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Saturday, October 3, 2009

Bump's in the road STINK!!

Well where do I start??? My miracle Santiago has been having a tough road here lately. He is pretty sick right now, he has a little URI going on but its taking a toll on him. I don't like it. He has been having a little trouble breathing and that always stresses me out. I took him in to see Beth yesterday and she said she def. thinks whatever is going on has nothing to do with his heart.. thank god. But that it may have more to do with his syndrome (Trisomy 13) and I don't like the sound of that.We have a lot of testing a head of us. I have been stressing a lot about him lately we are only 5 months away from his FIRST birthday and I know its supposed to be a happy time, but for me its a VERY stressful time. More then 80% of trisomy 13 babies don't make it to their first Birthday. With all this sick stuff and the trouble breathing I'm a little worried I'm not going to lie.I hate the not knowing part. I don't like playing the waiting game. I'm getting tired of everyone telling me well lets wait and see what happens. Ahhh NO I don't wanna wait and see what happens. Sorry I had to get this out I have been nothing but a mess since he started to get sick!! I LOVE my son sooo much I hate to see him going thru this. Sometimes i can't help but to ask GOD why me ? Why did he pick me to have a son with this problem? At time's I feel so lost and so help less!! Please pray for us my baby needs it hes a fighter but I just don't know how much more he has in him!! I love you my baby Santi <3 <3


  1. ello,
    I could have written your post 9 years ago. I also have a child with trisomy 13. That first year is so tough... but look how far you and your sweet child have already come :)

    I am available to offer you support if you need some and also want to invite you to the Living with Trisomy 13 commuity. We have a wonderful message board and you can share some of the symptoms your little guy is going through and others will offer their experiences and things that worked with their child. Our kids our so unique that its such a help to talk to others who know this very unique life journey.

    ThereseAnn, mom to Natalia

  2. As always, Santiago and the rest of you are in my prayers. Love you you tomorrow. Brooke