A compilation of writings by Tammy Hodson at Praying for Parker.
A mom.
A medically fragile little boy with Down syndrome.
A story to tell.
We consider Parker to be an exceptional blessing in our lives. We are constantly amazed at how such a little guy has inspired so many people. But we believe that one of his callings in this life is to touch the hearts of others. Parker still has at least two extensive surgeries in his future.
His health issues include:
1. Pulmonary Hypertension - One of Parker’s doctors describes Parker’s PH as being caused by upper airway obstruction due to severe obstructive sleep apnea, combined with chronic lung disease due to Parker’s underdeveloped pulmonary system. This could cause heart failure, which requires Parker being on supplemental oxygen and medication. If we can keep Parker healthy enough for his lungs to grow, then new tissue will be generated to slowly heal his lungs. This will lead to his PH numbers receding.
2. Tethered Spinal Cord - Parker’s spinal cord was attached to his sacrum, which could cause paralysis as he grows. His cord was de-tethered in May of 2005, but vigilance is required to make sure that the cord does not re-tether.
3. Failure to Thrive - because Parker is constantly so sick, he hasn’t been growing very well. He weighs 23 pounds and is 2.5 years old.
What can I say? The kid is teeny. Really, really teeny.
But he’s HUGE in courage, smiles, spunk and love.
4. Bowel Obstruction - Parker will need two surgeries to create a functional tush, aka, his Teeny Tiny Designer Heiny. As of now has a colostomy until he becomes healthy enough to undergo such extensive surgeries.
5. To help with Parker’s severely obstructive sleep apnea, and his severe pulmonary hypertension, Parker was trached in October of 2007.
6. To help Parker get enough nutrition he received a g-tube in November of 2007.Because of these issues, Parker is on several expensive medications as well as using several items of durable medical equipment. Parker has already had two surgeries and many stays in the PICU at Primary Children’s Hospital in SLC, Utah.
To help us keep Parker healthy we have him in what we call our “Safe Room” This is a Parker and Mom and/or Dad room only, the kids can only come in one at a time after they have washed, sanitized and masked up.
Parker receives the following therapies and services:
Occupational Therapy
Through Alpine School District Parker receives one hour of OT a month. Parker is working on reaching across his baseline on a consistent basis and increasing his hand strength. We work with Parker to hold a crayon with the proper grip. We are teaching Parker how to insert small objects into even smaller openings. Parker is learning how to twist things on and off and flip switches. He has successfully mastered both throwing and catching a ball. Any ball. The kid loves balls. Parker has also mastered the fine art of stacking. They kid can stack anything…anywhere.
Physical Therapy
Through Alpine School District Parker receives physical therapy twice a week. He has mastered crawling (when he wants to), and pulling himself up to a stand. He is still learning the best way to get out of a stand. And we keep the faith that Parker will, indeed, walk. And run. And skip. And jump.
Speech Therapy
Through Alpine School District Parker receives one hour of speech therapy a week. Parker is learning how to express his needs through sign. He is working on two word sentences such as ‘Want Car.” Although “No! Mom!” still seems to be his all time favorite.
Feeding Therapist
Our school district will not provide any feeding therapies for Parker. So we have found an independent therapist to help Parker. It is fairly common for kids with g-tubes to no longer have a desire to eat by mouth. But since eating helps prepare a child for speaking, we feel that this therapy is something we need to provide for Parker. Plus, we hope that one day Parker will no longer need special feeds via a g-tube. When that time comes we don’t want him not to understand such basics as chewing, moving food around in his mouth, drinking from both a cup and straw and swallowing.
The whole eating thing is made even harder by Parker’s trach. Kids that have been trached can’t smell or taste. In order for Parker to smell or taste he has to be wearing his ’speaking valve’ on his trach. But because of Parker chronic lung disease he can’t wear the speaking valve for more than about an hour a week.
Pre-school
Because of Parker’s health issues he is unable to attend school. And after lots of discussion and prayer both Reed and I feel that Parker needs would best be met in a home schooling setting. In a few years we may re-evaluate this decision, but I doubt it. Through Alpine School District Parker is visited once a week by a special needs pre-school teacher.
This year Parker will continue to work on colors and sorting and identifying animals. I have also created almost 25 lesson plans that will cover topics from bugs to trucks to gingerbread men. I want Parker to explore the world around him to the best of his ability.
I am so grateful for the degrees I have in Early Childhood and Elementary Education. These have served me well with all of my kids. But they are even more of a blessing with Parker.
Because insurance only partially covers Parker’s numerous medical bills, a special account has been set up at all Zion’s Banks in the name of Parker Reed Hodson. These funds will help to ensure that Parker is able to get the care that is absolutely necessary to his overall health, well being, and quality of life. All donations will benefit the Uniform Gifts to Minors Act in the name of Parker Reed Hodson. Contributions to this fund may be made by clicking on the 'donations' link in the sidebar of Parker's site, or at any Zion's bank,or by emailing Tammy at: hods5mom[at]aol.com.
We absolutely believe that with the love, prayers, and support of family and friends Parker will be able to overcome his health setbacks and will be a much loved and needed member of our family.
Sincerely,
Reed, Tammy, Bailey, Brant, McCall, Rigel, Kensley, and Parker Hodson.
Parker's current status: He had surgery just two days ago for a bowel obstruction.
If you could keep our Brave Hero in your prayers for his pain to be manageable and that he can heal and return home, that would be so very appreciated.
If you could keep our Brave Hero in your prayers for his pain to be manageable and that he can heal and return home, that would be so very appreciated.
Child of Love
by Ronald S. Cole-Turner
Child of love, our love's expression
loves creation, loved indeed!
Fresh from God, refresh our spirits,
into joy and laughter lead.
