Get to know him

I didn't start this blog until recently and i realized that none of you got to see Jesus as he grew up so here are some of the older pictures.


He is finally coming home with us after 12 days in the hospital! Exactly on Easter day. :)


First time meeting his sister!


His first bath at home it might not seem like he is enjoying it but he always crys when i take him out of the water.


One of his first times opening his eyes and at first it didnt seem to happen often.


Got sick with chicken pox at 2 months this is when he is already getting better.


This one we were in a very noisy indoor swiming pool and this is when we learned that loud waterfall noises or vacume type noises make him happy!


He started eating his hands and it was a very happy day for us and now he still loves putting them in even if he is eating so it kinda makes it hard for us. but we still love it:)


I just love his wild hair! but sometimes it gets in his eyes and i feel like cuting it.


He loves swinging! he smiles everytime the wind hits his face the faster you push the more he smiles he is such a dare devil!:)


He was a ducky for Halloween!

Tired

I hate the feeling of being overweight i used to have control of my health of my appearance but now I'm just so busy with the kids with Jesus's doctor appointments with being tired i haven't figured out a way to fit exercise in and when i do something comes up like Jesus gets sick or Esmeralda wakes up at night and I just feel like I'm making up excuses for why i wont but its more like reasons. i just want to find a way to be able to do it all.
Does anyone have this problem? if yes how did you fix it? what can i do?

First Surgery

I knew it was coming, I know it has to get done. But actually setting a date, preparing for it, having the doctor tell me everything he is going to do to my little guy made me cry (once i was home not at the doctors office). I thought i was stronger, i hoped that i was ready for everything. So now I'm scared His surgery is Jan.8'2010 And i keep thinking about everything i have to make sure i write down for the Anesthesiologist trying to think if i have everything ready for his recovery, Maybe I'm missing something. His surgery will consist of fixing his undescended testicles, circumcision, and chordee repair. surgery is going to last about 1 1/2 hours, it should be in and out same day unless complications happen. Its just a little overwhelming.

She is 3 Now!

Yet Another

Today we had yet another doctor app. we had his ENT this is one of the ones we have been looking forward to going to because of all his breathing issues. He was given some reflux medicine (Lansoprazole) which was extremely hard to find i finally found a pharmacy who had it and would compound it for us. We are praying that this is the answer to his coughing. She also agreed we should get the sleep study there at the Children's hospital, so now we wait for them to call us and give us an app. She also mentioned he has fluid in his ears but that she is going to give it time before doing anything about it because she believes it to be the results of ear infections he had 2 months ago. and that when he goes under anaesthesia for a surgery she will order a hearing study. Basically that is a short summery of our long appointment.


Today i found out that Jesus's favorite TV show is Mikey Mouse Club House he will actually stop crying when he hears it, very adorable! :)

About Jesus

Jesus was born April 2' 2009. My pregnancy went great. The first thing we noticed about him was that he was not crying he was only grunting. That was a horrible thing to hear when your expecting to hear your baby cry for the first time and then to see him all purple was even worse. We didn't know that this was only the beginning of it all. With a couple more test and a good look at him they noticed that his thumbs and first toes were broad, He has 6 toes in each foot, He is completly blind in the Left eye, he has a heart defect (Bicuspid Aortic Valve), and undescended testicles, along with a chordee. After spending 12 days in the NICU he was discharged with a list of Specialist we had to see. Little did we know this list would later grow. It wasn't until we saw a Geneticist around when he was 2 months old that we heard the words Rubinstein-Taybi Syndrome.
He has been hospitalized twice, and see's over 11 specialist. But through all of this he is strong he wakes up everyday with a big smile on his face, and reminds us that life is a blessing and i would not change anything about our life!

OUR FIRST POST

Welcome to our blog! My name is Angelica i married my husband Jesus July'2004, we have two wonderful children Esmeralda who is turning 3 this Saturday, and Jesus IV who is 7 months old. Jesus was born with a rare Syndrome (Rubinstein-Taybi) I hope that with this blog we can help others understand a bit more about this syndrome as well as letting our friends and family know how we are doing.