Story of Kristjan

Kristjan was going to be born 1 March 2010 but he came 18th February. He was blue and didn’t breath at all and it took doctors 20 minutes to get him to breathe, then he screamed. He was very little and cute.

Kristjan’s color was very yellow and he was lazy to drink and always crying. We spent one week at the hospital. He was my first born. His father was at sea and I was alone but I got help from my mom. The next year was very difficult because he cried 24/7 and didn’t want to drink or sleep. I got 15 minutes of sleep for a day in the first year. I went to ER many times but didn’t get any help. They said I was…mothersic… meaning it was in my imagination and I’m crazy. Kristjan didn’t laugh, smile, crawl or any thing and I knew something was wrong. When he was 18 months he got in kindergarten and they called me 1-3 times a week in the first month. There he was blue in face and had a difficult time breathing. One day they called me and he had very bad day and I got him to ER and I told the doctors that I didn’t want to take him home until they did something for him. We were in the children’s hospital and the doctor came to look at his heart in monitor and they discovered 2 heart failures. Patent ductus arteriosus (got closed at age 5), pulmonary stenosis (still has), and asthma. We were there 10 days at hospital and he got better after he got Ventolin and Flixotide. He was very difficult child and always alone and I thought something might be more wrong.

At age 3 he got very sick and we almost lost him.. He got the flu and streptococcus in his heart, mycroplasma, and dehydrated from that. We were in ER for 4 days and the children’s hospital for 10 days and when we got home he had to be inside for 5 weeks. We didn’t get any help at home and his father stayed at sea. Just me and Kristjan. When he was 4 years old in 2014 and after summer vacation I told them in his kindergarten that he has very difficult behavior and they told the same and 4 years of waiting and testing and we finally got in May 2017. He got analyzed and they found he had ADHD, Autism, bad talk understanding, stare epilepsy and Alagille Syndrome. He always had yellow skin, very itchy, and now his liver enzymes are getting higher and higher every month. Now in every year he and I have to go in for an MRI of liver and kidney 1 to twice a year.

Kristjan is 7 years old and will be 8 years February 18th. He has had 6 years surgery and finally at this year he has better hearing and can understand what we are saying. Last year we met neurologist and he put him on Conzerta and finally he can sit still for more than a minute and make eye contact. That is heaven for us. His itch is very bad and gets worse every week. The whites of his eyes are yellow.

I got Alagille Syndrome also but I don’t have any symptoms of it other than a heart problem and high blood pressure and myxedema.

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