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Mustasaari, Finland - translocation between 9 and 13 chromosome. (Almost one
13:th chromosome attached to the 9:th chromosome).
 Update
2-24-09
Hello!
Tindra is soon going to celebrate her second birthday within one month!
During the last year a lot has happened. The biggest things according to us
have been:
- Tindra's epilepsia (seizures) is now under control with two
different medications and the only time there is some problems are when
she has gained in weight. Then the medication needs to be measured.
- She was in a "mouthpalate??" operation for 2 months ago and directly
after that she started to love food!! And 4 weeks after that she had
gained 900grams in weight.
- Tindra is now all weekdays in daycare. We have a nanny here at home
and she has her younger child with her. That has helped a lot with
Tindra’s learning skills. She loves when Minea is coming.
- Tindra is a very happy child. Loves to stand and jump (when we are
holding her), loves to be tickled, and wants a lot of attention. Then
she loves the sun, to swing and to be in the sandbox.
- She also likes to be at her fathers (my husbands) soccer games and
best of all is to be at our summer house and to be in my fathers boat.
- Tindra loves all persons that hear to make a noise with her and her
best friends are my fathers girlfriend, Minea (the nanny's child), Kevin
(the nanny's older child) and Tindra’s father
- Tindra has communication training 3 times / month and physical
training 2 times / week for about half an hour.
For more pictures please visit:
http://www.familjeliv.se/hem/malinsoderman/galleri.php
Best regards from a sunny Finland
Malin, Tindra and Kristian
 7-15-08
Another 6 months has passed and Tindra celebrated her first birthday a
couple of weeks ago!
Tindra is a very active little person. She likes to be on the floor and
she has started to get up into crawl position but she cannot move forward
from there. And then she likes to stand and jump when we are holding her.
We have found out that she is almost completely blind and since there is
several problems with her eyes they cannot operate. But the doctor said that
she has seen this kind of problems before and if we are lucky it might start
to be better by it self. So we are hoping for that to hapen! But we know
that Tindra can see the sun because she always turns her eyes towards the
sun when we are outside.
Tindra's epilepsy has got worse. She is getting medications but they does
not seem to work. We are again going to try and give a bigger dose now for a
couple of weeks but if that does not help we will start to give her 2
different medications.
She is getting communication lessons three times every month and fysication
training once every week. But now in the summer everyone is on vacation so
there has been no training for the last 4 weeks now.
I'm going back to work after 2 weeks and our municipality has hired a person
that will come home to us and take care of Tindra while I'm at work. Here in
Finland everyone has the right to daycare and it is the municipality that
has to give every child a place while parents are at work. Now we live in a
very small municipality (only 17000 persons) so we have by our self chosen
the person that will come and take care of Tindra in the days. So now a very
good friend of us is going to work here and she will bring her younger girl
with her (Soon 2 years old) so that Tindra maybe will start to understand a
little about how to move and so on.
Tindra has grown a lot in the last couple of months and she loves mashed
potatoes with butter!
Please mail us if you have any questions
Loves
Tindra with family
 
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Hi!
We had a 6 months birthday party for Tindra for a couple of weeks ago.
Tindra is amazing! She likes to sit and stand and turns around on the floor.
She can eat normally and got rid of her nose/stomach line for about 3 months
ago. We practiced to eat for about 8 hours/day and after about 3 weeks she
started to eat whole meals without the line :-) We are so proud of her. The
doctor could not believe it at first!
Tindra is almost 60 cm long and weights over 5 kg!
In the beginning of December we went to Sweden to visit "big" Tindra who
also has Trisomy13. That was fun. They are a loving little family and they
have helped us very much!
We have also found out that Tindra does not have fully trisomy13 which they
thought in the beginning. Tindra has instead an unbalanced translocation
between 9 and 13 chromosome.
This friday Tindra will start to get communication help from a place called
Kårkulla!
Malin and family
malin.soderman@jippii.fi
 8-2-07
Our Tindra was born 6 weeks to early in June 2007. She was 41,5 cm long and
her weight was 1860 g. She was doing fine and did not need any help
to breath. When Tindra was 3 days old she was transferred to a hospital in
Tampere (Finland). There was a heart specialist that made an echo of her
heart.
The doctor started to believe that she had trisomy 13. They did a test and 2
days later it was confirmed. Tindra had full trisomy 13.
The doctors in Tampere talked about that she would only live for a couple of
days and if she would make it, her life would be full of suffering and pain.
Tindra was transferred back to the hospital in Vaasa. And she is now over 5
weeks old and is doing fine. She has moved home a couple of days ago and the
doctors are visiting her 2 times/week.
All doctors and nurses in Vaasa has been great! They do not talk about how
long time she has left since they do not know.
Malin and family
malin.soderman@jippii.fi |
