Pure Joy!

Santi is the joy of my life as well are my other two kids! I am amazed everyday to see Santi grow and learn. His newest thing is to try and hook himself up to his tube ( which he has not used for feeds in forever ) hahaha he's so smart ! Also want to tell you that Santi had a swallow study yesterday and he has improved tremendously he has gone from honey think to nectar this is so huge for us he has been on honey for 2 years now with no change until now!!!!! Amazing so proud of my lil big man!! Xoxo And here's some pics from his third birthday party also :)

The day has come!!!

Well the day has come our lil BIG man is THREE!!!! This time three years ago was the scariest time of my life!!!! Santi is here and he is WELL something I was told was unheard of!! Well as I have always said GOD is in control of this guy not doctors!!! Here to yet another amazing year full of love, joy, faith, compassion and LIFE!!! I love you Santi and together we will make a different in the trisomy community!! I love you!! Xoxoxo

TURNING THREE YEARS OLD!!!!!

THIS IS 1 OF 5 BIRTHDAY INVTES FOR SANTIS THIRD BIRTHDAY PARTY THAT WILL BE APRIL 21ST 2012


THIS IS DEC. 2010


THIS IS OCT. 2010 AT SISTERS 5TH BIRTHDAY PARTY!!! HE LOVES WATER. HE'S MY LIL FISH!


Here's sweet Santi holding his little princess who is 2 years old and has trisomy 18.

Alot has happened (as always since I'm always behind) but Santi got his make a wish and we went to Florida for a Trisomy event with some of my moms who I have talked to cried with and shared stories with for the past 2 1/2 years. It was AMAZING =) It was also talked about in the Florida paper here is the link http://www.orlandosentinel.com/multimedia/os-trisomy-family-gathering-20120326,0,100180.story.

Santi has been doing AMAZING he is running every where. he definitely keeps me busy along with his Big Sister who's 5 and big brother who's 4. We have not been in the hospital all winter and Santi for the most part has been his healthiest yet. He makes me so very proud.


I will post more pictures of his wish trip once I get all the pictures uploaded. We got to go to Disney World and we also stayed at Give Kids the World which was such an amazing place in its self.
I will also post pictures from his birthday party once its over with.

Up-Date from the Last Six Months!

Hello all!

I am so very sorry I have not kept up on Santi's blog. So much has been going on. I am truly sorry. So here is what's been happening for the last six months.

March

Santi got very sick with his second bout of pneumonia. We treated it the best we could from home and then it got to the point where he would no longer eat. We took him into the hospital where we found out he was severely dehydrated. Santi stopped eating by mouth all together. He got his g-tube during this visit.

 

April

HAPPY FIRST BIRTHDAY TO MY AMAZING BOY!!

That's right Santi had his first birthday party! A day we never thought we would see a day the doctors where for sure we would never see. Santi got out of the hospital just days before his birthday. This was by far the biggest milestone yet!

 

May-June

pneumonia 3 and 4

Santi got 2 more pneumonia's back to back it was a very scary moment for us. Santi went into the hospital with the 4^th one due to the fact it had only come one week after the 3^rd was gone. We were told at this time that he has chronic lung disease and that his lung had taken a BIG beating from all these back to back pneumonia's.

Santi was in the hospital from June28th to July19th. During this hospital stay he was put to sleep twice, 5 procedures, and 1 surgery. Santi had to have the fundo done due to bad reflux which was going in his lungs and causing the pneumonia's.

 

 

August

Santi was doing very well after surgery. He came home he was growing, learning new stuff and just thriving.

We went to GI on Aug 13^th Santi was doing so well that Dr. M upped his feeds by 10cc so we are now at 200ml's He did very well the 13^th – 15^th no problems. Then on the 16^th he started gagging we didn't think much of it. So the morning of the 17^th I gave Santi his afternoon feeding when all of a sudden he started gagging and then stopped breathing, I had to do CPR and then he was fine playing and laughing like nothing had happened. After this we went back down to his normal 190ml's he is still gagging and throwing up. We went into the hospital on the 19^th and came home on the 22^nd. He had blood work done, every Virus swab there is and a upper GI followed by a chest and a tummy x ray, Everything came back good. So I asked to be sent home. I couldn't risk him caching anything. We had one kid in our room with mersa and another with really bad RSV. I will have follow up visits this week with pediatrician and GI.

 

I will start updating Santiago's blog at the end of every month starting in September. As you can see things never really seem to slow down too much so it's really hard to update often.

We praise GOD for all the miracles he continues to do for our SANTI BABY!!

SANTI IS A MIRICAL AND WE THANK GOD EVERYDAY FOR BLESSING US WITH HIM



<3

 

MY LIFE

<3 Heart Walk 2010 <3

We went to the Heart Walk today and it was so nice to see all the people there with their pictures and posters. Our team all together raised $745.00 and our goal was set at $500.00. I thought that was so amazing! This was our first of many years doing this and we all had a blast. More pictures will be posted very soon!! This picture is Bryce on the left he is Santi's BIG brother and he had enough I think the walk was a little much for him. Santi baby is in the middle and BIG sister a BIG supporter is to the right. I would like everyone to know that Isabella walked the whole time and we were so proud of her.

<3 Happy 10 month Birthday to Our Santi Baby <3

Just a little update on Santiago:

    I am very happy to say he turned 10 months old yesterday, Feb. 21, 2010. Woo Hoo...

We have been truly blessed with your Santi baby. He has had some setbacks and that's okay. He is now on oxygen full time in hopes that he will not have to work so hard to breathe on his own. We are hoping by having him on the O2 full time he will now use the strength he was using to breath to grow and learn. Santi has therapies 3 times a week, starting with Feeding on Wend. Developmental on Thurs. and Physical on Fridays. All though this may seem like a lot it is worth every bit. There is nothing like watching your child does things that you were told would never happen. A Santi play with toys says Dada... and is learning others. He has come such a long ways and has fought very hard to get where he is today. there's a poem that I found and it is a poem I look at every time I fell like the road is getting to rough, so I thought I would share it with all of you. I hope when and if you every fell like the road is getting to rough you look back at this poem like I do and know that everything will work out at the end.

 
 

Much Love <3

Tammie Bernal

 
 

DON'T QUIT

When things go wrong, as they sometimes will,
When the road you're trudging seems all uphill,
When the funds are low, and the debts are high,
And you want to smile, but you frown a bit,
Rest if you must, but don't you quit.

Life is strange with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
When he might have won had he stuck it out;
Don't give up though the pace seems slow,
You may succeed with another blow.

Success is failure turned inside out,
The silver tint of the clouds of doubt,
And you can never tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit,
It's when things seem worst
That you must not quit.

 

Author unknown