Vinnie's Journey to Philadelphia #2
Donation protected
Vincent Stephen Natale | 08.26.13
Vinnie was born 16 months ago, in Madison Wisconsin at Meriter Hospital. In his short little life span, he has had over 15 sets of casts, 1 surgery and multiple Physical & Occupational therapy appointments on a weekly basis. He has been seen by professionals in both Madison & Iowa and while we feel that he has recieved great care there, we needed to seek further expertise to help our little boy get the care he needs to eventually stand and walk!
Vinnie had his first appointment at Shriners Hospital in Philadelphia, this past December. The worlds leading expert in AMC is in Philadelphia and we felt it was in his best interest to be seen there.
This appointment was made 10+ months ago, we met with two different doctors :: Dr. Kozin & Dr. Van Bosse. They both specialize in treating children with AMC (Arthrogryposis) which is a condition Vinnie was also diagnosed with in addition to his Clubfoot. {Relatively rare, AMC occurs in 1 out of every 3,000 births. AMC varies in the degree that it affects each person. The phrase Arthrogryposis Multiplex Congenita literally means arthro – joint, gryp – curved, congenita – are present at birth.} From what we are told from Vinnie’s doctors and therapists he has a mild form. After meeting with multiple doctors & his geneticist Vinnie was diagnosed with the “Distal” type, which means he is only affected in his hands and feet.
When we met with Dr. Kozin, who specializes in the upper areas of the body (hands for Vinnie), he was very pleased with the flexibility and agility of his hands and basically we were told to continue with the therapy he is receiving, but that he expected for Vinnie to continue to have full range of motion in his arms & hands. When we met with Dr. Van Bosse (he specializes in the lower areas, so legs & feet), he initially had a potential concern with his hips, but after an x-ray came back "normal range" we were able to rule that out. With many children that have Arthrogryposis, it is common that their muscle tone is weaker therefore our main concern was to find out if he thought if Vinnie would eventually be able to walk? Dr. VB said and I quote “It isn’t a matter of if, it is a matter of when”. He gave us nothing but hope that that will happen.
Dr VB suggested that he needed to be put back into a series of casts (3-4) and then be put into AFOs (leg braces that will help support his muscles) so that he can stand and eventually walk. Because he is affected with Arthrogryposis AND Clubfoot it makes the situation a bit more difficult and relapse happens more often. Some people may ask why we are going half way across the country to seek medical care instead of continuing in Iowa. The answer is simply that Dr. Morcuende (his Iowa Dr) is an absolute excellent and quite arguably the best in his field for Clubfoot when it is an isolated condition, but Dr. Van Bosse is thee best Dr in the country for Arthrogryposis and quite honestly Vinnie could not be in better hands.
So, what is next? The plan is that we will travel out there in mid-January and Vinnie & I will stay for 12-14 days while Dr. Van Bosse gives Vinnie 4 casts in that short period of time, stretching and forming his foot so that they are more susceptible to bearing weight and walking. Nick will get us out there safely and fly home for the week to work and be with Gabe & Lucy. He then will fly back at the end of the week for his last appointment and we will all drive back home together. There is a small possibility that he may need surgery in that time period as well. (We pray that that isin’t the case.)
When we return home at the end of January, Vinnie will be in casts for another 3-4 weeks and we will have to fly back out there in February to have the casts removed and have him properly fitted into his braces.
We all are both very anxious about this next step and although we know it is but a small chunk of time in the long term of Vinnie’s life, it is a lot to undergo for everyone, for Vinnie, for Nick & I and for Gabe & Lucy and for our friends & family at home helping out and supporting us.
We ask that you keep us in your prayers and that the transition is smooth and that Vinnie tolerates these casts well. He is such a happy baby and smiles all the time, and I pray to God every night that that isn’t taken away.
We feel we are so blessed with the people God has put in our lives. Many of our friends & family have continued to ask how they can help and we have already received some incredibly thoughtful gifts from family & friends to help offset the cost of this upcoming trip and it was suggested to us to start this page.
We will also use this place to keep everyone updated on his progress and our trip!
Trip Expenses ::
*gas to & from philadelphia
*airfare for nick to fly home for the week and back to philadelphia
*RMH, Ronald McDonald House, approximately $200
*additional food & travel expenses for the two weeks we are gone (tolls, parking fees etc)
*before & after school care for Gabe & Lucy
From the bottom of our hearts, Thank-you to everyone who has offered both emotionally, physical and financial support thus far, we love you all!
Stephanie, Nick + Vinnie
Vinnie was born 16 months ago, in Madison Wisconsin at Meriter Hospital. In his short little life span, he has had over 15 sets of casts, 1 surgery and multiple Physical & Occupational therapy appointments on a weekly basis. He has been seen by professionals in both Madison & Iowa and while we feel that he has recieved great care there, we needed to seek further expertise to help our little boy get the care he needs to eventually stand and walk!
Vinnie had his first appointment at Shriners Hospital in Philadelphia, this past December. The worlds leading expert in AMC is in Philadelphia and we felt it was in his best interest to be seen there.
This appointment was made 10+ months ago, we met with two different doctors :: Dr. Kozin & Dr. Van Bosse. They both specialize in treating children with AMC (Arthrogryposis) which is a condition Vinnie was also diagnosed with in addition to his Clubfoot. {Relatively rare, AMC occurs in 1 out of every 3,000 births. AMC varies in the degree that it affects each person. The phrase Arthrogryposis Multiplex Congenita literally means arthro – joint, gryp – curved, congenita – are present at birth.} From what we are told from Vinnie’s doctors and therapists he has a mild form. After meeting with multiple doctors & his geneticist Vinnie was diagnosed with the “Distal” type, which means he is only affected in his hands and feet.
When we met with Dr. Kozin, who specializes in the upper areas of the body (hands for Vinnie), he was very pleased with the flexibility and agility of his hands and basically we were told to continue with the therapy he is receiving, but that he expected for Vinnie to continue to have full range of motion in his arms & hands. When we met with Dr. Van Bosse (he specializes in the lower areas, so legs & feet), he initially had a potential concern with his hips, but after an x-ray came back "normal range" we were able to rule that out. With many children that have Arthrogryposis, it is common that their muscle tone is weaker therefore our main concern was to find out if he thought if Vinnie would eventually be able to walk? Dr. VB said and I quote “It isn’t a matter of if, it is a matter of when”. He gave us nothing but hope that that will happen.
Dr VB suggested that he needed to be put back into a series of casts (3-4) and then be put into AFOs (leg braces that will help support his muscles) so that he can stand and eventually walk. Because he is affected with Arthrogryposis AND Clubfoot it makes the situation a bit more difficult and relapse happens more often. Some people may ask why we are going half way across the country to seek medical care instead of continuing in Iowa. The answer is simply that Dr. Morcuende (his Iowa Dr) is an absolute excellent and quite arguably the best in his field for Clubfoot when it is an isolated condition, but Dr. Van Bosse is thee best Dr in the country for Arthrogryposis and quite honestly Vinnie could not be in better hands.
So, what is next? The plan is that we will travel out there in mid-January and Vinnie & I will stay for 12-14 days while Dr. Van Bosse gives Vinnie 4 casts in that short period of time, stretching and forming his foot so that they are more susceptible to bearing weight and walking. Nick will get us out there safely and fly home for the week to work and be with Gabe & Lucy. He then will fly back at the end of the week for his last appointment and we will all drive back home together. There is a small possibility that he may need surgery in that time period as well. (We pray that that isin’t the case.)
When we return home at the end of January, Vinnie will be in casts for another 3-4 weeks and we will have to fly back out there in February to have the casts removed and have him properly fitted into his braces.
We all are both very anxious about this next step and although we know it is but a small chunk of time in the long term of Vinnie’s life, it is a lot to undergo for everyone, for Vinnie, for Nick & I and for Gabe & Lucy and for our friends & family at home helping out and supporting us.
We ask that you keep us in your prayers and that the transition is smooth and that Vinnie tolerates these casts well. He is such a happy baby and smiles all the time, and I pray to God every night that that isn’t taken away.
We feel we are so blessed with the people God has put in our lives. Many of our friends & family have continued to ask how they can help and we have already received some incredibly thoughtful gifts from family & friends to help offset the cost of this upcoming trip and it was suggested to us to start this page.
We will also use this place to keep everyone updated on his progress and our trip!
Trip Expenses ::
*gas to & from philadelphia
*airfare for nick to fly home for the week and back to philadelphia
*RMH, Ronald McDonald House, approximately $200
*additional food & travel expenses for the two weeks we are gone (tolls, parking fees etc)
*before & after school care for Gabe & Lucy
From the bottom of our hearts, Thank-you to everyone who has offered both emotionally, physical and financial support thus far, we love you all!
Stephanie, Nick + Vinnie
Organizer
Stephanie Gebhardt Natale
Organizer
Janesville, WI