A NOT so happy New Year

Our new year has not started out so good, we will be cutting our vacation short because we need to get back home to a flooded house. It turns out that a pipe froze and it burst, once the ice defrosted all the water came out. From what the housing guy told me every room except the kitchen has damage of some sort, the damage was worse in Jesus's room, the hall way, and a bathroom in those 3 room the ceiling caved in. I thought that this new year was already going to be busy and full of new things to come like Jesus was going to have his surgery, his week study, some money problems but now on top of that we will be having to stay in a hotel for 2-4weeks, we will probably have to pay for damages and fixtures of the house, we will have to pay for our personal loss like furniture, electronics, toys, etc.
I keep reminding myself that things happen for a reason that maybe GOD has a bigger plan at the end of all this that i just don't see. That maybe this will be the hardest thing we will have to deal with this year. I just have to keep my faith strong. I was told that GOD doesn't send you anything that he doesn't know you can handle well I'm not sure that he knows me or that he is seeing that I'm not handling it very well that this has made everything seem harder to handle.
I was thinking of fundraising for the Conference this year for July and that if we saved and limited ourselves in somethings we would be able to go but it seems like maybe that wont happen.
This new year has turned out to start off not so good for us!
but i have to stay strong because i have two wonderful kids who need me and i still have Jesus's surgery to worry about and i just need to hopefully see the bigger picture and as long as we are all alive we will keep going!

i just need to win the lottery!
=(

Christmas2009

HAPPY

Jesus can officially flip from his tummy to his back and back again we have been waiting for him to be able to do this. there were times when we thought he would never do it because his arms were just way to stiff to let him do anything but he has proven us wrong and I'm so happy that he has! i wish i would have had my camera with me when he did it to capture the moment. Such a great gift he gave us!

Wordless Wednesday

Panting

The fun part was making the mess not cleaning it!:)

Jesus Medical LIfe

So today we went to the Neurologist and it turns out that his most recent EEG came back with one abnormality it only lasted 30sec. and it was only one spike but this is enough for him to be diagnosed with having seizures. I'm not sure how i feel about this it makes me feel like a good mom because i was able to recognize a seizure when i saw one but it makes me feel sad that i was right. i was hoping that my eyes were playing tricks on me but they are not.
This got me to thinking of all the unknown things he will be diagnosed with in the future. He sees A Developmental peds, a Geneticist, an Immunologist, Opthomologist, ENT, Cardiologist, Pulmonologist, GI, Urologist, Orthopedic. What else will they find. I'm glad that they find this things but why does he have to have so many things going on.
Then his cough is back, It seems to go away for a while to make me think that what we are doing is right but it just comes right back like it was never gone. It is so frustrating to see him get better with a new thing then go right back after a couple of weeks of taking it. its as if his body got used to it. I guess i just need answers even if they are hard to hear (like today with the seizures) i need to know whats going on, i need someone who will find what is wrong with him.

Send your own ElfYourself eCards

Sleep study

Jesus is normally a good sleeper once he is out for the night he will not cry until morning he will wake up at night to gasp for air but then puts himself to sleep.
well last night was not like that any little noise would wake him up, he did not put himself to sleep because he normally rubs his hair and he couldn't do that so there i had to keep picking him up. The second half of the night went better because i gave him a bottle. poor little guy was not comfortable with everything hooked up to him but i don't blame him.



In the morning once they took off everything he went back to his happy self! except he will not let me touch his head or face I'm hoping that stops soon! His hair was all wild and crazy!

YAY

A little bit of something

Ok so i have several things in mind. One is that i have been told by some of you that you are not able to post a comment on my blog and i am not sure why or how to fix the problem so if anyone has any tips, advice, or a fix i would love to hear it please help with this. you can email me to ajmedrano187@yahoo.com



Jesus has his sleep study tomorrow night! we are excited, and anxious about this because well we want to know the results and because we are so happy it was able to get done before the Christmas and before his surgery. It is snowing a lot so i hope the the snow does not stop me from driving the one hour it takes to get there! I'm thinking if i leave 3 hours early i can sure drive slowly and make it on time.




Esmeralda told me today she wanted a toy and when i told her she had to tell Santa Claus she told me we had to go and buy a costume of Santa so that me or her dad could wear it and bring her toys. we have not once done this so i have no idea were she came up with this. maybe I'm not making it believable enough! I'm not sure what else i can do to help her believe!

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.