Alivia's body was about ready to give up so the doctors decided that it was time for her to get a device called a Berlin heart witch is not yet approved by the FDA. Alivia had has been on the Berlin for over a month now and she continues to better and better shes now awake with no support with her breathing but she had a lot of ups and downs to get here today she was supposed to go in a wagon ride but she only ended up sitting in the wagon in her room hopfuly when she wakes up from her nap she will be able to go for her wagon ride. Although Alivia is getting better there are also a lot of things that arent going to well, the last few days she has been vomiting a lot and just not acting herself tired a lot more and a lot for fussier they decided to go up on one of her meds and we are hoping that with the next 2 days she starts to act some what back to her normal self. Her dad and I are hoping that the doctors will find her a heart soon so we can take her home and let her live as much as a normal life as possible but it seems like she will never find one its been 3 months since she has been on the transplant list shes even on the highest one but it takes time we are trying to take advantage of this time and try to prepare everything for when we go home since we can't really have her around smokers animals sick people or people around sick people we really have to find our own place and car but that also doesn't seem like that is ever going to happen niter one of us can find a job and we applied for ssi but they have been giving us the run around for a year we are hoping we can give Alivia the best when she goes home but we are putting trust in God and dealing with one thing at a time.princess and her daddy
mommy and Alivia
sisterly love
starting to feel better
Sitting up in her chair eating mommys phone
were her berlin goes inside her
it took 3 weeks but we got her to smile again
big sister n livia we finally got her siting up n eating
Angel (angelica) happy to go see her baby sister
she loves her big sister
laying down
siting in her favorite rocking chair with her big sister
waiting in her wagon
playing with sister
Hi! I hope your family is ok especially your little girl. I landed on this page when I tried to google for my name. I am Angelica Alivia, names of your two girls. I also have a son who undergo an open heart surgery when he was 3months old due to atrioventricular septal defect (diagnosed with Down syndrome). He's now 1 year and 2mos old. I hope your baby girl is also doing fine. Prayers for your family. :)
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