyway, we will need to be a bit firmer with Jaana and she will need to do more things on her own, even if she cries. Obviously, this is very difficult for both Parmi and myself, but we have been instructed to force her even more. The psychologist also met and observed all the therapists. She was very impressed and happy with all their work, but also suggested a few changes and we will need to structure one more hour in the afternoon with activities. The issue is to have the same schedule every day to build up a pattern. This is very well executed in the morning, but needs some more work in the afternoon. Some computer work with her new toy, painting and social gatherings etc. I will get a fully report from her within a week or so and we will schedule her return in around 6 weeks time. Funny enough, what she thinks Jaana's lack of initiation is caused by is her depression and not any medical/neurological issue. As I have always written to you, Jaana is capable of much more than she actually does. She is afraid of even trying and she thinks that she will never be good anyway. We need to break this pattern of bad thoughts and get some good ones in there instead.
On Sunday I will take the kids to Miami and then drive straight to Orlando and to visit Donald and crew. It should be great, and I have planed a few things in advance so I hope we will not have to wait too long in queues for the rides. We will be returning on Friday when my father is also coming. Then later in the following week, I will travel to Europe for a week.

15th of October

6.41 am Tuesday morning. Jaana has just received a new aid for her speech therapy. It is a computer, but with very special software on it for her to choose words, events or actions rather than just typing whole sentences. It will take some time for her to get used to it and be able to use it, but it might be a good tool until she starts to speak more regularly. The neurology professor is coming down from Miami this weekend with a colleague to give her another dose of botox treatment in the arm. This will assist the training of the left arm and and shoulder as the muscles relax a bit easier. In further a weeks time, there will be a neuropsychiatrist coming from North Carolina, US, to examine not only Jaana's state of mind, but also why she lacks the initiation and how (if possible) to assist it coming back. She will do and 6-8h examination and then come up with a report afterwards. Otherwise, life is ticking along here for all of us. Jaana is still having her therapy sessions everyday but will get a few days break as the therapist will attend a course in Miami.
Kids are fine and are doing well in school, even though little Camille has been a bit naughty and not been listening to the teachers and was sent to the office! She had so much fun playing with friends instead so today she will need to go and apologize. Totte and Ludde are both great. Ludde is definitely a teenager. I can see clashes will come around, and I will have to choose my battles.
Parmi is also fine. I think she enjoys her cousin Annas company very much.
The last two weeks it has been very rainy over here. I truly hope it will stop soon as it is very muddy and everything gets a bit dirty around the house.
Oops almost forgot, on Wednesday we will go and have a look at a Great Dane puppy! That will be our third dog. It is superb to have them around for company and protection as a burler alarm.

1st of October

4.53pm Wednesday afternoon. I just returned from a very short trip, but Jaana has been doing her stuff everyday as usual. She had some mums from school over and they cooked and eat lunch together. Jaaan seem to enjoy listening and participating in the conversation and like to get the latest gossip from school. Last Saturday we all went to the movies! All of you know that Jaana loved going to the movies so this has great for her. We say Mamma Mia, which we all enjoyed. As with books/movies, the musical was a lot better than the movie, but anyway... After the movie, we went for a pizza (to the Italian pizza place... Mamma Mia!) and had fun! On the Sunday, Jaana was exhausted and slept all day almost.
The kids are well! I have promised them that we shall go to Orlando and do the parks on their October break. They are all looking forward to this, specially since we did not go anywhere for the summer.
Otherwise, I have two friends coming for a few days, the neurology professor is coming just after that and then it is Orlando time. Just when we get back, my father is coming for a few days while I have to do another trip to Europe! So, October will be a bit hectic but fun for us all!

One year ago

Exactly one year ago was the worst day of our lives. Jaana was extremely close to leave us and the fear and sadness were endless. A few days later her chances improved and so did her skills, just to be later hammered down with a dangerous and aggressive mycoplasma bacteria. At the low point, she did not respond at all nor was she able to move any part of her body, not even her little finger.

The reason I bring you all back to this, is to point out her remarkable and extraordinary recovery. She now can sit for hours, hold up her body straight, move every muscle, stand up with support for minutes, control her trunk and much more.

Jaanas recovery will continue for a long time. One has to realize that the steps might get smaller, just for us to be surprised with a huge leap one day. I am still confident that she will, with a some lighter aid, be able to walk again.

To all of you following her progress from far away; we thank you. I always tell Jaana about your comments, even if I do not read every single one of them to her. She appreciates this very much and I know she misses you all.

From Jorgen, Ludwig, Jonathan and Camille, we would like to say to my wife and our mother that we love you very much and will always do so! We are blessed to have you around us every day.

Jorgen, Ludwig, Jonathan and Camille