Ups and downs....

Well first the GREAT news.......the OT said Selah is on the brink of making cooing noises like a baby.... she also said Selah understands that the OT is there to work with her and shows it in her body language that she doesn't like that!   She pulls away from her as soon as the OT starts talking to her!!   So that means she is not responding just from pain but from the anticipation of pain!!!  It means she is thinking!!!!!    Also yesterday she moved JUST one arm at a time! That is a big deal!!!!!"  She has a long way to go, she is not constant with her responses and there are big gaps in what she should be doing but every week we see some improvement.  Please keep praying for her

Just today we had a friend and an unknown writer to the blog send us the same article about Fish Oil and how it can help brain injuries!  We are taking the article  to the hospital tomorrow and have some hope,


http://www.cnn.com/2012/10/19/health/fish-oil-brain-injuries/index.html?hpt=us_c2&fb_source=message

This afternoon we took the kids to the Strong's Museum again.  They had a great time

We got news from Lakeland Regional Medical Center.  They refused to take Selah as a patient.  Their reason this time was that there was the possibility of her getting sicker and may need to be transferred because they don't have the specialists for her care.  The doctors and staff here at Strong's in Rochester are "amazed" with the problems we have had in getting her into a hospital in Florida!   Strong's Hospital  sees her as "disabled" but "stable"   Last week I spoke to an administrator at LRMC who first said that Selah was too sick for LRMC since she was on a vent.  I stopped her and told her that Selah hadn't been on a vent for weeks, and asked if she had truly reviewed Selah's records.  Then she told me that since Selah wasn't on a vent, just a trach that she should just go to a nursing home.  As you can imagine, the conversation went downhill from there!!

This Monday I called the CEO's office and said I wanted them to reconsider her as a patient since I didn't not believe or really understand what I was told the previous week by the administrator who couldn't tell if she was too sick or not sick enough for her to go to LRMC!  So they had a meeting today and came up with this reason...that she could get sicker and have to be transferred.....REALLY? 

The team here had felt that the medical staff of LRMC was very open to Selah coming to them, but then it seemed administratively , things changed.....  I know for a fact that LRMC take kids on trachs and g-tubes...

LRMC has been a good hospital for our family.  Sam was born there and has been hospitalized there probably at least 10 times.  There were a couple of times when he was too ill or unstable for him to stay there and had to be transferred out.  I understand that LRMC is not a hospital where they have many different pediatric specialists.  We certainly wouldn't have asked for Selah to have been transferred immediately following the accident but it's been 10 weeks..... However, Selah is stable enough that IF we lived in NY, Strong's would have already transitioned us to home and Jon and I would be taking care of her.  Somehow I think LRMC is a little more qualified than we are!  The reason we have to have her transferred to a hospital in Florida is that she will be air transported to Florida and we have to make sure that she stays stable following the trip.  Also WE need her to be in a hospital situation for 2-3 weeks as we get our home ready for her and nursing care set up.  Plus you factor in the fact we've been away from home for 10 weeks now and will need to do alot of things to get back to normal.  We wanted her to be in LRMC for many reasons, we know the doctors and nursing staff, the hospital is very clean and secure, it's only 20 minutes from our home, close to family and friends who can visit and/of watch our kids while we are with Selah...but nothing seemed to matter.  LRMC does not seem like a very "hospitable hospital"  to us right now.  I would have thought that they would have wanted to help our family out but that does not seem to be the case.  I am very disappointed in them. 

I actually looked at a pediatric nursing home about 2 hours away from us, they don't have an opening nor are they set up for patients that would only be there for a few weeks, they are a long term facility.  Then I began researching pediatric nursing homes in Florida and found that the Department of Justice (DOJ) is investigating all of the pediatric nursing homes in Florida for several reasons and the main one, is that families say their children go into the nursing homes and then the nursing homes will not let them go home!  The nursing homes get so much money for the children and don't want them to go home!  So nursing homes are NOT something we are planning to do!

So the team here is looking at a Tampa hospital  for Selah.  It will be much harder for us to visit her on a daily basis.  We want the best for our child, which is to get her home but we need somewhere for her to go before that can happen.  Please pray that this situation will be worked out.  Also when we get home, we have to make decisions about what we are going to do about our home.  We can move the boys out of their room into the living room for the short term but we will either have to add to our home or move.  We may look at buying/building a home since we live in the church's parsonage which is not our personal home.  So putting thousands of dollars into it to change things for her might not be the best idea.  We've thought of several things but right now we just need to get home, set things up for the short term, then we can get her home! 

So roller coaster day....but honestly we are so encouraged by Selah's responses and progress that nothing else matters.