Monday, June 1, 2009
MIA: Diberticulitis and more
So, I've been missing. I really have tried to keep up but really? Being a SAHM of 2 special needs kids is tough. LOL I really don't have anything to compare it to I must say. I never was a SAHM and never had 2 special needs children. And never had 2 little ones at home at once anyways. But anywho...I had a flar up of the diberticulitis that I didn't know I had. And wound up in the hospital on IV antibiotics for 2 days. Then I spent the next 14 days at home recovering from that mess. Then the adjustment of staying home and everything has really taken it's toll. I've got to run for the day but I just wanted to check in. I'll be back tomorrow for more info!!
Call to action!! MR Services in Pa might be cut
Some People Currently Receiving Services from the MR System Will Lose Their Services!
Make calls June 1 - 3!
From The Arc of PA
This is an urgent message for all persons and their families who are currently receiving services from the Mental Retardation System. The proposed budget passed by the Pennsylvania Senate (SB 850) not only eliminates all money for the waiting list but terminates services for up to 3,550 people currently receiving services. This includes up to 550 people in the Consolidated Waiver and 3000 people receiving family support.
Today, Tuesday and Wednesday we are asking you to focus your attention on some of the leaders that will be integral in shaping a final state budget for Pennsylvania, the Chairmen of the Senate and House Appropriations Committees and Governor Rendell. Here's what you MUST do: On Monday, June 1: Call Senator Jake Corman. He is the Majority Appropriations Committee Chairman. His number is 717-787-1377 . His email is: jcorman@pasen.gov On Tuesday, June 2: Call Representative Dwight Evans. He is the House Appropriations Committee Chair. His number is 717-783-1540 His email is: devans@pahouse.net On Wednesday, June 3: Call Governor Rendell His number is: 717-787-2500 His email is: governor@state.pa.us The message is simple:
Hello my name is __________________.
I am a person with a disability. I have a son/daughter with a disability. I work with people who are disabled. (pick one.) I support a budget that supports people with disabilities. I do NOT support SB 850.
Thursday, May 7, 2009
One More thing on my mind today.
So, I read a post on a down syndrome board I am on the other day. And as I was reading it I couldn't believe this person felt the way they felt. Total despair and shock at their news of the diagnosis of Down Syndrome of their baby yet to be born. The tragedy hit them hard, as it does all of us parents. I felt that too and felt the pain. But it seems so distant now. It has been a short 8 weeks ago that I found out. And it feels like a lifetime ago. The pain and the heartache seems not even real these days. I focus on the heart now and maybe that's the reason. Or maybe it's because it doesn't even matter to me now. I don't know. But I see it so different. I don't feel dispair or sadness when I think of Trenton. I just don't see it. And sometimes when I'm talking to someone and I mention Down Syndrome and they say "I'm sorry" I look at them weird I'm sure. and just say...Sorry? For what? really? I am perfectly happy with my son and honestly given the chance, I wouldn't change him. I would change the fact that he has to have heart surgery, of course. But him...the down syndrome...I wouldn't change it. Because he's perfect the way he is. And he's me, he's his dad, he's us. And I don't want him different. I'm very optomistic about the advantages he has being born when he was. Not like the story I posted before. 50 years ago. And really I feel so blessed by him that I am happy and thankful everyday for that. I don't think there's anything that us parents that are experienced can say to make the pain or the hurt dissapear but I hope all the new parents out there, the ones in despair, and the ones in pain over the diagnosis of down syndrome could know what I know now. That life here in Holland is really, believe it or not, pretty damn nice. :)
Lives Lived.: How far we have come with Down Syndrome in 50 years
As I share this story I feel thankful. Thankful that my son was born today and not 50 years ago. The advancements made on the medical and educational fronts are incredible. I read this story and thought about all our children today and how lucky they are. We need to continue to fight for them. This fight isn't over by far. We need to make everyone aware of how important early education and early intervention is to our children. And we need to have their voices heard. So that our children excel further then we ever thought possible!!! Here's the story:
It was in the Pittsburgh Post Gazette
Lives Lived: The lesson of Lewis Silverstein
Life is love
Tuesday, May 05, 2009
By Mike Silverstein
My brother Lewis died last week. He was 52.
There were many things in this world that made him happy. He loved to watch Studio Wrestling, and entertained the family with his impersonation of ring announcer Johnny Francona. Bruno Sammartino was his favorite wrestler. Like many of our neighbors in Morningside, he also liked to dress up in black and gold and cheer for the Steelers, the Pirates and the Penguins. He was barely 4 feet tall.
Lewis loved music, and Christmas music most of all. For him, every day was Christmas. And any day was the right day to sing "Hark! The Herald Angels Sing."
Lewis was born with Down syndrome in 1957, and a blood incompatibility at birth required two transfusions in his first 72 hours. So tenuous was his grip on life that he did not regain his birth weight of 5 pounds, 12 ounces, until just after his first birthday. During that first year, Mom stayed up nearly every night to try to force an extra half-ounce of formula into him. She simply refused to allow him to die.
Ever so slowly, he made progress. He stood up at age 3. He took his first steps at age 6. There were few resources for families with Down children back then, and no public school facilities.
Lewis attended a preschool sponsored by Rodef Shalom Temple for a year, and then St. Anthony's School for Exceptional Children in Oakmont for more than 10 years. The love, the skill and the dedication of the nuns at St. Anthony's helped him blossom. St. Anthony's is where he developed his fondness for Christmas carols.
Lewis learned the alphabet and his numbers, but he never was able to read and write. But he helped with cooking and cleaning dishes, folded up his clothes and stored them neatly. And his table manners and personal cleanliness habits often exceeded those of his brother.
In 1980, Dad died and Mom's health began to decline. She was able to place Lewis in a group home, the Royer Center, on Negley Avenue. Even though he missed Mom and Dad, Lewis thrived at Royer. He adored his counselors, participated in all the group activities, and helped with the chores. And for more than two decades, his beloved Aunt Frances would visit him every Saturday to take him to Eat'n Park.
His order never changed, and he recited it carefully each week: Cole slaw. Spaghetti with meat sauce. Garlic bread. Iced tea. And a chocolate ice cream sundae. There always seemed to be a table ready, and for him, lunch with Aunt Fan was always the best meal ever.
Aunt Fan began to slow down by age 90 and was no longer able to take Lewis to Eat'n Park. So when I would travel to Pittsburgh every few weeks, he would insist we go to Eat'n Park and get food to take to her. And so we did, until she died at age 94.
Over the past five years, Lewis began showing signs of Alzheimer's disease. This, I have learned, is not uncommon among those with Down syndrome, even in their 40s. When he could no longer remember what the fire alarm meant, he could no longer safely live at Royer Center.
For the past year, Lewis lived at Canterbury Place in Lawrenceville, in a nursing facility among residents sometimes 40 years older. Once again, he was treated with care, showered in affection, and he was happy.
Late last month, I received a call that he wasn't eating and just wasn't himself. He was taken to the hospital, where they discovered a blood clot on his brain. Surgeons were able to clear it out, but the little guy simply ran out of strength. He died of respiratory failure.
In my grief, I want to reach out and thank so many people.
First of all, thanks to the people of Pittsburgh, who have always cared about children and the least among us. Politicians in my adopted city of Washington, D.C., often talk about the sanctity and dignity of life. But in Pittsburgh, his teachers, the nuns, his counselors, his doctors and nurses, and the people who touched Lewis' life in so many ways made real those ideals that politicians only preach.
And permit me to share the great lesson that my brother helped teach me. It is about the "power of the powerless." It is something that an essayist named Christopher de Vinck wrote a book about, and Fred Rogers wrote the introduction. In Lewis' life, I saw it firsthand.
For more than five decades, my little brother exercised a great and wonderful power over me and my family. He selected people into our lives. Those who found it difficult, uncomfortable or unrewarding to deal with him moved on. But those who had time for us or those who found a place in their hearts for him brought gentleness and spirituality into our lives. His neighborhood became our neighborhood, and simple joys and kindnesses became more precious than great wealth and those things it might purchase.
I miss him terribly already, but I thank God I was able to share 52 years with the little fella.
It was in the Pittsburgh Post Gazette
Lives Lived: The lesson of Lewis Silverstein
Life is love
Tuesday, May 05, 2009
By Mike Silverstein
My brother Lewis died last week. He was 52.
There were many things in this world that made him happy. He loved to watch Studio Wrestling, and entertained the family with his impersonation of ring announcer Johnny Francona. Bruno Sammartino was his favorite wrestler. Like many of our neighbors in Morningside, he also liked to dress up in black and gold and cheer for the Steelers, the Pirates and the Penguins. He was barely 4 feet tall.
Lewis loved music, and Christmas music most of all. For him, every day was Christmas. And any day was the right day to sing "Hark! The Herald Angels Sing."
Lewis was born with Down syndrome in 1957, and a blood incompatibility at birth required two transfusions in his first 72 hours. So tenuous was his grip on life that he did not regain his birth weight of 5 pounds, 12 ounces, until just after his first birthday. During that first year, Mom stayed up nearly every night to try to force an extra half-ounce of formula into him. She simply refused to allow him to die.
Ever so slowly, he made progress. He stood up at age 3. He took his first steps at age 6. There were few resources for families with Down children back then, and no public school facilities.
Lewis attended a preschool sponsored by Rodef Shalom Temple for a year, and then St. Anthony's School for Exceptional Children in Oakmont for more than 10 years. The love, the skill and the dedication of the nuns at St. Anthony's helped him blossom. St. Anthony's is where he developed his fondness for Christmas carols.
Lewis learned the alphabet and his numbers, but he never was able to read and write. But he helped with cooking and cleaning dishes, folded up his clothes and stored them neatly. And his table manners and personal cleanliness habits often exceeded those of his brother.
In 1980, Dad died and Mom's health began to decline. She was able to place Lewis in a group home, the Royer Center, on Negley Avenue. Even though he missed Mom and Dad, Lewis thrived at Royer. He adored his counselors, participated in all the group activities, and helped with the chores. And for more than two decades, his beloved Aunt Frances would visit him every Saturday to take him to Eat'n Park.
His order never changed, and he recited it carefully each week: Cole slaw. Spaghetti with meat sauce. Garlic bread. Iced tea. And a chocolate ice cream sundae. There always seemed to be a table ready, and for him, lunch with Aunt Fan was always the best meal ever.
Aunt Fan began to slow down by age 90 and was no longer able to take Lewis to Eat'n Park. So when I would travel to Pittsburgh every few weeks, he would insist we go to Eat'n Park and get food to take to her. And so we did, until she died at age 94.
Over the past five years, Lewis began showing signs of Alzheimer's disease. This, I have learned, is not uncommon among those with Down syndrome, even in their 40s. When he could no longer remember what the fire alarm meant, he could no longer safely live at Royer Center.
For the past year, Lewis lived at Canterbury Place in Lawrenceville, in a nursing facility among residents sometimes 40 years older. Once again, he was treated with care, showered in affection, and he was happy.
Late last month, I received a call that he wasn't eating and just wasn't himself. He was taken to the hospital, where they discovered a blood clot on his brain. Surgeons were able to clear it out, but the little guy simply ran out of strength. He died of respiratory failure.
In my grief, I want to reach out and thank so many people.
First of all, thanks to the people of Pittsburgh, who have always cared about children and the least among us. Politicians in my adopted city of Washington, D.C., often talk about the sanctity and dignity of life. But in Pittsburgh, his teachers, the nuns, his counselors, his doctors and nurses, and the people who touched Lewis' life in so many ways made real those ideals that politicians only preach.
And permit me to share the great lesson that my brother helped teach me. It is about the "power of the powerless." It is something that an essayist named Christopher de Vinck wrote a book about, and Fred Rogers wrote the introduction. In Lewis' life, I saw it firsthand.
For more than five decades, my little brother exercised a great and wonderful power over me and my family. He selected people into our lives. Those who found it difficult, uncomfortable or unrewarding to deal with him moved on. But those who had time for us or those who found a place in their hearts for him brought gentleness and spirituality into our lives. His neighborhood became our neighborhood, and simple joys and kindnesses became more precious than great wealth and those things it might purchase.
I miss him terribly already, but I thank God I was able to share 52 years with the little fella.
Wonderful Day! Updates on the boys
Big brother William, who was 4 in March had his evaluation done today at OT. William has Autism and we have been in OT, PT, Speech, Sensory integration, on and on. You name it we have done it. I'm happy to report he is doing SUPER. His OT said that in the past 3 months William has excelled 15 months of progress!!!! 15 months!!!! He is now testing at or above age level for all areas. Which is a huge for him and us. We will probably only be enrolled in Ot for another 8 weeks and then he will be released. That means that he will only have Speech 3 times a week. We have our quarterly evaluation with the Psychologist next Monday. And I'm hoping to see the same types of improvements there as well. I'm so proud of him and where he has come. He is really growing into such a big boy. So YAY!!!! William. :)
And today Trenton went to the Peds for his weight check and he is now 9lbs 4oz!!!! How awesome is that? So incredible he is doing so well and gaining good weight. The Dr. said he looks great and his chest sounds great! The medications must be doing some good and hopefully mom is doing good to for him. He has OT today too so we will see where he stands with that. Next week is his 2 month old checkup. OMG!!! 2 months old. I can't believe he's 2 months old already and I can't believe this time has flown so fast.
And today Trenton went to the Peds for his weight check and he is now 9lbs 4oz!!!! How awesome is that? So incredible he is doing so well and gaining good weight. The Dr. said he looks great and his chest sounds great! The medications must be doing some good and hopefully mom is doing good to for him. He has OT today too so we will see where he stands with that. Next week is his 2 month old checkup. OMG!!! 2 months old. I can't believe he's 2 months old already and I can't believe this time has flown so fast.
Wednesday, May 6, 2009
Happy Day
Good Morning, Today is a happy here so far. We started to increase the Captiprol for Trenton yesterday from .5ml to 1ml and he seems to be responding well. He slept well last night too. AND for the second day in a row he has taken 16oz in a 24 hour period. Which is 4oz over what he had been taking. He is also on track today for the same. So I'm very happy with his progress. He is still really congested but it's not anything that hasn't been happening so I'm not concerned.
Yesterday I made some progress on the medical bills and have all his care and bills taken care of now and that is a huge relief off of me. I am glad to have it all situated and no one going to be wanting our money while we are dealing with the surgery.
So, since things are going well I've been able to catch up on some things that I needed to around the house and have had some more energy since the emotioal toll hasn't been so strong the last few days.
So, all in all life is good here. Trenton is growing like a weed. We go tomorrow for a weight check and I can't wait to see how big he is. My goal is to have him at 11lbs by his surgery. Why? Well someone from someone I heard that was a good weight for a successful surgery. So I figured that would be a good goal. LOL
Tuesday, May 5, 2009
The Special Mother by Erma Bombeck
The Special Mother
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?Somehow I visualize God hovering over EarthSelecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."Finally he passes a name to an angel and smiles. "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel.""But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.Once the shock and resentment wear off she'll handle it.""I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy.""But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word.She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."
by Erma Bombeck
Most women become mothers by accident, some by choice, a few by social pressure and a couple by habit.This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how these mothers are chosen?Somehow I visualize God hovering over EarthSelecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger."Armstrong, Beth, son. Patron Saint, Matthew.""Forrest, Marjorie, daughter. Patron Saint, Celia.""Rutledge, Carrie, twins. Patron Saint...give her Gerard. He's used to profanity."Finally he passes a name to an angel and smiles. "Give her a handicapped child."The angel is curious. "Why this one, God? She's so happy.""Exactly," smiles God. "Could I give a handicapped child a mother who knows no laughter? That would be cruel.""But does she have the patience?" asks the angel."I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair.Once the shock and resentment wear off she'll handle it.""I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of it's own. She has to make it live in her world, and that's not going to be easy.""But Lord, I don't think she even believes in you." God smiles. "No matter, I can fix that. This one is perfect. She has just enough selfishness."The angel gasps, "Selfishness? Is that a virtue?"God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect.She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word.She will never consider a step ordinary. When her child says momma for the first time, she will be witness to a miracle and know it.I will permit her to see clearly the things I see--ignorance, cruelty, prejudice--and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life Because she is doing my work as surely as she is here by my side.""And what about her Patron Saint?" asks the angel, his pen poised in the air. God smiles. "A mirror will suffice."
Monday, May 4, 2009
Things I'm learning
It's funny. I always thought I "knew" the leassons that I have always been taught throughout the years. From my parents and grandparents, from my religion, from life in general. But only recently I learned that you really don't learn a lesson until you actually experience it. And as I sit here today I have found those life lessons that were taught to me, I'm finally learning.
The big one is "Let go, Let God" You know I have heard that a million times throughout life and always felt that I did that. Till now, Now I'm actually learning what it means to be faced with something that you seriously have no control over. And where you HAVE to let go, because you will drive yourself crazy if you don't. How it becomes apparent that the only thing you can do is to Let God do his work. Pray and Pray and continue to pray. But mostly to let God do his work. That's a hard one for me. Prayers used to come in the form of asking God to do something specific....Heal someone, do this do that. Nowadays the prayers consitent more of asking God to do his work. And to give me the strength to trust that he will do what it is that he finds the right answer. I want the peace now to trust him. Really trust him. Not the trust where you say it but not mean it. There's a difference. And I'm realizing that as well. I can only ask that I can do my part and do what it is that God would ask of me. And let me do it to the best of my ability. All else is up to him. I can not heal my son. Lord knows I would do anything it takes to do it. But the fact remains I can't. I have to let go and let god. So I ask God everyday to give me the strength. To guide me in the right direction. To guide and watch over the surgeons who we put the lives of our children in. Guide them to do God's work. And ask God to comfort and protect Trenton while he endures this pain. And to give me the strength to allow it all to happen. The Serenity Pray...Which follows the same lesson. Accept the things I can not change. Yeah that's it. Accept it. And then the wisdom to know the difference. I think I am learning that as well.
So another thing I've learned is that Life really is a journey. To it there is no straight path that you can take. That is for sure. All the plannng in the world would have NEVER lead me to this path. And I really don't believe I was lost either. I think that I have a reason for being here and God knows that reason as well. This road is not the easy road. But more and more I'm seeing that I would not want it any other way. For all things there is a reason and I will also need to trust that. Find the peace in that. And that God will see us through this trying time and on the other side of this pothole in the road I am traveling we will all be better people for it. Trusting in God and his ability better, and trusting in ourselves more with what we can achieve. And happy to have learned the lessons.
The big one is "Let go, Let God" You know I have heard that a million times throughout life and always felt that I did that. Till now, Now I'm actually learning what it means to be faced with something that you seriously have no control over. And where you HAVE to let go, because you will drive yourself crazy if you don't. How it becomes apparent that the only thing you can do is to Let God do his work. Pray and Pray and continue to pray. But mostly to let God do his work. That's a hard one for me. Prayers used to come in the form of asking God to do something specific....Heal someone, do this do that. Nowadays the prayers consitent more of asking God to do his work. And to give me the strength to trust that he will do what it is that he finds the right answer. I want the peace now to trust him. Really trust him. Not the trust where you say it but not mean it. There's a difference. And I'm realizing that as well. I can only ask that I can do my part and do what it is that God would ask of me. And let me do it to the best of my ability. All else is up to him. I can not heal my son. Lord knows I would do anything it takes to do it. But the fact remains I can't. I have to let go and let god. So I ask God everyday to give me the strength. To guide me in the right direction. To guide and watch over the surgeons who we put the lives of our children in. Guide them to do God's work. And ask God to comfort and protect Trenton while he endures this pain. And to give me the strength to allow it all to happen. The Serenity Pray...Which follows the same lesson. Accept the things I can not change. Yeah that's it. Accept it. And then the wisdom to know the difference. I think I am learning that as well.
So another thing I've learned is that Life really is a journey. To it there is no straight path that you can take. That is for sure. All the plannng in the world would have NEVER lead me to this path. And I really don't believe I was lost either. I think that I have a reason for being here and God knows that reason as well. This road is not the easy road. But more and more I'm seeing that I would not want it any other way. For all things there is a reason and I will also need to trust that. Find the peace in that. And that God will see us through this trying time and on the other side of this pothole in the road I am traveling we will all be better people for it. Trusting in God and his ability better, and trusting in ourselves more with what we can achieve. And happy to have learned the lessons.
Wednesday, April 29, 2009
Feeding and Bottles
I guess that through everything these days I have found something that I can be in control of. And that's his feeding. I take this very seriously. Kind of like a big corporate job. LOL I find myself trying more and more to get him to eat. And now that I've found the way to get him to eat decent I obsess over it. I really have a hard time allowing anyone else to feed him and basically I just don't let them. My Mother In Law does and I don't like it and my mother did once and I didn't like it either. I really have made the decision that no one can do my job the way I do it and my job is feeding him. Everyone else seems to think it's a "fun" time or a time to "play" with him. And it makes me crazy. I don't find it a game or fun at all. It's the life important thing of getting him big and keeping him eating. The Dr said that the better he eats and gains now the less of a problem we will have after surgery. So, I really find that the most important thing I can do for him. And basically since I can't make him better or make his heart healthy all I can do is feed him. And that I take as opur number one goal these days after keeping him healthy.
Since he's 8lbs and 13oz as of Monday....That's 2lbs 13 oz he gained since he left the hospital. And that is awesome to me. So I will continue to try and get him eating more and taking more at a time. That's what I can do to ensure a success in June.
Right now he eats around 12-14 oz a day. Which is low for a 6 week old baby. BUT it's much better then alot of heart babies. And that's a good sign.
Since he's 8lbs and 13oz as of Monday....That's 2lbs 13 oz he gained since he left the hospital. And that is awesome to me. So I will continue to try and get him eating more and taking more at a time. That's what I can do to ensure a success in June.
Right now he eats around 12-14 oz a day. Which is low for a 6 week old baby. BUT it's much better then alot of heart babies. And that's a good sign.
Medical Updates: The Magic Number!!!!!
So over the weekend I noticed that Trenton was not eating as well as he had been and also sweating with his feeds. He also seemed extra congested and like he was having a hard time breathing. So I called the Cardiologist on Monday AM and he asked me to have him seen by the Pediatrician. Who in turn spoke directly to the Cardio. So he was seen and had an Xray, which daddy did with him. (Thankfully) and we found that he had fluid built upin his lungs. So, The Cardiologist upped his Lasik medication to 3 times a day and added another medication. This one is Capitrol. It's a blood pressure medication and will help his heart pump a little better and reduce the fluid going into his lungs from his heart.
We then went to see the Cardio on Tuesday for another check and to get the medications. We talked about proceeding to surgery and the fact is we will proceed after our next Cardio appt which is May 19th. SO...It seems to be on the calendar for right around the middle of June. I'm scared again all over realizing that it's coming up so quickly. Part of me wants to have it done today and get it over with. While the rest of me never wants it to ever have to happen. The daily stress of waiting is taking it's toll on me. And the daily worry of the actual surgery is gut wrenching. Getting it done and over with and getting him healthy is our main priority in life these days.
A few things in the good news department from Monday is that he is now at the Magic number of 4 Kilos!!! They want babies to reach that weight so that they do much better on the heart bypass machine. Theat's when they can feel confident of the machines ability to do what it needs to do without damage during the surgery. Dr. Funari said....All the rest of the weight he gains is icing on the cake!!!!
Another positive that came out of this visit...I feel confident. I feel better about my decisions and my ability to see things and react. Kinda like i'm not in the dark now. I know what I'm looking for and know what to do. Maybe it's a false confidence but I'll take it at this point.
And last but not least by any means is that I feel really confident about his Cardiologist, his ability, his knowledge and his level of true caring for his patients. I spoke to him 3 times on Monday on the telephone. From his cell phone. Do you have Dr's that do that? Well, Not me. Until now. That shows me he really does care about his patients. Not just a daily number to him. Him and the Pediatrician are colleeges and friends so they can work together to provide great care for Trenton. And then about the Surgeons and their ability. The new hospital and it's technology. On and on...I feel good knowing that we have a great team around us for Trenton. And I feel some peace in knowing that if this HAS to be done we are in good hands.
We then went to see the Cardio on Tuesday for another check and to get the medications. We talked about proceeding to surgery and the fact is we will proceed after our next Cardio appt which is May 19th. SO...It seems to be on the calendar for right around the middle of June. I'm scared again all over realizing that it's coming up so quickly. Part of me wants to have it done today and get it over with. While the rest of me never wants it to ever have to happen. The daily stress of waiting is taking it's toll on me. And the daily worry of the actual surgery is gut wrenching. Getting it done and over with and getting him healthy is our main priority in life these days.
A few things in the good news department from Monday is that he is now at the Magic number of 4 Kilos!!! They want babies to reach that weight so that they do much better on the heart bypass machine. Theat's when they can feel confident of the machines ability to do what it needs to do without damage during the surgery. Dr. Funari said....All the rest of the weight he gains is icing on the cake!!!!
Another positive that came out of this visit...I feel confident. I feel better about my decisions and my ability to see things and react. Kinda like i'm not in the dark now. I know what I'm looking for and know what to do. Maybe it's a false confidence but I'll take it at this point.
And last but not least by any means is that I feel really confident about his Cardiologist, his ability, his knowledge and his level of true caring for his patients. I spoke to him 3 times on Monday on the telephone. From his cell phone. Do you have Dr's that do that? Well, Not me. Until now. That shows me he really does care about his patients. Not just a daily number to him. Him and the Pediatrician are colleeges and friends so they can work together to provide great care for Trenton. And then about the Surgeons and their ability. The new hospital and it's technology. On and on...I feel good knowing that we have a great team around us for Trenton. And I feel some peace in knowing that if this HAS to be done we are in good hands.
Sunday, April 26, 2009
Completely Out of Control
I just realized that I feel so completely out of control with this whole thing. Let me explain. I am an outspoken and very in control individual. I have OCD and I have always been the pro-active mom. ALWAYS....Till now. Now I feel completely and totally out of control of everything. I feel like a robot....The Cardio tells me what to do and when. The Pediatrician tells me what to do and when...And I follow commands. I realized that I'm so unknowledgable about the heart, how it works, and what needs to be done, that i find myself not even knowing where to research and what to do to make sure I am doing the right things. So, in otherwords, completely in the dark. UGH I really hate this feeling. I want to KNOW he's getting the best care, I want to feel CONFIDENT that I am doing the right things, I want to feel emotional strong in this journey and for some reason I can't find the strength to do that. I still cry everyday about Trenton's heart, and I still cry everyday he has to go through this. And crying isn't going to fix anything. I need to find a way to stop crying and start acting. UGH
Friday, April 24, 2009
Down Syndrome Research Support
Dear Down syndrome advocate and friend,
All of us who have worked to support people with Down syndrome have joined together in an emergency effort to increase government funding for Down syndrome research. We are in urgent need of your help. Recently, the National Institutes of Health (NIH) was awarded $10 billion in stimulus funding from Congress. NIH will decide how to spend most of this money between now and June.
While some of this funding has been dedicated to other disabling conditions, to date NIH has not been willing to dedicate funding to Down syndrome research.
Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) are both advocates for people with developmental disabilities and were responsible for advocating for NIH funding in the stimulus bill. We are asking you to contact these Senators and request that they encourage NIH to fund Down syndrome research.
PLEASE WRITE THESE TWO SENATORS NOW! Below is a copy of a draft letter to the Senators Harkin and Specter, which include their fax number. Feel free to personalize if you wish. The letters should be sent no later than Friday, May 8, 2009.
We would appreciate it if you would also fax a copy of your letter to us at 303-468-6061. We are compiling our letters for our visits to Washington, D.C.
If you have any questions, please contact Emily Brett (303) 468-6667 or ebrett@ajsfoundation.com. If it is easier for you, you can also stop by our offices to fax your letter. Just call in advance.
Our children with Down syndrome our counting on your support.
All of us who have worked to support people with Down syndrome have joined together in an emergency effort to increase government funding for Down syndrome research. We are in urgent need of your help. Recently, the National Institutes of Health (NIH) was awarded $10 billion in stimulus funding from Congress. NIH will decide how to spend most of this money between now and June.
While some of this funding has been dedicated to other disabling conditions, to date NIH has not been willing to dedicate funding to Down syndrome research.
Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) are both advocates for people with developmental disabilities and were responsible for advocating for NIH funding in the stimulus bill. We are asking you to contact these Senators and request that they encourage NIH to fund Down syndrome research.
PLEASE WRITE THESE TWO SENATORS NOW! Below is a copy of a draft letter to the Senators Harkin and Specter, which include their fax number. Feel free to personalize if you wish. The letters should be sent no later than Friday, May 8, 2009.
We would appreciate it if you would also fax a copy of your letter to us at 303-468-6061. We are compiling our letters for our visits to Washington, D.C.
If you have any questions, please contact Emily Brett (303) 468-6667 or ebrett@ajsfoundation.com. If it is easier for you, you can also stop by our offices to fax your letter. Just call in advance.
Our children with Down syndrome our counting on your support.
Screening Babies for Broken Hearts
Screening Babies for Broken Hearts (The New York Times)By Darshak Sanghavi, M.D
http://z11.typepad.com/savinglittlehearts/
When his own children were born, pediatric cardiologist Darshak Sanghavi asked for a simple screening test for heart defects. But the test isn’t widely used.In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.Ryan’s story isn’t that unusual, and I’ve seen half a dozen similar children recently. A few months ago, the Centers for Disease Control and Prevention reported that the infant mortality rate in the United States was 6.71 per 1,000 live births, which was widely reported as being higher than other developed countries. Birth defects, especially involving the heart, are an important cause of these deaths. In October, researchers studying infant deaths over the past 16 years in California reported that hundreds of American infants like my patient probably die each year due to missed — but treatable — congenital heart defects.How can we identify these normal-appearing newborns before they leave the hospital, become critically ill like my patient and perhaps die?Traditionally, prospective mothers have prenatal sonograms to look for birth defects. But the quality of these scans varies widely, depending on the skill of the technician and the supervising doctor. In addition, current guidelines supported by the American College of Obstetricians and Gynecologists mandate only a limited “four-chamber view” of the heart. As a result, a 1998 study from Southwestern Medical School in Texas reported that only one-quarter of major heart defects are identified prenatally.Unfortunately, when heart defects are missed by prenatal ultrasounds, pediatricians also have a hard time telling if critical cardiac problems are present. Normally, doctors examining newborns suspect heart defects if they hear a loud rushing noise (a “murmur”) with a stethoscope, notice the child has a bluish color, or lacks a pulse in the lower extremities. But in 1999, British researchers found that half of serious heart defects were missed by routine exams after birth. If sent home, these newborns become seriously ill.Folic acid can prevent up to 50 percent of many heart defects, but only if taken for about two months prior to conception. Because most pregnancies are unplanned, the C.D.C. recommends that all menstruating women should take a daily multivitamin.What’s needed is a large-scale formal screening program, similar to mammography or colonoscopy to identify at-risk individuals. We already do this to identify newborns with certain hidden but deadly conditions. For example, most state health departments currently analyze a few blood drops taken from a baby’s foot and check for certain genetic problems like phenylketonuria (PKU) and galactosemia, which are treated with special diets to prevent developmental problems.Recently, researchers have identified a promising new method called pulse oximetry to screen all babies for heart defects. Taped briefly to a newborn’s foot, a small sensor painlessly beams red light through the foot and measures how much oxygen is in the blood. It takes about a minute. (Picture E.T. the extra-terrestrial’s finger lighting up, and you get the idea - this is so true) If the screening test is abnormal, doctors perform a confirmatory ultrasound of the heart. Last year, Norwegian doctors published one of the largest clinical trials of this strategy, and checked half of all babies born in the country.The results were impressive. Within a few hours of birth, pulse oximetry detected three-quarters of critical heart defects that had been previously missed. For every 2,000 newborns screened with the toe light, roughly one with a critical heart defect might have been prevented from going home. The cost-benefit ratio compares favorably to current practices of newborn screening for PKU and hypothyroidism. In January, Swedish doctors published an even more methodical study of almost 40,000 newborns, and showed that oximetry entirely eliminated death from missed critical cardiac defects.Of course, as with any screening, the technique may miss some defects and also involves some unnecessary, though benign, testing of normal children. But these false positive rates were low (only about one in 1,000 in the Swedish study) and triggered only about two instances of extra, noninvasive testing for every serious heart defect that was picked up. Many parents and doctors caring for children with critical heart defects subscribe to some variant of the “1 percent doctrine.” If there is even a small chance of catastrophe — like the sudden death of a newborn — they feel justified to push for preemptive action, especially when it’s a harmless and inexpensive screening test.While the screening test is not done routinely in the United States, some hospitals have adopted it, mostly in Texas and Florida, where some small trials have been conducted. But parents can ask doctors to screen their babies for heart defects using pulse oximetry. It’s essentially free since it needs no specialized equipment other than the oximeter, which is present in every hospital already. A specialized doctor isn’t needed; the test is quite simple, and a nurse can do it if the pediatrician orders it anytime after birth, but before discharge from the hospital. Hopefully they won’t mind doing it. Personally, I do think parents should request it. I did for my kids.Fortunately, Ryan, the baby I was urgently called to treat, had his heart surgery last summer and is doing well now. I see him every few months in clinic.Dr. Darshak Sanghavi is the chief of pediatric cardiology and assistant professor of pediatrics at the University of Massachusetts Medical School. He is the author of “A Map of the Child: A Pediatrician’s Tour of the Body,” and his Web site is www.darshaksanghavi.com.
http://z11.typepad.com/savinglittlehearts/
When his own children were born, pediatric cardiologist Darshak Sanghavi asked for a simple screening test for heart defects. But the test isn’t widely used.In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.Ryan’s story isn’t that unusual, and I’ve seen half a dozen similar children recently. A few months ago, the Centers for Disease Control and Prevention reported that the infant mortality rate in the United States was 6.71 per 1,000 live births, which was widely reported as being higher than other developed countries. Birth defects, especially involving the heart, are an important cause of these deaths. In October, researchers studying infant deaths over the past 16 years in California reported that hundreds of American infants like my patient probably die each year due to missed — but treatable — congenital heart defects.How can we identify these normal-appearing newborns before they leave the hospital, become critically ill like my patient and perhaps die?Traditionally, prospective mothers have prenatal sonograms to look for birth defects. But the quality of these scans varies widely, depending on the skill of the technician and the supervising doctor. In addition, current guidelines supported by the American College of Obstetricians and Gynecologists mandate only a limited “four-chamber view” of the heart. As a result, a 1998 study from Southwestern Medical School in Texas reported that only one-quarter of major heart defects are identified prenatally.Unfortunately, when heart defects are missed by prenatal ultrasounds, pediatricians also have a hard time telling if critical cardiac problems are present. Normally, doctors examining newborns suspect heart defects if they hear a loud rushing noise (a “murmur”) with a stethoscope, notice the child has a bluish color, or lacks a pulse in the lower extremities. But in 1999, British researchers found that half of serious heart defects were missed by routine exams after birth. If sent home, these newborns become seriously ill.Folic acid can prevent up to 50 percent of many heart defects, but only if taken for about two months prior to conception. Because most pregnancies are unplanned, the C.D.C. recommends that all menstruating women should take a daily multivitamin.What’s needed is a large-scale formal screening program, similar to mammography or colonoscopy to identify at-risk individuals. We already do this to identify newborns with certain hidden but deadly conditions. For example, most state health departments currently analyze a few blood drops taken from a baby’s foot and check for certain genetic problems like phenylketonuria (PKU) and galactosemia, which are treated with special diets to prevent developmental problems.Recently, researchers have identified a promising new method called pulse oximetry to screen all babies for heart defects. Taped briefly to a newborn’s foot, a small sensor painlessly beams red light through the foot and measures how much oxygen is in the blood. It takes about a minute. (Picture E.T. the extra-terrestrial’s finger lighting up, and you get the idea - this is so true) If the screening test is abnormal, doctors perform a confirmatory ultrasound of the heart. Last year, Norwegian doctors published one of the largest clinical trials of this strategy, and checked half of all babies born in the country.The results were impressive. Within a few hours of birth, pulse oximetry detected three-quarters of critical heart defects that had been previously missed. For every 2,000 newborns screened with the toe light, roughly one with a critical heart defect might have been prevented from going home. The cost-benefit ratio compares favorably to current practices of newborn screening for PKU and hypothyroidism. In January, Swedish doctors published an even more methodical study of almost 40,000 newborns, and showed that oximetry entirely eliminated death from missed critical cardiac defects.Of course, as with any screening, the technique may miss some defects and also involves some unnecessary, though benign, testing of normal children. But these false positive rates were low (only about one in 1,000 in the Swedish study) and triggered only about two instances of extra, noninvasive testing for every serious heart defect that was picked up. Many parents and doctors caring for children with critical heart defects subscribe to some variant of the “1 percent doctrine.” If there is even a small chance of catastrophe — like the sudden death of a newborn — they feel justified to push for preemptive action, especially when it’s a harmless and inexpensive screening test.While the screening test is not done routinely in the United States, some hospitals have adopted it, mostly in Texas and Florida, where some small trials have been conducted. But parents can ask doctors to screen their babies for heart defects using pulse oximetry. It’s essentially free since it needs no specialized equipment other than the oximeter, which is present in every hospital already. A specialized doctor isn’t needed; the test is quite simple, and a nurse can do it if the pediatrician orders it anytime after birth, but before discharge from the hospital. Hopefully they won’t mind doing it. Personally, I do think parents should request it. I did for my kids.Fortunately, Ryan, the baby I was urgently called to treat, had his heart surgery last summer and is doing well now. I see him every few months in clinic.Dr. Darshak Sanghavi is the chief of pediatric cardiology and assistant professor of pediatrics at the University of Massachusetts Medical School. He is the author of “A Map of the Child: A Pediatrician’s Tour of the Body,” and his Web site is www.darshaksanghavi.com.
A mission of HUGE proportions
I have decided. Today of all days. A Beautiful Sunshining day in Western PA. That I have a purpose. I feel the strong need to educate and make people Aware of Congential Heart Defects in our children and Down Syndrome in our children. this comes very much from my own struggle. To find GOOD information. To find hope, to find help. It's hard to find hope and positive information not just statistics. So, I have the need to start this mission. To Share everything I find and to help everyone I know. And those I don't know. This is something Trenton deserves and every other child out there.
Petition for Global Media Awareness of CHD
Petition for Global Media Awareness of CHD
Please visit this site:http://www.gopetition.com/petitions/media-awareness-for-chd.htmlAnd sign this petition:Media Awareness for CHD ( Congenital Heart Defects )Background (Preamble):*Congenital heart defects are America's #1 birth defect. *Nearly one of every 85 babies is born with a CHD in the US. *Congenital heart defects are the Number 1 cause of birth defect related deaths.*This year almost 40,000 babies will be born with a congenital heart defect in the US. *4,000 of them will not live to see their first birthday. *91,000 life years are lost each year in this country due to congenital heart defects. *The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year. *Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research. *Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research. *More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime. *There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them. *In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.*Statistics today show that due to misdiagnosis, lack of knowledge and awareness, & complications of surgery…about 51% of deaths caused by CHD are children under the age of 1 year.*Early diagnosis is the key to survival! *For nearly 40 years, newborn screening programs have provided an important public health service by identifying newborns with metabolic, hematologic and endocrine disorders as well as hearing loss. But did you know there is also a test that could identify a congenital heart defect immediately? This painless, non-invasive test is an echocardiogram and it could dramatically increase the survival rate for children born with CHD.Due to these alarming facts, we the undersigned urge the Media to start helping in raising Awareness whether it will be my magazine and newspaper articles, books, info shows and commercials. Thank you so much for taking the time to read this petition and care so much to sign it. It it truly being appreciated.WE NEED TO MAKE CHILDRENS' HEALTH ISSUES OUR PRIORITY !If you would like to learn more about CHD, please visit the following great pages :
http://www.chloeduyckmemorial.com/
http://www.hope4tinyhearts.com/
http://www.itsmyheart.org/
http://www.tchin.org/
http://www.carepages.com/
http://www.savinglittlehearts.org/
http://www.childrensheartfoundation.org/
http://www.babyheart.org/
http://www.congenitalheartdefects.com/
http://www.chdinfo.com/
http://www.chdfamilies.org/
Due to these alarming facts listed above, we the undersigned urge the Media to start helping in raising Awareness about CHD. We need to educate the public and demand mandatory heart screenings for all babies in utero!Media Awareness should come in all ways, whether it will be by radio, magazine and newspaper articles, books, movies, info shows and commercials. More ATTENTION and AWARENESS has to be given to CHD by the Media NOW !We need to step in and step up to the plate for the health and future of our little ones.Thank you very much !
Please visit this site:http://www.gopetition.com/petitions/media-awareness-for-chd.htmlAnd sign this petition:Media Awareness for CHD ( Congenital Heart Defects )Background (Preamble):*Congenital heart defects are America's #1 birth defect. *Nearly one of every 85 babies is born with a CHD in the US. *Congenital heart defects are the Number 1 cause of birth defect related deaths.*This year almost 40,000 babies will be born with a congenital heart defect in the US. *4,000 of them will not live to see their first birthday. *91,000 life years are lost each year in this country due to congenital heart defects. *The cost for inpatient surgery to repair congenital heart defects exceeds $2.2 billion a year. *Congenital heart defects occur frequently and are often life threatening, yet research into them is grossly under funded. Only one penny of every dollar donated to the American Heart Association goes towards congenital heart defect research. *Of every dollar the government spends on medical funding only a fraction of a penny is directed toward congenital heart defect research. *More than 50% of all children born with a congenital heart defect will require at least one invasive surgery in their lifetime. *There are 35 different types of congenital heart defects. Little is known about the cause of most them. There is not yet a cure for any of them. *In the U.S., twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD.*Statistics today show that due to misdiagnosis, lack of knowledge and awareness, & complications of surgery…about 51% of deaths caused by CHD are children under the age of 1 year.*Early diagnosis is the key to survival! *For nearly 40 years, newborn screening programs have provided an important public health service by identifying newborns with metabolic, hematologic and endocrine disorders as well as hearing loss. But did you know there is also a test that could identify a congenital heart defect immediately? This painless, non-invasive test is an echocardiogram and it could dramatically increase the survival rate for children born with CHD.Due to these alarming facts, we the undersigned urge the Media to start helping in raising Awareness whether it will be my magazine and newspaper articles, books, info shows and commercials. Thank you so much for taking the time to read this petition and care so much to sign it. It it truly being appreciated.WE NEED TO MAKE CHILDRENS' HEALTH ISSUES OUR PRIORITY !If you would like to learn more about CHD, please visit the following great pages :
http://www.chloeduyckmemorial.com/
http://www.hope4tinyhearts.com/
http://www.itsmyheart.org/
http://www.tchin.org/
http://www.carepages.com/
http://www.savinglittlehearts.org/
http://www.childrensheartfoundation.org/
http://www.babyheart.org/
http://www.congenitalheartdefects.com/
http://www.chdinfo.com/
http://www.chdfamilies.org/
Due to these alarming facts listed above, we the undersigned urge the Media to start helping in raising Awareness about CHD. We need to educate the public and demand mandatory heart screenings for all babies in utero!Media Awareness should come in all ways, whether it will be by radio, magazine and newspaper articles, books, movies, info shows and commercials. More ATTENTION and AWARENESS has to be given to CHD by the Media NOW !We need to step in and step up to the plate for the health and future of our little ones.Thank you very much !
Thursday, April 23, 2009
Some Facts about AVSD
AVSD:
described as a large hole in the This complex defect is best middle of the heart. It results from a lack of separation of the atria and the ventricles into separate chambers, and a lack of separation of the mitral and tricuspid valves into two separate valves. Therefore there is a large connection between the two atria, between the two ventricles, and a single atrioventricular (or AV) valve, whereas there should be separate mitral and tricuspid valves. A very complex defect indeed! The defect is named an atrioventricular septal defect, or AVSD. An old name for this defect is an atrioventricular canal defect, or AV canal for short.
There is a wide range of how far this maldevelopment may be manifested. In it’s simplest form, there is only an atrial septal defect, and this is treated just like an ASD. More complex forms of AVSD also include the opening between the two ventricles, along with the lack of separation of the AV valve into separate mitral and tricuspid valves. In the most complex form, not only are there defects between the atria, the ventricles, and the mitral/tricuspid valves, one of the ventricles may not be properly formed, the valves may be 'over-riding' or 'straddling', there may be obstruction to the aorta, and other things. The reason this defect may be so complex is that it probably occurs during the very first stages of fetal development.
The large hole in the center of the heart lets blood from the left side of the heart (this is oxygen rich blood) pass into the right side of the heart. It then goes back to the lungs even though it has already been oxygenated. Because of the large amount of extra blood going to the lungs, high blood pressure may occur there and over time can damage the blood vessels.
Additionally, the valve between the upper (atrial) and lower (ventricular) chambers does not close properly. Blood then leaks backward from the ventricular chambers to the atrial chambers. This leak is referred to as regurgitation or insufficiency of the valve. When the valve leaks, the heart has to pump more blood. This can lead to enlargement of the heart.
This defect is usually corrected in infancy with open heart surgery to restore normal blood circulation through the heart.. Surgical repair consists of separation of the common AV valve into two valves, along with closure of the VSD and ASD. The operation represents a surgical separation of the valves, ventricles and atria, so it tends to be a big operation. Some children, however, may have too complex a defect to correct in infancy, and would initially require a pulmonary artery banding. This will decrease blood flow and reduce the high pressure in the lungs. When the child is older, the band will be removed and the defect corrected with open heart surgery.
described as a large hole in the This complex defect is best middle of the heart. It results from a lack of separation of the atria and the ventricles into separate chambers, and a lack of separation of the mitral and tricuspid valves into two separate valves. Therefore there is a large connection between the two atria, between the two ventricles, and a single atrioventricular (or AV) valve, whereas there should be separate mitral and tricuspid valves. A very complex defect indeed! The defect is named an atrioventricular septal defect, or AVSD. An old name for this defect is an atrioventricular canal defect, or AV canal for short.
There is a wide range of how far this maldevelopment may be manifested. In it’s simplest form, there is only an atrial septal defect, and this is treated just like an ASD. More complex forms of AVSD also include the opening between the two ventricles, along with the lack of separation of the AV valve into separate mitral and tricuspid valves. In the most complex form, not only are there defects between the atria, the ventricles, and the mitral/tricuspid valves, one of the ventricles may not be properly formed, the valves may be 'over-riding' or 'straddling', there may be obstruction to the aorta, and other things. The reason this defect may be so complex is that it probably occurs during the very first stages of fetal development.
The large hole in the center of the heart lets blood from the left side of the heart (this is oxygen rich blood) pass into the right side of the heart. It then goes back to the lungs even though it has already been oxygenated. Because of the large amount of extra blood going to the lungs, high blood pressure may occur there and over time can damage the blood vessels.
Additionally, the valve between the upper (atrial) and lower (ventricular) chambers does not close properly. Blood then leaks backward from the ventricular chambers to the atrial chambers. This leak is referred to as regurgitation or insufficiency of the valve. When the valve leaks, the heart has to pump more blood. This can lead to enlargement of the heart.
This defect is usually corrected in infancy with open heart surgery to restore normal blood circulation through the heart.. Surgical repair consists of separation of the common AV valve into two valves, along with closure of the VSD and ASD. The operation represents a surgical separation of the valves, ventricles and atria, so it tends to be a big operation. Some children, however, may have too complex a defect to correct in infancy, and would initially require a pulmonary artery banding. This will decrease blood flow and reduce the high pressure in the lungs. When the child is older, the band will be removed and the defect corrected with open heart surgery.
Some Facts about Down Syndrome
Down Syndrome Fact Sheet
Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
There are more than 400,000 people living with Down syndrome in the United States.
Down syndrome occurs in people of all races and economic levels.
The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
Down syndrome occurs when an individual has three, rather than two, copies of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome.
Down syndrome is the most commonly occurring chromosomal condition. One in every 733 babies is born with Down syndrome.
There are more than 400,000 people living with Down syndrome in the United States.
Down syndrome occurs in people of all races and economic levels.
The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80 percent of children with Down syndrome are born to women under 35 years of age.
People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer's disease, childhood leukemia, and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives.
A few of the common physical traits of Down syndrome are low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all.
Life expectancy for people with Down syndrome has increased dramatically in recent decades - from 25 in 1983 to 60 today.
People with Down syndrome attend school, work, participate in decisions that affect them, and contribute to society in many wonderful ways.
All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses.
Quality educational programs, a stimulating home environment, good health care, and positive support from family, friends and the community enable people with Down syndrome to develop their full potential and lead fulfilling lives.
Researchers are making great strides in identifying the genes on Chromosome 21 that cause the characteristics of Down syndrome. Many feel strongly that it will be possible to improve, correct or prevent many of the problems associated with Down syndrome in the future.
Tuesday, April 21, 2009
Big Brother William
So, William is 4. And he has really prepared me for this journey with Trenton in a small way. William has mild Autism. He is classified as PDD-NOS. He also is has been diagnosed with Expressive Language disorder, ODD, and mood disorder. As I've been through this with William for a few years now we have made leaps and bounds. William has excelled beyond belief and is so intelligent and loving. But, before Trenton was born I had a huge worry if William would be good and kind to Trenton.
Well, let me tell you! William is an awesome big brother! Better then I ever expected really. He's so loving and kind to Trenton and talks to him all the time. He plays with toys with him and reads books to him and tells him about everything he does and sees. Yesterday he played Fire Trucks with Trenton. LOL It was so adorable. Of course Trenton just lays there and takes everything in but it's so adorable how well William has responded to being the Big Brother. It really takes my breath away when I sit back and watch William interact with him. I think it was the best thing ever for William. And What a great brother for Trenton to have! I really just love it. My two boys are amazing kids for sure!!!
Also knowing that Trenton is going to grow up in a house that offers him no judgements and where normal is normal for both of the boys makes me feel really comforted. William will never look and say...Oh you have to do OT or Speech, because William has been there. And I think that as Trenton grows William will surely be the leader that teaches him everything! Even the things I don't want him too. HAHA
Well, let me tell you! William is an awesome big brother! Better then I ever expected really. He's so loving and kind to Trenton and talks to him all the time. He plays with toys with him and reads books to him and tells him about everything he does and sees. Yesterday he played Fire Trucks with Trenton. LOL It was so adorable. Of course Trenton just lays there and takes everything in but it's so adorable how well William has responded to being the Big Brother. It really takes my breath away when I sit back and watch William interact with him. I think it was the best thing ever for William. And What a great brother for Trenton to have! I really just love it. My two boys are amazing kids for sure!!!
Also knowing that Trenton is going to grow up in a house that offers him no judgements and where normal is normal for both of the boys makes me feel really comforted. William will never look and say...Oh you have to do OT or Speech, because William has been there. And I think that as Trenton grows William will surely be the leader that teaches him everything! Even the things I don't want him too. HAHA
Welcome to Holland
I love this story. It's shared so many times and I thought I'd share it here as well. This is our journey. Wonderful beautiful and full of tulips!!!
WELCOME TO HOLLAND by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Celebrating Holland - I'm HomeI have been in Holland for a while now. It has become home. I have had time to catch my breath, to settle in and adjust, and to accept this different trip than I'd planned.I reflect back on those years when I first landed in Holland and remember clearly my shock, my fear, my anger. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey, how much I have learned about Holland. But it has been a journey of time.I worked hard. I bought new guidebooks. I learned a new language, and I slowly found my way around in Holland. I met others whose plans had changed like mine and who could share my experience. Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me and have taught me to open my eyes to the wonder and gifts to behold in this new land. We supported one another, some have become very special friends, and I have discovered a community of caring. Holland isn't so bad.I think that Holland is used to wayward travellers like me and has become a land of hospitality, reaching out to welcome, assist, and support newcomers. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned the important lessons I benefit from today?Sure, this journey has been challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced and less flashy that Italy, but this, too, has been an unexpected gift. I have learned to slow down and look closer at things, with a new appreciation for the remarkable beauty of Holland. I have discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special things that Holland has to offer. I have come to love Holland and call it home.Yes, I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined.
WELCOME TO HOLLAND by Emily Perl Kingsley.
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Celebrating Holland - I'm HomeI have been in Holland for a while now. It has become home. I have had time to catch my breath, to settle in and adjust, and to accept this different trip than I'd planned.I reflect back on those years when I first landed in Holland and remember clearly my shock, my fear, my anger. In those first few years, I tried to get back to Italy as planned, but Holland was where I was to stay. Today, I can say how far I have come on this unexpected journey, how much I have learned about Holland. But it has been a journey of time.I worked hard. I bought new guidebooks. I learned a new language, and I slowly found my way around in Holland. I met others whose plans had changed like mine and who could share my experience. Some of these fellow travellers had been in Holland longer than I and were seasoned guides, assisting me along the way. Many have encouraged me and have taught me to open my eyes to the wonder and gifts to behold in this new land. We supported one another, some have become very special friends, and I have discovered a community of caring. Holland isn't so bad.I think that Holland is used to wayward travellers like me and has become a land of hospitality, reaching out to welcome, assist, and support newcomers. Over the years, I've wondered what life would have been like if I'd landed in Italy as planned. Would life have been easier? Would it have been as rewarding? Would I have learned the important lessons I benefit from today?Sure, this journey has been challenging and at times I would (and still do) stomp my feet and cry out in frustration and protest. And, yes, Holland is slower paced and less flashy that Italy, but this, too, has been an unexpected gift. I have learned to slow down and look closer at things, with a new appreciation for the remarkable beauty of Holland. I have discovered that it doesn't matter where you land. What's more important is what you make of your journey and how you see and enjoy the very special things that Holland has to offer. I have come to love Holland and call it home.Yes, I landed in a place I hadn't planned. Yet I am thankful, for this destination has been richer than I could have imagined.
Sunday, April 19, 2009
Quick thoughts for Doctors out there
I'm thinking about the Doctors and how they approach things like Down Syndrome and other disorders that our children face. And I'm thinking if I could write a letter that all doctors would read it would go like this...
Dear Doctors, I realize that I have just had a brand new baby and from a medical stand point you believe that there are concerns, but please be gentle and kind about things when you talk to me. I am an intelligent and well informed mother and can't be lied to. But, think about what you are saying before you speak. Don't ever tell me that my child "Will not" or "Can not" do something. Telling me that my Down Syndrome child will never learn to read or write is NOT productive. Telling me that he will be wonderful in Customer service and can work at places like Walmart or McDonalds when he grows up is NOT productive. What IS productive is talking straight about the challenges he will face medically and developmentally without adding one thought of what he can't do. Changing the way you speak to people can go a long way in terms of what a child is able to accomplish. What if, for a minute I was not as intelligent or resourceful or informed. What would happen if I believed your nonsense about him never learning to read or write. Would I then fail him as a mother because I would accept that as a term of his life? Would I never push for that because I was told when he was one day old that it would never happen? Really, you need to learn to lift the spirits of mothers and fathers faced with a difficult diagnosis and explain that WE CAN teach him and learn from him and that he can be anything he wants to be with enough work. If we reach for the stars we might catch one. But if we simply don't try because someone told us that the stars are too far away then how will we ever know.
My son, the one that you have labeled as Down Syndrome, is just like my other children. As when we have a child born we don't know what tomorrow holds. We can only raise them and do our best for them throughout their lives. Some children grow up to be doctors, like you, and lawyers and scientists. And some, regardless of how well we raise them grow up to be drug addicts or serial killers. Really, it's a crap shoot every single time. So, everytime a child is born and raised there are no guarantees. None. So, please don't guarantee the failure of a child I have birthed. You have no idea what that child is capable of. Nor do you know what tomorrow holds. For anyone. Please remember that and tread lightly when you speak to parents about disabilities.
Dear Doctors, I realize that I have just had a brand new baby and from a medical stand point you believe that there are concerns, but please be gentle and kind about things when you talk to me. I am an intelligent and well informed mother and can't be lied to. But, think about what you are saying before you speak. Don't ever tell me that my child "Will not" or "Can not" do something. Telling me that my Down Syndrome child will never learn to read or write is NOT productive. Telling me that he will be wonderful in Customer service and can work at places like Walmart or McDonalds when he grows up is NOT productive. What IS productive is talking straight about the challenges he will face medically and developmentally without adding one thought of what he can't do. Changing the way you speak to people can go a long way in terms of what a child is able to accomplish. What if, for a minute I was not as intelligent or resourceful or informed. What would happen if I believed your nonsense about him never learning to read or write. Would I then fail him as a mother because I would accept that as a term of his life? Would I never push for that because I was told when he was one day old that it would never happen? Really, you need to learn to lift the spirits of mothers and fathers faced with a difficult diagnosis and explain that WE CAN teach him and learn from him and that he can be anything he wants to be with enough work. If we reach for the stars we might catch one. But if we simply don't try because someone told us that the stars are too far away then how will we ever know.
My son, the one that you have labeled as Down Syndrome, is just like my other children. As when we have a child born we don't know what tomorrow holds. We can only raise them and do our best for them throughout their lives. Some children grow up to be doctors, like you, and lawyers and scientists. And some, regardless of how well we raise them grow up to be drug addicts or serial killers. Really, it's a crap shoot every single time. So, everytime a child is born and raised there are no guarantees. None. So, please don't guarantee the failure of a child I have birthed. You have no idea what that child is capable of. Nor do you know what tomorrow holds. For anyone. Please remember that and tread lightly when you speak to parents about disabilities.
Beautiful Sunshine
Yesterday was an amazing day! So beauitful out. I was able to open the windows and let the sunshine in. It was in the 70's and perfectly sunny! Trenton is doing great and so is William. William is so amazing with his baby brother. Everyday it amazes me how wonderful he is with him. He plays and talks to him and his so gentle and loving. Which, if you know William is a tough thing. He's not gentle with anyone. He's a typical pure boy through and through. Trenton slept great last night. up once at 4 and that was it from 11-8 this morning. That was nice.
We saw Dr. Arouse yesterday morning for a recheck on some Petichi that developed on Trenton's face on Friday. They did blood work (Which came back normal) and Dr. Arouse said not to be concerned. I spoke with him at length about Dr. Funari, the Cardiologist, and Trenton's T21 diagnoses. He is very upbeat about the Downs and has assured me that with all the latest interventions and medical break throughs that Trenton will grow up to have a fablous life. I was much more at ease for some reason just talking to him. He's been Will's Pediatrician since birth and I feel he's knowledgable and gives it to you straight. He also said that Dr. Funari is a wonderful Cardio doctor and is young and up to date on all the latest technologies and advancements in Childrens medicine. He said he also personally likes the him. So, thankfully Dr. Arouse was able to talk to me and give me the information that I was needing.
I asked Dr. Arouse to please take over Trenton's care as well. Dr. Sredy was not as positive and encouraging as him (Telling me Trenton would never learn to read or write) and I really want a Doctor who is positive and looking at all the wonderful things that Trenton can do and not his disability. This road is going to be tough enough without a negative force on our team.
So, Dr. Arouse said absolutely, and all I have to do is request to see him when I come into the office with Trenton. So, that's what I will do from now on.
Otherwise, things are going good. Trenton weighs 8lbs even now! WOOT WOOT! He has gained exactly 2 lbs since he left the hospital one month ago. So, Hopefully he will be around 12 lbs or so before they have to do the repair.
And speaking of his repair. I got the Cardiologist report from the office the other day as well. Gives the breakdown of what is wrong and what needs to be repaired. Bascially everything is as we thought. The Complete AVSD, PDA and midly hypopastic Ao Isthmus. Good news is there is no pulmonic valve stenosis. And his heart should be able to be completely repaired with the Open Heart Surgery in June.
Gotta run for now. Daddy is coming home from his fishing trip and we need to get things ready to spend the day with him.
We saw Dr. Arouse yesterday morning for a recheck on some Petichi that developed on Trenton's face on Friday. They did blood work (Which came back normal) and Dr. Arouse said not to be concerned. I spoke with him at length about Dr. Funari, the Cardiologist, and Trenton's T21 diagnoses. He is very upbeat about the Downs and has assured me that with all the latest interventions and medical break throughs that Trenton will grow up to have a fablous life. I was much more at ease for some reason just talking to him. He's been Will's Pediatrician since birth and I feel he's knowledgable and gives it to you straight. He also said that Dr. Funari is a wonderful Cardio doctor and is young and up to date on all the latest technologies and advancements in Childrens medicine. He said he also personally likes the him. So, thankfully Dr. Arouse was able to talk to me and give me the information that I was needing.
I asked Dr. Arouse to please take over Trenton's care as well. Dr. Sredy was not as positive and encouraging as him (Telling me Trenton would never learn to read or write) and I really want a Doctor who is positive and looking at all the wonderful things that Trenton can do and not his disability. This road is going to be tough enough without a negative force on our team.
So, Dr. Arouse said absolutely, and all I have to do is request to see him when I come into the office with Trenton. So, that's what I will do from now on.
Otherwise, things are going good. Trenton weighs 8lbs even now! WOOT WOOT! He has gained exactly 2 lbs since he left the hospital one month ago. So, Hopefully he will be around 12 lbs or so before they have to do the repair.
And speaking of his repair. I got the Cardiologist report from the office the other day as well. Gives the breakdown of what is wrong and what needs to be repaired. Bascially everything is as we thought. The Complete AVSD, PDA and midly hypopastic Ao Isthmus. Good news is there is no pulmonic valve stenosis. And his heart should be able to be completely repaired with the Open Heart Surgery in June.
Gotta run for now. Daddy is coming home from his fishing trip and we need to get things ready to spend the day with him.
Wednesday, April 15, 2009
And the little one said....
Roll Over. :) Trenton rolled over today. Three times to be exact. I had him doing tummy time as the PT said I should to strengthen his head and upper arms. And wouldn't you know it he rolled over to his back. So I put him back on his belly again and again he rolled over. And again we went... and again he rolled over. The bad news about this (If there is any bad news. HaHa) is that he won't be doing tummy time very much if he won't stay on his belly.
Tomorrow we go to the Pediatrician for his one month check up and William's 4 year old check up. They will both be getting shots. *sigh* I'm interested to see how big Trenton is though. He was 7lbs 8 oz on April 9th when we went to the Cardiologist. We started the Lasix drug at that time so I've been told he might lose a few ounces after he started the medicine. But I'm thinking he's bigger now. So I can't wait to see how big. Then Friday we are off to get Circumsized. YIKES. Hope it goes easy and not too painful for him.
Tomorrow we go to the Pediatrician for his one month check up and William's 4 year old check up. They will both be getting shots. *sigh* I'm interested to see how big Trenton is though. He was 7lbs 8 oz on April 9th when we went to the Cardiologist. We started the Lasix drug at that time so I've been told he might lose a few ounces after he started the medicine. But I'm thinking he's bigger now. So I can't wait to see how big. Then Friday we are off to get Circumsized. YIKES. Hope it goes easy and not too painful for him.
Letter to Trenton
My beloved son,
As I sit here today, watching you sleep I can't help but think of how lucky I am to be your mom. My hopes for you are that you always feel the love I have for you and that everyday for the rest of your life you are happy and content and full of joy. You have brought so much love to our lives. Your daddy and Me. We love you very much. I struggle with the pending surgery you will have to go through. I hate it for you. I cry when I think about it. Still today. It's been almost a month since I found out you would have to endure the pain and I'm still not ok with it. I hope that God sees you through the pain and you are comforted by him being there by your side. Mommy would do anything in this world for you not to have to go through this. Your sissy said mommy the other tonight that she would give you her heart if she could. She would endure the surgery for you if it meant that you wouldn't have to be in pain for one minute. And I feel the same way. We all hate it. We all cry over it. but alas, we can't. We can't walk in your shoes. We can only comfort you and love you and try to stay strong for you. We have about two months before we have to take you to the hospital and place you in the arms of the surgeons. I'm trying hard not to think about it. Although I don't do very well with that. My heart hurts me everyday amd I hate that I have to let this happen to you. I hate that I have to put you through this surgery. At the Cardiologists office while I was sitting with you during your Ecko, I decided that I have learned more about the heart then I ever wanted to know. The heart should jsut work. We shouldn't have to worry about how it works. It should just work. Thankfully we have a great Childrens Hospital here that have excellent surgeons that do really care how the heart works. Me? I just want yours to work. That's all. I'm sure in the months to come I will write you over and over again about how sad I am about this. It's amazing the amount of strength I have found since I don't have a choice but to find it. And I hope that feeling continues so that I can stay strong and me a good mommy to you.
You look beautiful today. As you do everyday. You have my nose and look so much like your daddy. I love you baby! So much more then you will ever know. Stay strong and keep on growing so that the doctors can mend your heart and we can get on with living life. Love you baby Trenton. Love forever, Mommy
As I sit here today, watching you sleep I can't help but think of how lucky I am to be your mom. My hopes for you are that you always feel the love I have for you and that everyday for the rest of your life you are happy and content and full of joy. You have brought so much love to our lives. Your daddy and Me. We love you very much. I struggle with the pending surgery you will have to go through. I hate it for you. I cry when I think about it. Still today. It's been almost a month since I found out you would have to endure the pain and I'm still not ok with it. I hope that God sees you through the pain and you are comforted by him being there by your side. Mommy would do anything in this world for you not to have to go through this. Your sissy said mommy the other tonight that she would give you her heart if she could. She would endure the surgery for you if it meant that you wouldn't have to be in pain for one minute. And I feel the same way. We all hate it. We all cry over it. but alas, we can't. We can't walk in your shoes. We can only comfort you and love you and try to stay strong for you. We have about two months before we have to take you to the hospital and place you in the arms of the surgeons. I'm trying hard not to think about it. Although I don't do very well with that. My heart hurts me everyday amd I hate that I have to let this happen to you. I hate that I have to put you through this surgery. At the Cardiologists office while I was sitting with you during your Ecko, I decided that I have learned more about the heart then I ever wanted to know. The heart should jsut work. We shouldn't have to worry about how it works. It should just work. Thankfully we have a great Childrens Hospital here that have excellent surgeons that do really care how the heart works. Me? I just want yours to work. That's all. I'm sure in the months to come I will write you over and over again about how sad I am about this. It's amazing the amount of strength I have found since I don't have a choice but to find it. And I hope that feeling continues so that I can stay strong and me a good mommy to you.
You look beautiful today. As you do everyday. You have my nose and look so much like your daddy. I love you baby! So much more then you will ever know. Stay strong and keep on growing so that the doctors can mend your heart and we can get on with living life. Love you baby Trenton. Love forever, Mommy
And Then there were 3
March 17th, 2009. St Patricks Day. 12:35PM in the Delivery Room. It was a perfect day. Perfect Labor, perfect delivery. Brett and I were there. Just the two of us. And then Trenton Alexander was born. Then there were 3. Three what? you ask? Three of us? Yes of course, Three children I had grown in my womb and delivered into this world? Yes. Three days after Brett and I's first Anniversary? Yes. But the biggest 3 I've ever heard. Three Chromosones in the Twenty First Spot. 3....There should be 2. Trisomy 21 they call it. Translating to 3 chromosones in the 21st spot. Down Syndrome. Down Syndrome. Down syndrome.
The "Catch nurse" saw it first. I hated her really that day. Poor lady just doing her job. I wanted to punch her. My baby was perfect. Why would she say that.
Then came the tests. The Ecko, The Xray, the EKG, the keeping my perfect son for hours in the nursery without telling me what they were doing and why. Then the biggest blow. His heart. His heart would need fixed. What? I hated that Doctor too. Wanted to punch him as well. Actually I felt like someone had punched me. In the stomach, in the face. My head was listening and trying to focus on what the Dr said. But I just couldn't. Atrioventricular Septal Defect? WHAT? I can't even say those words, not alone spell them. How on Earth am I ever going to get through this. It has to be a dream, someone is wrong, they are all wrong. Trenton is perfect, I am a mom 3 times over I know what I see. He's perfect.
I cried so much that day. Cried for Trenton, and Brett but mostly for myself. I mourned that person I used to be. The mother that could handle everything. The one who never imagined for one day that her children would be sick. I mourned for the life I had before I walked into that hospital that morning. I cried over that stupid number....3. I hated that number.
Then I left that hospital with my perfect son, pulled up my boot straps as daddy would say. And started to embark on this new life. A life without alot of things I used to have. But a life filled with the most love and joy I will ever feel. This I'm certain of. I know now we will be ok.
this is our journey. A journey of hurt and pain but a journey of fullfillment and joy beyond no other. I hope you share it with me.
The "Catch nurse" saw it first. I hated her really that day. Poor lady just doing her job. I wanted to punch her. My baby was perfect. Why would she say that.
Then came the tests. The Ecko, The Xray, the EKG, the keeping my perfect son for hours in the nursery without telling me what they were doing and why. Then the biggest blow. His heart. His heart would need fixed. What? I hated that Doctor too. Wanted to punch him as well. Actually I felt like someone had punched me. In the stomach, in the face. My head was listening and trying to focus on what the Dr said. But I just couldn't. Atrioventricular Septal Defect? WHAT? I can't even say those words, not alone spell them. How on Earth am I ever going to get through this. It has to be a dream, someone is wrong, they are all wrong. Trenton is perfect, I am a mom 3 times over I know what I see. He's perfect.
I cried so much that day. Cried for Trenton, and Brett but mostly for myself. I mourned that person I used to be. The mother that could handle everything. The one who never imagined for one day that her children would be sick. I mourned for the life I had before I walked into that hospital that morning. I cried over that stupid number....3. I hated that number.
Then I left that hospital with my perfect son, pulled up my boot straps as daddy would say. And started to embark on this new life. A life without alot of things I used to have. But a life filled with the most love and joy I will ever feel. This I'm certain of. I know now we will be ok.
this is our journey. A journey of hurt and pain but a journey of fullfillment and joy beyond no other. I hope you share it with me.
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