Stephen Joseph Clanton Happy 17th Bday!

Dear Steve,

Seventeen years ago we met you .....it doesn't seem possible that you are so old!  It seems like you should be maybe 10 or 11 NOT 17 years old!

We had wanted a child (sorta) for years before you came along.  I'll never forget the day we found out that we were expecting!  I had been sick for weeks and was pretty sure I was dying of something.  At the time, working in NYC with the drug addicts and homeless, I thought there was a chance I'd gotten some awful disease.  Someone at Teen Challenge said "maybe you are pregnant"  I really didn't think so but...we couldn't get into my doctor so I decided to go to a Christian Pregnancy Center to do a test.   I really did not think I was....  Got there, did the test and they told me I was pregnant!  I screamed down the hall to Jon and everyone was laughing at me!  I was in shock!  I couldnt' wait to get home to call Aunt Val and Uncle Jim and my good friend Charlene, so we stopped at a phone booth LOL that was a real long time ago!

So the next 8 months were filled with THROW UP!!!  3 or 4 times a day....starting wondering about this whole pregnancy thingy......Just imagine motion sickness 24 hours a day.... and on top of it, the idea of a real baby scared the poop out of me!  You know I"m not much of a kid person!!!

Lots of problems = lots of ultra sounds...everyone one of them said GIRL but it's hard to tell...you were in a odd position....LAST one it was clear we were having a BOY!  I freaked out!!!  Not only did I have to take back all the pretty clothes but I didn't want a boy!!!  So I hoped till the end, they were wrong

Like all your siblings, you had to have some drama, on a routine stress test, there was issues with your heart rate and they admitted me immediately.  Well I was there by myself since Papa had come up a month before you were to be born to "see NYC" and daddy had him out seeing the sights!  This was the days before cell phones so I thought the doctors were going to do an emergency  C section before he could be located.  They didn't and it was 2 more days before you were born!

On October 27, 1995 I woke up exactly at 6 am  in the most terrible pain.  I'd been given a drug over night to induce labor...it did!  OMG!  The next few hours are a blur of pain and finally after almost 2 hours of pushing you were finally born at 11:51 am, right before lunch time:)   I had told them I really didn't want you thrown up on my stomach, right after you were born, they could go clean you up.  But guess what?  That's what happened, and in the moment. I fell in love harder than I ever had before, it was love at first sight!  Holding you made those 8 awful months, and almost 6 hours of the worst pain imaginable, just not matter at all!   It was like pixie dust was sprinkled all over us...what a beautiful memory....and to think I loved this little bloody kid...all of a sudden you became "my boy" and I couldn't imagine wanting anyone else!!!1

From the beginning you were special.  You slept through the night the first night home from the hospital.  The doctor said that wasn't normal, we should wake you up but daddy said "if it ain't broken don't fix it"  LOL  and you were fine!  You were such a pleasant child, never really cried...I took a picture of you around New Years of you crying since it so seldom happened and you were so cute when you cried.  We enjoyed every second of having you as our child.

As you grew, you remained a sweet natured child.  I can hardly remember really having to discipline you much at all.  You made parenthood easy:)   Everything was fun with you......every year, every age, has been great from babyhood, through the teen years.  You never had terrible twos or much of a teen age attitude (most of the time)  Dad and I have always enjoyed doing things with you and going places...

We all didn't know what was ahead for our family when we had Sam, then added Shad and then Sarah & Selah....there has been alot of stress in our life and change but you have rolled with the punches and been there with us.   You've taken a lot of responsibility and you've learned more than most kids your age would ever know about life & the world.  You've handled being a PK (preacher's kid) with grace & kindness ( & just a little sarcasm LOL)  We trust you and have a lot of confidence in you!  You are dependable. 

Over the years, we have learned to deal with life with humor and I'm glad for our family jokes.  They've helped us through:)

The little kids love you.  Shad looks up to you and Sam thinks you are his second daddy ( Sam has 2 dads and 1 mom LOL)  Sarah loves you and laughs at everything you do to make her giggle.  Selah would go and just sit in your room to be with you....You're a great big brother!!!!

I love your mind and confidence and how you deal with your faith.  You are not easily shaken by events.  You have learned to trust God and not expect things to always be easy.  You're a big help at the church in practial ways and I love how you love the inmates and think of them, making sure Dad gets them the newest LeCrae music!

We can't wait to see what's ahead for you!  We will always be here for you and love you!   I am so grateful to have been the one that got to be your mom!  It's been a great 17 years and I look forward to the future!   I love you!!!!

Cold & Rainy Friday night!

Selah did good again today.  She did PT & OT, she stormed a bit between them, her heart rate went way up but her blood pressure did ok.  She was also reassessed by the rehab team at the hospital and they were actually encouraging.  They may ask St Mary's Rehab to look at her again.  She was turned down by them about 4 weeks ago because she was not responsive.  They feel now she might be accepted, which is great!!!

With Selah, not only is she dealing with the brain damage from the accident, she also had many delays before this.  Although she is 8 yrs old, she was more like a 18 month old.  Also you have to factor in that she was just hearing English for a few months.  There is a Russian doctor in rehab and he has talked to her in Russian and she did not respond to that anymore than she does to English.  She didn't seem to understand much of what was said to her in the orphanage and did not follow simple commands there.  She is very delayed so rehab, even OT & PT is hard for her.  They can't evaluate "if she can follow commands" since she didn't BEFORE the accident.  Now we had taught her one thing "come here"  We worked hard on that as we felt she needed to understand that in case of an emergency.  She also knew when I would say "let's eat" "let's play outside"  and she would respond by walking with me.    Anyhow she has a lot of things that make it harder for her to be evaluated by tradition rehab.  Thankfully her OT therapist REALLY gets it and helps us with that, in dealing with others.

We had a good conversation with the doctor here who is setting up the Fish Oil study and she was very encouraging.  Hopefully she will get into the study by next week.  There is alot more that I will share tomorrow after I go over the studies.  We are so excited....

Tonight we went to Mt Morris, to our good college friends' home.  They threw a surprise 17th birthday party for our son Steve:)  We had a wonderful night with our friends, what a blessing to have long term friends here with us!  We've been friends for almost 30 years, you just can't replace a friendship like that!!!  Love you Dan & Charlene! 

 

Dan & Charlene's youngest daughter with her buddy Sam!

 

praying a blessing over Steve

 

Andrew and Steve

 

This morning my kids were still wearing shorts, now it is freezing!  It's already raining here, although it has nothing to do with the big hurricane that is coming.  We are really hoping for snow! 

Tomorrow I will have a longer blog and talk more about the fish oil study and my wonderful son Steve!!!  I can't believe he is 17 years old!  Doesn't seem possible to us!!!!

What is that to you?

I've got so much to share tonight....

 

 

What a beautiful day up here!!!  As you can see Selah got to go outside.  She did great!  Her blood pressure and heart rate stayed perfect. 

In therapy she actually pulled her hand AWAY from the therapist.  The therapist said that shows that both sides of her brain is working.  She did good and then showed her displeasure when the therapist worked with her legs, by frowning up and crying.  It's so good to see her show emotions!

Then a couple of hours later, we got to take her outside!  It was quite the production since this was her first time but she did perfect!  It is in the 80's up here today, we had to go into our suitcases and get out our summer clothes LOL   Before we took the pictures she had been sitting up much nicer but she was getting tired. 

All morning long she was moving her head (which is the MOST she has done) then when we were leaving for supper, I turned on her DVD player and she moved her head all the way over to watch it!!  To say we are thrilled is not strong enough!  We are thanking God!!!!

The Fish Oil study hasn't even started yet, the paperwork is all being processed.  I just can not imagine what she will do when she starts that!!!!

Well we can add St Joe's to the list of hospitals that has turned her down...their reason she didn't need their level of care LOLOL, so LRMC says she is too serious and St Joe's says she isn't serious enough.....  But I will say they are working with us to find a rehab to work with Selah and has helped our social worker here.  We are looking into a rehab in Jacksonville Fl.  If they accept her, life will get very complicated for us but maybe that is the path we need to go.  The website looks great, but we don't know if they will accept her or if/when they will have an opening.  She may be to the point that a rehab will take her since we've since some good changes in just the last few weeks.

Our poor doctor, at first I thought he meant a nursing home....let's just say I was not happy but then I checked it on line as we were talking and felt better almost excited about it!  It will be quite a challenge for our family if that is where she ends up going but if she can get rehab, it will be the best for her.  Of course, I'm already trying to figure out just how it will work, and let's just say we will need God's help big time.  We try and stay together as a family as much as possible and obviously someone will have to stay with her there and we only have one good van...we dont' know if there is a RMH or what we'd do for a place to stay....it's a good thing I know God will take care of us! 

We saw our original doctor today, Dr V has been through the whole thing with us.  He hadn't seen her since last week and he could see improvement and coming from him....that is saying a lot!!!!!!

Tonight after supper Shad and I came back to the hospital.  Selah was sleeping but I wiped her mouth out and she got mad and jerked her head away.  I think she scared both of us!  Then she SWALLOWED!!!!   YES!  Shad and I both saw it!  We grabbed each other's hands and hugged!!  It was like she won the gold medal!  Her night nurse said that Selah  moved away from her last night!

CONSISTENCY is what we are seeing thank God!

My heart is so thankful, there have been many many long nights I've sat in this hospital room or the PICU and just hung onto God's hand...  we were given no hope at all...nothing...and now to see these responses...and they are consistent ....and each day we are seeing new things....you have NO idea how I feel right now.

I've said through all of this that God is good, regardless of what happens...and He is!  Even if this is as far as she goes, He is still a good God.  More than anything I am thankful for God's presence during all of this.  He has under girded us, He has been our Strength.  I am so thankful that He has helped me to stay focused on Him and to not look around, and to not get bitter in my heart.  (for me that is the biggest miracle!)  

Let me tell you a couple of stories....

There was a family I've met here who had a child with a serious brain injury.  I do not think they would consider themselves a christian family.  Their child came in and they were given dire news.  However the child recovered in a couple of weeks enough to go to a rehab and then to be released to go home.  When we spoke to them, we were happy for them.  We both said "thank God" the parents did not acknowledge God in any way shape or form.  Now this all happened since we've been here...they seemed to get a miracle....   I have to be honest I was afraid I'd get bitter about that but God protected my heart.  Please know I am glad the child recovered so quickly! 

The other story is a minister's family who's child had a serious brain injury a couple of years ago.  They shared their story with us a couple of times basically telling us how we should pray or react to our situation.  Their son also recovered .....  Again I am glad for that the child recovered... although I got quite annoyed with the family!

So....where does that leave us?  One family did not acknowledge God and yet their child recovered.  The other family "spoke life and bombarded heaven and stood on & claimed God's promises"  and their child recovered.   We aren't in either catorgry!  We thank God for everything and acknowledge Him but we also aren't "word of faith" and we don't demand from God. 

Two things come to mind...one is the verse "it rains on the just and the unjust"  that was talking about rain which back in the bible times was a GOOD thing.  So what Jesus was saying is good happens on the just and the unjust.  Case in point....

The other Scripture is in John 21:15 -25 is where Jesus asks Peter three times if he loves him.  Then Jesus seems to tell Peter how he will die.  Then Peter asks Jesus about John and Jesus tells him "If I want him to remain alive until I come, what is that to you?  You must follow me!   My favorite part is What is that to You?  You must follow me!

So what do I gleam from that? I can't look at someone else's journey.  I need to keep MY eyes on Jesus!  Not what happens to you, good or bad.  What's that to me?

Several times I've said I don't really want to hear any stories good or bad to do with brain injuries.  Some have though it's because I haven't accepted what has happened to Selah but that's not it.   When we lost the twins, we entered into several "clubs"  We actually went to ONE group meeting for families who lost babies in utero...ONE and that was enough for me!   Since we had Sam we entered into several more exclusive clubs.  The first one was the blind club, not just anyone can get it.  Then we entered the blind and mentally delayed club.  Then we started adopting and then it was new clubs.....  When we were adopting the girls I was in several adoption groups that just got silly!  I was so tired of all the whining and belly aching and DRAMA..as soon as we got home I took myself happily out of all the groups.  I've found in all areas that each situation is different.  I don't necessarily need to hear your story in all it's nitty grittyness.  And you may not need to hear mine either LOL  So why do I blog then?  I blog for me:)  If you want to read it you are welcomed to do that!  If not.....that's ok too!  There are times to share with others and times to have folks share with you BUT for me walking through it, I've not sought out much and the the ones I have sought out was because I wanted some medical advice or to see if what our doctors were doing/saying went along with their expirence.  Personally I don't want to know everything that lies ahead...good or bad.  I really really learned it in the adoption world.  There were some people who went to Ukraine before me, and it sounded like a different country than the one I went to!  I'm glad I didn't follow some of their advice LOLOL!  Our journey is just that OUR journey!

Back to my point....we talked with two different families, same outcome, one honored God (and annoyed me) and one did not ....  I feel God is telling me "what is it to you?  Follow me!"  So I don't need to look at the sucesses or wonder why they had sucess...I'm not to look at the failures....I am to walk m own journey out and follow Christ! 

Honestly I wouldn't trade our journey for anyone else's even if doesn't end up perfectly.  Having sensed the presence and nearness of God like I have the last 11 weeks has been priceless.  I wouldn't wish our pain on anyone else either!   Maybe that sounds absolutely beyond crazy, and I can't reall explain it but to say "If I could still I wouldn't take nothing for my journey now"  I'm not stupid, of course I don't delight in my childs' suffering, that is not what I mean at all.   But God has been such a faithful and near God.  The bible says He is near to the broken hearted...and I can testify to that! 

So my advice to you, don't look at others, dont' envy their path or journey.  Serve God in the journey He has for YOU!  Trust Him even if the path is dark.  Even if you don't get the miracle you want.  Let Him be the one who comforts your heart!

During this time I have HATED to talk on the phone.  For the first month or so, I didn't even want it with me.  It was too much of an effort to try and explain anything to anyone.  It got to be almsot a phobia with me, like it stole my peace from me.  But it was NOT a bad thing, I didn't turn to anyone but to Jesus to get me through.  It didn't bother me to post on line things cause I didn't have to read responses if I didn't want to and no one knew LOL.  Please don't get me wrong, I appreciate everyone but I just had to turn to God, not to friends or family.  We had the same thing happen while we were in Ukraine.  There we couldn't talk to anyone back home about any of the decisions we were making and really it was good.  Sometime you just need to hear from God and not others.  So let me encourage you to look to God for answers for your journey, no one else can help ou like He can!  I know I can't I can barely help myself!  But look to God, He may not have the easiest path for you to follow...but follow Him.  You will find it WILL be the easiest path, no matter where it leads you IF you are trusting in Him. 

In years past I'd looked at other's with envy. wishing my journey was a different journey BUT I learned to be content in the path that God has me on and I can not tell you what a difference that has made in my life!  It can do the same for you also.  Please know I'm writing from the premisis that my reader is a christian, if you are not then you need to repent and ask Jesus to forgive you and then start walking with Him in fellowship.  If you are a christian and you are living in sin, you also need to repent.  I'm not sharing some kind of "new age" junk that we all have differnt paths to God!  Jesus is the only way to God.   But if you are a believer and you are always wishing for a differnt life, stop that!  Be thankful for the one you have and trust God in it!  Don't look to others, look to Jesus!  Then embrace the life He has given you!  It will become "your best life ever" if you just walk with Him.  Now I am NOT promising you it will become an easy path but it will be a path you'll walk with ease!
God knows I would have just died years ago if I had known the path that was set before me to walk!!!!!!!!!!   And I would have never ever thought it would have been a great life but I can honestly, from the bottom of my heart, tell you I am content with my life. 

So when you look at others, remember Jesus said "what is that to you?  Follow me!"  Don't look at other's wealth, fame, posititon ....plus you don't know what they had to fight to get where they are at!  You might not want their battles!  Quit looking at others and look to Christ!  Let Him be the example you cling to for whatever you face!  

I do believe this will preach LOLOL!!!

Alright good night all!  Shad has fallen asleep, then he fell out of the chair and started sleepwalking out into the hospital corridar, I had to go follow him.  I was cracking up, he woke up and now is back asleep in his chair.  I think it's time to take him back to the RMH so he can go to bed!

Please continue to ask God to touch Selah and heal her brain!  We are so thankful for how far she has come but she still has a long way to go for a full recovery.  Thank you for your prayers!!!!

Circus

 

Jon and me  and my cotton candy!

 

 

Shad and Steve

 

Sam and his bear..."a boy and his bear"

 

 

Selah  had a great day, she moved towards the music therapist (Selah seems to like her WAY more than the OT!) and she was moving one arm at a time. Last night she had 3 times she 'stormed" but she was able to get herself down without meds.   She was alert all day, hoping she will be alert tomorrow too!

 

All the paperwork is in from the doctor who is doing the research, now we're waiting on Strong's to do their part of the paperwork.  It takes a few days for things like this to get set up.  She should start the fish oil by next week.  We are just waiting with great anticipation!!!!

 

We were given tickets to the Barum & Bailey Circus and went tonight.  Jon had always wanted to take the boys to the circus.  Steve & Shad had such a good time they were on the edge of the seat watching everything.  It was good to be able to go with them.  My dear friend Charlene babysat the little ones for us, not sure they'd enjoy the circus  too much.  It was rather overwhelming to me and I'm such an animal person, I'm not sure what I think about animals doing tricks.  There was a group of animal activists outside and it made me wonder.  However the animals looked very well taken care of and healthy.  I think B&B takes care of their animals, it's just more the idea of it that bothers me.  I'm close to being a tree hugger to be honest...although I am a conservative Republican most of the time .."gasp" I have voted Democrat before tho'.....I don't necessarily believe the Republican party is God's party all of the time LOL (but I do believe that the Republican party has a more God honoring platform than the Democratic party does)  And please know I am voting for Romney!!!!

 

I say I'm a tree hugger but I also know one day this earth will "dissolve like snow"  but I HATE to see God's creation defaced.  I absolutely HATE new shopping malls, strip centers, housing developments.......  It actually makes me sick at times to see new housing developments being built!!!!    If I could, I'd be a vegan LOL but I'm such a hyprocritc because I end up going to the new shopping malls ( but not shopping strip centers or new housing developments)  and I eat meat....

 

Oh my....let me hush and get to bed!  We want to get over to Selah really early in the morning and it is hard to get the kids up, dressed and breakfast and get over there by 9 am! 

 

 

 

Questions

I get lots of questions....so I'll try and answer some of them for everyone....

How long have you been in NY?  Almost 11 weeks!

How much longer will you be in NY?  We are not sure.  We still haven't gotten a hospital to take her but right now our focus has turned 100% towards getting her into this study.  I think she will have to have all the preliminary stuff done and all the testing done and have it started before she would be moved to another facility. 

How do you feel about that?  Well since January 1 2012 we have really lived as sojourners....from the beginning of the this year we were waiting to leave for Ukraine knowing we'd only have a few days to get ready before we left...we waited and waited until March 30th!  It was HARD!!  We found out a little less than 2 weeks that we were going then.  That whole time it was hard to make any plans because we didn't know when we were leaving....and then you leave on a ONE WAY ticket... you have NO idea how long you will be in Ukraine.....and during your time there, everything is fluid, there are no rules...you just go with the flow...  We only knew a few days before we left Ukraine   to arrange for our tickets to come home!    Then once we were home, we were waiting and waiting for our appointment to come ot NY!  There were somethings that came up on the doctors' side that kept us from knowing exactly when we were coming....and it's a BIG trip to come here with 5 kids!    So I guess I rather beat down by this year of WAITING and going with the flow.  I've learned to do it LOL so I'm fine with this uncertainly, I am not wringing my hands or worrying about finances or anything.  God really has it all under control and there is nothing I can do anyhow....  I can not control the situation, I can't control what happens at home or anything.... and its fine....  Although I was MAD as heck (and still am with LRMC) even in that situation I know that God is in control!  It's not like I went to bed and cried, I got mad and figured that that would have been the best overall situation and I don't appreciate how LRMC treated us at all BUT ....go with the flow.  At this point, I actually have hope that she won't even need such a setting...  we will see....  So not knowing anything about when we will go home or where we will go or what we will do, is how we've been living this whole year and I've learned as Paul said "to be content in whatever state I find myself in"   having all our kids with us, we're at HOME!  I'm not worried about a house....

What do you think your kids have learned through this????  WOW~ it has prepared them for LIFE!  This whole year has been a huge learning experience for them.  Steve & Shad are pretty good kids.  They are probably more responsible than most kids their ages anyhow but now even more so.  They've seen God move in our lives and do amazing things and they've seen Him be near to us when we were broken hearted.   I think they are well prepared for LIFE much more so than Jon or I ever were.  Jon was very sheltered emotionally and where I wasn't sheltered, I didn't have good examples of how to deal with hard times.  I think we've been able to walk it out for them, by the grace of God.    We don't shelter our kids from anything except sinful things.  We feel children should learn to handle themselves in situations, we take our kids on visitation with us, to hospitals, nursing homes orphanages, to funerals, to prison....they've seen it all!  They are not uncomfortable around emotions or unusual situations.  This has been a year of unusual situations to say the least.  Sam really grew up while we were in Ukraine!   He adjusted to all the travel and did great!  We did planes, trains and crazy old 1970 Russian army vans.....  While we were there he learned to walk up and down stairs and to keep his shoes on! He has been quite happy here and loves the elevators!  He now sleeps in a twin bed and sits in a regular chair instead of a high chair to eat!  He is such the MAN!    Sarah has tolerated everything from day 1 leaving the orphanage fine!  She is almost walking and has never seemed stressed by being here, except right in the beginning when Jon and I were staying in the RMH in the hospital or in Selah's room all the time.  She cried a few nights....but once Jon started staying here , she was fine.  She is sooooo close to walking....she pulls up on the couch and lets go and just stands there until she falls on her butt.  She is getting quite a butt too LOL   She has gained alot of weight, I'd say probably 15 pounds since we adopted her!  When we got home with her she wore size 2T but I had to pin the sides of the pants up....not any more!!!  I have bought size 5t for her in all her new stuff!  She still doesn't chew food but I puree everything and she eats it up!  Thank God for blenders! 

How much have you been away from home this year?  If we leave by the week after next, we will have been away from home 18 weeks this year including our Ukraine trip!  CRAZY for me, I am totally a home body!  That is more than 4 months! 

How long have you been going to NY? Since 2007 when Sam had his corneal implants

Why did you take Sam to NY couldn't someone in Florida do his eyes?  No!  He had had corneal transplants that had failed and saw doctors in Miami at Bascom Palmer Eye but they had nothing else to offer him and this was his only chance at some sight.  The corneal implant was rather experimental 5 yrs ago but it has worked for him and worked well.  We tried to do follow up in Florida but it just wasn't working and there is no doctor we have as much faith in as we do Dr Aquevella so we decided to take the plunge and commit to coming here yearly.  It is a big commitment for us financially but we generally make it our family vacation, so we save money and we do stuff on the way up and down (we drive)  This year we were going to go on as short of a trip as possible ...yeah I'm laughing & rolling my eyes at that one.... we didn't plan on anything going up but Jon talked me into a few hours in Mt Airy NC (aka Mayberry- Andy Griffin's hometown)  and now I'm glad we stopped.   We usually do something up here with some close college friends who happen to live here and we ALWAYS have included a day trip to Niagara Falls, one of my favorite places in the world!!!

How is Sam, did he have any after effects of his near drowning?  Sam is fine, he suffered no after effects whatsoever.  Dr A checked his eyes a few times for infection from the dirty water but he's had no problem.  He never seemed traumatized by it or mentally affected in any way at all.  One funny thing he has started doing, is when he walks he looks behind him constantly...Steve said since he has "cheated death" so many times in his short life, Sam is making sure it doesn't sneak up on him!   We have to laugh at that...but Sam gets little "tics" and that seems to be his tic of the moment. 



What are your kids doing for school?  Shad is about a year ahead in his books so we aren't too worried about him.  Steve has done 12 books so far this year.  They go to a christian school that uses the PACE program so they generally work independent so it's not odd for him.  We do not know what we will do when we get home about school this year.  Shad had a scholarship through "Step up for Students Florida" that covered his books and tuition.  He lost it since we've been here so long, so I may home school them both this year.  Lord help us all.....

Is Jon's jobs secure and how is the church doing?  Jon is a pastor and also the chaplain at Zephyrhills Correctional.  Thankfully Jon had annual and sick leave that covered him until this pay period.  He is now on FMLA (Family Medical Leave Act) and is on leave without pay.  His job is secure and the prison is 100% supportive of our family.  Grace Church is going on as usual!  The church existed long before we were born and isn't dependant on us being there:)  The folks have remained faithful in attendance and giving.  Some of our "snow birds" have begun to return.  We've had two friends who are ministers filling in for us.  A member's husband is cutting the grass and keeping it up ( Steve was very happy to hear that he had visions of 7 ft grass that he'd have to cut lol)  Our music minister and our audio/visual man (new title Jim ) have kept it all together for us. 

Who is taking care of your pets & house ?  A couple from our church has the dogs and goes to feed the cats daily. (thanks Jim & Pat) 

What is it like to live in a Ronald McDonald House for 11 weeks?  It's fun, we have one large bedroom and a bath.  we have a crib for Sarah, a twin bed for Sam ( and boy does he like that!  he sleeps in a crib at home) a twin bed with a pullout for Steve and Shad and Jon & I share a queen bed, yes all that in ONE room LOL!  It works....  We tend to stay up later here than at home and still get up early most days.  Our family has kinda taken over the smallest tv rooms  (there are 4 tv rooms) and it's the closest to our room.  We use a baby gate to keep the little ones in during the day.  We usually watch FOX news at night together.  Tonight we went out and bought the new release of MADEA "witness protection program"  Tyler Perry is one of my fav actors/directors and Madea is truly truly me without all the cussing.  We had a popcorn party in the big tv room and lots of laughs with several families:)  There is a little Madea in all of us:)  Ok back to the RMH, we get up and fix breakfast for the kids, one of us goes to the hospital, the other stays with the kids (that's a rule here that children have to be supervised by a parent)  the one that stays here usually does laundry cause we still only have a few outfits apiece of warmer clothes!  Then it's lunch time, we've been trying to eat healthier so we been doing some of our own lunches, just frozen food from Trader Joe's or sandwiches.  Then the little kids take a nap, then it's time for supper.  We usually eat supper here UNLESS it is pasta, we're a little over pasta at this point!  Which ever of us is at the hospital, comes home for supper and usually the other one goes back after supper unless Selah is absolutely asleep, which has been more often lately.  Then by 8 or 9 pm we watch tv together. 

One really neat thing is the other families you meet, we've met some of Dr Aquvella's patients, including a family that I really encouraged to come here last year!  That was a treat!!!   Some families are jsut here for a day or two, some for weeks, like us and those are the ones we usually get to know.  It really helps to know you are not alone in your journey.  The kids may all have different problems but as parents, we all feel the same.  Here everyone is the same, maybe in "real life" we might not have ever met but here we are all connected!  It helps me, I guess when you see ALL the suffering and hard times that happen to other families, it helps you put your life into perspective! 

Getting to really know the staff and volunteers here has also been great!  Before this time we had connected with them all BUT this is so different.  They had always remembered us because we came every year from Florida but now we are the longest staying family at this time (they did have one family that stayed over a year~ we kid around and say we are trying to break the record)  This place has really become our home away from home!  It's not been hard at all to stay here for us.  The kids love it.  Steve and Shad will hate leaving, they get so many treats here (like tomorrow night we are going to the circus and getting to go in an hour early for a special show)  Sam LOVES the elevator!  He is just enamoured with it! LOLOL   Sarah has been here almost as long as she was in our home and she has just done great, no issues whatsoever, talk about a kid who can go with the flow!  She came out of a mental instituion , to a family and then to another house....

What do you and Jon do for "down time" ?  We read alot!   I finally can conertrate enough to read something besides Nancy Drew....that was ALL I could read for the first month,  I'd get stuck on the same page....my mind was a mess!!!  Of course  go on the computer more than usual.  We try to do stuff together a couple of times a week with everyone, whether it is a trip to the store, the zoo or something...

Is Selah still in a coma and what does that mean?  Yes she is.  Comas have different levels to them.  She is probably still classified as being in a "persisant vegative coma"  similar to the Terri Shivo case in Florida years ago (so sorry for Terri and her parents!)  The depth of the coma depends on the amount of damage to the brain and the amount of healing to the brain.  She has swallowed but only 2x that has been seen.  She does open and close her eyes and blink.  She moves her mouth and tongue at times.  She is responsive at times.  It is similar to being drugged I'd say as far as her responses are slow and sometimes not there.  The kind of brain damage she has, is only repaired by the brain recoverying over time.  It's not the kind you just "wake up from" like you see on TV!  That is so NOT what a coma is like!  In her case, as in any drowning in which the heart stops, the chance of full recovery is 0%.  IF the heart stops more than 6 minutes some brain damage occures, if it stops for 30 minutes or more like Selah, there is little hope....I think she is exceeding the medical expecations on her own (since there seemed to be none)  but hopefully on the fish oil she will quickly begin to recover.  She has come further than we thought she would already so we are so thankful!

What's the weather like?  Depends on the time of day you are asking that question!  LOL  Fall up here is very different. we have literally had major temp changes throughout the day, so you don't know if it will be cold or nice or rainy  when you walk back outside again!  But over all it is much colder here than Florida is this time of year!  We kid around that we are holding out for SNOW!!!  Steve only saw a little dusting in the air in Kiev and Shad has never seen snow.....  Everyone here tells us to be quiet LOL!  We had only packed shorts & tshirts!  I only brought sandles because it was hot and I'd just had foot suregery...Thankfully Macy's took us on a shopping spree and we got a couple of outfits each for cooler weather!  I've also hit the thrifit stores too!!! 

How is the foot?  completely healed!  If you don't know, when we got home from Ukraine, I got a "spot" on the side of my foot.  Got it cut out which hurt like the dickens.  That didnt' help, had it cut out again and that did not help and two more "spots" grew....it was HORRIBLE!  I had nerve pain that really incapsitated me, I had to use a cane ( and I'm used to walking MILES a day!!)  FINALLY changed doctors and had yet another surgery the day BEFORE we came up here.  He did lasar surgery on the two new spots (and do NOT let anyone tell you it doens't hurt...Oh MY LORD it hurt)  and he cut out a THING out of the side of my foot that looked like a stinking MOLAR!  When he told me he was going ot have to do another surgrey #3.....I actually cried!  But I let him do it and that was what was pressing on my nerves and causing the awful pain!  So the gorge in my foot has healed and the two spots fell off....and NO I never got a real diagnosis on any of it other than"that is the craziest looking thing I have eever taken out of someone's foot" LOL!   BTW, the accident happened less than a week after that surgery and when I saw all the emergency vehicles at the end of the road, I took off running....just knowing in my gut it was Jon and the kids....I forgot about my foot for about three days, WHEN I remembered...there was pus coming out (sorry to be so gross) but it is interesting how I did not even notice it for days despite the pain it must have been giving me.

Where do you go to church?  Well except for last Sunday when we acutally slept until 11 am,(didn't bother with an alarm because we usually wake up by ourselves)   we have gone either to Calvary Assembly of God in Chilli or Christian Community Church in Williamston. 

What has been the best thing about all of this?  Well there has been many "best" things....FIRST the sweet presence of God as we have walked through this as a family.  There has NEVER been a moment that I have not felt God's presence.  I started praying in my mind as I was running towards the emergency vehicles......and He was there.  One day I will tell my story of that day and how God was with me.  Alot of it is blurred in my mind, but the one thing that stand out is GOD!   The second thing is the LOVE of others...from the second it happened and the resuceors stepped in, we have been surround by love & support.  In the ER there  were people there for us, friends of friends, ministers, our friends from this area, strangers, staff of the hosptial, all there to love on us.  We've been sent gift cards, hats, PJ's, all kinds of things that have given us a smile!  People come up to us and tell us they've been praying for us, for Selah since this happened!  Just tonight at Target, we met a mom of a SN child and she said her and her church have been praying.  Rochester NY is a wonderful caring town!!!  And our family and friends back home have done so much for us!!!!  Friends from all over the world praying in CRAZY places for our family and Selah!  People that read this blog and pray.....it's been unreal.  I can truly say my faith in humanitly has been restored!!!!!  It's been unreal the love we have been shown!!

What has been the worst part?  That is also easy....the pure terror that your children are dead or may die...the terror that your child will live but never even know if you are there beside her...so so so scary....the first week after the accident my mouth stayed so dry ALL the time.  It was literally a physical reaction of fear 24 hours a day!  I also shook, actually vibrated from the inside out, I could not stop the movement.  It would worsen when I laid down to the point the bed would shake.  Qutie an unsual physcial manifastion....I am still sore from it!!  I really really want to go get a massage...if anyone reading is a massause let me know....  The dry mouth and shaking lasted about a week...and lets not forget the throwing up ( the first couple of days) and the awful direahhe ( the first month or so)    My body reacted to fear in a way I've never expirenced on that level! 
 
Was Selah ever dead?  Yes she didn't have a heart beat for over 30 minutes, she was dead.  The oficer that worked with Sam at the scence does not feel Sam had a heart beat either so he probably was gone too. 

Was Selah ever brain dead?  Not from the time she was brought back....I even think she breathed over the vent the first day ( it was set on 16 breaths a minute and it usually registered 24 breaths a minute, meaning she was doing extra breathing. 

Have you ever questioned why she was brought back?  Selah required 4 shots into her heart to get it back beating....there were times in the begining when I did wonder if they didn't try to hard to bring her back.  Both Jon & I prayed seperately for God to take her if she was just going to lay there.  I didn't tell him nor did he tell me until just a few days ago.  BUT we believe God is in control of our lives and of Selah's life. 

Do you ever doubt your decison to put in the trach and feeding tube?  Nope!  She was not brain dead.  We were not going to starve her to death nor let her drown in her own saliva...we have to stand before God one day.  We had to feed her most of her food anyhow so what is the big difference in a feeding tube and me feeding her by hand?  She wasn't feeding herself before, should I let her starve just because she now wasn't eating by mouth?  Since God has enabled doctors to come up with such cures/helps I feel we should use them.  Plus can you imagine NOW that there is this HOPE of a help for her....what if we'd let her go...wouldn't we be wondering NOW if we did the right thing?   

How do you all handle the accident emotionally?  That is the million dollar question.....   The mother of the police officer who was with me from the scene to the ER told his mom the first thing I did was comfort Jon by saying I didn't blame him.  It stuck out in his mind because he has been invovled other situations where family members have been awful to each other in situations like this.    I just kept telling Jon I know how quick something like this could happen... how did I know?  It had happened to me.  When Sam was a baby I took him and Steve for a walk around Lake Parker and I dropped the lid of my water bottle on the ground, bent down to pick it up and the storller rolled into the lake.  The differnece being it was a shallow Florida lake.  The wheels got wet and it bogged down a bit in the mud.  It scared me not that he would drown but there are HUGE gators in that lake and I was afraid one would come over.   It was all over in probaly less than a minute but it scared the poop out of me!!!! I turned around and went home.   This may sound absolutely crazy but I THANK God for the expirence I had....otherwise I may have blamed Jon.  I know how quickly something could happen.  That happened to me in seconds!  

Also  I know Jon and the person he has been for the 23 years we've been married and the almsot 17 years we've been parents.  He is the most careful person in the world.  He is a slow safe driver, he thinks of things that could happen to the kids and is just as much of a worry wart as I am.  I've never thought he had ever put any of our kids in danger and actually sometimes would get annoyed with him for being slow and so particular about things.  That helped me also! 

There has been alot of guilt we have had to work through....I've felt guilty because Jon had asked me a few times just to pick him up a watch at Walmart since his good one had quit working.  If Only I had gotten him one....I've felt guilty that I wasn't with him, I've felt guilty that I offered to take a family to the airport...if I hadn't he wouldn't have looked at his cell phone to check the time,  I've felt guilty because that morning we knew Sam needed to go outside and he asked me which girl I wanted him to take with him....I've often thought if I 'd said just take Sam, then he'd taken the smaller stroller and even if it this had happened, then the outcome would have probaley been different, he could have dealt with just one child and a smaller stroller better.    Steve felt so bad that he didn't go walking with Jon because Jon had asked him to go but he wanted to play a video game or watch tv and said no.  He feels if he'd gone it probably wouldn't have happened and if it had he could have jumped right in and helped.....

Jon, of course , has been tore up about this whole thing.  His first real words to me in the ER hall was "we rescued her from a mental instituion for me to lose her in the canal"  He thought she was dead.   It was an awful time and there have been moments that are just too raw to share but God is our help.  God has helped him deal with it and has helped all of us to quit blaming ourselves and second guessing every step of that morning.   One thing that helped me is to think of Jon's mom.  She was killed in a car accident that was basically her fault.  We don't blame her for having the accident.  We see if for what it was, an accident.  So in the same way, I look at this as an accident....something that happened to a family that is very cautious, but not perfect.  I look at what Jon did with super human strentgth, how he saved both children.  The other rescuers  can't beleive he was able to do what he did!  He doens't look at himself like that yet but when I went back to the accident scene, I saw just what Jon did and it was mind blowing.   There were moments where feelings rushed over me in the begining...but God also helped me through that time.  I thougth about going to counseling but I've found over the years there is no "secret" counseling out there , you've still got to deal with things in your heart and with God and that it what I did.  

What is your hope with the fish oil study?  Well our hope is that she will FULLY recover!  That is our hope, it may not happen.   We do expect to see some changes and growth. 

How did you find out about the fish oil?  There was a story on CNN that was sent to me by a college friend and a person who reads my blog.  I have been sent lots of things since this happened and looked at some things but this story resounded in my heart as a real possiblity!  I wrote about it on my blog, I wrote how we immediately went and bought TWO BIG bottles of gelcaps at CVS!  The reson we did that is a nurse told me tha sometimes the hospital allowed parents to give their kids vitiamins that weren't prescribed throught the pharmacy so we were prepared on Saturday to draw out the fish oil and put it in her gtube LOLOL  We have already laughed about it and how dumb we msut have looked but we were EXCITED!!!!  Then I got an email from a lady who reads my blog and uses fish oil for her daugher for another reason and she knows the Dr Barry Sears personally so she put us in touch with his assisatant and they got the ball rolling!!!!!!   BTW the fish oil we will be using on her isn't like the kind you can just buy at the store, it is very pure and stronger. 

Has she been in any other studies?  When I was told she was unlikely to survive, I immediately asked if there were any studies being done.  I jsut think like that because of Sam.  The doctor told me there was a study of "cooling sheets" that the hospital was in.  I said "put her in it"  He told me he needed to go over stuff with me and I told him to" just put her in the study...what have we to lose at this point???"  We 've also laughed about that now, the doctor told Jon later they had never put a child in the study as fast as they did Selah!  I think it was only 3 hours before she was put into the study (it is invovled & requires alot of paperwork)  I think he said it usually takes 8 hours....I think they thought I was a crazy mama!  The cooling sheets kept her body at a lower temp and may have helped her.

What will you do if there is no change at all?  The same thing we've been doing...trusting God!  Our faith is not in anything but God!  Sure we are hopeful but God is our Hope! 

So that is about all of the questions I can think of that has been asked....

Protocols and Paperwork

Today has been a beautiful rainy day here in Rochester.  All the arrangements are being made for Selah to be in the study.  It may be next week before she actually starts the fish oil but everyone is working as fast as they can to get all the paperwork and protocol in place for her.  She will be the first child to have fish oil for this purpose, to bring her out of a coma.  We are just thrilled & find it hard to think about anything else:)  It looks like now we will be here at least another week. 

We thank you all for your heartfelt support for us and all the prayers for Selah. We have walked through this saying we were going to TRUST God and we have through the tears and pain...He is Faithful...even if things weren't going so good, He would still be Faithful! We still don't know the outcome of this ordeal, it still may not be a perfect outcome but we are TRUSTING God! He Alone is Faithful..... I'm thankful for this hope we have been given, thrilled with it actually, but please know that God is faithful even when the world gives you no hope. And I promise you that is the sweetest time, it makes no sense but when you walk through the valley, and you find you are NOT alone, there is nothing more sweeter than that assurance. Believe me, I can say that with full confidence!

So please keep Selah in your prayers, pray that all the details will be worked out quickly......

Lots of good things happening!

Where to start?????


Today we both went over and were there during therapy, she did well during theraphy & she showed emotion and cooperated.  At one point the therapist was working on her legs, moving them, stretching them and she was grimacing...THEN she SWALLOWED her salvia!!!!!!  I caught it out the cornor of my eye and then Jon & the therapist saw her do it a second time.  That is BIG!!!!!!  She has not swallowed since the accident, if this continues and is constant, one day she will be able to have the trach removed:)


Selah is offically in the Fish Oil study!  Thank you Strong's Hospital for being so open to work with us and Dr Barry Sears!  We are so thankful that our daughter is at a hospital that is so open to research.  I've been reading more and more and am just thrilled that this is working out for us.  Dr Sears's staff has been so helpful to us and have worked with Strong's to work out all the details of this study.  We feel beyond blessed by the people that are helping our family! 

She will starting the Fish Oil in the next few days, there may be some tests that need to be done first  and it has to be shipped to us.  She will be getting high dosages of pure fish oil.  

As you can imagine our hearts are lighter, we are just amazed by the progress Selah is making on her own and we have high hopes for this study.  She still has a far way to go but she is headed in the right direction!  Please pray that she will continue to make daily progress and that this fish oil will be key to completely bring her out of this coma.  We do not know what will happen nor have we been given any false hopes by anyone but we can't help but to be hopeful! 

We have always believed that God heals in many ways.  There are the BIG biblical healings ...there is natural healing ( like broken bones growing back)  there is healing through medicine like what our son experienced with his eye implants.  We thank God for doctors who have worked hard and used their God given skills to bring healing to us.  This may be the way God uses to heal Selah! We are certainly  hopeful!  

Fish Oil Study

We are starting the process to get Selah into a study involving fish oil.  If you've seen my latest posts, you may have read the story that was on CNN about the benefits of fish oil for comatose patients.  A mom whose daughter takes fish oil for other reasons put us in touch with the team that is working on this.  It happened FAST, like most good things do:)   Today there was discussion on both sides and it looks favorable that Strong's will work with this study!  We are excited and anxious at the same time.  Obviously we are excited because of the two men who were given NO hope and then given the fish oil, they recovered!  Selah is actually in a better place than they were at the time they were started on the fish oil.  She is doing more things and is stable.  We are anxious because there is alot of things that have to come together to make all of this work, so far Strong's has seemed open to this study, we just hope all the details can be ironed out quickly and she can be started on it.  So please pray that everything will come together and that Selah will be another success story!  I have not seen that any other children with near drownings have participated in this study so perhaps she will be a trail blazer!

Today has not been a great day for her, her heart rate and blood pressure stayed up off and on since late last night.  It was never so high that she had to have any additional meds but we like for it to be normal and stable.  Please pray for Selah that she will have a good night. 


I want to say thank you to so many folks who have done things for our family.  I had gotten thank you cards and had many addresses written down to send thank yous to and now I can't find my address sheet!  I am so sorry and I hope you all know how much we appreciate all the things that folks have done for our family!  God has just surrounded us with loving people!  I hope I can find the addresses,  but please know we appreciate each one and many cards and letters have brought us to tears!!!!!

The Best Day Ever....

That's a silly Sponge Bob song but ....today has been THE BEST DAY EVER!!!!!    This has been the best day since the accident!

Selah was responsive and relaxed all day long.  She was looking at us, following us with her eyes.  She tolerated being in her chair for an hour or more.  Then she made her "crying face" and her heart rate went high quickly.  I grabbed her up and put her to bed and she immediately calmed down and stayed calm!!!  She wore her "nose" for 3 hours with no issues.  A "nose" is a filter that hooks over the trach and acts like our nose, it filters air and it humidifies the air going into her lungs.   This is great for her because we can transport her without the tube that humidifies her air now that is large.  That means we can take her outside in the stroller, put her in her swing and be alot more flexible. 

We got her a new stuffed animal that is weighted and can be heated in the microwave.  I used it today on her legs and arms.  She was had her hands completely open and resting on it.  That is huge since just weeks ago, her hands were clutched into fists!  Her legs relaxed and pointed down in a normal way.  I was able to even work with her feet/ankles!  She was much more relaxed than usual.  We also saw her move her head a few times on her own! 
 
The attending doctor was open to her getting fish oil.  He sent a request to the pharmacy to make sure  it would be ok to give with her current meds and we are still waiting to her. 

Tonight we went out to eat and to buy her another one of the microwaveable stuffed animals so she can have one for each leg.  We also went to a Trader's Joe!  FUN!  We bought some healthier snacks and breakfast foods.  We've not been eating the healthiest in the past few weeks, to say the least.  I think we will all have to detox when we get home from all the snack foods/soda/candy.....my kids are going to have a rude awakening:)

Please keep praying for Selah, we are seeing answers to prayers!  Please pray that she will get the gag/cough reflex back and that she will continue to improve in all areas.  Tomorrow is Sunday, so if you attend church, please ask for special prayers for our sweet girl!  Thank you!!!!

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. 

Ronald McDonald Volunteer House Banquet

Shad calling out the prize numbers.  He is cool looking or what?   Who has that much confidence at NINE years old LOLOLOL~!~
 

 

 

This picture is Jon and I sharing with the volunteers how much we appreciate the Rochester RMH on the behalf of our family and all other families who stay here!!!  We had the BEST time tonight.  This banquet was to honor the volunteers who had worked on the Annual Thrift Sale for RMH~500 volunteers who work year long to make the sale possible.  This year they made over $330,00 for the upkeep of the RMH!  What sweet people!  So many came up to us and talked with us afterwards.  We are just so overwhelmed with all the volunteer workers that help out here.  It is amazing what is done here, the volunteers do so much stuff.  We've stayed at a few different RMH over the years and there is NO  RMH like Rochester RMH!!!  

This morning I got up early and spent the whole day with Selah.  She had a great day, got to spend an hour with therapist.  She gave me some great ideas and she was so encouraging to us.  She notes everything that Selah does and encourages us on all the progress she makes.  she was VERY responsive today and that was really encouraging to me.  I needed that.   She did have a time when her heart rate went up for a few hours.  She didn't have as high of a heart rate as she usually does & her blood pressure didn't go up too high but it did last for a few hours.   She is starting to wear a "nose" on her trach.  It is a covers her trach and works like a nose to filter air.  It will help us not to have to use the humiderfer all the time once we get home with her.  We are so blessed by the nursing staff here, they work with her trying to do everything they can to help her.  The last few weeks we've had student nurses and they have been wonderful too.  They seem to really care about the patients & the families also. 

We are waiting to hear on our next step with Selah, please keep us in prayer and as always pray for Selah!

Radio Interview

Today Jon and I did a radio interview for the Ronald McD House's annual telethon in the spring.  We have never done a radio show before, it was interesting.  The man who interviewed us was a believer and had a story also...don't we all?  Life is hard and every one's story is different but we all have or will have a story.  He experienced the grace of God through his journey also.  We could relate to the pain and we could also relate to the peace of God that carries us through!

This Wednesday makes NINE weeks since the accident....we are still praying for our Selah.  we ask you to continue to pray for her also.  Our life has not gone back to "normal"  We are still in the same situation, still in the same room, still with a little girl in the hospital...she is better but not the same little girl that we had 9 weeks and 1 day ago...

Today the nurse did say that she saw Selah respond to her also, when she was wanted to get out of the chair.  That was a great uplift to us!  We have some GREAT nurses!!!!  I'm so impressed by the nursing staff here at Strong's.  Of course no one wants to be in the hospital but if you do, this is a good place to be!

We had a crazy day today, everything got out of whack, woke up late, the water was off here for some repairs, then the interview, so Jon went over and stayed with Selah this afternoon.   I went and got Sarah's haircut and mine too.  Sarah looks like a little Amish girl:)  We have some Amish staying at the RMH and I think they think we are converting:)  By the time we got back it was time to feed the kids supper and give baths, eyedrops and do teeth brushing!  I didn't get to go to the hospital today so I'll get up early in the morning and go stay with Selah.  We have to have one parent here with the kids so it makes things a bit more complicated. My good friend who was watching the kids has gone back to work:(   So we spilt up our time with the kids.  We try and keep things as "normal" as possible with the other kids and keep them on the same schedule as we would at home.

The weather has been crazy here!  It has been super cold, in the 20's a few nights and then today it's warm and up in the 70's I had packed away all our summer clothes, of course LOL!    We had hoped for snow:)  The boys were really hoping we'd get some before we leave but I don't know if we will.

Well goodnight all and thanks for the prayers for our baby girl!

Waiting.....

We're just waiting on word on our next step.... still don't know all the details but hoping that things will work out for Selah to go to Lakeland Regional.   LRMC will be having a multi disciplinary meeting on Friday to discuss her coming to them.  Please pray that everything will be worked out for her.  So many changes will be coming for out family soon.  Being home will be a huge change for us after these past almost 10 weeks up here. 

Selah seems to be more resting today although she paid attention to Jon this morning as he sang and talked to her.  This afternoon she is just sleepy.  She seems to be on a plateau as far as doing anything new and of course that worries me alot.  Please pray that she is able to cough/gag and start moving her limbs.   She was so sleepy with me, it just worries me!  Please pray!!!!!!

There is alot rolling around in my head today, none of it too spiritual to be sure.  Feeling down and rather alone in this fight for Selah.  We want to see her get the best care, in a setting that we are comfortable with.   No one will fight for your child but yourself but that gets hard.  It's just a shame that things come with such a fight!!

Thinking that Friday will be 10 weeks since we left home....thankful that God has been with us during this time and that our family has been held in the palm of His hands.  When I look back, it amazes me that our family has made it through.  We are living in a small bedroom/bath in the RMH, our kids have just "rolled with the punches" we're making it work for us.  Someone asked if we were homesick...I anaswered "Nope, my family is with me, I don't miss a house!"   We've tried our best to keep things as normal as possible for them and thankfully it's working.  But it is difficult to go through such a valley, in a place that is not home.  We've been blessed by so many folks in the Rochester area to make us feel "at home"  So with every difficulty, we've been blessed.....but it's been a hard walk. 

So please pray for Selah and for us ...thank you!!!!

Clanton Family and Selah video (thanks Sarah)

Sunday update

Selah was more quiet today but she did enjoy her mouth swabs and she licked it every time!  The nurse saw it and was amazed that she could move her tongue like that.  The nurse was encouraging!  One good thing is Selah has not "stormed" for two days!  Her heart rate didn't go crazy when I got her up and worked with her.  She was more tolerating of me moving her arms and legs and her arms were very easy to move.  Her legs and ankles were less rigid than they have been so that is a good thing also.  Please continue to pray for her!  We treasure every little positive thing! 

Please pray for a member of our church, she just found out she has a non cancerous tumor in her stomach.  She is a sweet women & has served God for many years faithfully.

Thank you for all your prayers!!!

Update on a cold and rainy night....

Jon was with Selah today and I was doing 5 loads of laundry....we wanted to ask the nurse to do a gag/cough test on her to see if she'd respond.  The nurse did it and she didn't cough or gag but she clearly didn't like it.  We were disappointed that she didn't respond to it by coughing or gagging.  But she did respond to Jon today in the same way as she had been doing. She again seemed to banter back and to with him.  Today she seemed like she wanted to get out of our car seat and back in bed.  We use her car seat instead of the "therapy chair" it is much more comfortable and has a better head rest.  But she got tired of it and Jon could tell once she was back in bed she was happier. 

We went out to eat with some great friends tonight then we went over to the hospital.  Selah did two new things for me.  When we got there it looked like her mouth was dry so I wiped it out with some lemon flavored swabs, she LICKED the swab with her tongue, several times!!!!!!!!!   We were laughing at her:)  She really responded to it!!!!!!  Then as we were leaving for the night she STRETCHED!!!!!!  Now that might not seem much to someone else but it was a different , more relaxed movement than what posturing is!  Also her arms/hands were relaxed and not clenched, as well as her ankles/feet.  Her knees were really stiff but overall she felt better than usual.  This new movement was so different than posturing.....it looked just like when a newborn stretches....

So I'm sharing each new thing with you all but I'm being honest.  I wish she had the cough/gag response.  I think the doctors would be happier with everything if she did that since it is a basic response that she should have.  Please pray that she will get her cough/gag response back.  That would be a great thing!!!!!!  Thank you all for your prayers!!!!! 

A VERY HAPPY 23rd Anniversary!

Jon and I got married 23 years ago...we eloped and got married at the courthouse after knowing each other for only one month:)  We had slightly known each other in a class two years earlier then got reacquainted when I applied to work at the Talbot House where he was the director.  It was truly love at first (or second) sight.  I didn't really have alot of family and it just seemed right to us to elope:) Crazy but right.... Our life has been full and interesting to say the least....I've never been able to say we had a boring marriage:)  We've been all over the world, had crazy adventures, some hard times and some deep heartaches but we were definitely meant for each other.   We've learned to watch each other's backs and be a "unit" something that is really important in the ministry!!!  Marriage only gets better with time! 

Today we went to Niagara Falls, ate lunch at Denny's (we do that every year) and walked around on the American side.  We had planned to go to NF before all this happened and we don't have USA passports for the girls yet so we didn't bother bringing ours to go to the Canadian side.  NF is one of my favorite places on earth.  When I look at the majesty of it and the beauty I can not help but think how beautiful heaven will be!  It takes my breath away to see it and we've gone there now many times. 

We had so many nice surprises today.  When we got up, one of the other families who works for a certain bakery store had left us a couple of boxes of my favorite snacks!  And we had some cards and a gift card for Applebee's (which we used tonight)  And a cake from the RMH....BUT the biggest gift was from Selah!!!

Jon went over when we got back form NF.  He called me to tell me that he "bantered" with Selah.  Selah didn't really talk before the accident, she babbled like a baby.  But we would make her noises and she'd do them back to us.  Well today Jon made some of her noises to her and she opened her mouth and tried really hard to make them back to him.  This went on back and to for about 30 minutes which is the longest she has ever stayed engaged with us.  The longest time by far, the most before was maybe 5 minutes and she usually was upset when that was happening.  She had seemed to do something like this when she was upset over the last few days even with tears but this time she wasn't upset!  She was almost playful.  THEN she did something we have not seen since the accident.  She began to move her legs.  Now she has had movement called "posturing" which is not good movement.  It is movement that shows a person has terrible brain damage.  Basically all the limbs move at the same time in a kind of drawing up movement.  This was different, she moved one leg, then the other leg at different times and nothing else moved!  That was HUGE!!!!!  She has been much more alert just in the last couple of days too.

We are thrilled!!!!   To be honest, we are trying to stay balanced here, we've been told there could be slight improvements but not to expect any type of change from the cortex part of our brain, just maybe some changes in the brain stem activity.  This looks like above the brain stem to us.   One thing we had also been told with Selah since she already had development delays, it made matters much worse as far as possible improvement.  We had also been told since she went so long with no change, that made things even more bleak.  Usually if they don't see change/some recovery in 2 or 3 weeks after the accident , chances are the recovery is not going to come.   Doctors tell us these things, because that is the way it usually is, they see it all the time.  When I worked as a probation officer, I'd have folks say all the time that they would never get in trouble again and you knew....they probably would....  Why did I know it?   Based on experience...so that is why the doctors tell us these things, it's based on what they have seen and experienced with the brain and near drownings.  They don't tell us these things to upset us or make us cry but to prepare us for what the probable outcome will be.  I truly get tired of negative remarks about doctors, they are not all bad.   I can accept that diagnosis based on medical facts BUT I know we and so many others are asking, begging the God who created this Universe and everything within it, to touch and heal Selah.   When I looked at the scenery today, all I could think is that I know the One who created Niagara Falls....He walks with me through the valley of the shadow of death and I am not afraid!   What a comfort!!!!!

We still don't have our plans for moving Selah.  During this whole time, I've not been in a hurry for her to be moved back to Florida.  Our family is here together and where my family is, is home to me.  I don't' get homesick at all.  We feel she gets better health care here than she could in Florida.  Then last week when we thought we were actually going to go, I started getting ready to go and was looking forward to going home.  But honestly I have truly learned to be content and I'm fine, even living in this rather uncertain state...seems like I've been in that particular state alot this year LOL!  We had to be really flexible as we waited to go to Ukraine and then again once we were in Ukraine....then we waited on the kids' appointments to come up here....really having to "go with the flow"  So I'm fine with that...who knows what is going to happen now?  Maybe she will recover enough to go into the rehab hospital here...?    I do have some friends working on the situation in Florida and I have a few plans if that doesn't work out of getting the media and our congressman involved if necessary but hopefully it won't be necessary! 

We are just trusting God tonight....thank you for all your prayers, please continue praying for our sweet Selah.  She has a long way to go.....we are so thankful for the small steps she has taken and are just praying that they continue!!!!!!

Encouraging Words

Today we had some positive comments.....

Her OT (occupational therapist) said that she is seeing good signs in just the past few days.  She sees little glimmers of Selah:) 

Then when I went over tonight, she was more awake than usual.  She seemed to be opening her mouth like she wanted to babble at me (she didn't talk before this, just baby babble)  She didn't seem upset and ehr heart rate was normal when she was doing it.  Then she started sticking her  tongue out....well she used to do that when she wanted a drink!!!!!!!!!!   So they brushed her teeth and wiped her mouth out and she quit doing that,  (she can't drink right now because she doesn't have a cough/gag reflex)  The nurse thought that was also what she was wanting.  The nurse hadn't worked with her in over 2 weeks and she was just amazed at how much more engaged Selah was with us!!  She also said that others are saying the same thing.  What a wonderful uplifting way to end the night:)

We have never gotten such encouragement since this journey started!!!!  

Today I spoke to the person who coordinated the study Selah was participated in at the beginning when she was on cooling sheets to lower her temp.  We have some paperwork/interviews to do as part of the study.  The coordinator assumes that she will be unable to come back here next August for the follow up appointment at the one year mark.  No one expects her to be able to travel or change from where she is right now, but something just rose up within me and I could see us returning with her and her being back to normal....  time will tell.....

Please keep praying for Selah!!!  She still has a long way to go but she is headed in the right direction, 

Ronald McDonald House Thrift Sale

A reminder for my readers who live in this area...

Ronald McDonald House is having their annual thrift sale at a warehouse located at 773 Elmgrove Road.  It's right off of I-490, really easy to get to....

today it's open all day and from 5-7 pm everything is 20% off
Tomorrow it's open from 10-4 and everything is 50%
Saturday is fill a bag for $7!

We went yesterday and I bought some sweaters and a pair of jeans for me and Jon, a case for Steve's game system, a Lego Xbox game,  and some great books all for about $40!   What a fun way to help and all proceeds go towards their yearly budget.  Ronald McDonald House of Rochester NY ROCKS!  They are such a great organization...if you can't make it out, think about giving to them so families can be helped. 

You can give by sending a check to
 RMH
333 Westmoreland DR
Rochester NY 14620

All I ask if you give, give in honor of Sam and Selah....I'd love to hear that RMH got a huge donation in their honor!!!!!!!

This house and the one in the hospital that we stayed at for weeks stays packed, so many stories, and families on difficult journeys....no one is here on a vacation.  The staff and volunteers here are beyond awesome, you just have NO idea how we are loved and cared for!!!

So if you can help them in any way, know you are helping so many many families who come here not knowing what their outcome might be,  It's so much more than just a place to stay.  If we could afford to stay in the nicest hotel in town, we'd be alone...here we are surrounded by loving people, it lifts our spirits so much. 

We are so thankful for the Rochester RMH!!!!!!