What a day!!!
Aralyn is not feeling so good. She has been throwing up a lot and having a hard time breathing. I just hold her and beg her to breathe. I hate that. Its hard. She can't seem to control it and nothing I do helps. I ordered her a new monitor today that hooks to her diaper and vibrates is she doesn't breathe for 15 seconds and if that doesn't startle her it will sound an alarm. I can't wait till it gets here. I think I will sleep better at night. I know her nurse knows what she's doing but there is a sick feeling that comes over you knowing that your baby stops breathing. I just pray tomorrow is a better day. She will finally get her 6 month shots. Every time she is scheduled to get them, she is running a fever. Now doctors have determined that her fever is caused by neurological problems. I realized today that she will be 8 months old in 2 days. God is so GREAT!
I found out today that March is TRISOMY AWARENESS MONTH!!! I researched and came up with a lot of information for Downs, Trisomy 18, and Trisomy 13 but no Trisomy 8. One day you will Google Trisomy 8 and an overwhelming amount of information will pull up. That is my goal!
I try to blog and keep everyone updated but if I sit down for a single moment, its to go to sleep. I will try my hardest to post more updates.
Blessings!!!
Have you heard of the website called Unique? rarechromo.org I think it would really help you. There are Trisomy 8 adults, one is a professor at a college. There is no indication that T8 babies have a shortened life expectancy. Full trisomy 8 babies die before birth so the ones that make it have mosiac partial. We have also recently found out through a t8 mom of an 8yr old that the kids with t8 often test with an above average iq. It takes the kids a bit longer to get things but when they get it they really get it. A lot of the kids have a missing part of the brain or a small part. I forget what it is called but you mentioned it. It is the part that connects the right and the left. Begins with a c, sorry its late n my brain stopped hours ago, lol. That does cause seizures which you said she has. That website has a lot of info but I found most of my info from other moms. A doctor came in and told me that my son was gonna die because of T8 and that simply isnt true. They dont know. One geneticist said he was going to be severe soon. Yeah! Ok! He actually is getting better. Oh heres what I read too, studies show that t8 kids eat like typical kids by age 2 and by school age they have little problems. Now that isnt every child and each t8 baby is different but it gives us hope.
ReplyDeleteCheck out the site. Be blessed
Ashlee