May 21, 2014

Its hard to believe that it has now been a month since you left us. I know that you are watching over us, smiling and giggling, running and playing. I turned on your phone and you had two voicemails from me, you had not listened to. It was odd to hear myself talking to you and praying, when you had already fallen asleep. We are starting to be able to see things and smile, instead of cry. However, I find myself going outside for the bus at 3, waiting for you to slide a recipe and grocery list on my desk. In the middle of the night, I wake and think I hear you calling for me or asking me to roll over because I’m snoring. The refrigerator is bare of all the gourmet things you liked, and I find myself not wanting to cook without you. Mason and I are good, we are working through our pain and we are holding each other up. We have had so much support. You touched so many with your courage and strength. Tomorrow, we are going to plant a tree with your girl scout troop at the elementary school. You meant so much to your teachers and classmates. You showed them that you were not defined by EB. I hope you hear us say prayers every night, I hope you know that the same nightly rituals, have not changed. We feel your presence daily, we know that you want us to be happy and rejoice in the fact you are with God. I believe we are getting there, sweetpea, albeit slowly. I hear you in crowds, I feel you coming around the corners and I see you when I close my eyes. Know that you are missed and that you continue to touch everyone who has known your life. I love you, Dad

May 21, 2014


Celebration for Hannah

I want to announce a Celebration of Hannah’s life! Please join us, if you would like, on Sunday, April 27th at 4pm. We will be honoring Hannah and her journey. A brief service will be held in memory of her and everyone her life has impacted. Followed by a joyous connection. En lieu of flowers, please consider donating to her website, so your generosity can go toward furthering research and finding a cure.
Please feel free to contact me at jgyorkii@hotmail.com or 817-776-0189

Pecan Plantation Country Club
8650 Westover Court
Granbury, TX 76049

www.acureforhannah.com

Celebration for Hannah


April 21, 2014

After almost 11 years and 3 months, I was finally able to hug my sweat pea without fear of hurting her. In an empty room, I squeezed her lifeless body and gave her the hug every father should be able to give their little girl.

With a very torn heart, we stay true to are commitment to update the harsh reality of Hannah’s beautiful life. My heart is split, on one side there is a gaping hole, on the other it is full of excitement knowing that Hannah is without wounds, without bandages, running into the loving arms of her Heavenly Father.
Hannah left this world in peace, no longer in pain. She was surrounded by her mother and I, Mason, grandparents and friends. She drifted off peacefully as I sang to her lying beside her. I have a terrible voice, and she often asked me to stop singing… except for one special song.

Lay down, my sweet Hannah
Lay down, and take your rest.
I want you to lay down, upon your Saviors breast
I love you, oh but Jesus loves you the best

and I bid you goodnight, goodnight, goodnight
and I bid you goodnight, goodnight, goodnight

Hannah has struggled for the last four months trying to heal from a gbutton placement in her stomach. We placed to help with her nutrition. It never fully healed and would leak out stomach acid, which would erode her fragile skin. She had been fighting the stomach flu over the last few weeks and it had gotten her very run down. She went into the hospital last Saturday because she was very weak. When she would cough or vomit, the gbutton would come out of her, fully inflated. Basically, she had a hole in her stomach the size of my finger and whatever she ate or drank, would just pour out, saturating her bandages and covering her fragile skin in stomach acid. This breaks down her skin and causes more damage. This very process was what was not allowing her button area to heal and eventually eroded. She had surgery to remove the button and close the wound last Thursday. The surgery went well, and we were excited for her to heal, be able to eat and drink… God knows that girl loved food! Unfortunately, surgery and weakness had taken its toll, her little body seemed to be shutting down. Yesterday, I went to switch out shifts at the hospital with her mother. She had been trying to eat and hydrate, but she blew out her stitches. The skin just could not hold. We spoke with the doctors and surgeon. He was worried that fixing it, might cause more problems. She started to struggle breathing. We were giving her some oxygen. She eventually, pushed the oxygen away. She was tired, she had fought so long for so many years. We spoke with the doctors and called family. We gave her meds to make her comfortable and loved her, until she drew her last breath. She was at peace.
Hannah has been a blessing to all that have known her, heard her cute little giggle, got to cook with her or even followed her heroic story. She is the strongest person I have ever known! It has been an honor and a gift that God entrusted her mother and I with. We tried everything we could, to give her a normal and happy life. We took many risks, transplant and others to try to cure her dreadful disease. We will continue to try to use her story to touch lives, try to use her site to raise money for a cure… So one day, all parents can squeeze their child the way they deserve.
Thank you all for continued support, prayers and love.
I hope that she has touched all that read this, as she has most definitely touched me.
Rest in Peace, my sweet pea!

Many Blessings,
Jason

April 21, 2014

After almost 11 years and 3 months, I was finally able to hug my sweat pea without fear of hurting her. In an empty room, I squeezed her lifeless body and gave her the hug every father should be able to give their little girl.

With a very torn heart, we stay true to are commitment to update the harsh reality of Hannah’s beautiful life. My heart is split, on one side there is a gaping hole, on the other it is full of excitement knowing that Hannah is without wounds, without bandages, running into the loving arms of her Heavenly Father.
Hannah left this world in peace, no longer in pain. She was surrounded by her mother and I, Mason, grandparents and friends. She drifted off peacefully as I sang to her lying beside her. I have a terrible voice, and she often asked me to stop singing… except for one special song.

Lay down, my sweet Hannah
Lay down, and take your rest.
I want you to lay down, upon your Saviors breast
I love you, oh but Jesus loves you the best

and I bid you goodnight, goodnight, goodnight
and I bid you goodnight, goodnight, goodnight

Hannah has struggled for the last four months trying to heal from a gbutton placement in her stomach. We placed to help with her nutrition. It never fully healed and would leak out stomach acid, which would erode her fragile skin. She had been fighting the stomach flu over the last few weeks and it had gotten her very run down. She went into the hospital last Saturday because she was very weak. When she would cough or vomit, the gbutton would come out of her, fully inflated. Basically, she had a hole in her stomach the size of my finger and whatever she ate or drank, would just pour out, saturating her bandages and covering her fragile skin in stomach acid. This breaks down her skin and causes more damage. This very process was what was not allowing her button area to heal and eventually eroded. She had surgery to remove the button and close the wound last Thursday. The surgery went well, and we were excited for her to heal, be able to eat and drink… God knows that girl loved food! Unfortunately, surgery and weakness had taken its toll, her little body seemed to be shutting down. Yesterday, I went to switch out shifts at the hospital with her mother. She had been trying to eat and hydrate, but she blew out her stitches. The skin just could not hold. We spoke with the doctors and surgeon. He was worried that fixing it, might cause more problems. She started to struggle breathing. We were giving her some oxygen. She eventually, pushed the oxygen away. She was tired, she had fought so long for so many years. We spoke with the doctors and called family. We gave her meds to make her comfortable and loved her, until she drew her last breath. She was at peace.
Hannah has been a blessing to all that have known her, heard her cute little giggle, got to cook with her or even followed her heroic story. She is the strongest person I have ever known! It has been an honor and a gift that God entrusted her mother and I with. We tried everything we could, to give her a normal and happy life. We took many risks, transplant and others to try to cure her dreadful disease. We will continue to try to use her story to touch lives, try to use her site to raise money for a cure… So one day, all parents can squeeze their child the way they deserve.
Thank you all for continued support, prayers and love.
I hope that she has touched all that read this, as she has most definitely touched me.
Rest in Peace, my sweet pea!

Many Blessings,
Jason

02-11-14

Just a quick update on Hannah! She has been home from surgery almost 10 days now. She is recouping well, and quite honestly, enjoying being at home and not school. She would do home bound in a second, if we let her. However, we know that she desperately needs that social piece of being in school. She came back home to me on Friday, and was under the throws of the stomach flu, that has hit a lot of North Texas. She was not eating or drinking much, and I freaked out with the thought of dehydration and lack of nutrition, that started this process at the beginning of the year! She handled feeds through her new gtube, and was not orally taking anything. There was not much sleep through the weekend, as diarrhea and vomiting were key players :( Sunday, she only took 6 ounces and vomited 3 times. I was starting to worry, but doctor called in Zofran to ease the stomach… However, Monday she woke up wanting chicken broth and noodles, by lunch she wanted cheese and crackers and by dinner she was eating potato soup!!! She is currently making chicken salad now. Guess you can only keep a chef out of the kitchen so long! We hope to work on getting school caught up and getting her to in class soon!
A special thanks to Second Nature and New Directions for Young Adults for holding a charity event at the recent NATSAP conference for Hannah! I was disappointed that I could not attend, due to living in the hospital this last month and trying to catch up. I truly appreciate the love and support from friends in the industry! I can remember missing the NATSAP conference 11 years ago, when Hannah was born, and the phone call to let them know what was going on. It is hard to believe where we are now! I want you all to know, how much it has meant to us, through the years to feel the support from personal and professional relationships! Due to circumstances, I can not always make the gatherings and enjoy the fellowship, but this industry and the people that have touched my lives the last 18 years are always close to my heart! It is truly a blessing to work with at-risk kids and young adults. To be able to make a small difference in someones’ life. It is just as much a blessing, to feel the honest and deep appreciation from you all! As always! Thank you for the love, support and prayers.
Many Blessings,
Jason

02-11-14

Just a quick update on Hannah! She has been home from surgery almost 10 days now. She is recouping well, and quite honestly, enjoying being at home and not school. She would do home bound in a second, if we let her. However, we know that she desperately needs that social piece of being in school. She came back home to me on Friday, and was under the throws of the stomach flu, that has hit a lot of North Texas. She was not eating or drinking much, and I freaked out with the thought of dehydration and lack of nutrition, that started this process at the beginning of the year! She handled feeds through her new gtube, and was not orally taking anything. There was not much sleep through the weekend, as diarrhea and vomiting were key players :( Sunday, she only took 6 ounces and vomited 3 times. I was starting to worry, but doctor called in Zofran to ease the stomach… However, Monday she woke up wanting chicken broth and noodles, by lunch she wanted cheese and crackers and by dinner she was eating potato soup!!! She is currently making chicken salad now. Guess you can only keep a chef out of the kitchen so long! We hope to work on getting school caught up and getting her to in class soon!
A special thanks to Second Nature and New Directions for Young Adults for holding a charity event at the recent NATSAP conference for Hannah! I was disappointed that I could not attend, due to living in the hospital this last month and trying to catch up. I truly appreciate the love and support from friends in the industry! I can remember missing the NATSAP conference 11 years ago, when Hannah was born, and the phone call to let them know what was going on. It is hard to believe where we are now! I want you all to know, how much it has meant to us, through the years to feel the support from personal and professional relationships! Due to circumstances, I can not always make the gatherings and enjoy the fellowship, but this industry and the people that have touched my lives the last 18 years are always close to my heart! It is truly a blessing to work with at-risk kids and young adults. To be able to make a small difference in someones’ life. It is just as much a blessing, to feel the honest and deep appreciation from you all! As always! Thank you for the love, support and

01-31-14

Today brings the end of a very long month. With over 20 days in the hospital and many frightening moments. Hannah’s surgery went very well and she was released yesterday. We will begin supplementing with nightly feeds. We hope and pray that the gbutton heals and we do not encounter issues that we did two years ago when we placed it the last time. The last time, it never properly set and she would leak stomach fluid out in the middle of the night. It caused breakdown of the skin and it was a huge ordeal every morning to clean bandages and so forth before school. Hannah is sore, but she is excited to be home and we hope we do not have to see the inside of a hospital room for some time. The wounds are healing and I believe it is due to a combination of nutrition, antibiotics and rest. We intend to keep her out of school on home bound for a while, to allow it to fulling heal and hopefully miss the nasty flu season that we are having. We will try to keep her a little less active to allow her body to catch up and naturally heal itself.
I want to thank everyone from the bottom of my heart for all of the love, support, kindness and prayers that we have received over the last several weeks. I appreciate the generosity and gifts that people sent to Hannah. I hope I have thanked everyone, if you were left out, please forgive me. It has been more than challenging to juggle time in the hospital, work and two separate homes during this time. I hope that everyone has a truly blessed New Year and I believe that ours will only get better moving forward.
Many Blessings,
Jason

01-31-14

Today brings the end of a very long month. With over 20 days in the hospital and many frightening moments. Hannah’s surgery went very well and she was released yesterday. We will begin supplementing with nightly feeds. We hope and pray that the gbutton heals and we do not encounter issues that we did two years ago when we placed it the last time. The last time, it never properly set and she would leak stomach fluid out in the middle of the night. It caused breakdown of the skin and it was a huge ordeal every morning to clean bandages and so forth before school. Hannah is sore, but she is excited to be home and we hope we do not have to see the inside of a hospital room for some time. The wounds are healing and I believe it is due to a combination of nutrition, antibiotics and rest. We intend to keep her out of school on home bound for a while, to allow it to fulling heal and hopefully miss the nasty flu season that we are having. We will try to keep her a little less active to allow her body to catch up and naturally heal itself.
I want to thank everyone from the bottom of my heart for all of the love, support, kindness and prayers that we have received over the last several weeks. I appreciate the generosity and gifts that people sent to Hannah. I hope I have thanked everyone, if you were left out, please forgive me. It has been more than challenging to juggle time in the hospital, work and two separate homes during this time. I hope that everyone has a truly blessed New Year and I believe that ours will only get better moving forward.
Many Blessings,
Jason