Hold your family close

 

I have to start with these cute pictures from last night.   Wednesday night I took pictures of Jon holding Sarah and Sam coming up and wanting up.  Well last night Jon was holding Sam and you can see who came up to get some Daddy time:)

 

 

There is often a little jealousy in our home:)

 

 

Today has been a "Family Fun Friday"  Jon is off on Fridays so he took the boys to the Y early this morning, came home and they worked on the church lawn with a guy from our church.  I cooked a big Southern lunch, everything made from scratch and then I took the boys to see Monster University while the littles napped/rested.  Selah is doing good and I'm feeling better,  Having gone through so much over the past year, days like today are such a blessing.  I do not take them for granted!

 

We got a letter today from our insurance carrier Blue Cross, saying that they have denied our appeal for Selah to have home health nursing.  We have several more steps to go in the appeal process and I am confident that she will be reinstated for nursing.  In the meanwhile she does have nursing care through Medicaid.  However, we pay our premiums and have for years and years.  Home Health nursing is part of the package deal and we will get it paid for through our insurance.  They approved her for nursing and unfortunately she is no better than when she came home from the hospital.  It's such a pain to have to take the time to do all the paperwork but I've been told by several families this often happens right around the 6 month mark home.  Some families don't fight or some go through Medicaid.  Well we will fight.....   We do not want her as a Medicaid patient as Medicaid does not pay as much to the agency/nursing staff and we want the best nursing for her.  Right now we have experienced and very able nurses, that's how we want to keep it! 

 

To be honest I was NOT very nice when I talked to the Blue Cross agent on the phone....then I had to fax something in.  The fax didn't go through so she called me back and said all she got was a letterhead from Grace Church.....She was probably wondering about that LOL.  I actually apologized for losing my temper with her.  I was a bit ashamed but I did tell her, nothing gets me upset EXCEPT for someone messing with my family!!!   She said she understood and she was a mom.....she seemed apologetic BUT she is the one who signed her name to the denial.....I told her she had to take responsibility....I'd never work somewhere and sign my name to something I disagreed with. 

 

So we will work the appeal process, if that does not work, we will go to the media....this is CRAZY!    I tend to have to fight for my kids, but I usually get what I think they need.  The bad thing is that not all families get what they need for their kids because they don't fight or know how to....it shouldn't be like that!  I do get tired of the fight but I don't stop if I think my kids need something.  It's terrible how so much of your energy as a special needs mom is tied up in fighting for your kids!

Thankfully I've never really had to fight for anything for Steve or Shad, with them things are very different.  I've never even had to get involved in anything at their school, or even meet with the principal or teachers about any real need or problem.  Over the years, if there were issues, I'd just tell them to either obey their teacher or work out their problems with their friends/bullies or whatever.   They really have never had much of a problem over the years...except one time, Steve was in high school and there was another high schooler who was just a total bully and jerk.  Steve is so even keeled always but one day, the boy just got on Steve's last nerve and Steve decked him!  I go to pick them up after school and he tells me about it.  OMGosh....I thought he would be in so much trouble...I ran inside and went to the principal, scared that Steve would be kicked out of the school.  The principal was like "yeah-that boy had it coming, Steve sat him straight"  I waited till I got in the car to laugh....YIKES!  The boy ended up getting kicked out and everyone was glad.  Over the years, that story has grown to mammoth proportions at Steve's school and he has never had an issue with another bully.  LOL   

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If you are following Teresa's story, she is doing ok, for the situation she is in.  She still needs much prayer as she will be on the ECHO until Monday and then another major surgery to see if they can fix the veins to the heart/lungs.  Her kidneys are not doing good. 

 

http://www.facebook.com/l.php?u=http%3A%2F%2Fourplacecalledhome.blogspot.com%2F&h=yAQHX0Uoc 

 

that is their blog link

 

and here is a story about her

 

http://foxbaltimore.com/news/features/top-stories/stories/teresa-bartlinski-struggles-new-heart-after-transplant-20596.shtml#.UcTDdIbiFdQ

 

Just looking at the photo of her and her mom right before surgery tears at my heart.  I know how hard it has been to give Sam over for EYE surgery much less heart surgery!!! 

 

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You never know what a day will hold, LOVE your family....you can't get back one day.  As we go through the summer, my mind goes back DAILY to last summer and how happy and whole our family was.  I feel like we are speeding towards the one year anniversary of the accident and it breaks my heart.  On our way up to NY we stopped first at "Mayberry"  NC  Andy Griffin's home town.  I relive that day over and over....   Then a friend on FB mentioned they were in Berkley WV and I remember stopping there for the night and  eating at a Outback....the manager saw our family and gifted us the meal and gave us some gift cards.  He had a brother with a disability.   Then the next morning we stopped at the Dam overlook and walked the trail.  I had no idea what was ahead for us in just a couple of days.   As we drove into Rochester NY, coming off the toll road, making the circle onto the interstate we saw this HUGE rainbow.... as we were driving up to the RMH we crossed the Erie Canal and someone started singing the Veggie Tale song "Erie Canal" that is now outlawed in my house.  We were so happy, racing towards the worst thing that has ever happened to us.  Looking back, I am shocked I didn't feel a sense of dread....  but no there was nothing in those last few days to warn me of what lay ahead. 

 

Over the summer, several friends of friends had some accidents and I did get afraid something would happen to one of my kids.  I actually talked Steve out of going out of town with a youth group because I did have a weird worried feeling but I didn't' have it on the trip.  In fact, it was all happiness and laughter.  We had a great trip up. 

 

I've never told but a few people this but on the day of the accident, as I was waiting for Jon, I was reading the newspaper.  There was a funeral notice for a cute little boy who had drown just the weekend before.  I prayed for his family sitting in the kitchen of the Ronald McDonald House.  Little did I know MY family was already in the water (looking back and comparing the time)  I literally got up from the table and started talking to the staff about WHY all the ambulances were down the street......unreal....

 

 

So much I do not understand....all I can do is pray for Selah.  Pray that God delivers us from this nightmare!  And it is a nightmare....some mornings I wake up and it still hits me like a punch to my stomach....all the memories come rushing back.   Just going to the movies today, reminded me of taking the kids last summer and how Selah watched Madagascar 3 and ate popcorn.  There was a Russian speaking lion in it and we all loved him.  He kept saying "Nyet" and we'd cheer:)  Oh if we could only go back to last summer.....

 

So today was a happy day, yet waves of sadness still wash over me....

Please pray for Selah and Teresa. 

 

Hold your family close...