Wednesday, October 31, 2012

Happy Halloween pictures:)

Selah says Happy Halloween.  Cute little bunny:)   She rode in her stroller and did the parade in the hospital:) 

Shad dressed as a Star Wars Sith and went out Trick or Treating with some volunteers from the RMH who have become our friends.  He had a blast & enjoyed getting to know their grandson.   they went to a RICH neighborhood......All he got was GOOD stuff LOLOL  Nothing from the big "no name" $5 bag LOLOL  All name brand candy:)  My kids were really impressed:)  All good chocolate and only ONE Smarties LOL
Jon was with Selah all day and she did great.  She participated in the Halloween parade in her stroller and was alert throughout.  Tomorrow morning we are having our team meeting.  Looking forward to it!  Can't wait till Monday to start the Fish Oil study!  We feel like we are just in limbo till it gets started:)
I took the kids with me to go thrift shopping.  At the Salvation Army, Wednesdays are 1/2 price day:)  I got a ton of stuff for everyone for just $30:)  Everyone got something but Shad this time.    You just never know what you are going to find. 
Then we went to a Halloween store to get Shad an outfit.  He was so excited to get his outfit and light saber:)  While we were there Sam was looking at some things hanging on little posts, moved forward and poked his bad eye.  It started bleeding in the eye.  It was his bad eye,  he really doesn't have sight in it.  Even still I was almost passing out along with the worker!   I was able to call Dr A and take him right in.  He came in and looked at him and said it looked like the cornea got nicked.   There is no problem,  and it should be fine.  Even tho Sam can't see in that eye, I still don't want anything to happen to it or it get infected!  We go back next week, just to make sure.  We've never had an accident with his eye before.  I really need to make him start wearing his glasses if for no other reason than to protect his eyes!
We got one of the neck pillows today for Selah.  I had to try it out for her:)  It's great!  Thanks Gracie and family!!!!!  It's great and very heavy, can't wait to use it on her tomorrow.  It being heavy, gives her stability.  I'll post pictures tomorrow:)  Another friend is sending one also.  I can see using it on her neck as well as her legs. 
Most nights a group or a family brings in a meal to the RMH, tonight not only was the food great but so was the family!  The kids and their friends played with Sarah and Sam.  All the girls are planning a future in working with Special Needs kids and adults.  The mom does infant massage, and other things and she is going to volunteer to do massage on Selah.  The girls want to watch the kids:)
Hope you had a good day....please keep praying for Selah!

Tuesday, October 30, 2012

16 years ago

16 years ago today,192 months , 832 weeks ago, 5840 days  ago we said goodbye to our twins....

We were shocked to find out I was pregnant again so soon after having Steve, remember we were the ones who had waited six years for a child. He was just 7 months old.   But to our shock, I took a pregnancy test before mouth surgery....and another ....and another ....and they all said the same thing...POSITIVE!  The man at the same drugstore down the street from us in NYC finally told me I needed to believe what I was seeing and quit buying up all his pregnancy tests LOL

We were thrilled and from the very beginning I "knew' it was twins.  I dont' know how I knew it, I just did!  On our 9 week checkup, they did a sonogram and sure enough, there was baby A and baby B!   It was an easier pregnancy than Sam, I didn't throw up as much thank God.  At 19 1/2 weeks I did the AFP test (alpha fetal protein)  It came back showing one child could have a neruo tube defect.  The doctors weren't too worried since the test was a bit late and I was carrying twins but they did send us to a high risk doctor and a geneticist.  So first we saw the geneticists and determined that there was nothing on either side of our family.  Then a week later we had our appointment with the high risk doctor and was having a major ultrasound.

That morning as we were leaving, I drank a bunch of OJ because I hadn't felt much movement and I was scared.....

In the office we had a screen and the tech had a screen.  As soon as the tech put the wand on my stomach, I knew the first baby was dead, there was no movement and I said "he is dead" then she moved to the next baby and I said "he's dead" and then threw up  (my response to stress)  the doctor came flying in .....One baby did have Sevres spinal bifida....

It took another week before they got me into the hospital for the surgery.  I did not want to go through labor.  I had a D &E I was already 22 weeks when they died so I was much too far along for a regular D&C.  After they took them I began to  hemorrhage

Disseminated intravascular coagulation (DIC) is what I had.....
Disseminated intravascular coagulation (DIC) is a rare, life-threatening condition that prevents a person's blood from clotting normally. It may cause excessive clotting (thrombosis) or bleeding (hemorrhage) throughout the body and lead to shock, organ failure, and death.
In DIC, the body's natural ability to regulate blood clotting does not function properly. This causes the blood's clotting cells (platelets) to clump together and clog small blood vessels throughout the body. This excessive clotting damages organs, destroys blood cells, and depletes the supply of platelets and other clotting factors so that the blood is no longer able to clot normally. This often causes widespread bleeding, both internally and externally.  We've been told that 99% of people with it die.   It was a miracle that I lived.  '

To top it off, there was some tainted blood that got into the NYC blood supply.  In that same month two people had been affected at the same hospital I was at!  So for years after I had to have HIV testing....

It was an awful situation in every way.  At that time we lived in NYC and were very alone with no family near us.  I went through the deepest depression of my life and had it not been for Steve, I would have been glad to die....  No one understood the pain I was feeling.  I even had a minister that we began working with tell me to "get over it" on the way to a service where we would be sharing about the new ministry we were helping to launch.....Let's just say I  can not write on my blog my response to him!  It was a very cold night!  LOL  what a great Job's Comforter huh?  Needless to say he did not attempt to give me any more advice!  Pretty sure he thought I was demon possessed....

I walked through the deepest darkest valley of my life during the next few years.  I was so angry at God, at everyone to be honest....I questioned everything I had ever thought or believed.  I wanted those babies!!!!

One of the main reason I think I struggled so much was that although I had good theology in my head...I had been influenced by the Pentecostal/charismatic bad theology that teaches if we are serving God our life is going to be great.....we're protected....

Now if you'd asked me if I believed that, I probably would have said NO!  But I think subconsciously I did believe that....

I can remember going down the list with God and showing Him how He was so wrong to have let this happen to us.  I listed all the good I had done, and how I had served Him faithfully...Didn't He know we were leaving in the middle of Brooklyn NY, making nothing...just to serve Him?  

See I had never had good in depth teaching about suffering.  I was raised Pentecostal and I can tell you that Pentecostals like to tell you of the Victory In Jesus NOT the suffering in Jesus.  You don't get too many amens when you talk about suffering.  So although I had good theology, in my mind were all those sermons over the years about how God will do miracles, part the Red Sea, give you back your dead....  I even had a nice but weird guy lay hands on me and pray that God would bring the twins back to life.  That freaked me out quite a bit to say the least....

So in my heart of hearts, I felt God had let me down.  So I decided to run away from God...and run I did......for years.  I didn't try to be up in people's faces about it but I wanted to be left alone.  Please remember I was still a preacher's wife.   We moved home just a few months after we lost the twins and Jon went to work for the Department of Corrections as a chaplain and I went back to work as a probation officer.  Steve was little and Jon had to work on Sundays often so I was able to stay out of church most of the time. 

But during those years, I always felt God drawing me back to Him.  Sometimes I would cry out to Him, sometimes I'd rail at Him.  It was not a pretty time, really hard on my marriage.  Somehow I worked through it all, got a true picture of what the BIBLE teaches, not man.....And I began to see God is a God that is close to the broken hearted.  The bible says Jesus was a man of sorrows, acquainted with grief.   I began to see that God was not responsible for the evil in the world.  Man had made the choice in the Garden of Eden and the affects of that choice effect us today!  I began to see that God rarely delivers us FROM things but rather THROUGH things.....I looked at the whole NT, so much suffering by the greatest saints.  Ten of the disciples got martyred for their faith, God didn't deliver them....What an eye opening experience! 

So I learned all that to be given Sam....I am honored to be his mom and wouldn't change a thing but it was ironic to me.  BUT I had gone through all those years for a reason, this time, I was not going to fail the test.  I was going to trust God.  Since then I've been "blessed" to have many other times when I had to make the choice to trust God and not get bitter.  Obviously I am going through the hardest trial yet.  Again I chose to trust God and not get bitter!!  So let me encourage you to look to God, see Him for who He is, not for what man says He is!  Don't be influenced by faulty preaching or even worse "down home theology"  like my famous hated saying "God won't put on you more than you can bear"  That is no more biblical theology or even scripture than "Twinkle Twinkle little star"   Know God for yourself. know His real promises not something written in a little "promise book"  Be acquainted with the real promises of God AND REAL RESPONSIBILITIES of a person hoping to hook up with those promises.....  Nothing kills me anymore than a person who is "claiming " God's blessing yet is living in sin according to the same bible they are trying to claim the blessings from.....  For example if you are living with your boyfriend, don't expect God to bless your finances....OK, you understand what I'm saying?  You can't have the blessings without the cost...and the blessings may not be the blessing you want. 

Selah update.....
She "stormed" a bit more than usual today but didn't require any additional meds.  She was still consistent with her reactions.  She has never regressed any since she started to progress.  Some days she progresses more than others. 

We did not get to have the conference with everyone today but we did get to touch base with all the main players individually.  ...

The social worker (who should get a medal for working with us)  has sent 80 pages to the rehab in Florida to see if she would be a candidate, we found out there is a Ronald McDonald House there that works with that rehab center.  We won't be going right away but we need to get things planned.

The therapist (who is wonderful) was great with Selah today.  She is always encouraging.  We were talking about rehab.  The rehab here requires a person to be able to participate for 3 hours at a time.  She feels Selah is up to 2 hours at a time now and progressing!  She also explained that Selah has responded so differently than most kids with NDs (near drownings)  Instead of her "drawing up" she has extended her limbs.  She told us the term for it....can't remember.  By extending it actually has helped her.  She also said most NDs begin to respond from the feet and it works it way up the body, with the head being the last thing to respond.  Selah has done absolutely the opposite.  Who knows WHY? 

The doctor (who is so focused and helpful)  came in and just sat and talked with us.  I'm going to try and convey some things we talked about...  We were told from the beginning that if there were no changes within 3 weeks from the accident, then it was unlikely there would ever be any real changes.  Well it was almost 8 weeks before we saw much of anything.  I asked about that and she said that that is the standard BUT they've seen changes in folks far out from that time frame but it was not likely.   I also asked if her delays that she had before could have caused her to be more sluggish to respond and she said she wasn't sure but it could be a possibility, although some things like the gag/cough should be there regardless.  We talked about the fish oil study  and how it might affect her and how soon,  It seems to be about a month out that the big changes start taking place but that is not to say we won't see things before then.

Tomorrow the study goes before the review committee and hopefully by Monday all her testing will be complete and it will go into her system!  I can't wait!  Then her blood levels are monitored to see when the inflammation level is down and the Omega 3 is up....and when it reaches a certain level that is when we should see change if there is going to be any..  (we think there will be)

So please pray there is no problem with the review board, that the fish oil gets here. that we go to the right rehab, and that the fish oil works!!!!   Lots of exciting stuff....

One last note, I will never forget my twins, although I never met them.  I am looking forward to that day we will meet......

Monday, October 29, 2012

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 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!!!!!

Sunday, October 28, 2012


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!!!!!

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

Saturday, October 27, 2012

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 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 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 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!!!!

Thursday, October 25, 2012

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'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 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 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 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 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!!!!


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! 

Wednesday, October 24, 2012


I get lots of 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 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 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" 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'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 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....

Tuesday, October 23, 2012

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......

Monday, October 22, 2012

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!  

Sunday, October 21, 2012

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!!!!!

Saturday, October 20, 2012

The Best Day Ever....

That's a silly Sponge Bob song but 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/ 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!!!!