Love For Parker
Written by Melody from Slurping Life
What follows is my interview with Parker's mom, Tammy...
Tammy, please tell us a little about Parker.
Parker is the youngest of our six children. He is 2-1/2 years old. Parker was born 6 weeks early, weighing a whopping 4.8 pounds, with chronic lung disease, underdeveloped upper airway, tethered spinal cord, Atrial Septal Defects (2 holes in his heart), an imperforate anus and an extra chromosome on his 21st pair...Down syndrome. He was, and is, simply beautiful.
When Parker was a day old his imperforate anus was discovered. The doctors had to suck all food out of his stomach. Parker was then life flighted to Children's hospital where an emergency colostomy was performed.
Age 3 months old Parker had surgery to release his tethered spinal cord. It was after this surgery that Parker's severe Pulmonary Hypertension was discovered. Due to PH, he is on many very expensive medications, and needs durable medical equipment such as an oxygen concentrator for oxygen 24/7 and a CPAP (Continuous Positive Airway Pressure) for his severely obstructive sleep apnea. Parker's initial pulmonary hypertension levels were the highest his cardiologist, a specialist in PH, had ever seen.
Because Parker has been so sick for so much of his life, he is still unable to crawl or walk. He receives speech therapy, physical therapy and occupational therapy, but on a limited basis. Our insurance company doesn't agree with Parker's prescribed frequency of therapies.
Parker is an amazing little man. Clever, happy and such a joy to have in our family. He's a fighter. We believe that Parker was put here for a reason, and it is our goal to provide the best medical care possible so that he can achieve his potential.
Parker certainly has been through a lot, how many surgeries has he had so far?
Altogether 5, which have included very long and scary PICU (Pediatric Intensive Care Unit) stays.
How many more surgeries to come?
Parker will have at least 2 more surgeries. One to correct the imperforate anus and another to reverse his colostomy. These are both exceptionally invasive procedures, and we must wait until Parker is healthy enough to withstand them. There is also a chance he will need surgery to repair the Atrial Septal Defects (the holes) in his heart.
While Parker is an adorable little boy, he also sounds tough. Does he get that from you?
Actually, I draw much of my strength from him.
Tell us about when you were told of Parker's medical problems.
During my pregnancy a routine ultrasound revealed that Parker's femur bones were short. This is a classic soft marker for Down syndrome. After several ultrasounds, we were given a 4%chance (based on the fact that I was 42 at the time and the shortened femurs) of Parker being born with Down Syndrome.
So you had no idea of Parker's medical issues before his birth, but were simply told of a small chance of his having Down Syndrome?
That's right. But the Down syndrome was a non-issue. Parker was our child, and we were totally in love with him. No other issues showed up during the ultrasounds. We thought Parker would be born very healthy, just as our other children had been.
Tell us about Parker's home life.
Parker is adored by two older brothers and three older sisters. Parker and his grandmother, my mom, have a magical relationship. The two of them are extremely close.
To help us keep Parker healthy we have him in what we call our "Safe Room". This is a Parker and Mom-Dad room only. His brothers and sisters may only come in one at a time after they have washed, sanitized and masked up.
Tammy, do you get out much? How do you find time for yourself in order to stay strong and cope?
I try to get out at least once a week just for me. Even if it's just a quick run to get a Dr. Pepper over crushed ice.....my biggest vice. We try to arrange one day per week with no doctor appointments, visits to the lab for blood draws, therapies, etc. It doesn't happen every week. There are some days that are very, very hard, and I have found that it helps to share my days on Parker's blog, Praying for Parker.
I keep a deep faith and tell myself that things are going to get better. That one day with God's help, Parker will be able to run and play like other little boys.
All of Parker's treatment sounds extremely expensive, how do you manage financially?
My husband is a Principal for our local school district. He is also working a second job. We have drained our savings account, taken out loans and wracked up quite the credit card debt.
We don't qualify for Parker to receive Social Security or Medicaid. We do have insurance, but unfortunately, we are part of a widely growing section of society whose insurance doesn't cover the medical bills. We don't make enough money to pay what our insurance company doesn't, and there are many, many things our insurance will not cover. It is a very large crack that many middle class families are finding themselves falling through. They wind up losing their savings, their homes and many times their marriages.
How can people reading this help Parker?
Right now the easiest way to help Parker would be to donate to "Love For Parker" , July 23 through July 27, by clicking the link or the "Love For Parker" button below. Not only will they be donating to Parker's medical fund, but they will have a chance to win a Hewlett Packard digital camera, printer and accessories package valued at over $400. And that's just one of many prizes that will be up for grabs during the love offering.
Tammy, thank you for sharing your precious Parker with us.
I can't begin to tell you how incredible it feels to know that a group of people would get together and see in Parker the same potential WE see in him. Each and every time someone donates to Parker's medical fund, we feel the same exact way. We feel so incredibly blessed that there are others out there willing to give of their resources because they share in our hopes and dreams for Parker. We want Parker to be with us for a very long time. We are sincerely grateful for all of you who are able to see the very big potential in a very little guy.
10 comments:
I also have PH, but I can't imagine having this terrible disease and being as young as Parker.
I extend my deepest and most profound empathy for Parker's family. My burden is so much lighter than yours, but I share your challenges and pray for a cure.
We must continue to have PHenomenal Hope.
such an amazing story about such an amazing boy. Melody you are wonderful for hosting this competition and I will of course be donating to help Parker this week.
Thank you for sharing this. How wonderful the 'blogosphere' is as a means of reaching people. I will be donating this week.
Thank you to all. Donations would be greatly appreciate, and just as appreciated is holding Parker close in prayer and thought.
Heather, thank you for the opportunity to do this interview.
Melody: you are more than welcome.
I'll post the button, and keep Parker in in our familiy prayer.
What an amazing little boy! Parker and his family will be in my prayers.
What an amazing story and an even more amazing child. You are all in my thoughts and prayers.
Melody, I have done an entry on Parker and this love drive for him. I hope that it helps, even if only in a small way. I only wish I had been able to do it sooner.
What an amazing story this brought a tear to my eye. God bless and I hope you all the luck in the world.
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