change we are going through. I mean who else would have ever thought that they would live to see the day an african american man would be president of the United States. We tried to have Javi watch it but he was having none of it, he'd rather watch his Diego. While I was sitting there I kept thinking, what a change this will be not only for our country but even the other countries were watching. I think that this is a good change, God only knows that I need some good change in my life right now. Well its off to the hospital I go.
Thursday, January 22, 2009
Trac Business
So we've entered and have left the 5wk of Senia's hospital stay, and she's doing really good. Eddie and I have changed out the trac at least once each so we still have 1 more to go and then we'll have to do an 8 hour session where we take care of her on our own w/o assistance from any of the nurses, its to make sure that we'll be able to do everything on our own once we're home, and then she'll be able to come home. YEAH!!!! I'm so ready. Since I was last on our new President was inagurated into the white house, while me and eddie were sitting home and watching it we were in such amazment that we were able to be here experiencing what a 
change we are going through. I mean who else would have ever thought that they would live to see the day an african american man would be president of the United States. We tried to have Javi watch it but he was having none of it, he'd rather watch his Diego. While I was sitting there I kept thinking, what a change this will be not only for our country but even the other countries were watching. I think that this is a good change, God only knows that I need some good change in my life right now. Well its off to the hospital I go.
change we are going through. I mean who else would have ever thought that they would live to see the day an african american man would be president of the United States. We tried to have Javi watch it but he was having none of it, he'd rather watch his Diego. While I was sitting there I kept thinking, what a change this will be not only for our country but even the other countries were watching. I think that this is a good change, God only knows that I need some good change in my life right now. Well its off to the hospital I go.
Thursday, January 15, 2009
Here's to new beginnings
So I've decided to blog about what is going on in the life of my family and I. Let me start out by saying thanks for taking the time to come by and read my blog, I hope that whatever you get out of what I'm writing it may bring you comfort. Well I'm 28 yrs old, I've been married for 3yrs now, but we've been together going on 6yrs. My husband is in the U.S Navy currently stationed at Point Loma, he has served over 12yrs now and I'm hoping that he will retire at his 20yr mark. He works hard and is more than what I could have asked for in a husband, he provides for me and my kids, and he tries to give us whatever we need. I thank God for bringing him into my life and allowing us to grow together, he is my ROCK. We have to beautiful kids our 1st was Javier Eduardo he goes by Javi he's 2yrs old he was born premature but you would never know it 
looking at him now. He's very energetic, loves to be outside, and loves his cartoons, he's currently into Dora and Diego. He's definitely a mama's boy and doesn't really like to get dirty, which of course is my fault. But all around he's a really good kid he hardly ever acts up unless his sleepy or hungry, and his is the best big brother a sister could ask for. God truly has blessed me with a wonderful little boy, and if you have ever been around him his smile could melt your heart, and he only will welcome you if you have a open heart. He's very humble, if you take a toy away from him, he'll usually shrug it off and go and find another,. He does not tolerate bully's very, if you push him once he's very good about just walking away, so unlike his mother was along time ago. He has a big heart a beautiful smile, and loves to be around family. Our second child is Yesenia Araceli, but she goes by Lady, she's 14 mon old and she truly is a miracle from God. She was born with a head condition which she will have to undergo several operations to correct the shape of her head, but due to this condition she also has a different anatomy than ours. To date she has had 5 major surgeries and 1 minor one, she proves to me time and time again that you can overcome anything as long as you keep your faith in God, stay strong and keep a smile on your face. It is because of her I felt I needed to write this blog, for me personally its hard to put into words what I feel inside when it comes to her and all that she has going on. I know that there are several other families out there that are going through the same thing but I have yet to find anything that shows the progress of their child w/ pictures. When we first found that she had Craniosynistosis 
Cloverleaf w/ Pfeffier Syndrome, I didn't know what to think, mainly because I had never heard about it, so of course like any parent I took what the Dr's said for what it was but began to search for what it is. To give you a bit of what I now know this condition is a genetic condition, there are several types of it, it may run in your family, it may have been caused by medical things, or like my daughter it could have just been a gene that mutated while she was in the womb. Some Dr's can diagnose your baby while your pregnant w/ ultrasounds and others not until your child is a little older, again just depending on your childs case. Unfortunately the hospital I was going to at the time gave me an ultrasound very early in my pregnancy so the measurements she took didn't show any signs of problems. Now even if they would have caught it while I was still pregnant there is nothing you can do to prevent it, so the next question for me was " What's next?". I was told that she would have to undergo Cranial surgery, possibly eye surgery, and in the event that she begins to have problems she may have to have a tracestomy. Fortunately I was referred to the best Dr's I could have asked for, and the hospital that she receives all of her care is the best hospital I could have dreamed of. Since the very first Dr's appointment til now not only has my daughter received the best care, but they have treated us very well also. Now I know most of you would stay at the hospital 24/7 and I did at first, but I realized that by doing that I was not only wearing myself out, I was neglecting my son and my husband at home. Her first surgery was in March and after just 2wks I had to take her back in due to an infection near her incision sight, we ended up having to stay there for 8wks. The infection was so bad underneath her skin that it had gone down into the bone of her skull, but on the outside it only looked like she had a small scrap that had scabbed up. They had to go back in and clean out the infection and from there it felt like it was never going to get better. After this procedure she started to retain spinal fluid in her head which caused it to swell up, so she had to have a VP Schunt placed, this is a small tube that connects from her head down into her stomach so that she can dispose of it that way, then she decided she no longer wanted to take the bottle to eat like she used to, which caused her to start losing weight. They then diagnosed her as failure to thrive, which prompted the next surgery, she then had a G-Tube placement and a Fundoplication, so now her meals will be feed to her through this tube. Now if you have any questions about any of this so far please feel free to post it, I will be more than happy to explain anything I can. 
So she was discharged in May then in July she had a small procedure by her opthomalagist, because her eyes protruded more than ours I began to worry when she began rolling over, I was afraid she would rub her eye against the carpet and cause damage so the Dr. agreed and decided to do a Bi-Lateral Eyelid surgery, which went very well, it was in and out procedure and she of course came out like a champ. Then in Aug I began to notice that she was starting to take pauses when she slept, needless to say from Aug until just recently I had to take her into the ER because she would start changing colors on me. Every visit all tests labs came back showing that she had no viruses or illnesses, and even though I kept expressing my concern of her breathing all they could tell me was that she needed to see a Pulmonary Dr to have a sleep study done. We saw this Dr on Dec 16 he felt that she needed oxygen and monitors at home, but due to the holidays all orders were backed up, then on Dec 19 while we were home she took a nap and stopped breathing! Now I've taken CPR classes, it was a requirement when Javi was born, but I was in such a panic it didn't click. I remember grabbing her, grabbing my phone and running outside of my condo screaming for someone to please help her while also dialing 911. Thank GOD my neighbor from upstairs was home, his a firefighter and jumped right into action, and it so happened that Mindy,a girl that lives in our complex,was walking her dog she immediately grabbed my phone and made the call for my, she was a 911 dispatcher, I gave Tom (the firefighter) all the information he was asking about her while be gave her mouth to mouth and got her to start breathing again. I owe these 2 people everything for helping save my daughter. We got her to the ER where they got her stabilized and she was then transferred to her regular hospital. Now I know that I've done things in my past that I'm not proud of but we attend a church now that firmly believes in GOD putting people in our paths for a reason, needless to say my faith is stronger because of this incident. 
Well after she was transferred and I spoke to the dr's and explained to them that I would not let her leave the hosp without some sort of equipment to take home, they agreed to monitor her for a few days after she was exstubated to see how her stats while she slept. Let's just say they finally understood that I was not exaggerating when I said I didn't sleep anymore at night because I didn't now if her pauses were gonna last longer than usual. So on Jan 7 she had her 6th surgery, she got a tracestomy. Everything went well as I know God would allow it to be and we are now in day 8 and she's already sitting down moving around in her bed and has the biggest smile on her face, which only makes me stronger for her because she brightens up my day. Truly I believe in God's divine nature and truly believe that he loves his children unconditionally, for this I thank my God everyday for bringing me into his truth and allowing me to have the understanding I need to know that whatever plan they have in store for us it will only lead us to them more and more. So this is my first blog I know its long but I had to let you know what was going on before I could continue from here on.
looking at him now. He's very energetic, loves to be outside, and loves his cartoons, he's currently into Dora and Diego. He's definitely a mama's boy and doesn't really like to get dirty, which of course is my fault. But all around he's a really good kid he hardly ever acts up unless his sleepy or hungry, and his is the best big brother a sister could ask for. God truly has blessed me with a wonderful little boy, and if you have ever been around him his smile could melt your heart, and he only will welcome you if you have a open heart. He's very humble, if you take a toy away from him, he'll usually shrug it off and go and find another,. He does not tolerate bully's very, if you push him once he's very good about just walking away, so unlike his mother was along time ago. He has a big heart a beautiful smile, and loves to be around family. Our second child is Yesenia Araceli, but she goes by Lady, she's 14 mon old and she truly is a miracle from God. She was born with a head condition which she will have to undergo several operations to correct the shape of her head, but due to this condition she also has a different anatomy than ours. To date she has had 5 major surgeries and 1 minor one, she proves to me time and time again that you can overcome anything as long as you keep your faith in God, stay strong and keep a smile on your face. It is because of her I felt I needed to write this blog, for me personally its hard to put into words what I feel inside when it comes to her and all that she has going on. I know that there are several other families out there that are going through the same thing but I have yet to find anything that shows the progress of their child w/ pictures. When we first found that she had Craniosynistosis Cloverleaf w/ Pfeffier Syndrome, I didn't know what to think, mainly because I had never heard about it, so of course like any parent I took what the Dr's said for what it was but began to search for what it is. To give you a bit of what I now know this condition is a genetic condition, there are several types of it, it may run in your family, it may have been caused by medical things, or like my daughter it could have just been a gene that mutated while she was in the womb. Some Dr's can diagnose your baby while your pregnant w/ ultrasounds and others not until your child is a little older, again just depending on your childs case. Unfortunately the hospital I was going to at the time gave me an ultrasound very early in my pregnancy so the measurements she took didn't show any signs of problems. Now even if they would have caught it while I was still pregnant there is nothing you can do to prevent it, so the next question for me was " What's next?". I was told that she would have to undergo Cranial surgery, possibly eye surgery, and in the event that she begins to have problems she may have to have a tracestomy. Fortunately I was referred to the best Dr's I could have asked for, and the hospital that she receives all of her care is the best hospital I could have dreamed of. Since the very first Dr's appointment til now not only has my daughter received the best care, but they have treated us very well also. Now I know most of you would stay at the hospital 24/7 and I did at first, but I realized that by doing that I was not only wearing myself out, I was neglecting my son and my husband at home. Her first surgery was in March and after just 2wks I had to take her back in due to an infection near her incision sight, we ended up having to stay there for 8wks. The infection was so bad underneath her skin that it had gone down into the bone of her skull, but on the outside it only looked like she had a small scrap that had scabbed up. They had to go back in and clean out the infection and from there it felt like it was never going to get better. After this procedure she started to retain spinal fluid in her head which caused it to swell up, so she had to have a VP Schunt placed, this is a small tube that connects from her head down into her stomach so that she can dispose of it that way, then she decided she no longer wanted to take the bottle to eat like she used to, which caused her to start losing weight. They then diagnosed her as failure to thrive, which prompted the next surgery, she then had a G-Tube placement and a Fundoplication, so now her meals will be feed to her through this tube. Now if you have any questions about any of this so far please feel free to post it, I will be more than happy to explain anything I can. 
So she was discharged in May then in July she had a small procedure by her opthomalagist, because her eyes protruded more than ours I began to worry when she began rolling over, I was afraid she would rub her eye against the carpet and cause damage so the Dr. agreed and decided to do a Bi-Lateral Eyelid surgery, which went very well, it was in and out procedure and she of course came out like a champ. Then in Aug I began to notice that she was starting to take pauses when she slept, needless to say from Aug until just recently I had to take her into the ER because she would start changing colors on me. Every visit all tests labs came back showing that she had no viruses or illnesses, and even though I kept expressing my concern of her breathing all they could tell me was that she needed to see a Pulmonary Dr to have a sleep study done. We saw this Dr on Dec 16 he felt that she needed oxygen and monitors at home, but due to the holidays all orders were backed up, then on Dec 19 while we were home she took a nap and stopped breathing! Now I've taken CPR classes, it was a requirement when Javi was born, but I was in such a panic it didn't click. I remember grabbing her, grabbing my phone and running outside of my condo screaming for someone to please help her while also dialing 911. Thank GOD my neighbor from upstairs was home, his a firefighter and jumped right into action, and it so happened that Mindy,a girl that lives in our complex,was walking her dog she immediately grabbed my phone and made the call for my, she was a 911 dispatcher, I gave Tom (the firefighter) all the information he was asking about her while be gave her mouth to mouth and got her to start breathing again. I owe these 2 people everything for helping save my daughter. We got her to the ER where they got her stabilized and she was then transferred to her regular hospital. Now I know that I've done things in my past that I'm not proud of but we attend a church now that firmly believes in GOD putting people in our paths for a reason, needless to say my faith is stronger because of this incident. 
Well after she was transferred and I spoke to the dr's and explained to them that I would not let her leave the hosp without some sort of equipment to take home, they agreed to monitor her for a few days after she was exstubated to see how her stats while she slept. Let's just say they finally understood that I was not exaggerating when I said I didn't sleep anymore at night because I didn't now if her pauses were gonna last longer than usual. So on Jan 7 she had her 6th surgery, she got a tracestomy. Everything went well as I know God would allow it to be and we are now in day 8 and she's already sitting down moving around in her bed and has the biggest smile on her face, which only makes me stronger for her because she brightens up my day. Truly I believe in God's divine nature and truly believe that he loves his children unconditionally, for this I thank my God everyday for bringing me into his truth and allowing me to have the understanding I need to know that whatever plan they have in store for us it will only lead us to them more and more. So this is my first blog I know its long but I had to let you know what was going on before I could continue from here on.
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