Thursday, July 21, 2011

When we were first told about Jack's condition at 20 weeks along in my pregnancy, we told our parents the news and spread the blanket of the fearful unknown over my family and loved ones. My Father, having already spent years in Cardiology due to his (unrelated) heart problem, called up his long-time friend and cardiologist, Dr. Don Doty. Dr. Doty told my dad right off the bat that when we went to Primary Children's we were to request Dr. John Hawkins, because "he was the best." Dr. Doty had actually trained under Dr. Norwood- of the "Norwood Procedure," so his recommendations were taken seriously. We were privileged to meet Dr. Hawkins and have him perform the first (and the most important) surgery on Jack. The first stage of the Norwood is high risk, and only 70% survive. Dr. Hawkins was there when Jack was 5lbs 14oz, with his incredible hands, fixing Jack's broken heart. We will ALWAYS have a special place in our heart for him, and will be forever grateful.

John Alan Hawkins, MD 1955 ~ 2011 John Alan Hawkins MD, 55, beloved husband, father, son, brother, and friend passed away on May 15, 2011 in his home surrounded by his loved ones. He fought a courageous 25 month battle with pancreatic cancer. He was born June 29, 1955 in Wichita, Kansas to Lois Price and John Powell Hawkins. John married Mary Jennifer Coleman, his soul mate and perfect companion on June 29, 1982 in Salt Lake City, Utah. He and Jenny were blessed with four wonderful children, Sarah Jane, Anne Elizabeth, John Sherman, and Mary Jessica. John graduated from the University of Kansas in 1977 Phi Beta Kappa with a degree in biochemistry. He earned his MD from the University of Kansas in 1980 where he was elected into Alpha Omega Alpha. He completed his general surgery residency at the University of Utah in 1986 and cardiothoracic trainings in 1989. He also finished a fellowship at Cincinnati Children's Hospital in pediatric cardiovascular surgery. John was on staff at Primary Children's Medical Center from 1991 until his diagnosis in April 2009. During his time at PCMC he served as the Chief of the Division of Pediatric Cardiothoracic Surgery from 1999 until 2009 and Chief of Cardiothoracic surgery at the University of Utah Medical Center from 2001 until 2009. Throughout his practice John saved the lives of countless children, served on numerous editorial boards, and held offices in multiple national organizations. John was a gifted, compassionate surgeon, a devoted husband and father, and a talented craftsman, luthier, and musician. He was a man of great humility and unwavering integrity, who was an example to us all. He will be deeply missed. John is survived by his loving wife Jenny, of nearly 29 years, and their four children, Sarah Jane (Brian Michaelson), Anne Elizabeth, John Sherman, and Mary Jessica. He is also survived by his mother Lois Price of Wichita, Kansas, brother David (Judy) of Wichita, Kansas, sister Laura of Leawood, Kansas, Mother in-law Jane Coleman, brothers in-law Dr. Michael Coleman (Anne) and Dr. Don Coleman (Margie), numerous nieces and nephews, and countless friends. John was preceded in death by his father John Powell Hawkins and father in-law Dr. Sherman Coleman. Deepest gratitude to all the doctors, nurses, and staff at Huntsman Cancer Institute and Rocky Mountain Hospice for their exceptional and compassionate care during this difficult time. At John's request a private family memorial was held. In lieu of flowers John and his family have requested contributions to: The Heart Center at Primary Children's Medical Center (100 North Mario Capecchi Drive, Salt Lake City, UT 84113), Huntsman Cancer Institute (500 Huntsman Way, Salt Lake City, Utah 84108), Camp Hawkins (1469 Wilton Way, Salt Lake City, Utah 84108 or camphawkins.org ), Coaches vs. Cancer Believe Campaign (4421 S. Williamson Lane, Spokane, Washington, 99223), or a charity of your choice. Arrangements entrusted to Starks Funeral Parlor. Online condolences may be offered to the family at www.starksfuneral.com

Published in Deseret News on May 22, 2011

Saturday, April 9, 2011

Holly Saunders McKell, a Heart Hero.

Holly Saunders McKell was born with one valve and one artery- and due to complications with her liver and lungs, her heart was weak and she needed a donor heart, lung and liver. With such odds against her, she chose to live a wonderful life knowing her days were numbered. Holly returned to her Heavenly Father on Saturday, April 2, 2011. I see her as a hero and know that she has been an example to all CHD survivors. Our thoughts and prayers go to her family and we send our love.

Monday, January 31, 2011

IHH FUNDRAISER- Chick-Fil-A



Tuesday, February 8th at the SOUTH JORDAN CHICK-FIL-A

Come and help raise money and awareness for CHD's, by eating out at Chick-Fil-A. Partial funds from everything spent between 7pm-9pm will be donated to Intermountain Healing Hearts. Please help us support a GREAT group that helps all of us heart families out there!

Tuesday, January 18, 2011

SOS/SSI




After lots and lots and lots of work, I think we have actually gotten Jack approved for SSI. Dealing with government agencies is something I think people should actually get paid to do. I think there should be people out there that know the ins and outs of these facilities, able to find the fastest track to getting things done, the right numbers to call (and know the RIGHT times of the day and week to call them...) and know where all the offices are, suite numbers, hours of operation and the quickest way to get to them.

I have got a good hold on Utah, state agencies are so tricky, but I have spent years figuring it out. I know what to say when starting a "chat" with the Dept of Workforce Services. I know they need my case number, social security number, phone number and address. THAT'S RIGHT- THEY DON'T NEED MY NAME. It is an arduous feat to maintain our benefits through the state. It is especially complicated because of Josh's work. We are in monthly contact with them faxing in reports of income and changes. It is a lot of work, and if there WERE someone who knew the ins and outs then I would hire them to maintain Medicaid for Jack. Then I would hire them to maintain our federal benefits with Social Security.

I'm not even sure how it is going to work, and now that Jack's surgeries are all complete, the funds will just be used to keep him alive and thriving (clothes, food, education.) But being that the SSI fund is quickly depleting, who knows how long he will have it.

My advice to other parents out there with children that have CHD's or any other medical need, do this SOONER than LATER. Honestly this could have saved lots of financial woe's that fell upon me and my husband over the last 5 years and possibly have changed our situation for the better. I'm grateful for everything, the insurance we DID have, while we had it, the patient accounting department's of the hospitals, and of course the fact that Jack is doing well. But not knowing what I was getting into with my first born has certainly taken its toll, and I would like to help other parents out there get better control of their lives when the blessing of high maintenance children come into their lives.

Once the SSI program is clearer to me, I'll share more. But they didn't tell me much, other than we were approved. So I don't even know what I'm in for (again.) Stay tuned.

Monday, October 18, 2010

WOO!

JACK
IS
ON
MEDICAID!!

(Yay!)

Thursday, September 9, 2010

PARENTING 101



In the last three days, Jack has hit a ton of kids, and BIT one of them. He knows it's wrong, he knows it hurts others and he still acts on his emotions. Being an only child, he doesn't understand that not everything is HIS, and you must SHARE and other kids aren't competition- they are friends.

I try to talk with him, and be calm. I've tried yelling, to scare it out of him. I've tried taking things away. But it is still happening.

If there is ANYONE out there with a similar problem, or who has had this problem in the past and overcome it, please- pretty please, share your secret. I'll take any advice. I hate being the mom the teacher has to pull aside to tell her her son had a "bad day" and "made some mistakes."

Monday, May 10, 2010

Good memories of rough times..

I am trying to organize the first 5 years of Jack's life in a sort of journal-type-book-thing, that he can perhaps take with him to school for show and tell to help explain why he is so dang special. But I have sadly been unable to track down some important pictures involving the Glenn, his second surgery. However, I came across this video, and the most amazing part of this is that he is only FOUR days out of heart surgery. His spirit shows through so much, and his desire to just be happy and have fun is still with him. But even though he is hooked up to things and has a huge incision on his chest, this video makes me smile.