Petrified

When Kyle was born we had no idea or concept what care would be involved in taking care of our guy. After 2 years of life he maxed out of our private health insurance. At the time I was scared and mortified....if he had already maxed out what would we do without insurance? Luckily our drs helped point out the way and I quickly got Kyle signed up with our state insurance. For 5 years I have had to have everything done perfectly or Kyle is in jeopardy of losing his insurance- twice a year I have to provide over 50 pages of documentation to show why Kyle needs his insurance and his nurses. When we went to Disney for Kyle's MAW trip we had a scheduled conference call with the state for his yearly phone review, 2 weeks before we left I called the state and told them where we would be. They said oh no problem we will reschedule you for the next week. Great, awesome right?! Yah not so much, so and so didn't put it in the computer and we came home to Kyle having no health insurance. It took 4 days for the state to realize their mistake and correct it, 4 days in our world with no insurance is beyond expensive. This is only one example of what happens in the works of state insurance. Even with all the headaches and chasing my tail I stayed so grateful...even with all the extras they don't cover I still kept thanking god every day for the help. We would honestly be homeless if we did not get this assistance. So 2 weeks ago I received a phone call from the State telling me that after reviewing Kyle's chart they wanted to offer us more nursing hours. They were shocked at the amount we used with the level of care needed to care for our guy. I'm not ashamed to admit that I sobbed on the phone. Kyle has not slept thru the night in 15 months. He is up multiple times a night requiring IV meds and other comforts. I don't complain about it but I'm exhausted. I'm fading. On top of that after 7 years I want to hold and comfort my baby, not hold him down and continue to always be doing painful things to him. So the thought of some additional help blew my mind. Five hours later I receive a second phone call saying...ooops. Wow, we made a mistake..because your husband has a job Kyle only qualifies for a program that has a cap on nursing hours, in fact because of this you will max out his nursing hours in five months. If you max out he will lose ALL of his insurance for the rest of his calendar year. Kyle qualifies for unlimited nursing hours but because M works we can't get that insurance (although if he quit or was fired our whole family would qualify). Shocked, worried, sad. The state had the nerve to say to me...the only thing that saved you last year was your son was extremely sick and in the hospital most of the year. We are being punished for keeping Kyle at home with us. We are making ourselves sick with exhaustion chasing our tails to keep our guy where he wants to be in cooperation and with full support of his palliative care drs and we are being punished for that. Punished because M works his tail off. They tell us there is nothing we can do because it's a federally mandated program. We have no idea what the next steps are. How can a child qualify for one thing and be punished because his parents are trying to take great care of him. XO k

Now what?

There is so much to post, so much to update yet I'm so focused on something I'm finding it hard to deal with much else.  For over 7 years we have fought for our Kyle.  For 7 years there has always been a next step....a new hope...another dream.  Right now we are living in the land of no new steps. No other options....  When we got home from Kyle's Make A Wish it was the first time in over 7 years that there was no next step for me to focus on, no next step to hope for.  It was the first time I had to force myself to realize and deal with the fact that this is our life...there is no miracle cure out there for our sweet boy.  I can say I didn't handle our first week home well, I felt so out of sorts and incredibly sad.  We are maintaining our sweet boy and that is not a good feeling for me.  I'm trying to take it a day at a time, trying to not focus on the future but instead focus on and be grateful for today...for the most part that's working for me but there are moments where all this just seems like to much...to painful.  I so desperately want to fix this..

Our Make A Wish trip was wonderful, to have our family all in the same place for a week of fun was priceless...Give Kids the World which was the resort we stayed at was beyond amazing..they treated all 3 kids like little heroes and that was great for all of them.  I'm  pretty sure the fact that they had a pool that Kyle could walk into was one of our guy's favorite things on the trip  I know that swimming is one of the things that Kyle misses the most.  It was beautiful to watch his sweet face when he walked into the pool...priceless.

<3

If anyone is interested in the Team Kyle Energy Armor bands...please email my girls at teamkyle2004@gmail.com  We need your size and shipping info  <3  thank you EA for this incredible gift...your hearts are beyond anything I could describe....
To see pictures of the bands you can check out Kyle's fb page...  www.facebook.com/livinglifefortoday 

Thank you for loving us.  I know it's not always easy but for those of you still sticking around...thank you.