Day 34 Fish Oil Study

Selah is doing good today, no problems.  We did some running around this morning then Jon came over this afternoon.  I came over after supper and as soon as I came in, she woke up & was very aware.  The weekends are slower paced, no therapy except what we do with her.  Her arms were normal when I came in, that was the first thing I checked.  So it doesn't seem like she is having an issues due to a reduction in the Valium.

Today we went and looked at the accident site again.  It just still seems unbelievable this happened....where Jon stopped the stroller, the road looks flat, and then further on the path begins a slight upward hill.  If anything it seems the stroller would have rolled backwards down the path, away from the water.  There is an overpass that I discovered right down from the site, so we looked at it from above and was able to see the tiny tree that Jon hung on to...Someone said to me the accident took 4 seconds to happen, I don't remember who told me that, but I have never forgotten that number, 4 seconds....and your life can change forever! 

We have the van half packed....it seems unreal that we really might be leaving here.  Friday was 18 weeks since we left home....next Saturday will be 4 months since the accident...  We've been here longer than we were home with the girls!  That makes me sad if I dwell on it, I want my sweet life back....I'm tired of all this medical stuff, I just want it all to go away and for us to be home, with no problems.  I want to be getting ready for their first Christmas....playing outside, doing things together with all 7 of us ....  I already had the girls matching Christmas dresses and we had planned where we were going for our first family Christmas picture....none of this was in my plans!  

I'm in a weird frame of mind, not feeling real spiritual, feeling pretty down, worried about the transfer and all the logistics that will go along with it.  Not looking forward to her being flown and us driving and it taking 2 days to get to her.  I'm a Mama that wants her chicks around her!  I will be honest I have trust issues....(yes say all my friends and family)  For me to send my daughter off to strangers is very hard for me.  Thankfully my sis in law will meet her and stay with her until we can get there (thank you Val!!!!!)  

Since Sam was born and I had to fight  the NICU doctor (who btw no longer has a license to practice medicine...scary!!)  I've been suspicious of doctors and nurses I don't know...  I've seen too much since having Sam so this is like my worst nightmare for my child to be in a hospital without me.  In my opinion & experience , Florida health care for children is not the greatest and we 've seen quite a bit of it and in various hospitals....  we are spoiled here!  Strong's Hospital here in Rochester is amazing, just for the fact we've been here so long and I've not had to yell at anyone!!   I usually never made it through an emergency room without having to get crazy with someone LOL   I never tell anyone I'm a pastor's wife if they don't already know LOL.....  So my experiences have made me very defensive, maybe I'll be proven wrong, I hope so!   But what I am expecting is to have to fight to get her days in rehab and then more fighting to get her the services she needs at home.  Here it's not been like that, it's been a team effort.  We noticed the difference when we brought Sam here for his eyes compared to the eye hospital we took him to in Miami.  The one in Miami is supposed to be the top one overall for eye care and patient satisfaction in the US!  Well they never asked us!   What a wonderful difference when we came here 5 years ago, it was refreshing, so different!   Now this experience has shown us even more how wonderful the health care is here.  I know some may suggest for us to move here, and we had thought about it when Sam first got his eye implants but we have too many ties in Florida, our church, Jon's job, too much change for our family unless we knew that was where God wanted us.  But I know I will always compare other health care to this and try to "encourage" other health care providers to bring themselves up to par!  And by "encourage" I mean they won't know I'm a pastor's wife....hahahahaha!  I do want to say I've found some great doctors in Florida , our pediatrician is perfect, very balanced and caring and his staff is great, so helpful always to our family.  I wouldnt' trade them for anything and we have a great neurologist too but I've found most specialists and hospitals not to be quite so good in Florida. 

I guess knowing some of what lies ahead for us, makes me more apprehensive about the future.  When Sam was born I just thought I had got a "bad apple " to work with in the NICU who was rude and patronizing to me, refusing to listen to me until I went "Madea" on him (for all the Madea fans out there you know what i mean!)  And even after knowing he was dead wrong about my child's eyes, he still fought me on every point until I was able to get Sam out of the hospital.  I thought then things would get better ....oh foolish me.... I have fought for every single thing and every single medical procedure....   It's true I'm older & wiser now and "I've been there , done that" and know what to do but it is no fun.   My years of working for the Department has done me well, I can focus and not get too emotional and I do get the job done but you just get tired of the fight.  With Sam medically, he is at a different point in his life, he hasn't been in the hospital for years except for the accident and I was ok with the services he was getting and knew it wouldn't be that much harder to get the girls the same services and see the specialists they needed but now....it's a new ball game....

Anyhow let me shut up and quit whining....sorry I don't do it much but I needed to write about how I'm feeling and that is just how I'm feeling right now!

We are not looking forward to saying goodbye to folks who have become close friends to us during this time and folks who take care of our girl, like she was their own child.  Monday will be a rough day for us.  I've told Jon he can't get too emotional, as he is quite emotional, where I try and push in all in....but we will both be a mess.  Thankfully we will still be coming up here for Sam's eye check ups yearly and will be up in the summer.  We believe that Selah will be able to come with us and have her evaluation at the year mark for the study she was originally in, the cooling sheets.  So at least I can repeat that over and over that we will see them soon.....

So pray for us, pray everything goes smoothly.  I'm a bit anxious about the whole long trip thing, and my imagination can run a bit wild with worry.... as much as I worry about the road trip, I worry about Selah being flown there....pray that God will protect all of us.   Pray that Selah will have an amazing improvement by Monday.  I'd love to leave here with on a really high note, for ourselves and for the staff who have worked so hard with Selah!  Because of all the circumstances, we have been here far longer than most would in our situation and we've had folks who have just put so much into Selah!  Dr Asslin, our OT Megan, our ST Meredith, several of the nurses, Kate, Noor, Lindsey,  along with others.....  it will be hard to say goodbye!