I've been mad lately. Not at anyone person or specialist but at Trisomy in general. There is so little known about Trisomy and it's so frustrating. Every new diagnosis that my son gets I wonder if it has to do with Trisomy or something seperate that if he was born without Trisomy he would still have. This has been a very rough past couple of months.
I just want answers. If there is something wrong with my son, I want to know so it can be fixed or treated or whatever needs to be done. I feel like there is something really going on that is causing the anemia, his bone marrow to not work properly, and the soft tissue inflammation...I feel they are all linked and no one has a clue. What if it's getting worse or doing more harm than we know and it isn't being treated? Ugh.
Sorry for my soap box...I just needed to write and get some things off of my mind.
Wow...I just "googled" Trisomy 9 to find a page I had been looking for and my blog came up on the first search page. Wow. Hopefully my blog can help educate pregnant moms or new moms in the future about Trisomy 9. When I was pregnant there was not much information on the internet and finding someone's personal blog would have been amazing.