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Monday, August 23, 2010

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.


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.




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!



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 4th one due to the fact it had only come one week after the 3rd 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.




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 13th 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 13th – 15th no problems. Then on the 16th he started gagging we didn't think much of it. So the morning of the 17th 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 19th and came home on the 22nd. 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!!




Saturday, February 27, 2010


<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.

Monday, February 22, 2010

<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



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

Saturday, January 2, 2010

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