Link to Video Montage

January 24, 2008

Our beautiful princess past away the 21 st of January 07.35.

She had been fighting against pneumonia for almost 3 weeks. She was such a strong girl.
We are so happy for the years that we got with Tindra.

She's the best that ever happened to me.
I will never forget her.

I will miss her cozy hugs and wet kisses!

Right now she's jumping around on the clouds with her red shoes.

She eats a lot of ice cream.

Our beautiful princess!

I love you and will always remember you!

Tindras mum, Camilla
camilla.perfeldt@spray.se

Update December 30, 2007

Happy New Year!
Another 6 months has past!
Tindra has been feeling good exept from alot of colds and UVI.
Tindra is now 16 kilo and 92 cm!!! Big girl!
She´s getting better to hold her head. She walks in her little pony, the walking aid.
During the summer we met a lot of families that had children with rare chromosome disorders. That was really interesting. We will attend the meeting also next summer.
We have also been on a vacation to Cyprus. That was Tindra´s second visit there.
This year we hope that Tindra will be able to attend a training with the Petö-method. ( Hungarian Conductive Education)
We will get to know in february if they think it can help Tindra.
We have also met little Tindra from Finland! :-) 
They traveled all the way to visit us. (they went by car, boat and train)
During the summer we will visit them in Finland. That will be really fun and interesting.

Wish you all the best for 2008!

Mats, Camilla and Tindra

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Update June 23, 2007

Hello!
It's been about 6 months since last time. A lot has happened during that time. The most important!  Tindra has celebrated her 2nd birthday!

Just before her 2nd birthday she had a surgery on her soft palate and also removed 3 x-tra fingers. The surgery went very well. Before next summer they will close the rest of the palate.

Tindra is doing great!  At daycare she's really rowdy, making a mess. She's keeping her teachers busy. She rolls around all over the floor.  Just this week she got a walking aid to have inside here at home. She has taken a few steps, backwards and around.

We have just started our summer vacation.Next week will we attend a family meeting for children with rare chromosome disorders. www.noc.to    We are really looking forward to that. There are no other child with trisomi 13. But I think that we will have a lot in common anyway.

We wish you all a great summer!

Camilla, Mats & Tindra

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Update 1-6-07  - Happy New Year!
Tindra is doing fine! Except for problems with ears and stomach from time to time.

 She really enjoys being at daycare. She has got a new aid there, where she stands for 40 min. She’s been really good at holding her head. We will get one to have at home too. Great!!

Before the summer Tindra will have her cleft lip repaired. They will also remove some of her extra fingers.

In November we went for our first trip abroad. It was GREAT! Tindra was doing fine the whole week.

Wishing you all the best in 2007

Camilla & family
camilla.perfeldt@spray.se

Update: 9-22-06
Tindra is doing fine. Two weeks ago she had her surgery on her lip, she got a feeding tube in her belly and tubes in her ears. She’s feeling a lot better since she got the tubes in her ears.  In about 2-4 weeks they will change the tube in her belly to a small "button" (as we say in Sweden)  That will be GREAT!
 
Tindra has started at a day care this week. It’s really a great place.   Just 4 children and 3 teachers.  They do a lot of singing and training. I feel that it will be perfect for Tindra.  She will be there every Tuesday-Thursday.  I think that she will progress alot.
 
In the beginning of next year she will do a surgery for her cleft palate. Here are a few new pictures of our "new" Tindra!
 
Regards,
Camilla & family

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My name is Camilla and I live in Vasteras in Sweden.

My husband and I have a daughter named Tindra. She was born on the 22nd of April 2005. She was born about 6 weeks early. When she was 2 days old the Doctors suspected that she had Trisomi 13. She had a few x-tra fingers and toes. A split upper lip. When she was six days they confirmed that she had Trisomi 13 with a translocation to chromosome nr 14. She was very weak and had several breathing stops.

We took here home from the hospital when she was 8 days. She´s a very happy little girl. She loves to have her hands or thump in her mouth. She also loves to sit in mum or dads lap. She turned one a month ago and that was a great day.

She is doing fine! We are waiting for a surgery on her lip and to get a tube for feeding. It will be great to take away the tube in her mouth.

Last week she turned around from her back to her belly all by herself. We do a lot of training every day to make her stronger. A month ago she got a  serious Epileptic variant called Infatil spasm (in swedish I guess). But she´s doing better now since she got the right medicine..

Thanks to all for sharing there stories.
I will do my best to update the news regarding our little Tindra
Best Regards,
Camilla  camilla.perfeldt@spray.se

Update June 24. 2006

Here in Sweden we have just celebrated Midsummer. But this year we just went away to another city stayed at a hotel and had nice dinners.

Tindra are doing fine. But she’s really tired since we just changed her medicine.  Her stomach has been feeling great for 2 days. We have slowed down her feeding to 200 ml/h.  It might have been the reason for her stomach ache.

The 30th of August will Tindra have a surgery on her lip and also get a tube for feeding.  Great!  We will have to tape her lip until then and she does not like that.

We just got a new feeding chair for her and it´s really great. She loves it!  We have also borrowed a stroller where she can sit during our long walks.  She got so tired of just laying in the other stroller.

Wish you all a nice summer!