Tuesday, May 26, 2009
Zachary is doing good right now. We are have fought the Regional Center to keep Zachary there so I can continue to work. Their Psychiatrist has found Zachary Provisional Mental Retardation which means Zachary qualifies to stay there under the Lanterman Act. With him staying here at the Regional Center they will provide me with someone to come to my home and take care of Zachary. If Zachary wouldn't have qualified to stay there then I would have had to quit my job. I had spoken to Regional Centers advocates which weren't able to help me. They had never seen this situation where a child had an immune deficiency and couldn't be around other children. Since I don't have a grandparent or family member who can watch him then I would be forced to quit my job of 7 years and go on welfare. I'm not a welfare mom. Sorry I can support myself just would need a little help since he can't go to daycare. They stated sorry we can't help you. Advocates are there to help you... Not in LA County..... They state I've never seen this situation before sorry I can't help you. You would think the correct response would have been, I have never seen this situation before let me see what I can do for you and I will get back to. Nope they just stated they couldn't help me. The only reason now I will get help is because the Psychiatrist put him as provisional mental retardation. If Zachary was not labeled that I would have had to quit my job. It is very sad that since you have a disabled child and if he isn't labeled what they (the state) think isn't disabled enough you will be punished and not get the help you need. The state is not informed about my son's syndrome Digeorge Syndrome /Velocardiofacial Syndrom /Chromosone 22 Deletion Syndrome, so they don't look at this syndrome like they look at Trisomy 22 or 13, Cerebral Palsy, Autistic, Mental Retardation etc... If your child can't go to head start or be around other kids what does someone do.. How sad it is you hope the Psychiatrist comes back with one of those labels so you can continue to provide for your child.
It isn't like I went out and got pregnant and am a young kid. I got married and planned a pregnancy and had 2 incomes. Our child was born and we didn't know that he would have anything wrong. We were expecting a healthy baby. Then my husband thought it would be a great idea to go get a girl friend with no consideration for his daughter that lived with us or his disabled son. So now there is me and Zach. One income only part time due to I only get so many hours for the respite care worker to come. We have managed and we are both happy. Zachary is a dancing machine.
We have appointment in June for the Pomona School District, ENT and Nutritionist.
Zachary is doing good and has just got over a cold a week or so ago. Will update with more info later.
It isn't like I went out and got pregnant and am a young kid. I got married and planned a pregnancy and had 2 incomes. Our child was born and we didn't know that he would have anything wrong. We were expecting a healthy baby. Then my husband thought it would be a great idea to go get a girl friend with no consideration for his daughter that lived with us or his disabled son. So now there is me and Zach. One income only part time due to I only get so many hours for the respite care worker to come. We have managed and we are both happy. Zachary is a dancing machine.
We have appointment in June for the Pomona School District, ENT and Nutritionist.
Zachary is doing good and has just got over a cold a week or so ago. Will update with more info later.
Thursday, May 21, 2009
Zachary's 3rd Annual Bowl-a-thon
Every year since Zachary was born, I started doing a bowl-a-thon in Zachary's honor. This year will be Zachary's 3rd Annual Bowl-a-thon... The proceeds go to The American Heart Association.
A very good friend of mine every year would do the walk for The American Heart Association and choose a person to name the team after. Of course every year was a different person. In 2007, Kathy, chose her team to sponsor Zachary and there is where TEAM ZACH began.
I continued on with the name under my own team for the next year and will do so again this year. Every year our TEAM ZACH grows with more members. I would not have known about this or how to do this without her help. So every year I have a bowl-a-thon at Oak Tree Lanes in Diamond Bar and the proceeds I donate to the walk.
This year we are having Zachary's 3rd Annual Bowl-a-thon on July 26, 2009 5pm to 7pm.
Oak Tree Lanes
990 N. Diamond Bar Blvd.
Diamond Bar, CA 91765
$20.00 per person and you receive 2 hours of bowling and shoes. 5 people per lane
EACH LANE receives 1 large - 1 topping pizza and pitcher of soda.
Lanes are Limited so please RSVP by July 12, 2000 to reserve your spot.
Tricia Cannon 909-868-8076
Please come join us! It is for a good cause!
A very good friend of mine every year would do the walk for The American Heart Association and choose a person to name the team after. Of course every year was a different person. In 2007, Kathy, chose her team to sponsor Zachary and there is where TEAM ZACH began.
I continued on with the name under my own team for the next year and will do so again this year. Every year our TEAM ZACH grows with more members. I would not have known about this or how to do this without her help. So every year I have a bowl-a-thon at Oak Tree Lanes in Diamond Bar and the proceeds I donate to the walk.
This year we are having Zachary's 3rd Annual Bowl-a-thon on July 26, 2009 5pm to 7pm.
Oak Tree Lanes
990 N. Diamond Bar Blvd.
Diamond Bar, CA 91765
$20.00 per person and you receive 2 hours of bowling and shoes. 5 people per lane
EACH LANE receives 1 large - 1 topping pizza and pitcher of soda.
Lanes are Limited so please RSVP by July 12, 2000 to reserve your spot.
Tricia Cannon 909-868-8076
Please come join us! It is for a good cause!
Zachary's Journey
On June 12, 2006, a beautiful baby was born named Zachary Michael Vega, 8 lbs and 13 ounces and 19 1/2 inches long. There was no sound coming from his mouth but he was crying. It is kinda foggy so my times may be off. I was sedated right after they pulled him from my stomach. Zachary's dad had come and told me there was something with him. He was feeding Zachary and he was turning blue. He called the nurse and they took him to make sure his throat was clear. They noticed a submucosal cleft. Anytime with a cleft they go to the heart. So they did. They requested what I believe was a CT Scan if not it was an MRI. But any how.... They found a problem with his heart. They seen what they believed to be a Vascular Ring. Zachary's dad told me there was something wrong with him, but I replied, he will be fine... I was in denial. Not realizing this. I truly believed he was okay.
Until there was a Cardiologist in my room talking to me. I swear all I could see was his lips moving and nothing coming out. It was really weird. I guess my mind was going 90 MPH. Because when he walked out, it hit me..... THERE IS SOMETHING WRONG WITH MY BABY! and I broke....... Crying uncontrollably.. It was horrible.. The realization that there is something wrong with your baby.
Vascular Ring =Anomalous arteries congenitally encircling the trachea and the esophagus that may produce pressure symptoms
Basically the arteries that came off the heart were wrapped around his trachea and esophagus and causing him to suffercate. This could only fixed by heart surgery and couldn't wait.
So with all his problems, Acid Reflux, laryngomalacia, hypocalcemia, congenital heart disease (his heart was also slightly rotated and the arch goes the opposite way than it normally goes, hole in his heart, retracted chin, bifid uvula, soft pallet didn't work which caused nasal regurgitation, hypotonia, Immune Deficiency Disorder and many more issues.
At 7 days old on June 19, 2006, Zachary was transferred from St. Jude Hospital in Fullerton to Childrens Hospital in Orange. On June 21, 2009, Zachary was 9 days old and they did heart surgery to remove the vascular ring and repair the heart.
Zachary came through the surgery GREAT! He was a trooper and recovered wonderfully! On June 27, 2009, Zachary was released from the hospital. Scared out of my mind how I was going to take care of this baby I couldn't hear cry. Also would throw up out of his nose and would need to be suctioned out, so he wouldn't choke to death.
Only now he had to take 1 ml of calcium every 6 hours, calcitriol to help the calcium sink into his bones, Bactrim as a preventative maintenance due to Immune Deficiency Disorder and Zantac for his acid reflux. 4 medicines for this little guy.
I had to be very careful with Zachary as he would throw up out of his nose. He would sleep in the bassinet and I would have to sleep on the couch and listen in my sleep for the noise of him regurgitating. So I could grab him before he choked to death. My eyes had to be on him constantly as I couldn't hear him cry, so I would not know if he threw up or spit up. There have been and will be many many more issues still and ongoing..
To date Zachary has been hospitalized for 3 times for Pneumonia or viral bronchial issues. He can't be around kids due to his Immune System and can't receive live vaccinations which include Chicken pox or MMR. So if he got any of these it could kill him.
Zachary is doing really well. He no longer has a calcium issue. His last visit the Endocrynologist stated he wouldn't need to come back unless there is some symptoms or issues. His parathyroid gland which we were told he didn't have is some how working now and his body has fixed the issue.
Zachary is only one one medication now for the acid reflux.
Though Zachary still has constant issues and hurdles. Zachary is developmentally delayed. Even though he will be 3 years old next month he is really actually only 1 1/2 to 2 years old. Zachary only speaks mama.... What else does he need, that was my thought.. j/k... Zachary has alot of structural issues in his mouth. With his soft pallet not working, the submucosal cleft, bifid uvula, low muscle tone and retracted chin, this poses alot of problems now and in the future. Zachary will have surgery to correct his soft pallet and submucosal cleft. Zachary will eventually have plastic surgery to pull his chin out. When this will all happen ??? That is the question.... CHOC seems to think he doesn't need surgery but the speech therapist doesn't think he will talk normally until he has the surgery. I will be going to request a Cleft Craniofacial Team at Loma Linda to look into Zach's issues.
On December of last year Zachary seen the Cleft Craniofacial Team at CHOC and I was not to pleased with their Doctors. So I will be contacting Loma Linda to get the 2nd opinion Zachary very much needs to push forward.
For now... I know there is so much to catch up on since I just started and Zachary is almost 3 years old but I will continue at another time.... Take care
Until there was a Cardiologist in my room talking to me. I swear all I could see was his lips moving and nothing coming out. It was really weird. I guess my mind was going 90 MPH. Because when he walked out, it hit me..... THERE IS SOMETHING WRONG WITH MY BABY! and I broke....... Crying uncontrollably.. It was horrible.. The realization that there is something wrong with your baby.
Vascular Ring =Anomalous arteries congenitally encircling the trachea and the esophagus that may produce pressure symptoms
Basically the arteries that came off the heart were wrapped around his trachea and esophagus and causing him to suffercate. This could only fixed by heart surgery and couldn't wait.
So with all his problems, Acid Reflux, laryngomalacia, hypocalcemia, congenital heart disease (his heart was also slightly rotated and the arch goes the opposite way than it normally goes, hole in his heart, retracted chin, bifid uvula, soft pallet didn't work which caused nasal regurgitation, hypotonia, Immune Deficiency Disorder and many more issues.
At 7 days old on June 19, 2006, Zachary was transferred from St. Jude Hospital in Fullerton to Childrens Hospital in Orange. On June 21, 2009, Zachary was 9 days old and they did heart surgery to remove the vascular ring and repair the heart.
Zachary came through the surgery GREAT! He was a trooper and recovered wonderfully! On June 27, 2009, Zachary was released from the hospital. Scared out of my mind how I was going to take care of this baby I couldn't hear cry. Also would throw up out of his nose and would need to be suctioned out, so he wouldn't choke to death.
Only now he had to take 1 ml of calcium every 6 hours, calcitriol to help the calcium sink into his bones, Bactrim as a preventative maintenance due to Immune Deficiency Disorder and Zantac for his acid reflux. 4 medicines for this little guy.
I had to be very careful with Zachary as he would throw up out of his nose. He would sleep in the bassinet and I would have to sleep on the couch and listen in my sleep for the noise of him regurgitating. So I could grab him before he choked to death. My eyes had to be on him constantly as I couldn't hear him cry, so I would not know if he threw up or spit up. There have been and will be many many more issues still and ongoing..
To date Zachary has been hospitalized for 3 times for Pneumonia or viral bronchial issues. He can't be around kids due to his Immune System and can't receive live vaccinations which include Chicken pox or MMR. So if he got any of these it could kill him.
Zachary is doing really well. He no longer has a calcium issue. His last visit the Endocrynologist stated he wouldn't need to come back unless there is some symptoms or issues. His parathyroid gland which we were told he didn't have is some how working now and his body has fixed the issue.
Zachary is only one one medication now for the acid reflux.
Though Zachary still has constant issues and hurdles. Zachary is developmentally delayed. Even though he will be 3 years old next month he is really actually only 1 1/2 to 2 years old. Zachary only speaks mama.... What else does he need, that was my thought.. j/k... Zachary has alot of structural issues in his mouth. With his soft pallet not working, the submucosal cleft, bifid uvula, low muscle tone and retracted chin, this poses alot of problems now and in the future. Zachary will have surgery to correct his soft pallet and submucosal cleft. Zachary will eventually have plastic surgery to pull his chin out. When this will all happen ??? That is the question.... CHOC seems to think he doesn't need surgery but the speech therapist doesn't think he will talk normally until he has the surgery. I will be going to request a Cleft Craniofacial Team at Loma Linda to look into Zach's issues.
On December of last year Zachary seen the Cleft Craniofacial Team at CHOC and I was not to pleased with their Doctors. So I will be contacting Loma Linda to get the 2nd opinion Zachary very much needs to push forward.
For now... I know there is so much to catch up on since I just started and Zachary is almost 3 years old but I will continue at another time.... Take care
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