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Wednesday, October 21, 2009

God Is Good!

I know it’s been a while since my last post. I would like to update everyone on little O Santi. Well let me start by saying a family got in contact with me who also has a little boy with Trisomy 13 ring chromosome ( amazing) their little boy’s name is Steal, a sweet strong boy like Santi baby. Steal is 16mo’s old and is doing well. I must add he’s a cute little one. His Mommy and Daddy are such loving and caring parents. I am very happy they found me; I was feeling all alone for a second. Well with all that said my Santi baby is doing okay. He just got over a little cold witch of course turned into about five other problems. At this point all he is dealing with is his breathing. He is still working pretty hard and pulling under his ribs. After talking with one of his doctors yesterday (Beth) she thinks this just might be him and that just may be the way it is going to be with his breathing. Beth is trying to set up testing for him though to make sure we are working in all the right areas. So I know one of the tests will be having a brain scan to make sure everything is A-Okay in that little head of his. We are working on physical and developmental therapies’. Witch I was a little scared about at first but have now come to realize this is a great step in moving forward. I always knew this time would come but when it came it was a reality check and I was really upset for a while. Thanks to my second mom (Brooke) I know everything going on is a step in the right direction and will better my angle. So thank you Brooke for everything. So I will update very soon on his testing and his therapies’. Thank you to everyone for the love and support... It really does mean a lot to our family!! Santiago will look back at all this one day and see what a great life he had and what loving people stayed behind him thru it all!! <3>

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