Damn You Trisomy

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.

Kaleb has been diagnosed with moderate hearing loss, some type of blood disorder, is very delayed, his stomach is not working properly, his feet are a whole 'nother issue, anemia, soft tissue inflammation, fluid behind his ears, and I'm sure I'm leaving some things out...all in the past month or so.
My frustration has been growing day by day with news that there are still no answers. The specialists are completely stumped. How am I supposed to help my baby if we are all just guessing?

I am normally very happy and don't let these things bother me. I haven't really cried or stressed over health and developmental issues that Kaleb has but as he gets older it's hard for me not to. I know there are parents out there are are dealing with even more than we are and I feel for them. I am so lucky to have Kaleb in my life...I am truly blessed. But dammit....I hate you Trisomy. There are mother's out there that don't know what NILMDTS is (Now I Lay Me Down to Sleep), or what congenital heart defects are, or stenosis (I swear all Trisomy parents know about stenosis...stenosis of everything!)...I'm not one of those mother's. Unfortunately I know about all of those things and a billion medical terms and medications and therapies. However, those same mother's also do not know about the special fingers and toes our Trisomy babies have (and oooo do I love those special piggies!), or know about that special one crease in our babie's hands, and they also don't get to same excitement over a child doing something that seems to be small...like opening their hands, putting pressure on a leg...and lets not even talk about the bigger milestones like walking and crawling. I bet I'll fall out of my chair when those happen. I guess it's a love-hate relationship that I have with Trisomy.

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.

1 thoughts:


Thank you for your blog our 11 day old just got diagnosed with T9 27% of his cells so we see the geneticist today, the worst part is we already have a 22 month old with down syndrome lighting struck twice and my heart is hurting

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