What will 2010 bring?

Well…… a lot has been going on...
Santi now has PT, Developmental, and feeding therapy. He is doing great in them, very proud of my lil man. So we have had a couple tests done since my last post... Santiago was having seizure like activity so he had an EEG and MRI... Santi's EEG came back with no seizure activity (GREAT) but still ABNORMAL... so we just had his MRI done and will sit down with the neurologist on the 5th to hear about everything... We are super stressed for this one... But my lil man has been such a blessing to us. I would do this all over again if asked to. I have learned a great deal from him and I have become such a strong person.
Santi is a true miracle and he tells me that every day thru his daily activity. 2009 is the year I meet my Strong man and I found my true inner strength. Now I am looking forward to what 2010 brings us. I think GOD everyday for allowing us to still have Santi. We know that his father could call him home at anytime, but as long as I have him we spend each day to the fullest!
I will update soon after our neurologist apt!!
Thank you all for your continuing support and prayers.
Lots of <3 from the
Bernal Family

SANTI to STRONG man!!

Santi is doing soo well... We have him in Developmental theripy and PT both are giveing him high hopes.. and he is now in his first video.. I will up date later with more details but we are off to a OT apt..

http://www.onetruemedia.com/shared?p=95f004d5e222bff180ae09&skin_id=801

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>

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

<3 He Did It Like A Pro <3

So we put Santi on his tummy for the first time after surgery.. well really it was for the first time ever.. and my son did it like a pro!! He didn't look like the fish out of water that I thought he would look like =) He tried to crawl and then before I knew it he was going from his tummy to his back and from his back to him tummy again!! My gosh I was in tears this is such a big step for him!! We were not to sure when he would be able to do all this. So now I have a little peace of mind about his motor skills!!! LOOKING GOOD SON!!! I am so proud of you my Santi baby!!

**Tummy Time**

Still going strong!!

It has been 8 weeks since Santiago had his open heart surgery to closed the large hole in the lower chambers of his little heart. I am so very happy to say he is doing so well. When we went for our follow just the other day, Dr. Diab said he looked really well he also said that they did find a small hole in the upper chambers now but for me not to stress... what a funny doctor not to stress.. ha ha I love Doctor Diab tho he is so good to use that whole place is so good to us! So we go back in 6mos. for a follow up and more good new(fingers crossed). I am so happy we can also start tummy time now cant wait to see what Santi thinks about that!! I will post pics very soon of his tummy time! <3