Nathan continues to improve and I continue to not be able to stay awake if I get still. Better today and handling the incredible news from yesterday better. We did it, Nathan finally was approved for the correct Medicaid package and his waiver is in action. I nearly have the travel part of the Medicaid handled. I was able to put the call into Growing Minds this morning to get started in September with OT and ABA therapy. What an ordeal and I wish I could share how we got it through but I have no idea. I have Nathan scheduled for OT and PT at the rehab hospital for the month and hopes of a teacher coming to work with him while we are there as well. Waiting to hear back from Webster Co schools to see what we need to do as far as home bound school and therapy and if Nathan needs to attend hospital school this month. I had a glimmer of hope that Nathan would be able to attend the actual school building occasionally but for now that is not in the stars. In addition to home bound school, I have hopes of using some of the waiver grant money to hire an additional teacher to work with him at home. We will have a full schedule between Growing Minds, homeschool and therapy, an additional teacher and travel back and forth to Duke monthly. We will celebrate Shortys Bday and his Make A Wish in September. Nathan wished for a fancy new therapy tricycle and a permanent mount swing system installed in our house. I know that does not seem like much of a wish but these items are very expensive and with the safety gadgets and mats and some other surprises as well. Nathan loves to ride a bike and the swing system will be fun as well as an integral part of his OT and PT. We will almost have a complete gym of activities at home that will lessen the driving load to an appropriate facility in the area. I would rather have my nails pulled out than to try to pack and go to Disney or anywhere extra that involves suitcases or airplanes. We are very blessed at the moment as it seems all the things we have hoped, wished and cried over these past months, all the prayers have been answered. The tumor is lessening, Nathan is ok, the year long process with MAW is happening, we have the insurance issue by the tail and we will be calling KY home. I am overwhelmed by all the positives. Sunday, we will be hitting the highway for another extended stay in NC as they try to unravel what is happening to Nathan, he continues the trial drug and we prepare for the next MRI Sept. 4th. My hope is that this will be the last of the extended trips to NC for the year, the last of the hospitalizations, the last of the scares. Thank you all for your contd thoughts and prayers. I have a basement full of Tshirts to get out when we get home and I will contact you to see if you still want a shirt. I am sooo sorry, everything just started falling apart last fall and continued falling through this whole year so far. That goes for all the many thank you cards that have not been written either or the newspaper thank you that has not been written yet either. Please send up some thank you prayers for all the many good things that are happening for Nathan and I. Everything is so overwhelming that it is paralyzing, the good the bad, all of it. Goal for today is less PJs and catching up on weeks of paperwork that I have been moving from room to room to avoid. XO
Posted on: Tue, 29 Jul 2014 17:31:02 +0000
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