Greetings All,
Struggles-
Being the parents of a child with such involved and long-term medical needs is not easy. I must say now that we are coming close to Jaden’s first birthday, I feel as if I am only beginning to grasp that Hydrocephalus will always be in our life. The words, no cure are quite staggering. Jaden is recovering from RSV (respiratory syncytial virus) and a double ear infection. As I try to look into his future, I see so much unknown. So much is yet to be discovered with Jaden. Yet I find so much will power in someone who has such an old soul.
Insurance-
If it’s not one thing it’s another. Because we are a two income family, and Roy works for a State agency- who contributes 60% monthly to our insurance plan, we are unable to apply for CHP+. Regardless of the fact that we qualify on income and all other guidelines and of course because we do have two incomes, Medicaid is out of the question. In just one year with Jaden’s medical bills, we have spent out-of-pocket $9,000+. I am very grateful for the $100,000 insurance has paid. However, it feels like a financial gerbil ball- we keep rolling and the debit keeps coming. Given the lifetime diagnosis of Jaden’s medical condition, I fear a life full of the stress of the last year.
The Trip-
We will be in Denver for follow-up appointments in March. Jaden will see his Neurosurgeon, Neurologist, and Muscle Rehabilitation Specialist and will also be going to the Anchor Center for the Blind. I am feeling nervous about what kind of new information we will find. Also interested to find out more about Botox treatments for his arm’s rehab from the stroke- this is where the nerves start for me- it’s an injection.... more pain. We’ll see what comes of it. I am also excited to visit the Anchor Center. I believe this is a great place for us to learn more about Jaden’s vision impairment. I will post their website.
The Positive-
The latest up sides include Jaden rolling from his tummy to his back for the first time today (2-23-11) and he has become an unsupported sitter (most of the timeJ). Jaden got approved for a custom hand brace through his PT! I am excited to have our weekly session and see how it fits! We hope it improves his ability to open and close his right hand with time. We are also excited to attend the 2011 Hydro walk in Denver this year. I hope it is a place to learn, share and network with so many devoted and inspirational people.
I will update in March after we make our Denver trip.
Please have a look at the websites I have shared with you.
Love and Health,
Jaden’s Mommy
Great information page provides great links to other wonderful pages with related information.
The out of pocket expenses for these conditions are ongoing and enormous! Parents blessed with fully healthy kids have no idea and can be smugly ignorant of the financial hardships parents like you face. Even with insurance! But look at that smile on Jaden's face. Priceless. Hang in there, you guys; you're not alone.
ReplyDeleteWow, Sister. I absolutly LOVE how you "focus" on the positive. This is not an easy thing to do for a parent in your shoes, but how important it is, and how easily it must be to get discouraged in your fight.---- So many worries, but for you to look this head-on and to choose to look at the reality takes so much courage and I am so PROUD of you and PROUD that you are my sister. You have been through hardship and struggle, and I am here to encourge you and Roy and Micah and baby Jaden through this. ------This is such a big, enormous deal most parents with 'healthy' kids can't even begin to understand. You are so strong and such an adovocate and strong willed fighter for your famliy and, of course, little Jaden. We love Jaden for who he is and we love you, Christy, for who you are, my sister, the one that did not know about for most of my life, but now that do, I have grown to love and respect you.....
ReplyDeleteHang Tough, Mother Trucker
Mindy