Keeping her healthy

I have always done compressions, (at least thats what my doctor called them) on Sabrina to keep her lungs clean and healthy, I think every parent should learn to do this with any young child. Especially with trisomy 18 infants, by doing compressions on a regular basis her lungs have not had any fluid build up. I don't do as regularly now as I used to but I still do them a couple of times a week. I will right up an article on this and post in a few days.    

birthday

Sabrina is now 13, a milestone for someone with trisomy 18! She is such a little wonder, she just makes us happy everyday!
She still eats pureed food and has fun with her family, she has a walk about she gets in everyday. She does her leg exercises everyday. I spend a lot of time playing with her and singing to her, she tries to mimic things I say but her vocabulary is very very limited to moma, dada, and just a few others. She used to call her sister hava, but she hasn't seen her for so long she doesn't say that much.

Sabrina has a very hard time gaining weight, so she is on a high calorie diet, however for christmas this year I got a magic bullet. This has made pureeing her food so much easier, she gets salads and more fun food that was a lot harder to do in my blender. Today was a hard day for her, she didn't sleep well last night and had to have medicine for pain.  She has reflux so even with her medicine she has a hard time with the first few bites and then she does good.

Her Back

Sabrina's curve on her back has gotten worse and I am more aware of her paines and itches, she is home with me all the time. We do therapy and play and rest. She is such a little sweetheart. She always used to wake up with a smile, now sometimes she wakes up sad! This is so very hard, sometimes I just hold her and sing to her or talk to her. She still like to play at my table in the bedroom. Well more later!

Blue Angels

Sabrina' activities

Sabrina like to be in her walk about and watch TV! She likes to walk around the house on her own and explore her world. She has videos she like to watch too! She had her 12th birthday this year! This is an amazing thing for a trisomy 18 child, she is just so awesome and we love her so much!

\Sabrina watching her videos

Eating out with the family

We attended the make a wish Blue Angels air show on friday the 23rd of July in Idaho Falls ID. I really enjoyed the show, Sabrina, enjoyed all the people and some of the air show. She just likes to be around people so much and she is always glad when her brothers are their too

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:

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.