Thanks for visiting Hayden's blog. This blog was created to share news and events with friends and family about Hayden's journey with PFFD and Ulnar Dysplasia. We are hoping that our story will be helpful to other families with children with similar birth defects.
Monday, May 6, 2013
Thursday, May 2, 2013
Wednesday, April 3, 2013
Less than a month before we leave!
Sorry I haven't updated in a while. Things have been crazy around here. I will try to keep everything in order from where I last left off.
Benefit at Sports & Spirits
On January 26th, my employer held a benefit for Hayden to help with the costs associated with this trip at Sports & Spirits. (Where I bartend at.) The turnout was great and it was a success. I was very overwhelmed to say the least. Thanks to everyone came out to support us. We appreciate it more than you know. Also, I'd like to thank Donna Buty and Carine Beaupre for all of the hard work and time they put into planning everything. We love you guys.
Bake Sale for Hayden
On March 6th, Zac's co-workers in the Distribution Department of The Wexner Medical Center put together a bake sale to help as well. We would like to thank everyone for their time and effort!
I would also like to add that many co-workers have donated vacation time to Zac to make sure that he is covered the entire time that we will be in Florida. You all are amazing. This will definitely take some of the stress off of us. From the bottom of our hearts, thank you.
March 28, 2013
We received some great news! The Medical Director at OSU approved all of Hayden's surgeries with Dr. Paley, to be covered in-network. All of the time, paperwork, and phone calls were worth it! Again, this was such a relief!
We leave for Florida on April 28th. I can't believe it's only 3 1/2 weeks away. I don't know where the time has went. There have been so many emotions running through me over the last month or so, but I think more than anything we are ready get this process started and put this part behind us. We plan on taking the kids to Disney World on the way down, so they can do something fun before all of the chaos starts. Hayden is scheduled for surgery on May 7th. I will keep this as updated as I can while we are gone. Thanks everyone for your support. Xoxo
Benefit at Sports & Spirits
On January 26th, my employer held a benefit for Hayden to help with the costs associated with this trip at Sports & Spirits. (Where I bartend at.) The turnout was great and it was a success. I was very overwhelmed to say the least. Thanks to everyone came out to support us. We appreciate it more than you know. Also, I'd like to thank Donna Buty and Carine Beaupre for all of the hard work and time they put into planning everything. We love you guys.
Bake Sale for Hayden
On March 6th, Zac's co-workers in the Distribution Department of The Wexner Medical Center put together a bake sale to help as well. We would like to thank everyone for their time and effort!
I would also like to add that many co-workers have donated vacation time to Zac to make sure that he is covered the entire time that we will be in Florida. You all are amazing. This will definitely take some of the stress off of us. From the bottom of our hearts, thank you.
March 28, 2013
We received some great news! The Medical Director at OSU approved all of Hayden's surgeries with Dr. Paley, to be covered in-network. All of the time, paperwork, and phone calls were worth it! Again, this was such a relief!
We leave for Florida on April 28th. I can't believe it's only 3 1/2 weeks away. I don't know where the time has went. There have been so many emotions running through me over the last month or so, but I think more than anything we are ready get this process started and put this part behind us. We plan on taking the kids to Disney World on the way down, so they can do something fun before all of the chaos starts. Hayden is scheduled for surgery on May 7th. I will keep this as updated as I can while we are gone. Thanks everyone for your support. Xoxo
Saturday, January 19, 2013
Wednesday, January 16, 2013
Appointment with Nationwide Children's 1-16-13
Hello Everyone!
Things have been going well with Hayden! He is as rotten as ever.. our little daredevil. A few weeks ago he busted his nose and just today he got his foot caught in a strap on the ottoman. We definitely have to keep our eyes on him!!!
Today we had an appointment with Nationwide Children's Hospital Orthopedics. Our main reason for going was to have an X-ray done on his hip; this was requested by the physical therapist who wants to know why he is unable to put weight on his AFO/lift. This was the first X-ray he has had done since 03/2011. His hip has changed; the placement of the femur, etc. They told us again that they didn't see the ball of his hip, although Dr. Paley told us he was pretty sure it was there, but we will not know for sure until Hayden has a MRI (scheduled for April). We were also told that they think we are correct in thinking he isn't stable on the AFO/lift due to his hip. They said that when he is up on it, the femur is just being jammed around with no stability. So, we are hoping that he will be able to undergo one of the Super-hip procedures and that, once completed, he will be stable enough to start walking with the help of the AFO/lift.
We also made this appointment to see if it would be possible to have the lengthening done on Hayden's leg at Children's Hospital. This would have to be done once the Super-hip surgery is completed and wouldn't be until Summer 2014. The reason that the surgeons are unable to do the lengthening on his leg here in Ohio is because of Hayden's hip. The surgeon we spoke to today told us Dr. Paley is one of only two doctors in the world that know how to do these hip procedures.
Zac and I were excited to find out there is another surgeon coming to practice at Nationwide Children's Hospital by the name of Dr. Daniel Ruggles. He will be joining them March 1st. Dr. Ruggles is currently training with Dr. Shawn Standard in Baltimore. Dr. Standard is the only other surgeon in the world capable of doing the advanced hip procedures (he trained under Dr. Dror Paley when Dr. Paley was in Baltimore). Having Dr. Ruggles join NCH is exciting because we will have someone here that will be used to these cases of PFFD. We have an appointment scheduled to meet him in March. We will be asking him about the lengthening at that time.
Ideally, what we'd like to happen is to be able to get Hayden's arm lengthened/fingers separated and the Super-hip procedure done this Spring in FL and then be able to do the lengthening on his leg here in Ohio. This will all depend on conversations we have with Dr. Ruggles and also Dr. Paley when we see him in the Spring. We will do what is best for Hayden. If we can't have the lengthening done here, then it is what it is.
I will be posting updated X-ray's sometime next week after I go pick them up!
In other news, there is going to be a Benefit for Hayden held at Sports & Spirits, where I bartend. (Thanks Donna and Carine!) It will be held Saturday, January 26th from 2:00pm until whenever. There will be karaoke, an auction and a 50/50 raffle. Hope to see you there!!
Things have been going well with Hayden! He is as rotten as ever.. our little daredevil. A few weeks ago he busted his nose and just today he got his foot caught in a strap on the ottoman. We definitely have to keep our eyes on him!!!
Today we had an appointment with Nationwide Children's Hospital Orthopedics. Our main reason for going was to have an X-ray done on his hip; this was requested by the physical therapist who wants to know why he is unable to put weight on his AFO/lift. This was the first X-ray he has had done since 03/2011. His hip has changed; the placement of the femur, etc. They told us again that they didn't see the ball of his hip, although Dr. Paley told us he was pretty sure it was there, but we will not know for sure until Hayden has a MRI (scheduled for April). We were also told that they think we are correct in thinking he isn't stable on the AFO/lift due to his hip. They said that when he is up on it, the femur is just being jammed around with no stability. So, we are hoping that he will be able to undergo one of the Super-hip procedures and that, once completed, he will be stable enough to start walking with the help of the AFO/lift.
We also made this appointment to see if it would be possible to have the lengthening done on Hayden's leg at Children's Hospital. This would have to be done once the Super-hip surgery is completed and wouldn't be until Summer 2014. The reason that the surgeons are unable to do the lengthening on his leg here in Ohio is because of Hayden's hip. The surgeon we spoke to today told us Dr. Paley is one of only two doctors in the world that know how to do these hip procedures.
Zac and I were excited to find out there is another surgeon coming to practice at Nationwide Children's Hospital by the name of Dr. Daniel Ruggles. He will be joining them March 1st. Dr. Ruggles is currently training with Dr. Shawn Standard in Baltimore. Dr. Standard is the only other surgeon in the world capable of doing the advanced hip procedures (he trained under Dr. Dror Paley when Dr. Paley was in Baltimore). Having Dr. Ruggles join NCH is exciting because we will have someone here that will be used to these cases of PFFD. We have an appointment scheduled to meet him in March. We will be asking him about the lengthening at that time.
Ideally, what we'd like to happen is to be able to get Hayden's arm lengthened/fingers separated and the Super-hip procedure done this Spring in FL and then be able to do the lengthening on his leg here in Ohio. This will all depend on conversations we have with Dr. Ruggles and also Dr. Paley when we see him in the Spring. We will do what is best for Hayden. If we can't have the lengthening done here, then it is what it is.
I will be posting updated X-ray's sometime next week after I go pick them up!
In other news, there is going to be a Benefit for Hayden held at Sports & Spirits, where I bartend. (Thanks Donna and Carine!) It will be held Saturday, January 26th from 2:00pm until whenever. There will be karaoke, an auction and a 50/50 raffle. Hope to see you there!!
Sunday, December 9, 2012
Wine Tasting Event
The Wine Tasting Event held on Sunday, December 2nd at the Blue Moon Event Center:
I'd like to thank my friend, Denise for helping put together this event. All of your time and hard work is very much appreciated!!
Denise and I would like to thank, Karin Cash and the Blue Moon Event Center for the use of their space and also, The Garden Cafe on Broadway for coming and doing the Wine Tasting for us.
Thanks to all of our friends and family that helped out before, during and after the event and to those of you that came out to support Hayden! You are truly amazing.
Lastly, we'd like to thank the following businesses for their donations of goods and services to be used for the Silent Auction and raffle.
Maria Varney Photography, LA Tan-Stringtown Rd, Cashland-Stringtown Rd, Fiesta Salons-Stringtown Rd, Amanda Neiswanger-Mary Kay, LT Nails, Stefanie Varney-Hair Razors, Julia Peters-Lia Sophia, Talitas Mexican Kitchen, Denise D'Angelo-Steele, LMT, Will Neff-Huntington Bank, Little Theatre off Broadway, Penny Jacklin, Stephanie-Silpada, Danielle Sigman-Freshour, Daisy D'Angelo, Mary Edwards, LMT, Grove City Lanes, Lilly's Kitchen Table, Roosters-Stringtown Rd, Dawn List, LMT-Relax Wellness Day Spa and Plum Run Winery.
My friend, Stephanie with her daughter, Abby and Hayden.
Hayden was really social, which was a pleasant surprise! Normally, he isn't fond of big groups of people. He turned out to be quite the ham! : )
I'd like to thank my friend, Denise for helping put together this event. All of your time and hard work is very much appreciated!!
Denise and I would like to thank, Karin Cash and the Blue Moon Event Center for the use of their space and also, The Garden Cafe on Broadway for coming and doing the Wine Tasting for us.
Thanks to all of our friends and family that helped out before, during and after the event and to those of you that came out to support Hayden! You are truly amazing.
Lastly, we'd like to thank the following businesses for their donations of goods and services to be used for the Silent Auction and raffle.
Maria Varney Photography, LA Tan-Stringtown Rd, Cashland-Stringtown Rd, Fiesta Salons-Stringtown Rd, Amanda Neiswanger-Mary Kay, LT Nails, Stefanie Varney-Hair Razors, Julia Peters-Lia Sophia, Talitas Mexican Kitchen, Denise D'Angelo-Steele, LMT, Will Neff-Huntington Bank, Little Theatre off Broadway, Penny Jacklin, Stephanie-Silpada, Danielle Sigman-Freshour, Daisy D'Angelo, Mary Edwards, LMT, Grove City Lanes, Lilly's Kitchen Table, Roosters-Stringtown Rd, Dawn List, LMT-Relax Wellness Day Spa and Plum Run Winery.
My friend, Stephanie with her daughter, Abby and Hayden.
Hayden was really social, which was a pleasant surprise! Normally, he isn't fond of big groups of people. He turned out to be quite the ham! : )
Sunday, November 11, 2012
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