Brisan and Parker Stults | Living with Niemann-Pick Type C

This past week has been very good minus one situation (get to that a little later). Brisan is doing wonderful. They came out Wednesday to adjust his chair since he has grown from when he received it last year. They had brought back his cover for the back of his chair but the zipper broke :(. So they have it on rush delivery to get fixed. He also received his “big boy chair” to use in the kitchen. That should be a bit more comfortable sitting at the kitchen table. Overall he has been in a good mood. Such a great mood that last Saturday he pooped all over our bed :). There still are concerns over his right eye and his ability to see out of it.

Parker has been in a great mood as well. He has really enjoyed school and went on his first field trip Tuesday (pumpkin patch). Today he had physical therapy and afterwards did some water therapy. Jennifer said he absolutely loved it!

Duncan is being a cutie and just saying funny 2 year old things. He has shown a lot of interest in baseball or any sport with a ball. Too bad that daylight is shrinking this time of year! He will start school at the end of January.

Now for the news we received last Friday (10-15). Jennifer was at Target getting refills on some of the boys' medications and they said Humana came back illegible. So she called me then I called Humana. The customer service agent stated that “my company” (no, not my company…my old company) canceled the plan. I knew they had recently closed their doors but did not put 2 + 2 together. The shocking part was we were not even informed of the irresponsible decisions of my old company. Looking back now we are thankful they kept open for as long as they did. Knowing what we know now we could have been out of insurance much quicker.

Some of you are wondering why we were on my “old company's” health insurance. I was laid off in July 2009. That prompted us to pay for COBRA.  It's not the best payment in the world but Obama's subsidy made it more affordable. At that time the best option was to keep our current insurance as we were familiar with it, we had met our deductible, and it was a plan that was generous in some areas verses others.

I do currently work but I am 1099 and my current company doesn't offer health insurance.  We are a small company of 4. I took my current position based upon factors such as flexibility, income, and the opportunity to work from home. It is never as easy to find a suitable position with our families circumstances.

We were planning on riding COBRA until the end of the year and then in January start a new plan. Our goal was to participate in an individual family plan with Humana One based upon the new law of insurers not able to deny coverage for kiddos with pre-existing conditions. They offer a very similar plan as our group one. That went into effect at the end of September. Humana is choosing to do open enrollment based upon each state and has not informed their customer service/ sales people of when Missouri will be eligible. The saga continues.

Brisan and Parker both do have MO Healthnet (Medicaid). It is designed to be a supplemental insurance. We've had some issues this year and it predominately helps pay for our in home health aide who helps us out during the week. It is wonderful although we would rather not have Medicaid as their only insurance. It has limitations and oh yeah…it is government ran so that already spells issues.  Don't get me wrong, I have no real big issue with our government but they are slow and painful to learn the “ropes”.  I am glad we have something for them.

That leaves myself, Jennifer, and Duncan with nadda. It would be ideal if we all could be on one insurance plan but the likelihood of that happening is slim to none at this point. We have a lot of decisions and information to sort through on what will be best for our family. I know we will make it just like every other family out there will. More importantly we need to try our hardest to focus on God's love and grace. He ultimately has the right answer so we need to seek him for the right outcome.

Thank you for reading our update! Please keep us in your prayers.