Four weeks ago....

Four weeks ago, Selah grimaced for the first time, since then she has improved a little every day and everything has been a step forward not back!  Thank God!  We really did not think we'd see any improvements with her.  It was hard to hope....but we just trusted in our one true HOPE!  We knew God would substain us somehow....  there is no magic formula, no seven steps for a healing, no special scriptures to quote, no special prayers...just a faithful God to walk us through whatever life throws our way.  Selah still has a long way to go but she has come a long way.  I'm so glad that we have a God that we can trust in regardless of our circumstances. 

Today she was GRUMPY!  But that is a good thing!  She pulled her hands away when I was clipping her nails!  The great thing is she only moved the hand I was working with at the time.  I got her up in her car seat and worked with her.  She swallowed 6 times that I saw while she was up , about an hour or so.   She had two different OTs working with her since her main OT was off today, so she ended up with two sessions:) 

Jon was with her tonight and was really working with her and her mouth movements.  She got angry at him too.  Selah actually moved her face away from him when he was moving her mouth.  She was also obviously watching tv, to the point the nurse remarked on it   It's so wonderful to see her make changes and that they are constant day after day....

The doctor came in and said everything is on track with the study, she should start next Monday:)  We can hardly wait!!!   I am so impressed with Strong's and how they have worked with us!  Tomorrow we are having a team meeting to discuss everything and our future plans....I'm so thankful we can make future plans and that we have hope of recovery and are seeing some recovery now!

Tonight we have a hurricane going on outside!  Being from Florida we are used to heavy rains and 40-50 mph winds HOWEVER we are NOT used to it being in the 40's in weather like that!  BRRRRRRRR!   We ran out to mail our absentee vote and to go to Walmart around 3pm and it got progressively worse while we were out.   See our picture in the parking lot getting ready to leave to go vote!!!!

Humorous story....Sam was in bed asleep, he woke up and came all the way down the hall to where we were at!   I can NOT believe he did that!  At home he sleeps in a crib, here he sleeps in a twin bed!  So he got up and got the door opened by himself.  He is too grown!  We were laughing!!!!!!  but now we have to really watch him!

Listening to my husband talking with some families....one family had a blood marrow donor from Europe, one family had a kidney donated to their child and we had the cornea transplants from two different donors for Sam.....thank God for individuals and families who donate organs to help others!!!!!

Please keep praying for Selah!!!!  Every day is exciting!!!!!!  We never know what new thing she will do!  it is wonderful!!!!!

HOPE

Church, Red Robin's for lunch and now laundry for me, nap for little ones and Jon is at the hospital with Selah.  She is up in her car seat and Jon says now all afternoon, when she looks with her eyes, she turns her head every time!   She is such a fighter!  Her having this much head control is new, just a few days ago she started moving her head and now we are getting used to it:)   So thankful!!!

Hoping to have all the details done soon so she can start the study.  I stalked the Internet last night and found out alot of good stuff.  This study is amazing!  I can't believe it is not used more!!!  There have been 7 people treated with the massive amounts of fish oil, all have come out of  their comas with varying motor skills issues.  The one who had a brain injury that is more akin to Selah's (the miner) he seemed to have no lasting problems!   Today Jon talked with the wonderful doctor who is working on the study at Strong's.  She is working to get the study pushed through and thinks Selah will start the fish oil by next Monday.  It usually takes about 3 MONTHS to set up a study and they are setting up a brand new (to the hospital) study in just 2 WEEKS!  That is amazing!  Have I said how much I like Strong's Hospital before???   We will be having a "tean meeting" on Tuesday at 2 pm.   This will be a much happier team meeting than some we have had!  Some were rough, to say the least.  With this meeting, I am looking forward to it!

You know that old saying "the harder the fight, the sweeter the victory!"  it's so so true!  We prayed & hoped for recovery from the beginning and would have been thrilled with it BUT having to walk out our faith through the darkest of days has strenghten us.  It makes these little victories mean so much to us.  As I've said many times, God does not bring bad things on us, we live in a fallen world but He can be there with us through the heartache.  Nothing is sweeter than God's presence in the darkness!  Nothing!! 

We still don't know what is going to happen but we do have hope that Selah will recover some more!  We had been told a few weeks ago (before much had changed) that we could expect a little recovery in the next 6 months to a year but only a very  little brain stem recovery was expected.   I asked one of the staff last week if what we were seeing was the "very little recovery" and that staff said NO Selah was having consistent daily recovery of skills, that was building step on step!  It's happening faster than what would have been expected:)  You know I clutched that close to my heart!!!!!

There is so much thankfulness in my heart, you just don't know...we still don't know what the final outcome will be nor how everything will work out logistically for us to get home...but we know that God is on the throne and in control.  He has worked many miracles for our family in the past year....soon (Nov 6th) will be the anniversary of me "refinding" Sarah's picture and staying up all night...and then us beginning her adoption.  God has had complete control in our lives over the course of this year.  We've felt like clay in His hands...  We had no idea what was ahead but with each step, God was with us! 

I want to thank our home church Grace Church for supporting us emotionally and spiritually through this year!  Everyone got involved in our adoption, whether they gave, came to the baby shower, fed our animals, took care of the church grounds/church while we were gone....and NOW....we have nothing but support, the church is thriving, (we are a small church but a faithful one)   we've had friends fill in for us and we are thrilled to hear all the good reports.  Not one person has complained or whined about us being gone....thank you all so much!  God will bless you for having a heart for orphans and former orphans and for your pastor!!!  We love you all!!!!!

Today is 12 weeks since we arrived in Rochester....12 weeks of trusting God and leaning on Him in a way I've never understood before.   I can say God is Good!!!!    But I want you to know, EVEN IF things had not improved, God would still be good!!!!   I can promise you I had very little hope of Selah's recovery in the beginning.  I didn't go around claiming her healing....oh I prayed....but I didn't try and say I just knew God was going to heal her and that the doctor's were wrong.   I wanted her healed (and still want it to continue) but looking at her still little bod, day after day, was enough to make me wonder if the Emergency Room Doctors had tried too hard in bringing her back!   But I held on to God, NOT God's promises, but GOD Himself!   I determined I would not charge God foolishly, and I would not put Him to shame.  Not that I thought that would be some key to bring her back.  I knew that Life & Death is in God's hands and I had no control over that.   But I determined for my sake, my husband's sake, my family's sake, my church's sake and for the witness I would or would not be that I was just going to lean on Him!  I've gone through another valley (that I'll be blogging about soon) where I did charge God foolishly and hardened my heart....I did NOT want to repeat that valley and the consequences of that valley!

Over the years, I've read many different Caring bridges pages, of people we met over the years, friends of friends, etc... Unfortunately many of the children & adults I have followed have passed away.  Honestly I'm absolutely am not reading anymore of them but I'm still following a few that I've known for years.  The posts have been extreme, from families claiming healing and being devastated when their loved one passed, or  families who had gotten very bitter and a very few that really inspired my faith in God.   One that I am reading right now, is so sad and bitter.  I am not judging anyone, I've certainly been very bitter in my life before so I can't point fingers or say someone is a bad person....but it is sad.  Why do we humans, carry on with our lives doing our own thing BUT when tragedy hits, all of a sudden it is God's fault???  We don't thank him for all the easy years...but boy do we lash out when life gets hard.  Instead we should throw ourselves on God!  What a different experience I've had with Sam's entire life and Selah's accident, than I had with the twins. 

Can I just ask you, read the BIBLE, see that God doesn't promise us a rose garden nor a perfect life.   Read and understand WHY sin/death entered into the world.  God didn't cause it, man caused it.   But God is the One who walks with us through the valley!  Isn't that amazing that we can serve a God who will be with us through the hard times?  What a wonderful God we serve!

Link to the CNN story on fish oil recovery!!!!!

http://www.cnn.com/video/#/video/health/2012/10/22/sgmd-omega-3-tbi.cnn

Finally found the video on the fish oil recovery!  Can NOT wait to get Selah started!!!!!!

Ukraine's Forgotten Children (BBC4 documentary) HD

I encourage you to watch this video.  It is not where my girls were at but it explains many things about orphans in Ukraine and how much need there is!!!

Saturday night Selah update!

Selah had another great day.  No storming for more than 36 hours.  She is averaging  a storming session about every two days now.  That is great, there was a time when it was almost constant.  She has come a might long way thank God.  The good thing NOW when she storms, it is generally just her heart rate that goes up.  She doesn't seem to have spikes in her blood pressure at all anymore!  It's been a couple of weeks since she has had to have extra meds!  That is huge and an answer to prayer.  Many near drowning patients only get worse with the "storms".


She swallowed several times today.  We got her up and in her carseat.  She was up for almost an hour with no head support.  Obviously the car set has a little support but it is her toddler car seat, so it doesn't have much, unless her head was to really go from one side to the other.  She moved her head side to side a lot during the time she was up, mostly to escape me!   I cleaned her ears out and she moved away from me from both sides and was not happy with me at all.  

Since the accident, we were told she could be deaf and blind.  We knew she had stated following us with her eyes and now with head movements.  We also believed she could hear.  Well today I was straightening up the room and fell over the trash can, Selah woke up from a sound sleep, jumped and made a face like she was crying!  No hearing issues here!!!

We bought these cute little animals that are kinda beanbags and can be heated in the microwave.  We use them to help her legs relax.  I found another little heat up thingy that I'm using too.  It has really helped her.  I am looking for one of the travel pillows that look like a U that goes around the neck that can be heated.  We have several we've been using but we'd love to get one that heats up.  If anyone can find one, let me know.  She is much more relaxed.  Her arms and hands are in really good shape.  Her legs are much better but not back to normal.  At one point, her knee literally were so tight that they looked like they were going backwards.  Like the kneecaps would come out the back of her legs...OMG that was so hard to see!  She is much better than that now!!!!  Her ankles are movable but her toes still point down but she can be worked with now,  At one point, they were telling us to prepare for the stiffness to get worse and that the meds would probably stop working1!!  Thank God we are far from that now!!!!

I need to find oneof the neck pillows  in a store...on top of everything else, our debit/credit card got comporomised about a month ago at Walmart so it was cancelled. Thankfully our bank has a business relationship with a bank here so we can withdraw money but we can't get a card until we go home and go into our bank.  So I can't order anything on line

Thank you friends, I have 2 friends sending me one!  So she will have a spare:)  thanks so much!!!!   Heat is something that is used in the rehab hospitals, I didn't know it but started using it with Selah on her legs and her therapist told me that was what was used to help a rehab patient's limbs relax before therapy.   That was cool.  I'm always trying to think of things to help her.  All the years with Sam has taught me alot too and we have all kinds of therapy things back home...but I'm not there yet:)

We are still waiting for her to get started in the fish oil study.   Both doctors seem motivated to see it happen asap but there is red tape to get through....  can't wait till it gets started!  I keep meaning to go through some articles about it and post some of them, I just haven't had time to lately but soon!!!!  There actually have been 7 brain damaged individuals in the study (the two in the article were the big stories) but ALL have seen significant improvement!  I am going to read the studies tonight (maybe)

We are bracing for a storm!  It's been cold and drizzly up here already thanks to a front in the area but we might (oh I hope) get hit by a snow storm!!!  We want to see some snow!  I 'd love for the boys to go snow tubing!!!

Please request prayer tomorrow for Selah, pray that this progress continues and that the fish oil study will be started without a hitch and it will work perfectly for her!  thank you all!!!!!!!

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!!!!