Wednesday, December 21, 2011

Christmas Photo Outtakes

It is always quite the adventure to get a family Christmas photo where everyone in the picture is looking their best.  This year, I didn't even attempt to get Paul and I in on the action because I knew it would be hard enough just to get both kids looking at the camera and smiling.   Well, I was right.  We tried on numerous occasions to get the perfect shot and on numerous occasions we got anything but.  However, looking through all of them was quite funny.  We got...
profile shots,
one kid is smiling perfect while the other looks like they are picking their nose shots,
sweet big-sister moment shots,
unwanted (but cute anyway) kissing shots,
admiring my big sister shots,
beeping the nose shots,

"I'm so done" shots,
"Giddy-Up" shots,
"I'm trying to smile big" shots,
"This is so not fun anymore" shots,
"You want to see my belly?" shots,
Popeye shots,

Daddy caught tickling shots,

and "Dad, are you serious?" shots.

 But through it all, we also got some keepers. 

Good thing for digital cameras!!

Friday, December 16, 2011

Keeping the Faith

Our primary insurance covers most of Parker’s health care costs.  However, there are some key components that are left out.  In particular, the nursing services we get are not covered at all.  This is why I was so ecstatic when we found out Parker was eligible for the Katie Beckett program when he got his trach.  This automatically made him eligible to receive Medicaid as a secondary insurance which then allowed us to get nursing services.  Medicaid also picks up when we meet our cap under our primary insurance for therapy services and medical equipment.  Medicaid also covers Parker’s expensive formula. 

Medicaid has been covering these items…until now.  Nebraska, as well as the rest of the country, needs to make some much needed cuts and a lot of these are coming out of programs like Medicare and Medicaid.  Nebraska is planning to cut 21 million dollars from the Medicaid program and in the proposed cuts it looks like nursing is going to be cut drastically.  We don’t yet know what that means for kids like Parker who require 24/7 care.  There are many kids out there that need a much higher level of nursing care than Parker and if they make straight cuts across the board I don’t know what those families will do.  I imagine a lot of people with high medial needs will have to go to more institutionalized settings which I find very sad.  We, of course, will do whatever needs to be done to keep Parker at home.  However, this could mean some very sleep deprived, grouchy parents that desperately need a break.  

I have some calls out to department heads at Health and Human Services to see what impact the proposed cuts will have on kids like Parker but I haven’t heard back from anyone yet.  I’m hoping they will take individual situations into account when making decisions.  Kids with medical issues like Parker may be the minority when they are looking at the big picture but the impact this could have on families like ours is worth considering and in my opinion quite scary. 

In the midst of everything I DO NOT know, I DO know that we have been well taken care of and provided for and God will continue to take care of us.  Every big concern and worry that has plagued me so far in this journey with Parker has always worked out.  God has been enough and will continue to be.  No matter what the outcome, I need to remember that and keep the faith.  

We would appreciate prayers that the government officials will understand the true impact of their decisions in cases like these.  I understand cuts do need to be made and we are more than willing to make cuts and sacrifices just like everyone else but I hope they won’t completely cut care so much that patients and their families will truly suffer.  I would also greatly appreciate prayers that Paul and I will try to remain calm in the midst of all this, that we will remember we are not in control, and to do a better job of taking our worries/frustrations/stress to God.  I will admit, God has undoubtedly taken care of us but it’s not because we are doing a great job of asking for His help.  We are fortunate to have such a loving and merciful God that will protect us and provide for us whether we deserve it or not.

Also, we’d like prayer that Parker will continue to make progress and strides so eventually he will no longer need 24/7 care and this will no longer be an issue.  There are so many other families out there in much more difficult situations than ours.  Their children are much sicker and require much more care.  I pray that those children and families will not be overlooked and that families can remain together in their home as much as possible.  

Thank you all for going along on this journey with us.  We appreciate all of your love and support!