LONG emotional day......Plans....

We started this day with hope! 

First Jon called me to tell me that Selah was again expressing displeasure quite clearly in being set up in a chair,  Third day in a row!!!!

 Then I had an 11 am conference call with Neumour's Hospital in Orlando.  To put it mildly it was a FLOP!  They only wanted to offer us some type of nursing home facilities in the Orlando area.  We were not looking for that nor are we interested in that at this point.  I felt the doctor tried to intimidate me by telling me that our insurances would not pay for her to be transferred to a hospital with the same amount of care that she had been given.  The idea being she should stay at the first hospital until she was ready to go home or to a nursing home...  Well I thought that was wrong and thankfully after talking to staff here, it is wrong!  So let's just say I burnt a bridge LOL  I have no desire to deal with them again after that call.  What a waste of every one's time, especially mine to try and push on us something we do not want.  Makes me really wonder ......

So at the same time that was going on, I was also calling St Mary's Rehab here in Rochester.  We arranged for a doctor to come in and examine her.  We had hoped for her to get some specialized care at St Mary's.  But they refused her case,said that insurance woulnd't pay since there was no goals that could be reached.    Basically she is considered too non responsive....  We asked alot of questions and got some hard truthful medical answers.  Both fs us were able to hold it together until the doctor left the room....  To be honest, despite the advances she has made, there is no medical hope for her to recover. 

So our plan is to go to Lakeland Regional, they have accepted her and arranged for therapy for her.  We do know the staff and think highly of their pediatric floor.  We used to be frequent flyer's with Sam there for many years.  It looks like she will be transferred early next week.  We will drive down and she will be flown.  Our sister in law will be there for her and take care of her until we get there.  Thank God for family, that you can depend on!!!  It will take us a couple of days to drive, we have to do eye drops and diaper changes...and that slows us down. 

So it's been a long emotional day for us.  I feel "wrung out"   On top of it, our debit/credit card was compromised by a hacker, through some store up here and our card got cancelled!  Just to top off the day....

So although we have been given no earthly hope, despite what we see as recent gains. our hope is still in the Lord who made heaven & earth.  That has not changed despite the tears this day has brought.    When the doctor walked out of the room, we just broke and sat with tears running down our faces, the weight of the world on us but gradually PEACE came through the darkness.  I can not explain it to you, it defies words...even now typing this with tears, I have the peace of God.  This is not the end...  Although we are heart broken to leave Rochester like this, to know our daughter is being flown to another hospital and there is an empty car seat in our van, we can still trust God.  When I think about how it is going to be, my throat clutches up so hard I can't hardly breath but God will be with us.  

If God never did another miracle or anything else for us, to have this peace is worth more than anything else in this world.  When I hear of tragedies, I often think "how does that person live?"  If you are wondering that as you read my blog, just know the only way I can live is the Grace of God.  It is very real to me, never once in these past 7 weeks have I been alone...  From the moment I saw the ambulances, police and fire trucks down the road and took off running towards them, God has been with me.  Those first few awful moments will never go away from my memory, my prayer was "God Help, God Help"  I just prayed that over & over again  and He did help....  He is our very present Help in times of need.  I have found that to be oh so true. 

All I can tell you is this is real, I think I'm in shock over the peace of God but it is a real peace that does pass all understanding....  doesn't sound too spiritual to say that I'm in shock from the peace of God but I am.  He is a good God. 

So please continue to pray for Selah, pray that we will see more and more responses...pray that all the right plans come into place.  We want her to be in the right place. 

So we are ending this day with hope also...our hope is in God!

My faith is in God..

 

This is a picture of Selah I took today.  She was sitting in her chair following me working with her with PT.  She did great today and responded when she didn't like something I did.  The attending doctor was there for some of it and she said Selah was showing real emotions!  While we hate for her to be unhappy, she definitely let us know she didn't like working out!!!  And that is great that she could show us that.   As you can see she was worn out by the workout! 

So we have had two great days!  Selah still has a long way to go, please know that but we are seeing some positive things happening!!!  Please keep praying that she will continue to improve and that this is just the beginning of a recovery for her.  Doctors still don't give us any promises of improvement but they do acknowledge this as a good sign!  This has been consistent and that is important but there are many areas we need to see improvement in.  What worries me is the there are somethings that are very basic that she does not always do....please pray that all areas will improve!  


Our trust is in God, not what God can do for us but in God!   If she doesn't improve beyond this point, God is still good.  We will still trust Him.  If she is 100% healed, God is still good.  I was talking to someone recently and trying to explain to them our faith is in God.  We are trusting God NOT trusting God to heal her....do you understand what I am saying?   We are not trusting in the promises of God...  Our trust is in God NOT what He can do for us.   What a peace we have, we are not striving or trying to "work" out her healing in our strength...we are not healers....no man is....but we trust the Healer.  Oh I ask Him many times a day to touch and heal Selah but I also thank Him for being with us and for all He has done and just for who He is. 

I do remind God of the parable in Luke 18 1-8   

18 Then Jesus told his disciples a parable to show them that they should always pray and not give up. ² He said: “In a certain town there was a judge who neither feared God nor cared what people thought. ³ And there was a widow in that town who kept coming to him with the plea, ‘Grant me justice against my adversary.’

⁴ “For some time he refused. But finally he said to himself, ‘Even though I don’t fear God or care what people think, ⁵ yet because this widow keeps bothering me, I will see that she gets justice, so that she won’t eventually come and attack me!’”

⁶ And the Lord said, “Listen to what the unjust judge says. ⁷ And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? ⁸ I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?”


I love this parable....I can relate to this woman!   I cry out to God day and night to have mercy on my daughter.  I dont' pretend to have some great  knowledge that God is going to heal her.  I don't  claim it....but I put my hope and faith in God and I will not be disappointed.   I will not be disappointed either way....because I know there is coming a day in the very near future when all my children will be healed...my hope is an eternal hope, not a temporal hope based upon what happens on earth! 

What amazes me is the Christians who don't understand this hope...they are so focused on the here and now, thinking that God promised them a rose garden....it's sad.   Of course I want my daughter restored but I can trust God whatever the outcome is....He is the author and finisher of my faith.   I can say this past year, has been a year like no other in my life.  I have seen the greatest joy and the greatest sorrow all within the last few months.  I have seen God move in unbelievable ways...and all I can say is my faith is in God, the creator of heaven and earth.  He is the One who has lead me thus far and will continue to lead....

On the way home from Ukraine, we flew over Poland and the beautiful Polish Mountain region,  there was so many emotions going on in my heart.  I just remember my very soul realizing that the same God who had created the mountain  and land we were flying over, the land that had so much of man's history on it, was the same God who worked out every detail and provided everything we needed for our adoption.  It just shook me to my core.  You know how you have those moments when "eternity" is in your heart and for just that second, you can grasp the depth of God , for just a second in time....that was one of those moments for me.   So I have been to the mountaintop this year.....and I have been in the very valley of the shadow of death...but I will not fear...

What can I say about God....He is real!  Going through this valley makes me look up....I look to Him.  And it is so sweet....there are not words to describe the "knowing' I have in my heart.   I wish I had the words to adequately explain to you what is in my heart.  All I can say is I am so very thankful for the Peace that passeth all understanding, the peace that is there when my heart breaks, the peace that only God can give. 

You might ask how I got this peace...PLEASE know I am NOT some major perfect Christian. far from it...let's just say my husband calls me Peter sometimes.....and if you don't get it, go read your bible.  Peter was a hot head, he cursed. he was a mess at times....but God used him.  I've gone through valleys in my life...but there came a time when I decided I was just going to trust God NO MATTER WHAT happened...and when I did that, all heaven broke loose in my life.  No I didn't start running the aisles or shouting but I had something that carried me through things that not many people had walked through....I grasped God and I grasped eternity and realized that no matter what happens in life we have that Blessed  Hope....  When I grasped that truth deep in my heart, I was able to face uncertain times with the assurance God would see us through.   And He has!!!!  God has been nothing but faithful to us!  That is why I can praise Him in the hardest time of my life.  

  I encourage you to reach out to God.  Get to know the real God.  Don't listen to some preacher that is going to tell you life is just going to be perfect for you.  Read the bible, study it with a commentary,.  too many preachers today on tv and in pulpits want you to think you can command your destiny, that you can even command God....I dont' want to serve a God I can tell what to do to!!!!  I want a God that is like the One in the bible, who is above all things...not some weak God who does my bidding....I serve a God who is the God to the hurting.  A God that came down to earth and was "a man acquainted with sorrows"  One who holds the earth in His hands....but one who listens to a mother's cry.....

I've included an old song in the link below.  It was sung alot when I was a child.  I remember it being sung with much more fervor:)  But I love the words.....


"I'm trusting to the Unseen Hand that guides me thru this weary land.
And some sweet day I'll reach that strand
Still guided by the Unseen Hand'


http://www.youtube.com/watch?v=Pt0jokat9SY&feature=fvwrel


That Unseen Hand has guided me without fail for many years and I trust Him to continue to do so! 


The conversations between the new hospital Nemour's and here are continuing and we are really excited about all we have read about them.  It seems this might just be the right place for her.   We should have an answer in a few days. 

So please keep praying for Selah, all over the US and all over the world.  Lift her name up to the throne of Grace, for us.  Thank you so much!!!


 

Great News!!!!!!

This morning during PT, Selah grimaced, opened her mouth as if to say no (she can't really speak above the trach right now) and cried!  This is HUGE!  Of course we hate that she was upset BUT it showed that she can show emotions which are a response "above the brain stem"    We are so excited and hopeful!!!

On top of this great great news, we were contacted by a staff person through a friend.  A new hospital is opening in Orlando, Nemour's Children's Hospital.  They have the same team approach as Strong's does.  Sam had seen the geneticist there and she gave us his correct diagnosis after us wasting our time with another one for years!  We had an appointment for both girls to be seen last month that we unfortunately had to cancel.  We did not know another hospital was being built. we just thought it was a doctor's group associated with other groups.  The conversations back and to between hospitals have started and we should have an answer by Wednesday if they will accept her.  If they do, she will be their first patient.  They are known for their research and their academic team approach.  We are thrilled and think maybe this is the reason we never got a response from Lakeland.   It will be harder for us as a family as Nemour's is the farthest of the hospitals in our area that we have considered but this might be the absolute best place for her.  That is what matters the most at this point. 

So our prayer today is that God will touch our baby and help her have more real responses!!!!  And that He will open the right door for us in Florida.  I had been praying that if there was somewheres else we should take her that it would be made clear to us.  We are so thankful for his guiding hand through this dark valley. 

This is a real roller coaster ride for us, some days are just wonderful and some are not...today is a GREAT day and we have renewed hope for Selah!   I can't wait to go over there later, as we take turns staying with her.  I hope she will give me some responses!!   Thankyou for your prayers!!!!!!!

Letchworth State Park

 

we have a picture taken at this same spot 5 yrs ago...the boys are so much bigger

 

Today we went to Letchworth State Park south of Rochester, we've been here over the years and it was very nice to go hike the trails.  Today was  a gloomy, almost raining cool day, I love weather like that!  Sam did great and walked all over and climbed most of the many stairs around the falls.  Wish I could download more pictures but my blog just won't work with me!

 

Selah is still doing fine, she's relaxed, the meds are working.  She is now the most stable that she has ever been since the accident.  We are thankful for that but we still are asking for prayers for her! 

 

I have some blogs that have been rolling around in my brain...I'm too tired tonight to even think straight!  Today was a good time to think and walk around in God's creation, really makes you realize how small you are...  And to see the beautiful creation...just makes you think how beautiful heaven will be!!  We love State Parks and National Parks, we go to all that we can when we travel.  We've been to Letchworth several times and just think it's great!   It's such a beautiful place!

 

 

Saturday Night update

Today has been a good day for Selah.  The meds are working to relax her and she is not storming at all, that means no vibrating/shaking.  Her limbs are much less stiffer.  Her sweet doctor was happy that she responded as well as she has but he warned us that normally folks with this type of brain injury will eventually get to the point that the meds may stop working and she will stiffen and start storming again.  We are thankful for today!  She seemed a little responsive to me tonight and that always makes me happy. 

We got the van serviced today so we are ready to start on our way home when we get the word...don't  have any idea when but we still think it will be next week...we are waiting for the response from Lakeland Regional.   There seems to be some concerns about them taking her.  We hope they will because it would be so much easier for us if she can go there! 

As always please keep praying for Selah!  More than anything we want our sweet girl back to us!

Quick update Friday night

Selah is the same, stable... Her blood pressures are still a bit high but good for her compare to what she has had. She seems to be more relaxed & calmer so the new meds are helping her to relax. Jon worked with her today on range of motion, we'd not be able to do much lately because she was so stiff. We actually were afraid we'd break a bone or hurt her in some way. PLEASE keep praying for her!

We think she will be transferred next week but we don't have a date yet. 

This morning Steve & Shad worked with the RMH staff and volunteers to put in a garden for Make A Wish at the RMH.  they put in bulbs that will come up in the spring.   The boys are so used to working hard on the church yard, our yard and the garden that they were shocked when they were done in 30 minutes:)

 

Go Steve

 

Steve & Shad

 

A Ground Hog!!!!!

we see them all the time and just "ooh & awww" over them.  Guess it's like a northren seeing a gator...or maybe not LOL

 

View from the back of the RMH

we came in the summer and it is most definitely Fall now!!  It's been in the 40's at night and today was cold and rainy.  We kept asking if it was going to snow and everyone laughed:)

Parenting style

"Think long and hard about the way you invest your children's time. Time is treasure. And where your time investment is, there you will find the heart of a child. Invest the majority of his time in entertainment, and his heart will be turned to love of pleasure. Invest his time in peers rather then family, and his heart will be with the peers more than his family. There is a time and place for all good things in balance, but wise parents will steward the treasure of time, and in so doing, shepherd their children's hearts." Doug Phillips

A friend of mine put this on her FB Wall and I thought this perfectly described Jon & my parenting ideas....

When we first started out as parents, with just one child ( I can barely remember those days lol) I stayed home with Steve for almost 2 years and we just took hm everywhere with us.  He was an easy kid plus I didn't want to owe any favors to have to return babysitting HAHAHAHA!  Remember I've never been much of a kid person unless they are MY kids!   Then when I went back to work and he started preschool, we worked our schedules around him as best we could.  I'd try to get to work as early as possible & lots of time not take a lunch so I could pick him up early.  Jon would go in at 12 and work till 8pm so he didn't have to take Steve until late morning.  So we worked things out so he spent the most time with us and the less time in preschool.  I think because we felt our time was limited with him, we spent as much time as possible with him. 

We never got into Boys Scouts, or even our church's scouting program too much.  We didn't do team sports things with him, he was more like us, he didn't like team sports so we didn't push it.  We really focused on the three of us.  Then after Sam was born, we were even more of a unit, we had to travel alot for Sam to go to different doctors and we just always took Steve with us.  Even tho things were crazy for us, we invested the life we had into them. 

As our family grew, we began to understand more of what we had been doing somewhat unconsciously.  We then,  began to consciously make sure that our family time came first, not just in our lives as parents, but also in the lives of our kids.  Which meant, we purposely chose how we spent our time and we guarded it. 

When a child is always involved in other things like sports, clubs, friends, whatever, their hearts can become so focused on that, to the exclusion of the most important thing which is the child's family.  Up until the last 50 years or so, the family unit was honored, kids stayed close to home, they didn't have the distractions that families have today.  We've sought to create that type of family   Unfortunately even the church is somewhat guilty of splitting the family up, with babies going in one direction, kids in another, teens in another, woman in another, men in another....that makes me uncomfortable . We worship together as a family, that happened somewhat accidentally as I wrote in another blog.  Our children's pastor went off to be a missionary to Spain & then no one else ever worked out.  We began seeing the benefit of our children sitting in church and decided that was probably the best way for our family.  It's worked for all of church history until the last few years when the church world decided to start splitting up the family into various age groups. 

We took Sam and Steve us to Ukraine with us and my biggest regret is we didn't take Shad.  He has a scholarship through Step Up For Students for our private school and we were afraid we'd be gone too long and he'd lose it, as he can only miss so many days.  Now he may have lost it for this year, we hope not but we will have to wait until we get home to see what can be worked out.  We could have sent Steve and Shad home when all this happened but we've learned that it is important for families to share memories, even harder memories, in order to bond.  We've always traveled "as a tribe" (except for Shad staying home when we went to Ukraine)  It's harder sometimes to do things, especially the more kids you have, but honestly it is worth it to invest your time in your kids.  They may see the good, bad & ugly but it's reality and it's  what prepares your child for life!

So our focus has always been spending time together, making memories together, even in the mundane things and the big things.  We treasure our time together and think it has helped to center our older boys.  We all do a few things individually, on an occasional basis but the focus stays on the family time. 

We even purpose to spend time together when we are home.  We make a point to eat supper together every night NO tv!  We also usually watch a tv show or dvd together at night.  Even while we are here, we are doing that.  We bought some DVDs, a few Madea's and "In the Heat of the Night" series, so we have something to watch at night. 

One thing I do regret is EVER buying any video game systems!!!!  IF we were doing things over, we'd probably never would have bought any!!  So if you have little kids, I'd advise you to think long and hard about it!  I think it sucks the brains out of kids!  After much working/talking we got it down to only ONE game system, an Xbox 360.  So we don't do Gameboys or anything like that.  If we go out, I want the kids to learn to sit & talk with the family, not spend time away in their minds & attention.  We also wouldn't allow them to text at the table either.  I truly HATE all things electronic, most kids can't seem to regulate their time or keep any type of balance. 

So I encourage you, spend time with your kids & have them spend time with you.  Cultivate them, otherwise you will lose their hearts.  We have worked hard at it.  It has been a bit of a struggle at times but we have preserved and it's been a good thing.  We all enjoy each other.  I believe we all find our time together as our "centering" time.  The kids may not put  it like that but I think it helps them be more stable.  Certainly, even with our little ones, they seem to be glad to be together.  It's worth it, especially in hard times, it's good to look back at the memories....it helps make us a "unit"

I don't believe that crap "it takes a village to raise a child"  BALONEY!  It takes a FAMILY to raise a child!!  I didn't go through my awful pregnancies or our crazy adoptions for anyone else to raise these kids!!  I have seen the "village" and I don't want them raising my kids!