The Clanton Family Heads Back To Florida

The Clanton Family Heads Back To Florida

You can watch a news show done today

Day 37 fish Oil Study...on the way to Florida

This was a very emotional day for us, a day of good-byes to some wonderful people who have walked with us through our darkest days.....

We started the morning saying goodbye to Selah's therapist, Megan.  She was such an encouragement to us and helped us to understand Selah better.

Then we said good bye to some of our RMH families, some more staff, our doctor, social workers and a minister friend and his family....

We waited for the transport team to get there and once they were there, things moved fast!  I literally had to fight a panic attack when they first walked in.  It was hard for me to entrust her to some one's care to go all the way to Florida on a small plane!  The team put us at ease immediately and we could tell they really cared about their patients.  We walked down with her and that was so emotional for me, I just sobbed the whole way.  We happened to go down in the same elevator she was taken up to the PICU on , almost 18 weeks ago.  Then we went out the ambulance bay where I had stood waiting to go in to the ER on the awful day (actually where I tried to climb over a cop to get into the ER, if we are to be factual!!  LOL)  It was snowing...and I couldn't help but contrast the days....   We went back up and so many folks were coming up to us to wish us well, it was hard to control my emotions!

 

 

 

 

 

 

 

 

Then we went over to the RMH and did a news conference with all the news stations of the Rochester area.  It still surprises me how much interest and concern the Rochester community has shown to Selah and to us! 

 

We had so much stuff that the RMH offered to ship some for us but our van is packed to the gills:)  We only made it to Lewisburg Penn tonight as we are just exhausted and a bit overwhelmed.  We hope to do really good tomorrow and maybe even make it to Jax....well we can hope can't we LOL! 

 

The transport team was awesome and kept us up to date as to where they were.  Selah had absolutely no issues on the trip and even slept some:)  She touched down about 6:30 pm and is now resting comfortably at the rehab with her Aunt Valerie by her side!  Thank God for Valerie being able to take off work and come up and stay with her until we can get there.  It gives us a great peace of mind knowing she has someone who loves her with her! 

 

 

Thank you all for your prayers and please continue to pray for us that we have safe travels the rest of the 880 miles (according to my son) until we get to Jax.  Tomorrow will be a big day for Selah as she will be evaluated by various therapist, please pray that they will understand who Selah was and is and that God will give them a special love for this little girl and that they will want to fight with us to bring her all the way back!  My sister in law is impressed with the rehab and feels good about it so far and that has helped me too.  They seem to be understanding about Selah and all her complex issues she had even before the accident.  Pray that that will continue. 

 

And I just have to say thank you one more time to Strong's hospital and staff, we will be forever grateful for the wonderful care that our daughter was given.  What a great hospital and it is great because it is staffed with great people!!!

 

Thank you to the Ronald McDonald House, that truly was our "home away from home"  We grew to love the staff, Carol, the director, Lori, Patty, Kathy, Cher, Bonnie, Gail, Jack Amy, Deb, and all the volunteers....we had so many kindnesses shown to us.....  There are just not words to say how much they all mean to us!  If you live in the Rochester area, get involved with the RMH, it is a wonderful help to so many families!  They truly live their mission statement!  Volunteer, donate, promote, what ever you can do to help them!  They work with so many families and give them HOPE! 

 

Thank you ROCHESTER NY  for all the love and concern you all showed to our family.  Rochester is an amazing community!!

 

And always we will never forget the ones who helped rescue  our children.....

 

We are so grateful....

 

Day 36 Fish Oil Study

Jon couldn't sleep so he got up and got over to the hospital at 7 am this morning.  He put Selah's "talking nose" on and she wore it for 5 hours with no issues!  She had PT, OT and ST with the nose on and they worked her out!  She has been very aware today and did great in therapy.  We are so proud of her hard work!

Our poor social worker is getting all the details done for her transfer tomorrow, lots of details.    It looks like she will-be leaving between 11 am - 1 pm.  An Air Ambulance is coming in for her, with a nurse and a respiratory therapist on board.  It is going to be a very small 2 engine plane....please pray for her flight!  I am a nervous flyer and am certainly nervous about my child flying.....

We will wait to leave until she leaves....we want to make sure that is actually on her way before we leave.

She has collected quite a few stuffed animals and I just found out she can only have one small bag to go with her!  We were hoping that we could send most of her things with her but it doesn't look like that will happen!  So we are packing up her room.  We are going to look like the Beverly Hillbilly's leaving for Florida! 

Please keep her and us in your prayers tomorrow.  Thank you so much!

Day 35 Fish Oil Study

Jon stayed with Selah while I cleaned and repacked everything.  she had a fantastic day!  He worked with her with her new "nose" and she did terrific, he was able to keep it on for 25 minutes each time.  The nurse thought he could just leave it on while he was in the room but he went by what the speech therapist had said, so it wouldn't wear her out since it takes much more effort.  She seemed "more awake" today.  Jon thought it might be because of the smaller dosage of Valium as well as having to be more aware of her breathing.  He said she was moving her head at every sound and trying to figure out what was going on.  He also had her up in her chair for about 2 hours and worked with her on the side of the bed, sitting and holding her head up.  He worked her today!  Her arms stayed relaxed so that is a relief!

Tonight we went to the Genesee Country Village and had a Christmas tour of the village thanks to some friends!  It was interesting, especially the church.  The tour told the story of Christmas back in the 1840s...very interesting but very cold and rainy!  Made me thankful for the modern conveniences such as lights and heat!  LOL  When we got back to the main hall, Steve was afraid I was going to catch my butt on fire I was standing so close to the fireplace!  It took me an hour to warm up!

Tomorrow we get all our info about the transfer and say alot of good byes.....we are going to miss so many people.....   It stills seems unbelievable that we are actually leaving....  We thought we were so many different times but we were never ready before to leave.  Looking back it is obvious why we were supposed to stay, Selah couldn't have been in the Fish Oil Study if we had left and gone home.  We never wanted to leave and I think some staff thought that was odd but we just didn't have a peace, there was too much "up in the air" about Selah and we had no assurance that anywhere we could go, could do as much for her as they could here at Strongs!  Of course nothing worked out for us to leave and while it was frustrating not to have hospitals to work with us, we also were always a bit relieved when things didn't work out!  Our poor social worker here should get merit pay for all the work he has put into this transfer!  We are so thankful she is at a place neurologically that she is eligible for a rehab facility and not a hospital! 

Sorry this is short but we are having internet issues.....

So again I ask for prayer for this transfer and prayer for safety....and peace.... and no snow on Tuesday!!!!

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!

Sweet girl Selah Johannah

 

 

Selah is sleeping peacefully tonight.  I just have to update about her arms/hands and my concern that maybe dropping one of her Valium doses was making her stiff.  Right before her 9pm Valium dose she was as relaxed as she could possibly be and her nurse, our dear Lindsey, said it would seem that if she was having issues from the decrease of Valium, it would show up when it was the lowest in her body.  So now I'm not so worried about the stiffness in her arms.  It seems to be more of a reaction to her day along with the fact she tended to carry herself stiffly before the accident! 

 

I read over some of the blog posts from the accident.  I could only get through about four and then had to stop.  It was too intense for me to remember....what an awful time BUT thank you all who wrote on my blog!  I have to admit at the time I was beyond overwhelmed by phone calls, texts, visits, emails, FB messages, and I just skimmed through the comments as I moderated them.  Looking back there were so many sweet messages!  Thank you all I'm glad I can look at them now!

 

I know I missed some messages from those days and I still have about 200 friend requests to look at on FB.  I don't usually add someone unless I know them in real life.  But I do appreciate how everyone reached out to us!  WOW, please know that it meant so much to us to be wrapped in love and each message was like a soft blanket wrapping around our hearts. 

 

I found it very hard to talk on the phone and wouldn't even touch it if it rang unless it was my husband or son.  It's like I had a phobia.  I still find it taxing to talk on the phone.  LOL  when I was a teenager I lived on the phone!  I've gotten away from talking on the phone over the years and now it's hard for me for very long.  Who would have ever thought that?  What a time those first few weeks was!  Thank God for his Grace and you all for your love!

 

Tonight because I was worried I couldn't leave even after she was asleep so I've been thinking about everything

When we were thinking of names for Selah, we of course was going to keep it a "S" name to match all the other kids.  Also all our kids have a "J" name for their middle name so we had to have two girl's names that sounded good together.   We only wanted to use a bible name and we didn't like any of the names we could think of...then we thought of the group Selah, a christian group. so we tried it out and liked it.  We actually had no idea anyone had used it for a name before but since we have heard of a few girls with that name.  Selah is used in the Psalms, it is usually used after a portion of scripture.  It is believed to mean "to pause & reflect on what was said or on the goodness of God"  Just as Sarah Joy was named correctly for all the joy she has, Selah was named correctly for how her life has caused us to pause and reflect on God!  Selah's middle name is Johannah.  She is somewhat named after Jon's mom Joanna but with a little difference to it.  I've always loved the story of Hannah in the bible who prays and God gives her a child, Samuel, so we combined Joanna with Hannah and loved the name for what it meant to us.  We actually pronounce Selah as "SAY`La"  there was a bit of controversy over the pronunciation!  LOL  Jon won, he says it is how to pronounce it in Hebrew....who knows....that word has always been debated in its' meaning and pronunciation!

 

We always took very serious naming our kids.  Each name meant something special to us and all of the children's first and middle names are from the bible.  Stephen Joseph, named after the first martyr and the father of Jesus as well as it is Jon's dad's name too-Joe!  Samuel Jonathan named after the prophet Samuel and Jonathan after his dad.  Shadrach James my FAVORITE bible story of the 3 Hebrew children and James after my husband's best friend who happens to also be his brother!  Sarah Joy, Love the name Sarah, the wife of Abraham and LOVE the name JOY!   So names are very important to us.  And yes we have a few names waiting.....who knows what God has in store for us?  

 

So we didn't know we were going to adopt Selah until about a month before we left for Ukraine.  We were originally planning on adopting a little blind boy.  He got adopted by another family and we were given Selah's picture and info.  I can remember when I first saw her picture, I thought she was a cutie, even in old clothes.  We grew to love her so quickly and wanted to protect her and give her a family.  When the accident first happened, I thought if we hadn't adopted her, she'd have never gone through all of this and that thought just tormented my mind.  But then I was able to focus on the weeks we had had to give her love and show her what a family was....now in spite of all she has gone through I know it was the best thing for her to have a family. 

 

 An accident or sudden illness can happen to anyone at anytime....I'm so glad she has our love and will never be alone no matter what lies ahead for her or for us.  She is a special little girl, everyone who works with her just falls in love with her and her story.  We will never know all that she has endured in her short life, but I am sure it is much worse than most of you who are reading this have ever endured.  Knowing just a part of it, is hard for me to think about....  but God never forgot this little girl forgotten by the world.  She was not listed on any ministry sites, no one knew she existed, but God did....and He arranged things or allowed things to happen in such a way that she came to our family.  My theology usually looks at things as they just happened, God knows but He chooses not to intervene..., the will of man  ( I am quite the armenist)  BUT when it comes to orphans, I  can promise you the God of this Universe seems to intervene in miraculous ways...  I believe God brought us this little girl.  Even though the path ahead was rocky, He brought this little funny,, very different person into our lives.  And we are grateful....

 

Selah has caused me to cry more tears than I think I ever shed in my life.  Her medical situation caused my heart to feel broken in two but I wouldn't trade her, even knowing this was to come, for anything!  I marvel at who she is and how this little unknown orphan girl has changed my life, my family and the thousands who have come to hear her story.  She was only unknown to the world, never to God. 

 

 

 

 

 

Day 33 Fish Oil Study

We are actually really starting to say good bye to staff at RMH and the hospital....it seems unbelievable that we actually may be going to Florida on Tuesday.  We keep hearing things about snow on Tuesday....LOL  that is all we need, the big snow storm I wanted.....  Let's hope not!

Selah wore her new "nose or speaking valve on her trach today.  It was a big deal and Jon & I both came over to be with her.  Basically it covers the trach, Selah can breath in through it but then she has to push out her air through her mouth and nose.  We kept it on for 20 minutes to begin with and she did beautifully.  She had no issues and now we will start using it daily adding 5 min a day, doing it 2x a day.  Soon that will be the cover she uses...on her way to NO trach!  Using this will make her use her diaphragm, her throat muscles, tongue etc.... she hasn't really used them for almost 4 months so she has to be reminded how to do this.  We had hope for this new valve sooner but she just wasn't ready until she had been sick and had had to work harder at breathing.  Now she is handling it like a pro!   We could hear her making noises again but they were faint.  She calms down when she hears herself.  It's funny how being sick helped her so much!

She sat at the edge of the bed today with her therapist kneeling in front of her.  Selah held her trunk up for about 15 minutes on her own.  She only needed minimum assistance with her head.  When Ms Megan first started working with her, she needed 100% assistance, now she is needing only 25% or less:)  She is coming a long way!

 

She had the sonogram on the blood clot in her leg and they couldn't see one, so hopefully she is done with the 2x daily shots in her tummy.  We will find out for sure tomorrow, the sonogram was clear but there were some "changes" that I'm not sure what that means. 

Despite all the gains, there is so far to go....tonight I feel a bit discouraged.  At this point, comparing Selah to what everyone thought would be the outcome, is encouraging.  But comparing her to where she was & remember she was very delayed before the accident, is discouraging.  She is far from the child she was......  I'm thankful that I don't feel she is far away from me like I used to feel but if we were to go home right now, she would still need 24 hour nursing care.  My fear has been she will come out of the coma, but have so much residual damage from the accident that she won't progress any further.  I'm a realist and I am also hopeful but tonight I just feel discouraged.  Please don't feel the need to give me encouragement, for some reason, at times like this it just annoys the heck out of me!   Don't mean to offend, just keeping it real.   There is still so much ahead, so many unknowns....  I wish we could just snap our fingers and everything be perfect again but that's not how it works, 

We asked that her Valium dosage be lowered by one dose and it was today.  But her arms/hands have tended to "draw up" today!  We don't understand what is going on and it seems that just dropping one dose shouldn't be responsible for that but we don't know.   I've put her little animals that heat up on her arms and now her right arm is completely straight and her left looks normal.  Hopefully she was just a bit overwhelmed with all the things she did today and had done to her.  She had a natural (for her) way of holding her hands/arms and they did have a tendency to be drawn up some.  We have looked over all our pictures to compare her before the accident to how she holds herself now.

So this weekend we are packing and cleaning our room.  I had to buy a new set of luggage since I came with the bare minimum...that will teach me!  We are going to go and take pictures of a handicapped playground here and hopefully we can use that to plan one for the kids and also for an orphanage in Ukraine.   We were given tickets to a 18th century village that we plan on going to this weekend.  We think Selah will be flown out around 6 am on Tuesday and we are going to try and leave right after.  We want to get there as fast as we can but Sam & Sarah may have other ideas.  Between eyedrops and diaper changes we get slowed down quite a bit!

So the one thing I always always ask is to please pray for Selah.  Pray that she will recover completely.  Pray that if she doesn't God will give us the grace to be the very best parents for her for the rest of our lives.  The future is scary...parenting a child with special needs is wonderful but since Selah's accident, she is at a level of care that is beyond what we are used to.  There are days when that weighs on me, this is one of those days.


Here is a funny photo of Sam after getting his hair cut, he loves to get his hair cut and was quite happy as he waited on everyone else to be done.