Sunday, November 1, 2009

tis the season to be sick!

My kids and I have been sick so I havn't been posting anywhere for a while. My son had H1N1 and was just really sick and Sabrina and I got sick too!..... She is still having mild fevers so I think I will take her to the doctor to see if she has more than I can help her with. They really miss her when she is not at school! She is just such a sweetheart and we just love her so much. Being sick for her is so hard because she just simply doesn't understand everything I do. Like taking her temperature, not in her mouth the other end. Although I tell her everything I'm doing and I think she knows I am helping her. Here are just some fun new pictures:

Thursday, September 10, 2009

One day at a time!

While my mom was still in the hospital, my sister Shahala and dad traveled down to see me and to bring the colostrum that mom pumped for me. Shahala and dad were both allowed to hold me (Sabrina) and stay with me for quite a while. My older brother Kyle stayed home to tend my other siblings, although they would have all liked to go down they weren't able to. My mom was released from the hospital after a couple of days and came to see me! She was told all about my diagnosis by my genectics doctor and a genectic counsler. Mom learned about the programs that were out their to help her take care of me. They didn't want my mom to try to nurse me, they told her that trisomy 18 babys don't have a strong enough suction to nurse. Boy were they wrong, after my mom got me latched on I nursed really well. Before this they had feed me once with a tube that went to my stomach and then bottles. This really helped me to do better, to nurse and be with my family. My mom had to go home in the evening, so it was back to bottles but she left more milk, so it was all good! I wasn't supposed to go home for two weeks but they called my parents and told them I was doing good and had gained enough weight that I could come home! Two days later I was on my way home! I was on 2 liters of oxygen and needed a meter that measured my oxygen level and they couldn't go home with me. A company met me at my house after the long drive home to bring my equiptment. The ride home was hard I cried alot, and mom and dad had to stop to change me and feed me. When we got home my brother Kyle was nervous about meeting me, but he just feel in love with me when he looked into my eyes. He held me while they set up my oxygen and monitor. Kyle was 16 when I came home, their were a few kids with disablities at his school and he was nice to them but he was unsure about how he would feel about me. Kyle and Shahala helped my mom take care of me a lot. My other brothers liked taking turns with me but they were still young and need help when they held me. They held me and talked to me and pushed the button on my monitor a lot. When I first came home my oxygen level didn't stay over 85 as much as it should and when it went down a loud alarm would sound. The doctors had told my mom not to take me anywhere except to my pediatrian for a while, my immune system was very weak. My mom continued to nurse me, but my body was slow to adapt and to gain weight. My pediatrian wanted to see me every three days for the first month, they would take me right to a room as soon as I got their because they knew my immune system was very weak. My doctor was so good (he was there when I was born) he ask his staff to read up on trisomy 18 so they would be prepared for me and they were all so nice.

Monday, August 31, 2009

Here I am!

I was born February, 1998 and I weighed in at 6lbs. 5ozs. I have dark hair, all my sibling were born with hair. After my mom went to the hospital she was in labor for a long time about 10 hours. I wasn't coming and she didn't dialate so they gave her medicine to help her dilate didn't work. My little heart didn't like all of this and it started to show stress on the baby heart monitor. So my mom was preped for a c-section. And about an hour later I was born, I did ok for a couple of hours but then the nurses called my doctor back to the hospital, I was having trouble with every 10th breath. They put me on oxygen and then the doctor noticed some other problems with my hands and my heart. So he called the doctors at Primary Childrens Medical Center in Salt Lake City Utah. And after a talking with them, it was decided that I needed to be transported to Salt Lake to Primary Childrens (abbr: PCMC). And of course it was a severe snow storm so I was taken by ambulance, it was too cold for the helicopter. Papers were signed by my mom and pictures were taken by the EMTs that run the ambulance. PCMC sent their own ambulance up to get me because their ambulance carries special equiptment for children & infants. I was put in a glass incubator and off we went away from my mom. She couldn't leave the hospital yet, she had complications after I was born.

just starting

Hi my name is Sabrina I was born with trisomy 18, I am also mosaic 80% of my 18th chromesome has a whole third piece 20% is normal. Where the 80 and  20% are located in my little body are completly random. My genetics doctor said that you can take a piece of my liver go a 1/4 of an inch take another piece and the genetic results would be different. One piece could be normal, one piece could have trisomy 18. This is how my whole body is, when people meet me sometimes they want to know if what I have is contagious. My mom lets them know that you have to be born with this, they can't catch anything and I love hugs so I usually reach out for a hug.
I am 11 years old now, I am the sixth child in my family and I am everybodies favorite! My mom is going to tell you all about me but this will take sometime so be patient, Thanks Sabrina
This is a photo of Sabrina at Jackson Lake Lodge in May 2009. This was taken when we dropped her big sister off to work there. She misses her big sister alot. But her brothers spend a lot of time with her so that helps alot!
More to come so check back oftem