Tuesday, April 24, 2012

Trisomy 18

A week after my amnio we got the results that our little one has trisomy 18. It is a chromosome abnormality where he has three copies of his 18th chromosome instead of the regular 2. It is in relation to trisomy 21 (down syndrome) but it is much much worse. In our case it is a problem because with this condition they will not do any surgeries on our sweetheart and without surgeries he will not be able to live. I have kind of put off writing this post because I really don't know what to say. Is it the toughest thing I will ever have to deal with, Yes. Do I have any idea how I am going to do it, No. As long as I constantly focus on the eternal perspective I am ok. I know that we come to this earth for two reasons, 1. To gain a physical body, which he will receive even if it is for a short period of time, and 2. To be tested; I know that he has no need to be tested, I know that it was not necessary, I know he is as pure as they can get. I found a quote that literally gets me through every second of every day. It says-“The Lord takes many away, even in infancy, that they may escape the envy of man, and the sorrows and evils of this present world; they were too pure, too lovely, to live on earth.”- Joseph Smith. I am grateful for all of my many blessings, I am so grateful for Presley, she gets me through every day, I don't think I would get out of bed if it wasn't for her, I am so grateful for Mine and Jason's temple marriage, I could not be more thankful for the opportunity we have to be an eternal family unit, to be sealed to this little one forever. I am thankful for all the prayers and thoughts of all our friends and family, I know it seems like they may have been unheard or unanswered but that could not be more incorrect, they are the only thing that keeps me going and at this point this baby is truly a miracle, 90% of all trisomy 18 babies end in miscarriage or stillbirth and he has made it this far, so we are very grateful for that. I go back to the doctor in 2 weeks, I will go every 4 weeks and they take it 4 weeks at a time.. He seems to think that the baby will make it to actual birth but they can't guarantee anything. So my next appointment they will look at his heart to see how bad the defects are and then they will take it from there. Thank you everyone for all of your love and concern we appreciate it more than you will ever know.

San Francisco

Last weekend we had a girls trip to San Francisco, and had so much fun. My mom, Alivia, Me and Presley flew up there on Thursday and came back on Saturday. We shopped downtown, went to Fisherman's Wharf, Pier 39, Ghirardelli Square, The Golden Gate Bridge and lots of other fun stuff. I also got to see my best friend Jillian which I loved! Presley was an angel the whole trip, I was so nervous about taking her but she did so good, and I survived with all the help from Alivia and my Mom.

Friday, April 13, 2012

easter+ fair

My camera broke so I haven't posted pictures in forever! well it's back now and I have lots to catch up on. We had such a fun easter, we went to my Mom's on Saturday and did all the fun things- easter egg hunt, dying eggs. Presley had so much fun, she loved dying eggs aka throwing the eggs in the dye, cracking them, and getting the dye everywhere.. holidays are getting so much fun as she gets older and can have fun, I love it...

My mom took her to sit the jacuzzi with the other kids cause I was too lazy, she was in heaven and I know we have a long summer in the pool ahead of us.

Dying eggs

We stayed out in Logandale on Easter and spent time with family out here.

She loved the fair, she was able to ride a couple rides with Jett and River. It ended when she decided to stand up in the middle of a ride, whoops!

And this picture is to keep on record that Presley is constantly walking on her tip toes!! I've tried to get a picture of it forever and here is it! She is sooo funny!