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>
Glad to hear your little guy is doing better. Hope all the tests come out well. Also glad you found someone, or someone found you that can relate, it makes a difference to have somebody to share your journey with. Take Care ~ Michelle
ReplyDeleteThanks for sharing your story. I'm sorry your little guy had a such a difficult beginning. I'm glad he is doing better now (although I know you are still dealing with various issues with his health and therapy). I pray that God will continue to strengthen and encourage you as you care for your son.
ReplyDeleteI am also a mom to a little girl with Trisomy 13. She has always had a different pattern of breathing, her docs now says thats just normal for her. I t always seems to take a huge toll on these kiddos when they get even the smallest of colds. I am glad he is doing better. Your warrior is very strong!
ReplyDeleteJulianna
mom to
Kenna, 6 and Arianna, 3 1/2 Full Trisomy 13