Meet Parker
Parker’s Story
24 hours after his premature birth, our youngest son Parker, was Life Flighted to Primary Childrens Medical Center in Salt Lake City, Utah. Several weeks in the NICU, an emergency surgery to create an ostomy, and long nights of prayer, we finally brought our Brave Hero home. Along with Parker came all kinds of excitement:
- Chronic Lung Disease
- Imperfoate Anus Ostomy Bags
- Tethered Spinal Cord
- Severe Pulmonary Hypertension
- So many meds!
- Oxygen Bottles
Parker’s Down syndrome is the very least of our worries. You can live a long and productive life with an extra chromosome! Your odds of that are greatly reduced when your first pulmonary hypertension values come in at a whopping 117! Especially since normal values are under 25. High pulmonary pressures cause the heart to work so hard that its owners life span is significantly shortened.
Share our journey and see the realities that come with trying to raise a special needs kid in a typical world:
- Insurance companies that fall short of meeting our son’s medical needs.
- The nightmare battling for Medicaid coverage in the state of Utah has become. A state government that professes to put children first while balancing its budget on the backs of its most helpless citizens.
- Homeschooling a child with special needs.
- Building bridges between families of typical children and families of children with special needs.
- And proving that a child with special needs is first and most a child. Just like yours.
Our story is one of great faith, the power of prayer and the love of family.
Some may choose to see sadness and despair. We choose to see a little boy like any other. One from which shines so much joy and determination.
We are amazingly blessed by this Littlest Hero of ours!
Let us share the beauty and potential that lies within ‘different.’
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{ 11 comments… read them below or add one }
When is Parker’s birthday?
Hi Tammy!
Thanks for the comment on my blog
I work for a pediatrician and I see many brave children like Parker on a weekly basis. Healthy children are a challenge, so I know it must be even more challenging with children that have special needs.
This world is so unjust that an innocent baby can be born with a life threatening condition, and yet there are so many people who watse their healthy lives by trying to harm others.
I will be praying for Parker, and I know God is listening, Isaiah 35:5, 6 says he will cure such ones. And while Jesus was on earth he healed and cured people with dissabilities.
And remember God will comfort us if we reach out to him in truth and openness especially through our prayers.
xox
Tanya
Dear Tammy,
Hi. Nice to found this blog of yours. Actually, I’m a mother who is also blessed to have a special-needs kid like yourself.
Hope we can be friends and share this story of Faith of ours
Nice to know you Tammy and surely I will pray for Parker.
:liani:
Hi Tammy – I have a Parker too! He is 3.5 months, has DS, and having OHS on 10/21 to fix a CAVSD. All of this is new for us since we knew none of this until after his arrival, but we know the Lord has a plan. We will be praying for Parker! He is a cutie, but I am biased to Parker’s LOL!
http://www.parkerspurpose.blogspot.com
Lara
My first time checking your blog out after following you on twitter and FB for some time. I have a special needs kiddo (spina bifida & high functioning autism) as well that I homeschool. I will make sure to add you to my reader so I can hear more about your journey as it unfolds
What an incredible story. I am very excited at the opportunity to make a small difference in your family and Parker’s life.
I’m so happy that Parker first came home! It was my first time seeing my little baby brother it was such a wonderful moment for me!
I just found your blog through BlogFrog, and I’m really enjoying reading it. It warms my heart to hear parents explaining that, despite any special needs, your child is always first and foremost YOUR child. I have two boys, and they both have Asperger’s Syndrome, and one has Beckers muscular dystrophy as well. When people ask me how I deal with it, I just say it’s because they are my kids, and I don’t think of them as my kids with special needs, but just as my kids. I love them and who they are.
I think you forgot to add one of Parker’s diagnoses – obscene cuteness! Seriously, what a handsome little guy. Thanks for sharing!
Hi Tammy,
Thank you for your comment on my blog so I could come find yours. What a little trouper you have. And what trials. You are a brave woman! I wish you and your family the best. I’ll have to look around more and read more.
best wishes,
Linda
Thank you for sharing your story.
My precious little Logan is 6 months old tomorrow and we found out today that she may possibly have PPH. She is going for a cath on tuesday to find out if that is the case.
She has an ASD (8mm) which I pray is the cause of her problems as that can be fixed relatively easily.
If you have time, I would really appreciate any advice or information you have on PPH as I really know nothing about it and the research I have done today has scared the life out of me!
I would really like to know what to ask the cardiologist regarding treatment, long term pronosis etc if you have any advice you can offer.
I should also add that Logan having Downs is nothing in comparison to this. In fact, Downs is probably the best thing that ever happened to me, it changed me as a person and I could not love my beautiful little girl any more than I do. Today is the worse day of my life, finding out that Logan was Downs pales in comparison to the news I received today.
Thank you so much.
Angela