Precious Day......

 

All of us together again....

(Steve is the tall one in red, Shad is the one in black, Sam is the short one in red, Selah, Jon, me and Sarah)

 

The FIVE greatest kids in the world!!!

 

Today after church we took the kids to see Selah.  Since she had tested positive for MRSA we had only let the kids go to her door and look in but since the MRSA does not seem to be active, we allowed them to go in.  I was not prepared for how emotional it would be....  Shad just broke down and laid his head on Selah's pillow and wept.  Steve cried and cried also, he was just heartbroken.  Watching the boys was  literally heartbreaking.  But at the same time, it drew us all together.  I was so proud of their love for their sister.  My heart was breaking yet full of love at the same time.  We all prayed together as a family.  We were able to talk about the future and  reaffirmed our family ties & commitment to walk together, whatever the future holds.

 

Shad wanted to go and get his birthday money and buy her a present.  He bought her a dog and took it back to her.  I love my kids!!!!

 

Tonight we met some new families...two families both with daughters with Down's have been following our story and praying for Selah!   What a blessing!  One little girl will have surgery tomorrow, pray that it will go well.  The older girl, 13 years old she proudly told me, has a rare disorder and is being treated for it.  Pray that she will respond to the treatment!

 

Also a friend of mine who was so supportive of our adoption was diagnosed with a brain tumor and has already had surgery.  Her name is Angie.  She invited me to speak at her church last year and the church gave a big offering to our adoption.  She was even there to welcome us home at the airport, she has two adopted daughters and some older children.  Angie has worked tirelessly advocating for orphans and adoption.  She has worked with the homeless and they are deeply involved in their church. I'm saying she has been faithful to God and to the things that are close to God's heart.   Pray that God will touch and heal her completely!  

 

Many needs....please also continue to pray for Selah!

Pray for Atticus

Please pray for Atticus.  His family flew over with us and adopted him at the same time we adopted our girls.  They also adopted another little girl at the same time.  They've adopted before and were in the process of adopting two more kids.  What a sweet family.   Today he was unexpectedly diagnosed with leukemia...I am just heart sick for this family and for little Atticus.  They are started a long road today....please pray for all of them!

Selah had a rough morning, she seemed upset while in her seat.  She started shaking and  I put her back to bed.   She fell asleep and just had sleepy day.  Once she was in bed, she did better. 

It is COLD up here today, will be in the 30's tonight.....we keep hoping for snow:)

Thank you for your prayers today. 

 

Zoo Day

 

at the Rochester Zoo

 

Steve and his friend

 

Jon and me at a Ukrainian church...brought back memories.....

 

 

Today we did an interview for the Rochester newspaper.  As part of the interview we walked down to where the accident happened...I saw the tree that saved my children's lives...it was just a scrawny little weeping willow, with a small branch hanging over the canal,  Before I had thought is was a larger tree that was further down the canal.  I saw what a miracle it was that Jon was able to grab it, hold on and keep the children's head above water!   I was afraid that walking back there would upset me but it really made me feel grateful for their lives being saved!!!!  The thought just washed over me how God had prepared that tree many years ago to grow....it's an insignificant tree but to us, it was a life saver and a huge part of the story of their rescue!  Wish I'd had my camera with me! 

 

We took the kids to a small zoo here for a couple of hours today and had a nice time walking around and looking at the animals.  They had what we call "swamp birds"  Cranes...that made me laugh!   The animal we liked seeing the most was the chipmunks they have here.  We don't have chipmunks in Florida so we kept trying to get a decent picture of them:)  We saw an Ukrainian church from the highway and had to find it to go by it.  We had hoped it would be open but it wasn't.  Reminded us of the beautiful churches we saw in Ukraine, 

 

 Today Selah's nurse was very positive as she feels she sees some changes in her, that she is more alert.  That makes us feel good when others can see changes too!  Her music therapist also seemed to think she was more alert also and told Jon. We love hearing anything positive!   Tonight Jon took my shift over at the hospital and I'm on duty at the RMH:)  But I miss seeing Selah!  It's hard to juggle our time here to do some things together as a family.  And there is always one who is missing....  the first few times were just gut wrenching...and it still hurts to see that empty spot at the table...  Looking forward to the time Selah will be able to be with us all the time.  I dont' know how we will do everything but we will figure out our new "normal" 

 

Please keep praying for Selah!!!!!!

Stable just waiting on transfer date

Selah remains stable.  She seemed alert today.  Her nurse felt that Selah was more alert than the last time she had her.  We love to hear things like that from the staff.  We are waiting on all the arrangements to be made for her transfer.  Please pray that  everything falls into place for her. 

We all are doing ok.  The kids actually love being at the Ronald McD House.  They will miss being here when we get home.  The staff/volunteers and other families are just so great to be around.  There are several families who are "long timers" like us (although I think we at almost 8 weeks are the longest residents at this point)  We all talk and keep up with each other's journey.  What a blessing Rochester Ronald McDonald House has to been to us and so many others....  We've always loved it here but now I know there will be tears when we leave after this journey!  We've been loved & supported so much...what a blessing!  Steve & Shad are totally spoiled here!  Sarah and Sam seem totally happy too.  Sam has continued to grow up.  He loves riding the elevator and tries to walk to it every time he can!  Sarah is so close to walking, she has grown up so much too.  The other day I figured out that of all the time we've had her and Selah, they've been up here 1/3 of their time with us.  Despite the fact that Sarah was just getting used to us and home, she has had no issue at all being here.  It's like she is just like me, as long as my family is with me, I am Home!   People ask me if I'm homesick for Florida...and to be honest I'm not since I have my husband and children with me.  Of course I love our friends and family in Florida....(don't worry!)  but I've just learned to be "home" wherever I am as long as I have "my tribe" with me!!!!

So we are just waiting for the next step, the future is so unknown but we know Who holds the future.  Several times today I have had to remind myself not to be afraid....God is with us.   We've been in a "bubble" here and we are used to the hospital and how things are done and now everything will be changing...UGH I HATE change!  I'm a snob when it comes to health care....Rochester Strong's is really top of the line....I will probably be comparing everything from now on to Strong's ....  and I don't want to leave that security! 

Thank you all for your prayers for Selah and our family!  We so appreciate it!

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!!!!!!!