A blog about my daughter growing up and facing the joys and challenges of growing up with Down syndrome and Tetralogy of Fallot while enjoying the love of a rough older brother. (Look how purple her feet were before her heart repair.)
Tuesday, June 23, 2009
2 year check up
Penny had a check up today. She is doing very well, as anyone might have guessed. She weighed in at 25 lbs 10 oz. She also started to sign cold. It is the funniest thing!! :)
Friday, June 19, 2009
Is there anyone that will have us?
Everytime I come back from a trip I long for more. I had a bug in my hat for a brief time about possibly flying out to CA in October to see my family, but I decided to put a hold on that for a time. Now, I am toying with the possibility of driving my family to Chicago from CT to visit my friend that I just saw. This will only work out if I am laid off by Sept 1. Irene will be on maternity leave until about October and I will only consider this trip if I get to spend time with both her and the baby. I thought that Chicago was 11-12 hours, but I learned today that it will be 14 and one half hours! We will most likely have to stop over somewhere and break it up. So if anyone lives near I-80 (from PA to IL) and they are willing to possibly maybe give some respite to my traveling family in September let me know!!! I love road trips!
Monday, June 15, 2009
Jambo!!
I am back from Chicago and I am beat!! I am stuck here at work since my office is a 2 minute drive from the airport I just thought it would make more sense to finish out the day at work and then go home at 4pm. But it is so hard!!! 2 hours left before I can see my babies. My girlfriend Irene lives out there and she is having herself a little Tanzanian-American baby any day. She met her hubby in Tanzania in June of 2006 when she went out to do some volunteer work for six months. I finally got to meet him and I learned that he is such a perfect man for Irene.
Irene, good luck to you when the baby comes!!! I pray for a fast and pain-managable labor for you!! Give the baby lots of smooches for me.
Irene, good luck to you when the baby comes!!! I pray for a fast and pain-managable labor for you!! Give the baby lots of smooches for me.
Friday, June 12, 2009
Away I go. . . .
I really intended to have Penelope's birthday pictures as well as pictures from the Little Hearts picnic up, but I have been such a slacker lately.
I am flying out to Chicago tonight all on my lonesome to visit a very close and dear friend from High School whom with I have remained close. Strange that I am soon turning thirty and two of my closest friends are from high school and they have lived out of state pretty much since we graduated. I also connect with 2 other friends pretty regularly.
My friend Irene that lives in Chicago is having a baby at the end of the month. Please pray and hope for a smooth delivery and a healthy baby. Thank you all and I will post when I get back!!
I am flying out to Chicago tonight all on my lonesome to visit a very close and dear friend from High School whom with I have remained close. Strange that I am soon turning thirty and two of my closest friends are from high school and they have lived out of state pretty much since we graduated. I also connect with 2 other friends pretty regularly.
My friend Irene that lives in Chicago is having a baby at the end of the month. Please pray and hope for a smooth delivery and a healthy baby. Thank you all and I will post when I get back!!
Monday, June 8, 2009
Man, maybe I should just find people to biography all week!
from http://www.louisianamedicalnews.com/news.php?viewStory=1172
Dr. Dennis Mello
By: PATRICIA GANNON
No one ever has to plead with Dr. Dennis Mello to have a heart. It's an absolute necessity in his business, literally and figuratively.
As a pediatric cardiovascular surgeon, he often delivers the most serious diagnoses for the most fragile of patients. It's a job he does well, for a number of reasons.
"I took congenital heart surgery and was almost finished with the study when my first son was born requiring congenital heart surgery," said Mello. "It solidified everything. I can look at it (the specialty) from both sides."
"I was fortunate to be where I was."
It also helps that his father was a plumber and for many years, Mello likewise supported himself fixing leaks and valves while still in school. Although he briefly considered ophthalmology, the signposts along the way were clear. "Once, when I was a medical student, I watched a heart surgeon—a pediatric heart surgeon—and that was the moment for me. I always loved to take care of children."
Congenital heart surgeons treat lesions or conditions people are born with, from premature babies to adults. "It's sort of a misnomer," said Mello. "Some patients require further surgeries as adults. They need to be managed, a valve put in, or one degenerates and needs to be changed-- for instance, a baby was born without a valve. Eventually the valve will become too small and require multiple operations. We don't have a valve that lasts forever."
Still other operations are corrective, meaning all the parts of the heart are there, but in disarray. Other patients sometimes have half a heart and will have palliative operations but will never be normal. "Instead of four chambers, they have three," he said. ""It's congenital, not acquired. We make it work well the way it is."
Born in Farmington, Connecticut, just outside of Hartford, Mello was a Yale undergrad and later attended medical school at the University of Connecticut, where he did his surgical residency as well. His cardiac training came later at the University of California in San Francisco, and included two years of adult cardiac studies and two years pediatric cardiac and congenital training—the latter under the trained eye of influential pediatric surgeon Dr. Frank Hanley,
After completing his training, Mello returned to Connecticut as director of Pediatric and congenital surgery at Children's Hospital of Connecticut, and subsequently collaborated in a similar position with another physician at Yale Children's Hospital. He is 44. "But physically, it feels like 69," he laughed. "You go through a lot of schooling, I didn't finish until I was 35 and I've been at this for 10 years.
"The work puts on about 30 years."
Married to an anesthetist and the father of three, Mello was recruited by Ochsner after the post was left vacant after Katrina. "It's a great institution," he said. "I was recruited and came down not only to rebuild, but for the opportunity."
Thus far, Ochsner's new director of pediatric cardiac surgery has also been accorded the opportunity to evacuate. "The storm was interesting," he said, referring to Gustav. "My wife preceded me here, then called and said 'You have to get down here, we have to evacuate.' I slept one night in my new home and had to leave it."
Hurricane season and living out of boxes aside, Mello says New Orleans is a good fit. He likes the friendly people, the different culture, and learning to walk with his head up, not down, like they do in the Northeast. But while he worked on his home in Connecticut, he's resisted the temptation to renovate in New Orleans.
"I've been doing it awhile, plumbing, heating, carpentry, making furniture. I wanted to get settled first. Otherwise, I'd focus on the crown moldings the doors and cabinetry," he laughed. Not only does he use dangerous tools, it's a risk he takes on a regular basis. "I've been doing it a long time," he said. I have a woodshop, and I come home at night and go out and do stuff, you know, get the kids involved. I don't actually pull myself away from the family. It's not like golf."
He also has his eye on Lake Ponchartrain. A former yacht club member back home in Connecticut, he hopes to get his racing sailboat up and running soon.
But first and foremost is growing the premier congenital and pediatric department in the area. "We have a major one to the west, in Houston," he said. "I'd like to dominate the whole Southern Region."
Mello dedicates what little spare room he has in his professional schedule to missionary work in other countries. Every year, he travels to St. Petersburg, Russia, and then to the city of Ascension, in Paraguay. In just ten days time, he'll leave with a medical team, half of which he recruited from Ochsner and half from Connecticut. It's a mission he warms to. "Children in the U.S. have easy access," he explained. "Even in Russia, an unbelievable number die simply because they have no access." Mello volunteers his time and organizes other doctors in his field, then lobbies to the companies that manufacture his sutures and valves. "I'm really passionate about it," he said.
"You'd be surprised, Russia's so backward. They don't put their money and resources back into their people. Paraguay simply has no money."
What doesn't surprise us is Mello is all heart.
Dr. Mello did both Penny's surgeries and boy, was he good! He also repaired Dillon's heart as well as Georgia's and many many other children. I was actually devestated when I learned he moved down to New Orleans last September. Those kids down south sure are lucky. Penny will need additional surgeries eventually and we will have to decide if we want to go to Yale, Boston, or the new guy (girl) at CCMC at the time her next surgery is needed.
Dr. Dennis Mello
By: PATRICIA GANNON
No one ever has to plead with Dr. Dennis Mello to have a heart. It's an absolute necessity in his business, literally and figuratively.
As a pediatric cardiovascular surgeon, he often delivers the most serious diagnoses for the most fragile of patients. It's a job he does well, for a number of reasons.
"I took congenital heart surgery and was almost finished with the study when my first son was born requiring congenital heart surgery," said Mello. "It solidified everything. I can look at it (the specialty) from both sides."
"I was fortunate to be where I was."
It also helps that his father was a plumber and for many years, Mello likewise supported himself fixing leaks and valves while still in school. Although he briefly considered ophthalmology, the signposts along the way were clear. "Once, when I was a medical student, I watched a heart surgeon—a pediatric heart surgeon—and that was the moment for me. I always loved to take care of children."
Congenital heart surgeons treat lesions or conditions people are born with, from premature babies to adults. "It's sort of a misnomer," said Mello. "Some patients require further surgeries as adults. They need to be managed, a valve put in, or one degenerates and needs to be changed-- for instance, a baby was born without a valve. Eventually the valve will become too small and require multiple operations. We don't have a valve that lasts forever."
Still other operations are corrective, meaning all the parts of the heart are there, but in disarray. Other patients sometimes have half a heart and will have palliative operations but will never be normal. "Instead of four chambers, they have three," he said. ""It's congenital, not acquired. We make it work well the way it is."
Born in Farmington, Connecticut, just outside of Hartford, Mello was a Yale undergrad and later attended medical school at the University of Connecticut, where he did his surgical residency as well. His cardiac training came later at the University of California in San Francisco, and included two years of adult cardiac studies and two years pediatric cardiac and congenital training—the latter under the trained eye of influential pediatric surgeon Dr. Frank Hanley,
After completing his training, Mello returned to Connecticut as director of Pediatric and congenital surgery at Children's Hospital of Connecticut, and subsequently collaborated in a similar position with another physician at Yale Children's Hospital. He is 44. "But physically, it feels like 69," he laughed. "You go through a lot of schooling, I didn't finish until I was 35 and I've been at this for 10 years.
"The work puts on about 30 years."
Married to an anesthetist and the father of three, Mello was recruited by Ochsner after the post was left vacant after Katrina. "It's a great institution," he said. "I was recruited and came down not only to rebuild, but for the opportunity."
Thus far, Ochsner's new director of pediatric cardiac surgery has also been accorded the opportunity to evacuate. "The storm was interesting," he said, referring to Gustav. "My wife preceded me here, then called and said 'You have to get down here, we have to evacuate.' I slept one night in my new home and had to leave it."
Hurricane season and living out of boxes aside, Mello says New Orleans is a good fit. He likes the friendly people, the different culture, and learning to walk with his head up, not down, like they do in the Northeast. But while he worked on his home in Connecticut, he's resisted the temptation to renovate in New Orleans.
"I've been doing it awhile, plumbing, heating, carpentry, making furniture. I wanted to get settled first. Otherwise, I'd focus on the crown moldings the doors and cabinetry," he laughed. Not only does he use dangerous tools, it's a risk he takes on a regular basis. "I've been doing it a long time," he said. I have a woodshop, and I come home at night and go out and do stuff, you know, get the kids involved. I don't actually pull myself away from the family. It's not like golf."
He also has his eye on Lake Ponchartrain. A former yacht club member back home in Connecticut, he hopes to get his racing sailboat up and running soon.
But first and foremost is growing the premier congenital and pediatric department in the area. "We have a major one to the west, in Houston," he said. "I'd like to dominate the whole Southern Region."
Mello dedicates what little spare room he has in his professional schedule to missionary work in other countries. Every year, he travels to St. Petersburg, Russia, and then to the city of Ascension, in Paraguay. In just ten days time, he'll leave with a medical team, half of which he recruited from Ochsner and half from Connecticut. It's a mission he warms to. "Children in the U.S. have easy access," he explained. "Even in Russia, an unbelievable number die simply because they have no access." Mello volunteers his time and organizes other doctors in his field, then lobbies to the companies that manufacture his sutures and valves. "I'm really passionate about it," he said.
"You'd be surprised, Russia's so backward. They don't put their money and resources back into their people. Paraguay simply has no money."
What doesn't surprise us is Mello is all heart.
Dr. Mello did both Penny's surgeries and boy, was he good! He also repaired Dillon's heart as well as Georgia's and many many other children. I was actually devestated when I learned he moved down to New Orleans last September. Those kids down south sure are lucky. Penny will need additional surgeries eventually and we will have to decide if we want to go to Yale, Boston, or the new guy (girl) at CCMC at the time her next surgery is needed.
Friday, June 5, 2009
Friday Quote of the Day
"At no time is the human being a blob of protoplasm. As far as your nature is concerned, I see no difference between the early person that you were at conception and the late person which you are now. You were, and are, a human being."~Dr. Jerome Lejeune
http://www.splendoroftruth.com/curtjester/archives/2007/05/jerome-lejeune.php
I am really interested in Dr. Lejeune right now.
http://www.splendoroftruth.com/curtjester/archives/2007/05/jerome-lejeune.php
I am really interested in Dr. Lejeune right now.
Question of the Day.
Does anyone have some neat plans for the summer that they want to share? Scott's step-father is taking us to Montana at the end of July. I can't wait!! We have Nathaniel in the Fun Days day camp run by the East Hartford parks and rec. He is signed up for June 29 thru July 24 and it is from 8am to 4 pm. If they have space open in August I may have to add some weeks. I just don't know when I will be laid off to plan for all this. But we always have Diana as a back up plan.
Soooo, tell me your plans.
Soooo, tell me your plans.
Tuesday, June 2, 2009
An example of May 2010?
My calendar was marked today with an 8:00 am visit by Penny's PT and OT, Yvette and Linda respectively. We generally have them come together because we can only fit so many appointments in the week. At 8:07 I began to get a little nervous. Did I have the time right? Was today supposed to be a 9:15 visit with Scott. "Oh man! Now I am going into work late for no reason," I thought to myself. At 8:09 (and my clock does run a little fast), I picked up the phone to call Yvette, when I saw Linda walking up toward my door.
After we exchanged greetings I asked if Yvette was just running a little late, and Linda gave me this bewildered look. Linda then explained that she had been informed that morning that Penny was doing so well in the physical development department that she was discharged from Yvette's case load. Well, I didn't want to take this out on Linda since this was certainly not her doing, but I had to hold back the tears. You may recall from a previous post that Yvette is very important to me. Not to mention that this came as a huge surprise. I began to wonder what was going on because I know that my approval is needed to change Penny's plan. Then I thought, well maybe Scott was aware and in agreement to this and he forgot to tell me. He is always forgetting things. I attended Penny's OT in a confused (and a bit angry) state. I was upset that I never got to say goodbye; but on a more important note, I didn't agree that Penny lost that service. She is only 2. Don't I get another year out of the birth to 3 services.
At 9 am, Scott emerged from the bedroom and came down the stairs. Immediately I asked about his last visit with Yvette and if it was mentioned that her services would be reduced. Scott thought about this for a moment and then explained that they might have agreed to reduce her visits to one time a month rather than two since Penny is doing so well, but he was pretty sure he didn't dismiss Yvette's visits all together. Linda was still there at this time and admitted she could have heard wrong this morning too. . . but she didn't sound very convincing. I asked her to have Yvette call us if she met up with her.
At 9:00 am I should have been on my way out the door, but this really upset me and I was serious when I said I was holding back the tears. At 9:15 I finally got the gumption to get out the door when the phone rang. Marni was on the other line when I answered to explain that Linda just called her. No less then fifteen emphatic "No"s later, she told me that services are not cut without written documentation and a review meeting so that everyone has an opportunity to consider any changes. I kind of figured this, and I said as much to Marni, but I also explained that if Scott agreed to once a month, I am on board with that. I was just really confused and concerned if the services were just cut all together. She assured me that no, it doesn't work that way and we have a our annual review on June 16 anyway so we can address any changes to her plan at that time and have it all in writing. Hopefully, we will be meeting with Yvette sometime this month. I mean, the girl is good, but she isn't walking up and down stairs yet, so I know she will still benefit from PT at this stage in her life.
So, even though alls well that ends well is where I should be at right now, I wonder; how am I going to handle May of next year when her B23 services end?
After we exchanged greetings I asked if Yvette was just running a little late, and Linda gave me this bewildered look. Linda then explained that she had been informed that morning that Penny was doing so well in the physical development department that she was discharged from Yvette's case load. Well, I didn't want to take this out on Linda since this was certainly not her doing, but I had to hold back the tears. You may recall from a previous post that Yvette is very important to me. Not to mention that this came as a huge surprise. I began to wonder what was going on because I know that my approval is needed to change Penny's plan. Then I thought, well maybe Scott was aware and in agreement to this and he forgot to tell me. He is always forgetting things. I attended Penny's OT in a confused (and a bit angry) state. I was upset that I never got to say goodbye; but on a more important note, I didn't agree that Penny lost that service. She is only 2. Don't I get another year out of the birth to 3 services.
At 9 am, Scott emerged from the bedroom and came down the stairs. Immediately I asked about his last visit with Yvette and if it was mentioned that her services would be reduced. Scott thought about this for a moment and then explained that they might have agreed to reduce her visits to one time a month rather than two since Penny is doing so well, but he was pretty sure he didn't dismiss Yvette's visits all together. Linda was still there at this time and admitted she could have heard wrong this morning too. . . but she didn't sound very convincing. I asked her to have Yvette call us if she met up with her.
At 9:00 am I should have been on my way out the door, but this really upset me and I was serious when I said I was holding back the tears. At 9:15 I finally got the gumption to get out the door when the phone rang. Marni was on the other line when I answered to explain that Linda just called her. No less then fifteen emphatic "No"s later, she told me that services are not cut without written documentation and a review meeting so that everyone has an opportunity to consider any changes. I kind of figured this, and I said as much to Marni, but I also explained that if Scott agreed to once a month, I am on board with that. I was just really confused and concerned if the services were just cut all together. She assured me that no, it doesn't work that way and we have a our annual review on June 16 anyway so we can address any changes to her plan at that time and have it all in writing. Hopefully, we will be meeting with Yvette sometime this month. I mean, the girl is good, but she isn't walking up and down stairs yet, so I know she will still benefit from PT at this stage in her life.
So, even though alls well that ends well is where I should be at right now, I wonder; how am I going to handle May of next year when her B23 services end?
Subscribe to:
Posts (Atom)