PA RESIDENTS.....PLEASE HELP US PUSH BACK

Hello Everyone,

I would like to share with you something I feel passionate about and feel something needs to be done.  What I'm about to share with you not only affects my family and puts us in a bad spot, but also affects many of our friends who also have children with disabilities.  Just when we thought we could start moving forward to try to get out of debt, we now have new unexpected expenses.

The PA Department of Public Welfare (PADPW) just imposed copays on all services for children and people with disabilities if you are over the poverty level.  Isaiah currently receives medical assistance for his nursing, medical supplies, medications, therapies, etc.  For most families, Medical Assistance kicks in after the family's primary insurance pays their part.

These new copays can add up rather quickly for children dealing with disabilities.  The PADPW did put a cap on the max amount each family can be charged each month.  However, it is set to 5% of the families monthly income, which adds up to a few hundred dollars (a car payment) each month that these families now have to pay.  This does not take into consideration the fact that these same families already pay for Insurance Premiums from each paycheck for their primary insurance.  The purpose of Medical Assistance is to help families dealing with disabilities cover the medical costs that are not covered by their primary insurance.   Now the government wants these families to pay more to help balance the state budget.

http://www.phlp.org/state-budget-alert-copay

Please help us push back to get this bill over-turned.  There are other ways to balance the budget without hurting families that are already dealing with added expenses and stressful situations.

The links below are Letter Templates you can use to send to the Governor and your Local Senator and Representative.

Letters:
PA Senator
https://docs.google.com/file/d/0B06GM2qruw_dQ1BvcVowYkwtdVU/edit?pli=1

PA Representative
https://docs.google.com/file/d/0B06GM2qruw_dY2pjVGp3M2Q4RVk/edit

PA Governor
https://docs.google.com/file/d/0B06GM2qruw_demdqdkRoWTN5Vm8/edit

Once you click on the link, a new window will open showing you the template.
Click on "File" and then "Download" and save it to your desktop. 
Add your name and address and change your local Representative and Senator.
Print, Sign and Mail.

If you need to look up your Local Representative or Senator, please use the following link.

http://www.legis.state.pa.us/cfdocs/legis/home/findyourlegislator/#county

Thank you for helping us fight back as we continue to try to protect our family as well as other families dealing with children with special needs.

Chris Miller

"I'M FREE!!! I'M FREE!!!"

These are the words Isaiah said the day the nurses removed the PICC line from his right arm.  The PICC was the last of the IVs that kept Isaiah connected and tied down to a pole.  He went running down the hallway, with his arms up in the air, yelling, "I'm free!  I'm free!"  He was all excited that he was finally disconnected from everything.  He had been attached to some form of IV, life support, monitoring device, etc. for 3 months.  He had all the staff laughing at his very expressive statement.  On the day of his discharge, he received many hugs and kisses good-bye.  They all said he would be greatly missed.  I know he already misses all his "girlfriends" and his "buddies".  He is such a lover!

We finally made it home this past Monday--Praise the Lord!!!  It has been overwhelming trying to get back into the swing of things without the additional help and support from CHOP personnel and the PRMH.  Thank you to everyone that helped us out while we were down in Philly.  We could not have survived without your generosity and sacrifice of time.  We are also so grateful to the people from our church, Calvary of Souderton, that came and cleaned our home as well as provided food and gifts for all of us as they welcomed us home.  We also had a friend of my aunt's help clean and make our home more livable, for which we are grateful.  We cannot thank those of you enough for the provided meals.  We still have a lot to get adjusted to, but in a few more weeks, hopefully, we will have some semblance of order reestablished.

Few things that we need prayer for:
1. Our home insurance did NOT cover for new flooring to be put in--they paid for only a partial replacement  of one room.
2. The boys and I are really suffering from our allergies to the mold in our carpets.  We are back on Albuterol inhalers for the time being.  Please pray that we won't have worsening of our symptoms or become more ill.
3. We still are waiting to hear if we received the grant for financial aid to help cover all the costs we've accrued over the past 4 months as well as new flooring.  I am still out of work until Isaiah and our home-life stabilizes.

Thank you for supporting us on this journey.  Isaiah is here because of the faithful prayers of many and his story continues to be told world-wide because of your faithfulness in spreading the awesome power and goodness of God.

COMING HOME...

Believe or not, there is talk for Isaiah to return home this Monday!!!  I can't believe it--he hasn't been home in 4 months!  I'm not sure how we will adjust to being a family again after so long!  We have a lot to get done in the house before he gets home.  Thankfully, Isaiah has been in good spirits and is charming the socks off of all the nurses, doctors, therapists, and all other staff members.  I know they will miss him when he leaves.

Please pray for the following for us:
1. Approval for Home Care Nursing--we are trying to get back our 96 hours we had prior to Isaiah's hospitalization.
2. Healing of a sore at the base of Isaiah's spine.
3. That we get approval for a grant that will help replace the flooring in our home--because Isaiah threw up for 2 years, there is significant mold growth in the carpets.  We had a professional come out and evaluate our floors.  Until we can replace the carpets, we are going to do a cleaning that will hold us over until then.  Pray that the boys and I won't have too many reactions to the mold.
4. That we will adjust smoothly back to being a family.  It has been a long time since we have lived in the same house at the same time.

A Few Requests:
1. If any of you have time, we could use the help in getting our home cleaned this weekend before Isaiah comes home.  Please let me know.
2. Also, meals would be fantastic!  We do have a large freezer to store them.  Until we get a routine reestablished, meals help relieve a huge load off of our shoulders. 

Thank you again for all your prayers and support!  We truly could not have made it this far without your love and strength! 

WITH HEAVY HEARTS...

We ask for you to pray for our family and our extended families as we lost two grandparents this past week. Grandpa Sylvio Bettio passed away on August 27, 2012.  He is the father of my Aunt Linda Emr, my dad's sister-in-law.  On August 29, 2012, my Grandma Roberta Emr also passed away.  She was my dad's mom. Both families, the Bettios and Emrs, are struggling with the losses as well as all the friends and extended families whose lives were touched by these two people.  We love them and will miss them.  They will always be apart of our lives and their memories will live on in our hearts.  Thank you for all your love, support, and prayers.