Friday, November 30, 2012

Selah Clanton Makes Surprising Recovery Ch 13 news story!

Selah Clanton Makes Surprising Recovery

I love this it is so positive!!!

Day 26 Fish Oil study

I can finally say with assurance in my heart that Selah is waking up....

I hesitant at times to say things because I am such a realist but the last two days I have seen so much emotion from her.  Whenever I come in her room she lifts her head and shoulders off the bed and leans toward me.  This afternoon when I came in, she did that and I sat on the side of the bed and held her.  Then I put her down and she made a "cry face" and lifted her head and shoulders towards me, so I picked her up and sat in the rocker with her!!!  She frowns at the nurses. she listens to Jon on the phone and turns her head whichever way I put the phone.  Tonight she has been moving her left arm/hand while holding on to a toy I put in her hand.  I've never seen her do that.  She is doing a movement similar to what a baby might do with a toy for the first time!

It is amazing to us! 

Her therapist says she feels daily a difference in her body and how she holds herself up....

ENT came and saw her as there was concern about her vocal cords.  Our ST felt maybe they had been damaged but they looked fine.  Ortho came in and did xrays on her feet to give us a better idea about the surgery and care she will need.  Her ankles have remained tight no matter what was tried.  So she will probably have to have her tendons cut and some botox to give her full range of motion. 

She still keeps spiking fevers so it looks like we won't be going to Florida on Tuesday.  It will probably be put off a week, so now we are looking at Dec 10 or 11th for her to leave.  What she has now is considered viral pneumonia, if it is even pneumonia.  She only gets a fever once or twice a day usually early morning.  She has lots of gunk that I have actually enjoyed suctioning out:)   She manages to get alot out of her trach on her own and we have to clean that too.  It is good she is bringing it up on her own at times. 

So no "storming" for 26 days:)

We are so thankful and happy:)

Tonight we had snow, about 1 inch and the boys played on their sleds!  Finally!  The LOVE the snow and now want more!  It had snowed so much that we changed our plans.  We had planned to go to MT Morris to eat supper with our good friends but were a bit concerned about driving in the snow so we stayed here.  After we ate and played in the snow, I was able to come and spend time with Selah:)

Watching the snow tonight, walking in it, remembering the crunch of the snow under my feet, and feeling the brisk air was just wonderful and magical....then thinking about my little girl who is starting to want her mommy to hold her, it just was almost more than my heart could bear!

I just thank God for these wonderful changes.  And I thank all of you who have carried Selah's name to throne of God on a daily or even more frequent basis.....  We have trusted God through these past almost 16 weeks and He has been more than faithful to us!  But even if these changes had never come, God was still faithful to us.  He is a faithful God, through the good times and bad times.   I've never felt God under girding like I have during this time, from the very second I saw the ambulances and started running, He has been with me! 

I just want to encourage you, no matter what you are going through, to give it to God and lean on Him.  He will be your strength.  If you read through my blog, you will see how God was with me and He can be with you just like that!  He is no respecter of persons, He doesn't love me anymore than He loves you!  I'm no special spiritual christian....I can promise you that....   I'm a mess and a half and will be the first of many to say that!  I don't think my prayers were so perfect and full of faith that God just decided to do something for us.  I think if anything we've been like the widow woman in Jesus' parable in Luke 18

The Parable of the Persistent Widow

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?”

So that was the bible verse I clung to in the darkest nights...  And please don't think that this is some sort of doctrine to get something from God, I am also not saying that!  But when we prayed we prayed and left it with God.  We did not demand anything from His hands, we didn't claim her healing, we did not speak life to her body.  We simply asked God to have mercy on us and on Selah.  I for one, do not believe God owes me anything as a Christian.  To believe that is to say He owes me more than He owed all the saints of God of the past 2,000 years who went through torture and heartaches....  In life we will all have trouble and heartache.  It amazes me how we take for granted God when everything is going good but let something bad happen, then all of a sudden we are mad at God and blame Him for every bad thing in the world.  Recently several people have said things like that to me....they are so mad at God.  When God didn't move like they wanted Him to do, then they go from ignoring Him completely to blaming Him.....

Folks, God is not a genie in the bottle.  Now you might say I can sit here and say this because my daughter is getting better.....let me tell you I've been in plenty of situations where the outcome, was not the outcome I wanted but yet I knew God was still a good God.   Through this whole time, God has given me the strength to put one foot in front of the other....there were days I actually thought my heart would break and I would go blind from crying. I did not want to talk to anyone on the phone, I couldn't eat,  I grieved....and I wan not convinced that she would get any better.  Oh I hoped so but I am a realist to the tenth degree....and I've seen alot of things medically, so I had no false hopes. 

What if she would have died or never ever responded to us?  I still knew the God of this Universe was with us and I had the eternal Hope of Heaven and I knew one day she would be whole.  That is what I have clung to.....and that alone and the fact I do know the God of this Universe and I walk with Him.  I don't mean that pridefully but humbly.

Let me tell you, the peace of God is worth putting down any sin for!  There is NOTHING that compares to it.  I don't have the words to describe it, but I am so thankful for it!  To be able to know that there is an eternal hope beyond this life and that I can depend on God no matter what comes....what a blessing.  It's not worth hanging on to bitterness, it's not worth anything on this earth!

There is still a long road ahead for us but we will have God with us.....  thank you for your prayers for our girl and for us also to stay strong in our faith!






I will post the ABC interview as soon as it comes on line, it was great and our doctor was so positive:) 

Thursday, November 29, 2012

Day 25 Fish Oil Study

This was an eventful day!

First Selah....although she still has a slight fever, she did great in therapy.  she is handling her secretions good which is important.  Her therapist shared with me that she sees daily improvement with Selah.  Today she needed just minimal support  to sit on the side of the bed.  She can tell that Selah is doing most of the work.  Selah is also clearly showing when she does not like something.  She will push back, away from the therapist. 

When I walked in today Selah lifted her head and both shoulders off the bed and leaned in towards me!  I love it, that is usually reserved for Daddy:) 

We had a telephone conference with Brooks Rehab today.  We just had some concerns and wanted some answers about how things will go.  I clearly shared WHO Selah was BEFORE the accident so that they all understood she was NOT  a typical eight year old.  She has gone through alot in her life.  She has the language barrier, the institutional issues, and the developmental delays against her.  I must say I feel they put alot of effort into the conversation.  All their main staff were there, head of nursing, head of therapy, the doctor and several others.  The way Rehab works is you only stay as long as you meet goals.  It is totally dictated by Insurance....all the rehabs we have talked to have told us that.  Their average length of stay is 19 days....to me that is not even time to get to know a child much less help them!  Of course every case is different and we will be advocating for her the whole time.  I think I was able to clearly tell them who Selah was and what we want.  They were very responsive and positive.  Our doctors were in with us on the conversation and really encouraged us. 
The Rehab asked that ENT see Selah.  The speech pathologist who has been seeing Selah feels in her gut that there is an issue with her vocal cords.  They may have been damaged when she had her breathing tube put in or it could be a result of the accident, that that area of the brain that controls the vocal cords was damaged.   So ENT is going to scope her and get a good idea of what is going on.  Having an answer will let us know how to proceed in her speech therapy.

So the plan is still to go next Tuesday unless she still is having fevers then it will be put off until  December 10 or 11th.  We will see what she does.  We want her to be as healthy as possible for the trip and so she will be ready to participate fully in therapy.  Right now she is still a little off....

We did an interview with the ABC station here, it will be shown at 10 pm on Ch 16 on the local cable or at 11 pm on Ch 13 (ABC) on FRIDAY night  He is also going to contact the national ABC and send them info for us for Extreme Home Makeover:)   It was a positive interview, they have all been.  Sometimes talking about the accident and the aftermath is a little hard.  Sometimes it blows my mind at how far we've come...it just stirs up emotions in me.  We still have a long way to go!  Please keep praying for our girl!

Many things happening in the adoption world....

Yesterday a friend of mine son passed away.  You can read his story here http://bringinghenryhome.blogspot.com/2012/11/henry-is-finally-home.html
We are all heartbroken for this wonderful family who loved this little guy so very much.  His mom Carla has been an encouragement to me over the last few months and she is passionate about adoption.  She is the one who told me about the need the Basas family had....  so please say a prayer for this family.  We know Henry is with our Lord but the pain is unbearable to them!!!  If you'd like to give towards his funeral expenses, here is how you can give http://networkedblogs.com/FkBQQ

My sweet friend Vera is home with their new daughter!!!  Joey & Vera "lost" two children they were interested in adopting and then God brought them across this sweet girl's path....she just got home yesterday http://specialingredientlove.blogspot.com/

At the girls' institution there was a little girl that stayed with us as much as possible.  Her family to be got all their paperwork in yesterday....so happy for them!   So happy for her!!!!   She has waited for so long!   Thank God she has a mama and papa coming for her.... The last time I saw her she was sitting on her bed crying because we were leaving with the girls...now she has  family coming for her!!!!!!        http://reecesrainbow.org/48954/sponsorsayer





Wednesday, November 28, 2012

Day 24 Fish OIl study

Today was Jon's day with Selah.  She loved her new Sesame street DVDs and paid attention to them during her rest times between Physical therapy, Speech Therapy and Music Therapy.  She was busy today and still a bit under the weather.  She seems to have fevers first thing in the mornings.  She isn't kept on Advil or Tylenol so we can see if she has a fever and not just over medicate her.  It's hard for me when I don't go over to see her but she loves her daddy and I don't think she misses me:)  She did fine during therapy but nothing new.  We feel that she is understanding more than she can show at this point and when you factor in not feeling good you just want to rest.   So please pray that she will get better and that her brain will continue to repair itself.  Thank God she has had no storms now for the whole 24 days!  That is such a blessing to her and to us because it was almost more than we could stand to watch her body like that!!!!  It's hard to stay positive when we don't see any new changes.  There is a part of me that is afraid that she will "come out of the coma" but will never progress beyond where she is.....when I get afraid, I have to remind myself of that woman in the mall....she told me that there was something big ahead for our family, and NOT to be afraid, and many will see.....(this was back in May ~for my newer readers)  I keep telling myself that when I find myself paralyzed by fear of the future.  I truly thank God for that woman and for that word!  It has carried me through some dark times. 

I want to thank you all for giving to the heating system at the mental institution the girls were at in Ukraine. Thanks to everyone who gave, and the anonymous matching grant, the need has been met! Thank God we loved all the children and adults who were there and were very worried about the heating system. The building is a post World War 2 building and it needs repairs but thankfully no one will freeze this winter! I have so many dreams for that place....so much we'd love to do one day! Actually my dream involves us living and working there....God knows what lies ahead but when I find it hard to sleep at night, I lie awake and think of all the things I'd love to do there and in the neighborhood surrounding the institution. One day we had to circle around a different way leaving the orphanage  and we passed a brand new Jehovah Witness building. It looked like an American built one. We were told that is the only "church" in the area.... how sad!

Here are some pictures from near the institution we took them on "gotcha day" as we were waiting at the bank.


 
People getting water from a water truck.  The town of Torez itself only has water an hour or two a day.  The area around the orphanage is way outside of town.  It is much harder for the residents to get water.  I heard that no one had water for several days just recently




 
These pictures are of us at the outside market.  that is the only store in that area. 
 
So pray for that area of Torez Ukraine.  It has my heart....I told Jon I could have my orphanage and he could have his church:)   It would be perfect....but God would have to work some really big miracles for that to ever happen!!!  We all have dreams, that is mine.....
I

Tuesday, November 27, 2012

Day 23 Fish OIl Study

Day 23 of fish oil, and Day 105 of hospital stay....105 days since this nightmare began.......

So she has this spot on her lung that they are assuming is pneumonia since she has also had a few fevers.  The various doctors have had various theories...one says it seems to be viral, one says maybe it is bacterial and another one thought it could be aspiration from her having liquids during therapy.   That  theory bothered me the most because it would mean regression.  Now we do have proof that she had aspirated yesterday but she ate at least 1/4 of a Popsicle and is sick so....we think it was just a one time occurrence.    Well tonight I think the mindset is it is NOT aspiration pneumonia, probably viral since she has been "off" for a week or so.  She is on antibiotics just to be safe.  Right now she is allowed to taste things with her tongue, we're just not really going to feed her anything. 

She wasn't as into therapy this morning and I missed our therapy session this afternoon so I didn't get a video.  Maybe on Thursday....

Believe it or not I suctioned her trach out about 4x today.  This is big for me, as much medical stuff as I have had to do, trachs just gross me out and I get lightheaded and once almost passed out.  I'm just trying to think of it as a high tech way of getting boogers out!  LOL  I love to clean noses....I have a thing about cleaning out the little kids' noses and they hate it!  So that's what I told myself today and I did ok.  The first time, I felt a little dizzy after but then I was ok!  The other times were fine:)

OK for the very best news.....Selah's blood work from the first two weeks of the fish oil study is back!   Her inflammation level was 15~ not super high but far above what it should be.  They wanted her to be in the 1.5 range....she is at 1.1!  Her doctor says now her brain should start healing!    The idea is the inflammation in the brain is down, gone, and now the brain should be able to start healing itself:)   I asked the doctor directly if she ever thought Selah would walk again and she says she sees no evidence why not:)  She cautioned that we have a long road ahead of us still but we are totally going in the right direction.  She said Selah has come much further, in a relative short amount of time than anyone here ever thought she would!   She didn't not respond really at all until week 7             day 5 ....and then it was not consistent.   Tomorrow is the beginning of week 15!  She is so much more consistent now! 

So I was feeling quite down until we got the blood work in and talked with the doctor.  Now I feel more encouraged. 

So please pray for her, pray that this pneumonia will resolve and that her brain will heal quickly!

 
My two favorite Chinese......LOL

 
Sarah and me
 

 
The men in my life!
 
 
Selah trying to push out of her chair!  When I wouldn't help her she turned her head all the way to the other side so she didn't have to look at me.  My goal was 1.5 hours in the car seat:)  We made it
 

Monday, November 26, 2012

Day 22 Fish OIl Study

Well, in many ways today was a great day.  Selah was very responsive and worked well in therapy.  She held her head up.  She moved quite a bit.  She swallowed different things.  No fevers....BUT after therapy when a nurse suctioned her there was a question on whether she had aspirated some of her Popsicle.  No one knows for sure but as of now she is off anything by mouth until she has a certain test (can't remember the name of the test`nothing easy like a swallow study of course....)  so we are having that set up. 

Every doctor I spoke to yesterday said the little spot (that no one is 100% sure is pneumonia) was NOT from aspirations!  It was in the wrong spot for an aspiration type of pneumonia. 

We are not too worried about things, she is doing so well over all and with therapy.  I am planning on videoing her tomorrow during therapy so everyone can see how well she is doing.  Please keep her in prayer!!!!

The plan is now....for her to be transferred next Tuesday on Dec 4th.  Well see......that will be our 112th day here.  It's hard to think we will ever leave and we're kinda ok with that.  We'd like to leave her with the same child we came here with....

Sunday, November 25, 2012

More Snow pictures

Me on the deck of the RMH with snow!!!
 
 

Steve's first snow ball
 
 
 
Winter wonderland

Shad had a blast making snowballs  this was his first one.  He slid all over the deck and used up all the snow LOL
 
 
 
 
this Florida car has some snow on it!
 
 
Can you tell we are excited about the snow:)
 
 
 

Day 21~ Pneumonia


 
Selah is half asleep in this picture.  I had Jon on the phone & put it to her ear and she turned her face towards the phone:)  she tried to get as close to it as possible.   She loves her daddy!


It's official Selah has pneumonia.  It is a small suspicious spot but she did spike a fever this morning and we know she has been battling a cold since last weekend.  Probably if she was up and moving she would have not gotten pneumonia but thankfully this is just a small spot and she should be better soon.   She is not requiring oxygen and even is just using her "nose"  Please pray for her that she will have no complications!

Of course this changes things, we won't leave until she is over this, probably 7-10 days.  I can't say I'm sorry that we aren't leaving!  I really want for the doctors and therapists to see Selah as she recovers.  So if we leave next week, she will be at 4 weeks on the fish oil.   Maybe we will see some significant changes by then.  That is my hope!

So please continue to keep her in prayer!!!  Thank you so much!

Saturday, November 24, 2012

SNOW! Day 20


 
My oldest playing in the "snow"

Shad had some snow on him but you can't see it
 
 
 
 
Sarah and Daddy
 
Sarah and mommy

Selah had a good day.  Jon was with her today.  She was up in her chair and frowned at the nurse as soon as she came in LOL.   She had lots of good head movement today and her cold is a little less:)   she watched Sesame Street on the DVD player too. 

We had a little snow today, we made the best of it....we want more snow:)

Please keep praying for Selah....Monday will be three weeks on the fish oil.....we are seeing some progress we want to see more!

Friday, November 23, 2012

Day 19 Fish Oil Study

 
Yes Selah is watching Sesame Street on her DVD player!!  I bought that DVD player "in faith" the first time she grimaced and we could tell she was "waking up" some!  Now I love to see her watching it!

 
I thought this was a cool picture last night before the Thanksgiving Dinner at the RMH with all the kids at the table...reminds me of that picture I've seen before of the table set in heaven:)
 
 
So today is a quiet day for Selah.  She has lots of mucus that she is getting out.  She is coughing some and just blowing it out of her trach.  She just has a cold nothing serious but you can tell she doesn't feel like  herself.   That picture of her is for real, she is actually watching the video.  She turns her head when she is done.  She watched it through two times then turned to the other side of the bed. 
 
I know alot of folks don't understand how she could be considered to be in a coma now since she looks so normal.  Well think of it this way,  have you ever had drugs for a medical procedure?  I did for a colonschopy earlier this year,  after they were done, I was still "out of it".  But I was talking some....but my brain was altered.   That is not exactly how she is but that is a good comparison.  Comas have different levels to them.  She is in a very light coma right now.  There are times during the day that she is not responsive even with her eyes open.  It's hard to explain and I didn't understand until we lived through it...
 
 
We still don't know if we are leaving on Tuesday or not....we are supposed to find out on Monday.   How's that for keeping it real?  
 
Thanks for all your prayers and please keep praying for Selah! 
 

Spend yourself in behalf of the hungry

This morning I got an email from the director of Life 2 Orphans, the ministry that cared for my girls in the institution.  The heating system in the institution is broken and will cost approximately $1,500 to fix!  This is a desperate need!  Winter is coming & they have HARD winters, often with snow up to the 2nd story of the orphanage.  Can you PLEASE help out with this????  There are 90 bed ridden children like Sarah was and another 150 delayed/physically challenged children like Selah was....plus another 100+ mentally & physically delayed adult women there!  You can give through  http://www.life2orphans.org/cms/  just put on your gift what it is for and they will make sure it gets to Torez as soon as possible!!!!!!  Thank you for considering giving to this!!!!!!  And if you have a spot to mention, that you gave in honor of the girls I would LOVE to hear that!!!!!!  

Another need is this sweet family...    http://reecesrainbow.org/41836/sponsorpatterson-2
they only need about $2000 more to be fully funded and they have a travel date!  http://hiskindness.wordpress.com/  this is their blog!  Their son Igor has physical handicaps and for awhile it was thought that he was at the girls' institution.  Read their blog and see this families heart!!

I want to tell you about the Basas family, thanks to you guys and others they are fully funded!!!!  They have not opened their blog yet but I'm sure they will soon and I'm sure they will have a story to tell!  But thank God and you all who helped in any way, there will be one less orphan.....   http://reecesrainbow.org/?s=Basas+family   if you keep checking back here on their site, when they open their blog it will be shown on there. 

I just have to testify about giving...I hesitate to share this because I don't want someone to think we're so spiritual or that we're trying to get brownie points or something...  BUT I want to tell you how God works.  A few days ago, we felt led to give some money to a family here.  We gave it and today someone gave that same amount back to us!   I'm not trying to say God will always give you back to the penny exactly what you give away BUT God is faithful and He is the one who keeps the books....  I know this is a cliche' but you can NOT out give God.  Especially when you are giving to the needy...

We have always tithed, we have to, my husband is a minister and it is required in our denomination.  God forbid if you don't...and I have NEVER liked it.  I will just be completely honest...I still don't but I love to freely give.  I don't mean I don't like tithing but I don't like being required to give to our headquarters, I'd rather give to my local church.  I believe in tithing and giving above that.  I feel it is a great discipline to have in our lives.  But this has always been a sore point to me!   We've never been "well off" even when I worked full time but I will tell you a paradox, we now live on less than we ever have before and have FIVE kids  and yet we have more....isn't that funny?   We have to depend on God and we try and listen to Him and be "opened handed" and God has blessed us more than ever in our lives.    Our "joke" is forget the "name it claim it" forget sending in money to big ministries, forget all that and give to orphans or better yet, adopt a few and God will blow you away!   We don't really understand it and we certainly don't try to make a doctrine about it but it's been true in our life.  There are many scriptures that talk about giving to the needy like this one:

If you do away with the yoke of oppression, with the pointing finger and malicious talk, and if you spend yourself in behalf of the hungry and satisfy the needs of the oppressed, Then your light will rise in the darkness, and your night will become like noonday.
The Lord will guide you always; he will satisfy your needs in a sun-scorched land and will strengthen your frame. You will be like a well watered garden, like a spring whose waters never fail."
Isaiah 58:9-11


I don't know about you but I want to "spend myself on the behalf of the hungry"  That is my heart's cry.  I'm so over the fluff of this life....I want to live real and to spend myself, my life for others.  I have a dream of doing that full time, I don't know if that will ever happen given the circumstances we are in right now but I pray that one day we will be able to do that....  I have a dream....

So I just want to encourage you to give to good things, good works...both of the needs above are good things to give to.  If you give to the orphanage, then you will be a part of keeping orphans and disabled adults warm through a bitter bitter Ukraine winter.  If you give to my friends  the Pattersons, you will a part of bringing home Igor, a child who is disabled, who has no future where he is now....those are good works!!!!  Between the two needs we only have to give $3,500.....that's nothing in the scheme of things here in the USA.  We are still the richest nation on earth.  Our poor in America are richer than about 90% of the world....  we are a blessed nation but we need to be a blessing!!!!

Thank you for all you do....




Thursday, November 22, 2012

Happy Thanksgiving! Day 18 fish Oil study

 
Selah with daddy!!

 
Mommy with Selah.  There are her animals that we heat in the microwave to bring heat to her knees
 
 
Well last Thanksgiving we had just committed to Sarah.  I had cooked a big dinner (with the help of Publix) and we had some family & our closest friends over to eat.  All we talked about was the adoption and Ukraine.....I certainly had no idea what the next year would bring.  We were giddy about Sarah but awfully worried about her too as we had learned alot of her situation and condition prior to Thanksgiving.  I remember crying, wondering if she was hungry....
 
Fast forward a year.....what a year it has been for our family.  We have seen the faithfulness of God as we have walked through unknown territory.  But God has been faithful!
 
I only remember a few Thanksgivings that have stood out to me...I can not really remember one specific one growing up.  I do  remember one Thanksgiving where Jon & I were staying in a mission's house in Honea Path SC doing fund raising for Brooklyn Teen Challenge and we ate frozen mini chicken tacos....we were young, newly married and quite happy:)  I remember Steve's first Thanksgiving in New York City and the one after that having just lost the twins.  The last two Thanksgivings stand out to me because I did what I wanted and cooked by myself and had folks over.  THIS one will probably be one I never forget! 
 
I've learned Thankfulness in a whole new way this past year....I've learned to give thanks "in any circumstance" whether I was in another  country or whether I was in a hospital room.   I've learned that tragedy doesn't change who God is, I've learned that our family is the most important thing I could ever have.   God has taught me to be content, not just with what I have but in my circumstances. 
 
We had brunch this morning (thank you couponsaremycash.com )  And a church is bringing in a dinner tonight.  Right now Jon & I are up at the hospital.  Our friends Diego & Sandi came by and now Selah and Jon are both asleep LOL  The kids are over at the RMH....  This is not the way I had planned on spending Thanksgiving.  I'm not a huge holiday person....I'll tell you a secret, we haven't had a Christmas tree in YEARS because we were afraid Sam would pull it down on his head.   BUT this year I had planned on a BIG celebration for Thanksgiving and Christmas.  We were even going to do a tree (at the church) for our family.  I was going to get all the ornaments out and everything....    So now I'm thinking that isn't going to happen....but that is ok!   We don't even know where we will celebrate it...but just like today, it may look different than the one I had wanted but that's ok:)  We have each other...
 
While it's been hard, it's been sweet....God's presence has gone before us, He has been our Shield, He has been the lifter of our heads. 
 
Honestly I do not understand HOW anyone can get through life without God, without that hope of eternity.....
 
So this Thanksgiving, sitting by my daughter's hospital bed, not knowing what the future holds, but knowing "it's ok" , I'm thankful. 
 
 

NBC news story on Thankfulness

http://www.whec.com/news/stories/S2842861.shtml?cat=566


Hope you enjoy this.  We always enjoy talking with Ms Adams.

Wednesday, November 21, 2012

Day 17 fish Oil study

This morning Jon planned on taking Sam to the park for awhile since we didn't think Selah had therapy.  Then when he got back, the NBC channel here in Rochester had called and asked if we'd do a segment on Thanksgiving.  It will be on the NBC station tonight at 11 pm.  After they left some friends who are adopting stopped by and then our van wouldn't start again....so it ended up he didn't go over to the hospital till after 5 pm.  I don't think that has ever happened before.  BUT when he came in the room, Selah lifted her head and shoulders off the bed and moved towards him!!!!  She was ready to see her daddy!!!!!!  He called me on cloud 9 that she responded like that to him!!!  She has had a good day and did end up with OT and Speech with some other therapists so that was great too!   Isn't that great how she responded to Jon????  Everything going good, she  just has  a little bit more gunk as this cold works it way out of her system.  I'm so proud of our little fighter!!!

Today was a very sad day at the RMH, a family who is here with another child, lost their toddler to an accident at a relative's home.  Please pray for this sweet sweet family. Their other child had heart surgery today.  Please Please pray for them!!!!  Our hearts are broken for them. 

Another mom that we met here years ago just got the news that her son, who has fought leukemia two times before has had a reaction to the chemo and he is fighting for his life.  This young man has endured so much and was facing a bone marrow transplant.  Please pray for this family that has gone through so much.  The outlook is not good for him and I know they would appreciate your prayers!

Our hearts are heavy for these families that we know, that we have laughed with, ate with, and talked with.  Please pray that the God of all comfort will be with them tonight and give them comfort!  Tonight I am thankful for the comfort of God....sometimes that is all you have.

Tuesday, November 20, 2012

Day 16 Fish Oil Study~ Good day!

So a really good day:)

Selah has a cold, just a cold not pneumonia and the great thing is I picked up on Saturday that something was off.  It's not bad, she has never even had a fever but they are watching her.  Her lungs are clear, no issues.  I'm just happy that I picked up on it and so did her therapist as soon as she saw her yesterday.  That was what had her "off" and it a relief to be honest that that was all that was going on!!!

Selah did lots of good stuff today, she coughed some and the nurse thinks.....she may have gagged some when she was suctioned out!!!   We are going to look for that more.  She did all her usual things and did them well.  Her therapist actually stood her up for the first time and her feet flexed some.  She probably will need surgery & botex in order for her ankles to be normal again but they all feel it is doable.  I don't want to quote the doctor but.....there is hope that she will get to the point she will walk!  There are so many good things that happened today, it's hard to remember all the little points...today felt like Christmas to me:) 

I was able to talk to the doctor some today about her blood work.  She had very high levels of inflammation which is what the fish oil targets.  She was at 15 and needs to be at 5.  Selah had her blood drawn yesterday and we hope to hear by Monday if the level is down.   The doctor feels that she is waking up more.  There are alot of small signs that point to that!  I also asked her how we will know when she is out of the coma since she will probably come out of it with some issues still.  She said for us to look for "purposeful" movement.  We are getting some and today we got quite a bit!  She will have the after affects of the accident, for awhile, even if she recovers completely. 

A VERY big thing is she has had NO storms now for TWO weeks.  I can not tell you what a blessing that is.  If you have never seen "storming" I can promise you it is awful to watch.  I get the impression that people are amazed that they are gone.  As I've said before we were advised that the meds would eventually stop working and she would storm over them.  What a blessing that that has not happened and that they are gone!  This reaction to the fish oil alone maybe a huge thing for other people with neurological injuries.  All I can say is to watch someone you love have a storm is an awful awful experience.  I am so thankful they are gone!!!

Selah is accepted into the Brooks Rehab in Jax Fl.  Our plan is to leave next Tuesday.  But who knows with the weather and this cold if we will leave then.  All the plans have to come together just perfect for this to happen.  I'd be fine being here longer to give Selah more of a chance to improve before we leave.  But I've learned to say "whatever the Lord wills"!

We still are looking for housing for our family in the Jax area, if you can help, let me know.  We are too large of a family for the RMH there.

Thank you all for your prayers!  We have just really struggled the last few days with our emotions.  It was hard because she had been doing so good and then things stopped sorta, and she seemed far away again.  I'm glad that there was a reason, her being sick, that makes sense in the whole feeling of her being "off" and that she seems to be better today.   We were both really struggling with our emotions and some real worries about the future.  Today was like a breath of fresh air in our souls to see her more responsive and to have others point out somethings....it was great!  Please keep praying!!!

Thanks to all who have nominated us for Extreme Home Make Over!!!  I just sent mine in today.  I was not able to download any pictures or videos!  Hopefully they will look on here!!  We are keeping our fingers crossed:)  It would be fun and it would be great to have everything done so our house was ready for Selah and more handicapped accessible for all of the children.



How you can help our family .....

We've had many people who have given to our family during this time and others have asked how they could give.  We've never mentioned our needs and yet God has supplied them all.   We have actually discouraged some folks from giving and just asked them to wait till we got something set up for Selah.

So we  think we have decided the easiest way for us to handle gifts would if you'd like to give, please feel free to give through our church, Grace Church, 7060 Berry Road, Zephyrhills Fl 33540  just mark on it attn: Clanton Family gift and it will go into a fund for our family.  It can then be dispensed as there is a need.  We thank you all and we thank God for His provision through His people.

Another way you can help our family is by nominating us for Extreme Home Makeover!  Evidently this show is back on and some friends have nominated us.  We live in a very small house and it we will need to do some remodeling or move after we get Selah home.  At this point, she will have to have a nurse almost 24 hours a day and a room just for her and the nurse.  We have very little privacy as it is in such a small home.  We have had several offers of help to remedy this and frankly have been too focused on Selah to really pursue anything, although we appreciate it.  Maybe all the folks who wanted to help would be able to get involved in helping through EHM if we are chosen.   So if you'd like to nominate us this is the link  http://www.facebook.com/l.php?u=http%3A%2F%2Fabc.go.com%2Fshows%2Fextreme-makeover-home-edition&h=kAQGvYp21  it's a short process to nominate us.  Our basic info our names....Jon, Yvonne. Steve. Shad, Sam, Selah and Sarah, our address is 7060 Berry Road, Zephyrhills Fl 33540  (don't worry burglars we have an alarm system and a neighbor across the street who is a Vet and he has plenty of ammo!!!   He watches our house for us!   Plus we have nothing to steal LOL)  Phone number is 863 712 1734    our email is   
 theclanton5@aol.com  If you don't have all the details that's ok. 

So I feel a bit uncomfortable sharing about our needs but I am humbled by people's responses to want to help even when we were focused so much on our children that we didn't even think about the future.  This situation has taken all the planning out of me. But now we are realizing some of the things we will need to take care of Selah in the near future and we're thankful for the folks who have wanted to help us.   I've just gone through it one day at a time knowing that God would take care of us.  God has been so faithful to touch hearts to do things for our family.  Honestly as I am reading the book "The Hole in the Gospel" I feel we have so much in a world that has so little.  We've always done our part to do what we can to reach that hurting world and now when we have needed it, others have reached out to us.  That in turn only makes us want to do more for others!! 

But the most important thing you can do, and what you have been doing is to pray for Selah and for us!  You may not believe it but pray is really really what has carried us through!!!   Thank you all. 

Monday, November 19, 2012

Day 15 Fish Oil Study

Another roller coaster of a day.  We've felt since Saturday something was "off" with Selah.  Her nurse & therapist thought the same today.  She was more grouchier than normal.  She did do everything that she has been doing and she opened her mouth as soon as she saw the syringe of chicken soup!  She did some good drinking/swallowing but still just a little bit.  We don't know if maybe she may be "waking up" and that is why she is grumpier or if she is getting sick.  She doesn't have any other issues but something is different....

I get really worried about her today.  Jon was over with her and I just had to go over too.  That helped me alot just to see her.  I trust my "gut instinct" and I had to see her to know she was ok.  She seemed really alert so I'm hoping she is just waking up more.

We also found out that Selah hasn't been accepted into the rehab yet!  We hope to hear tomorrow for sure but everyone thinks she will be accepted. 

We got back to the Ronald McDonald House right in time to be on tv again LOL The PBA had given RMH a $13,000 gift and they asked us to speak and thank them as we came in the door, on tv without even brushing my hair or fixing my make up after crying all day.  LOL  But we LOVE RMH and will do anything for them:)

Some good friends of ours whose daughter has Peter's Anomaly are here for their daughter's eye exam.  Please pray for Abbi tomorrow morning as she is having some issues with her vision and they don't know what is causing the problem and what has to be done.   Abbi was so sweet and prayed tonight for supper and although she is facing surgery tomorrow (at just 7 yrs old) she prayed for Sam, Sarah and Selah that they could all start talking!  How sweet!!!  It is nice to have our friends here!!

Well our wifi is not working here tonight at the RMH but thankfully  our friends have a "my fi" and I'm using it so I can update! 

Please continue praying for Selah and for us.  Jon & I are having a hard time right now.  Please pray for us too.  We're just worried about her.

I'm reading  "the Hole in the Gospel"  and have lots of thoughts for a great interesting blog coming up.  That book has helped me to take the focus off of us and realize how blessed we are even going through this time. 

Sorry this is so disjointed but I'm trying to hurry.  Thanks again for your prayers!!  It means so much to us! 


Sunday, November 18, 2012

Living Loose not Loose living.....(Day 14 Fish Oil Study)

http://reecesrainbow.org/38066/sponsorbasas  The Basas family has $8000 in their account.  They need $3000 more to reach $11,000 which is what they need by Wednesday!!!  Thank you for your help for them, please pray and give if you can!  Help this little boy to come home with his familly!

This was my post on FB today:
Today one year ago, we were officially matched with Sarah on the Reese's Rainbow site .....I got tons of emails from folks who had been praying for her to find a family for years....I remember feeling so excited and overwhelmed with all the love that folks had for Sarah and I was excited and overwhelmed by the task that was before us to get to her....I remember thinking we need $25,000...how will that happen....less than 8 weeks later God had provided every penny....and then some since we decided to add another child. But God....was faithful. Now a year later, we stand again in need of God...and I know He is faithful...His hand has never failed us. We may not ever get the answer we want but nevertheless, God's Hand has never failed us and will never fail us!


I am so thankful for the battles that have been fought and won to look back on.  I'm thankful for God's hand of provision whether it is financial or emotional or spiritual provision.  God has certainly freely given all of that to us this past year.  Even when life is hard, it is exciting to watch what God does.

Right now we don't know what is going to happen with Selah or with us.  This is certainly a transisitonal time for us on many levels.  We feel that God is doing something in us through this situation.  I don't know what that will mean, but we are so open to being exactly where God wants us to be.  And I don't mean just being physically where God wants us to be, we maybe where God wants us to be physically at home.  God can use circumstances to clean out your mind and heart and help you clarify what is really important.  He can also use circumstances to change us, to bend our wills, to help us to let go of things in our lives and look to Him.  We've said "YES" to God many times throughout our lives and each time He takes us to a different level of brokenness and trust. 

Oh I used to hold on to things so tightly.  Whether that was friendships, relationships, stuff, career, plans etc......  Then with each step He led me, I had to learn to let go and loosen my hands that were clutching things so tightly.  Sometimes I faltered and still held on tight, but even in those situations, God still used the circumstances in the long run. 

I've learned to live "loose" with hands that lightly hold on to things.  This year has been a crash course on living loose ( what a funny term for a preacher's wife LOL)   As of this past Friday we have been gone from home 20 weeks this year (including our Ukraine time)  I would have never chosen that, I can be such a homebody but it was not my choice....  I've learned even more to be "content in whatever state I am in"  I've learned to live for TODAY~ in the sense I can't make long range plans, everything is out of my "Ms. Planner's" hands!  You know I'm one of those folks who can make looooong range plans, one year, five years and even ten year plans LOL  Well that is pretty shot now huh?  LOL  I've learned to make do with what we have and not try to have the perfect family. 

So I don't know what our future will be in so many different ways....I know I've learned many things about myself, my husband and our family through this ordeal & this past year  and all in all, I am quite happy with our resourcefulness and flexibility.  I know we have seen things this year and faced things that have made us stronger & things that have made us know that God wants so much more from us that just silly meaningless words,  You can't sit in a adult mental institution & hold children  and go back to life as usual....  The truth of eternity has penetrated our hearts and made us want to get all the things out of our lives that are meaningless.   We have never been people that could be defined by being in any certain "box"   We never felt the need to fit in to any mold that anyone would want to put us in.  Our backgrounds are similar in some ways but so different in other way and that has made us look at alot of things differently than some people do.   This year has only made that difference stronger in us.   We have seen God's provision come in ways we would have never expected.

So we're living loose, with our hearts open and our ears listening....


Today after church and lunch, Jon went over to the hospital to work with Selah.  She has been very aware with him and up in her car seat.   She has done alot of head movement today.  Something funny that Jon noticed today was that when she wanted to turn her head, first she'd turn her eyes then move her head. , with her eyes.  It seemed like to Jon she thought she had to look before she moved her head....just a glimmer that she seems more aware.  Tomorrow will be a busy day with lots of therapies, maybe she will do something new tomorrow!!!

Today we picked a church to go to, a Wesleyan Methodist church, and we go in and the first thing Steve sees is a sign up sheet for Thanksgiving Dinner for the Ronald McD House!  They will be doing out Thanksgiving Dinner!  How interesting that we picked the church that is coming here,...what were the chances of that?  I had wanted to go to an Wesleyan Methodist church as that is movement that my family started in as kids ( my granny & aunts)  My husband was raised United Methodist, so he was familar with the service.   It was a very good service. 

Saturday, November 17, 2012

Day 13 Fish Oil study

On Saturdays we take the kids over to see Selah.  Selah was stressed when we got there and got more stressed with the kids there.  It seems she is aware of them more.  It's funny because she showed she was more irritated by getting stiffer but her heart rate never went up over 120 and her blood pressure was fine.  I'm taking that as a good sign.  She calmed right down after they left.  It was like although she was upset, she handled it. 

Later I went back over and worked with her.   I sat her on the edge of the bed and gave her some support and worked her on a side to side motion and up and down.  She didn't like up & down...I was laying her on the bed and bringing her up.  At one point she pushed away from me.  I like that she did that! She held her head up some on her own.  I certainly do think that although I have to give her alot of support, it is easier to have her up than it was even a couple of weeks ago.   I also put her in the car seat for awhile and she did fine.  I put her to bed and she went right to sleep! 


December 4th will be 30 days on fish oil...I'm looking forward to that date.  It's not a "magic" date but I'm hoping that by then we will be seeing major changes.   My emotions are up & down alot more lately.  I'm hopeful but afraid she will be the one that the fish oil doesn't work for or that she is so brain damaged that even if she comes out of the coma, her brain damage will be so bad that there will be no change.  Fish Oil is being used to treat brain damage also, so I have to remind myself of that constantly.

I got really sad today walking through Toys R Us.  Someone wanted to do something for the children and asked for some suggestions.  It was more than I could do.  Everything I looked at just hurt to look at....toys that she has, her Princess ride on,  and me thinking she is not even interested in string (her favorite toy- YES string......that's what she had to play with and she was quite addicted to any type of string)  It took all my self control not to completely lose it in Toys R Us!    It's hard....it's hard to see the little  children with her.  I can't help but compare her to them...and although they are both very delayed, they aren't as delayed as she is now.   It's sad to see Shad and Steve talk to her, there is such a sweetness but a sadness there.  Sorry to be down, but we are just holding on as hard as we can.

But more than anything I remind myself that God took the time to send someone to me in the mall ( he knew where to find me lol) months ago to prepare me for this and to tell me "do not be afraid"   So when the fear comes, I remind myself of that conversation.  And believe me, the fear comes, it can be debilitating at times.  I just have to take a deep breath and remind myself that "life is short, eternity is long" and that our lives are in His hands....

So I'm resting tonight in that peace.....

Please remember to bring Selah's name up to God's throne tomorrow morning in prayer....

Friday, November 16, 2012

Bless the Lord O My Soul



Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

The sun comes up, it's a new day dawning
It's time to sing Your song again
Whatever may pass, and whatever lies before me
Let me be singing when the evening comes

Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

You're rich in love, and You're slow to anger
Your name is great, and Your heart is kind
For all Your goodness I will keep on singing
Ten thousand reasons for my heart to find

Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

And on that day when my strength is failing
The end draws near and my time has come
Still my soul will sing Your praise unending
Ten thousand years and then forevermore


Bless the Lord, O my soul
O my soul
Worship His holy name
Sing like never before
O my soul
I'll worship Your holy name

Jesus, I'll worship Your holy name
Lord, I'll worship Your holy name

Sing like never before
O my soul
I'll worship Your holy name
Jesus, I'll worship Your holy name
I'll worship Your holy name



I love this song....I highlighted the parts that just make my heart soar!!!!  What a song!!!   Hope you are blessed by it!

Day 12 Fish Oil study & a BIG thank you!

Evidently Selah knew she had to make daddy and mommy feel better so she did!  This morning when the therapist came to get her, the therapist said "Selah let's get UP"  So Selah lifted her right shoulder off the bed.  The therapist repeated it and Selah responded again.  Then the therapist called Jon over and told Selah "let's get up"  and Selah lifted BOTH her shoulders off the bed, and turned towards Meg, the therapist!!!!!!!  That is big, as it shows understanding and that she can follow directions.  That is what rehab looks for!    She was holding her head up today and holding her trunk better too.  The therapist only has to give her one arm for help.  Much less support than she even had to do last week. 

When Jon came in, Selah zeroed in on him and held his eyes.  Jon started making her little noises and she tried so hard to do it back.  The therapist had never seen her do it before and she couldn't believe the "banter" they did back and to.  Selah hasn't done that for awhile so it was good to see her do it again!!!  And I'm glad the therapist saw it.

There is a little less concern about her left elbow and right thumb.  There seems to be no change so it doesn't look like she is drawing up in those areas, it just might be her normal poise. Obviously we only had a few weeks with her and didn't notice that about her.  So we aren't as worried about that .

She did all her normal things today with no regression at all.  Even being on the therapy ball, she managed to hold her body better.  Even last week it was quite a chore for the therapist but today there is a difference.  The therapist didn't have to work as hard:)

Jon worked with Selah all day long.  We are enrolling her in our own therapy school.  :)   We want her prepared for the rehab and ready to work with them.

I cleaned our room today and repacked everything.  It is a amazing how much junk a family of 7 can get in 3 months!  We have our summer clothes gone through and packed.  I went through all the things we have been given or bought and sorted things out.  We've been given or bought alot of clothes since all we had with us was shorts:)  Let me tell you, the thrift stores here in Rochester ROCK:)  so I have quite a bit of winter clothes now:)  I LOVE thrift shopping!!  Especially on Half Price days!  That is my retail therapy without feeling like I'm wasting money!  And the good thing is if you buy from a thrift store, you are helping another charity out!

Dear Readers, I want to thank you so much!  Thank you to the three families and a Catholic School from Ontario NY that gave to the Rochester Ronald McDonald House in our honor!!!!!!   That just blessed us so much!  RMH has been so wonderful to us through this whole ordeal and we just love the staff!  They've become family to us!   If you live in this area, and want a GREAT charity to give to, one that really does what it says it does....then give to the Rochester Ronald McD House!!!!!   We were also told some others have given in our honor but it's being processed.  I am so glad!!!

And thank you to the sweet lady from Perry Oklahoma who sent us a note and gift today!  I'm from Perry Fl and thought that was neat:) 

http://reecesrainbow.org/38066/sponsorbasas
AND THE BEST......ALMOST $1000 HAS COME IN FOR THIS FAMILY!!!!    THANK YOU SO MUCH TO ALL WHO HAVE GIVEN AND PRAYED FOR THEM.  THE LITTLE BOY'S PICTURE IS UP ON THEIR SITE NOW....WHAT A DOLL BABY!  THEY STILL NEED $3000 BY NEXT WEEK BUT GOD LOVES THE ORPHAN AND HE IS ABLE!  IF YOU HAVEN'T GIVEN AND CAN GIVE TO THEM PLEASE PLEASE DO!!  I can't help but to put us in their place...being in country and wanting to add another child.  We almost added another little girl while we were in Ukraine but her paperwork was not correct...I wanted to bring her home too so I can understand how they feel!  If Selah recovers, we want to go back and get her....sometimes I can't think too much about her or it hurts too bad.  Another family is going over soon and going to see her and take a dolly to her from us.  We've named her Sally in our minds, so please pray for her that God will hold her close to Him and be with her.  I even pray that another family will come for her if we can't do it soon.  She is in a bad situation......

So please continue to pray for Selah!  We need her to cough more, she did some good coughing today but it needs to be consisitant.  She needs to get to the point she doesn't need to be sucutioned out and right now she has to be every couple of hours or so.  Pray that she makes some big gains and is ready for rehab!

We are still looking for a place to stay in, if you have any contacts, please contact them for us.  We are too big of a family to stay in the Jax RMH....

Thursday, November 15, 2012

Day 11 Fish Oil study

Today made a full week that Selah has had a full dose of fish oil.  She still has not had a "storm"  We were talking with her therapist about the "storms" and she said when she first working with Selah and she had started storming, she thought it would only get worse.  After she got on meds for them, we were told that at some point she probably wouldn't respond to meds forever.  We were told to expect the storms to get worse...thank God that hasn't happened.  In fact even before the fish oil, she was going about 1 to 2 days between storms but since the fish oil study started there have been no storms.  One morning the night nurse told the morning nurse that she had stormed overnight ....we tracked that nurse  down and found out that her heart rate had gone up when she had her teeth brushed....and then went down...that is not a storm!!!!!  So thankfully we are still storm free
 
One thing we are worried about is her left thumb seems to be drawing up into her hand.  Also her right arm might be drawing up a little at the elbow.  Everyone that has had a brain injury has some kind of physical response.  Selah has done very differently than most people who have be in a near drowning.  Instead of drawing up, she has extended her limbs.  It is very unusual for that to happen.  But now we see these two things that bother us.  We are watching her very carefully.  It might not mean anything because her limbs are not tight but they just seem to go back into these certain  positions. 

She has the first step down trach in and is doing good.  But she is not doing good when they try to close the airway and make her use her mouth and nose.  She begins to struggle to draw in breath.  She also is not coughing enough and still has to be suctioned out.  She really has to start coughing.  Please pray for that!!  We are disappointed!

We had a team meeting today, mostly talking about the transfer to the rehab in Jacksonville.  Obviously we have some real concerns.  Let me see if I can explain it good to you.  Six weeks ago we were turned down for rehab here.  That was heartbreaking.  The same doctor came in yesterday  and did say that Selah had progressed some but they would probably just offer us a 2 week program where they would work with us as parents to be ready to transition home.  They are not a pediatric rehab all though they do have kids there, but it's not their speciality. 

After talking to the nurse yesterday from Brooks, I felt like they would and could offer Selah more than that BUT it is really up to the insurance company and Selah.  The way rehab works now is there are weekly goals, if the child meets them and is progressing, they can stay, if not they are sent home.  So Selah has to meet goals.  I talked to them about Selah and WHO she was before the accident....very developmentally delayed, from an institution and never had heard English until we met her back in April.  We hope that will be taken into consideration.  The therapists we have now are awesome and have understood where Selah was BEFORE the accident and do not approach her in the same way they would a normal "eight yr old"

After the meeting today, Jon and I both broke down.  We know what lies ahead.  We have been the parents of a child with disabilities for almost nine years.  We have fought many battles for his health care and his therapy....you have no idea....  We brought Sam home with THREE machines and could get no help.....we know what Florida offers and it is not much! 

We have goals for Selah, the main one is getting her off the trach.  If that doesn't happen in the hospital or in rehab, then it will be difficult to find someone to work with her once we get home.  The therapist we were set to work with is not comfortable with working with her trach....it takes a specialist. 

We are concerned we will get Selah to Jacksonville and she'll be there for 2 weeks and then sent home.  We ask that you pray that she will get the therapy she needs to rehabilitate her muscles and that all her special circumstances be taken in context.  To be honest, since she was so delayed before we are afraid she will be discriminated against in rehab.  It happens.....the idea is why put all the effort into a child that is not "normal" already.  I can assure you it happens, it has happened to Sam...

Selah has not really done any new things, she has not regressed either but we like new things!!  She did take some soup in a syringe today and did really good on swallowing it.  She held her head up while I was changing her clothes and did quite well.  That is new this week, holding her head up for up to 45 seconds.  She was showing some head control last week but it is more this week.

Everything has been baby steps, even when I say something like she held her head up , it's not like she can maintain for more than a minute.   We have a long way to go.....

We are discouraged to be honest, lots of reality coming down on our shoulders.  We are not quitters, we may be plodders but we don't quit:)   But we are sad and worried about several things.

We are still looking for accommodations in Jax.  I have several friends looking into things but no one has an answer yet.  If you have any contacts please contact them for us. 

Thank you for your prayers....don't need any christian advice tonight...just prayers....  we don't know the outcome of things, we are hopeful but please don't say she will be healed or anything like that because you don't know and that does not comfort me for the most part.  We may have a long long lonely road ahead and I really don't need platitudes....  Not trying to be mean...but it just gets on my last nerve and I don't have too many left :)  (actually I've never had very many lol)

I finally finished reading a great book today someone had sent me about extraordinary women of God.  They all faced incredible challenges, more more like what the New Testament saints faced than what the Christan church world of today thinks a good christian will face.  It encouraged me to read of the various trials they went through and how they felt.  One woman a Korean lady stood under great persecution by the Japanese before and during World War 2 and yet she stood for God, even when she was afraid.  Her frank works encouraged me today.  She literally had a "Shadrach Meshach and Abendgo" moment when she was told to bow down and worship the Japanese king and their idol in front of others.  She refused and then withstood torture for the next 10 years!  She shares how she had faith at times and then shook with fear at other times....I can relate although I am not going through something like that.  But there are times when my heart is heavy and times when I have more hope......  there was also a chapter in there on Gladys Alyward, one of my favorite missionaries....  I loved this book because it told women's stories of faith warts and all!!!!  I believe in that!!!   Warts and All!!!

So we are resting in God's peace tonight but we are discouraged and tired.....



Wednesday, November 14, 2012

Be a part of something BIGGER than you!!!!

http://reecesrainbow.org/38066/sponsorbasas

Please check out this family on the above link!!!!!

This family went to Sarah and Selah's country to adopt this sweet little girl with Larsen's Syndrome.  Since they got there, they've fallen in love with a little boy with CP.....They can also bring him home but need $4000 to do it....  Can't my readers make it happen?  I have about 3000 readers a day on here, if everyone gave $1.33, we could make it happen!!!!! 

Since we've been here, our debit card has been compromised and the bank had to close it out (thankfully we didn't lose any money) but I can't give electronically to this family but you can and you'll be blessed by doing it....  I'm not saying that you will get a ten thousand fold in return LOL BUT you will be giving a little boy a home!!!!  That is priceless!  Can you really wrap your head around what this means????  It means a little boy that this family met and feel in love with, can go home with them!  They weren't planning on this happening....but it is...be a part of something so much bigger than yourselves!!!!!

The family's blog is on private right now as they are in country and that is what is recommended but believe me I know this family is praying for the finances to ransom one more child and to give that child a home!!!!!

Thank you!!!!

Day 10....fish oil study....what a day....

Jon went over this morning and I got a call from him and the resident.  She felt that perhaps the rehab was not going to take Selah, that was a blow to my gut!   She wanted to know if we were comfortable going straight home with her still on the trach....ummm NO!  The logistics alone were overwhelming to think of.    We talked some more and she said she'd call the rehab and get back to us.

My heart just sank, we feel she has come so far but we realize she has a long way to go.  But to think that she would be denied going to a rehab at this point, just made my heart drop!  I really had to "cast my cares on Him"  This morning and early afternoon, were rough for me!!!!

  Well I decided to call the rehab  myself.  (anyone surprised at that??  LOL)  I spoke to the person reviewing our case and we were able to discuss Selah.  Thankfully  it looks like they will accept her as a patient.  The rehab has also spoke to the doctor. There just was lack of communication....    We will probably be transferred the week after Thanksgiving.  Selah will be flown down and we will drive down.  My sister in law Valerie will be there to meet her and to stay with her until we can get there.  All patients are accepted in for two weeks.  If she is making progress and meeting goals, then they will keep her longer.  If not we will go home because insurance will not let her stay.  The first two weeks will be intensive for Selah and for us.  We will be trained to take care of her in more practical ways.  Hopefully she will meet her weekly goals and be able to stay there.  Our number one goal for her is for her to come off the trach.  That will be the best place for it to happen at.  Certainly better than at home!

SO....please pray that everything will work out...LOTS of logistics to figure out....we have to find a place to stay in Jax....

But more than anything else....pray for Selah, pray that she begins to recover faster than expected.  I'm tired today, I'm discouraged....I really don't even have the words to say.....We've seen some progress and it is great, still no storms!  But she is far from the child she was on August 14th....  We have high hopes that the fish oil will work for her.  She is not near the "magic time" when it is supposed to really start working.  She will have blood work next week to see where the markers are at, when they are at a certain point, that is when the recovery seems to really happen and the earliest we can really expect is about one month. 

Today both therapists were out and Jon worked with her.  She sat up in her car seat for 1 1/2 hours and she was tracking with her eyes.   A doctor from St Mary's (the rehab here) did come by and see her and she did remark that she could tell she was tracking and responding.  Selah was also moving her left arm independently also.   So she is doing some things....I just want her to walk out of here.....I know that is not realistic BUT that is what I want!!!!!

Our real true Hope is in God and today as He has throughout this whole time, He was there to comfort me and to ground my thoughts so they wouldn't go in a million directions.   The future is scary and even harder than most families face in this kind of situation as we are so far from home and have the additional stress of that,  but I trust that God will work out things in a way that we don't even understand nor can try to figure out on our own.  He has proven Himself to be our provider over and over again and I know He will make a way for us.   We of all people should not wonder or try to work out things in our minds, as we have seen God do so much for us in the past.  I don't want to be like the children of Israel, seeing miracles, then turning around and doubting God the next day!

  But I feel very down tonight.  I know what most of the doctors expect in Selah's situation and it is not what we want.....they've never seen anyone recover to a normal degree from something like she has gone through and that weighs on me.  They would LOVE to see her recover completely and I think  they think there is some medical hope in the fish oil, to some degree but the reality is hard.  They want to prepare us for a life with a severely disable child.   Believe me if you really know me, I am about as realistic as they come, you won't find me "claiming something" but there is something inside of me that just says "NO" to the future they paint for Selah.  I'm trying to discern if it is just me or if God is giving me this thought.  Obviously no sane person wants to accept a future for their child that keeps her basically bed ridden!  However with Sam, we were very accepting of his disablity and just rearranged our lives around it.  Maybe that was because he was born with it and we never saw him any different than that.  We certainly accepted Sarah and Selah just like there were also.   I don't know but everything in me sees Selah back to "her normal"   So I don't know the future, one day I'll look back on these words and know whether God was speaking to me or if I was just holding on to a false hope.  But tonight I just want to curl up and escape everything......

Thank you for your prayers and support!

Tuesday, November 13, 2012

Day 9 fish Oil study!

Another good day...

Today was Jon's day over at the hospital.  I got a wonderful phone call from him and the therapist....during therapy Selah was able to hold her head up while  sitting on the edge of the bed!  She held her head up without any assistance for up to 45 seconds at a time.  She had to rest in between times but did it several times:)  We were all excited about it!  The therapist was giving her some  trunk support but she did the head support on her own!

Selah continues to swallow!!   She also coughed some:)  She deliberately with PURPOSE pushed away the Popsicle after awhile:) 

However she was not able to have her trach opening covered in order for her to breath only through her mouth and nose.  She got afraid when her trach was covered.  Physically she did ok, but it scared her.  The therapists are going to work on that with her as she has to do that in order to come off the trach altogether.  Please pray that she will be able to work with her therapist on this!  We want to see her off the trach!

So all in all good news...I just want it to happen fast!   Please keep praying for her.  She is improving daily but she still has a far way to go .  Thank you for your prayers!

Monday, November 12, 2012

Day 8 fish Oil study

Great day!

One full week of NO storms!  And one full week of fish oil~~

Today Selah did wonderful with OT and ST.  She took water from a syringe and drank it, probably a whole 3ML.  I know that is not huge but it is.  She swallowed well and tolerated it.  During ST she got tired of the Popsicle and she pushed it away 3x!  We couldn't help but laugh about it.  Her personality is shining through!

Later I was wiping her face with a washcloth and she started sucking on my finger!  Honestly it scared me and I jumped:)

Monday is the day for the new attending doctors  to come in.  One came in that hadn't seen her since late September when Selah was turned down for the rehab hospital here.  She was shocked at the change in her, the doctor said Selah had made "significant progress"   she continued to say if Selah continues to make more "significant progress" she could start the process to come off the trach!!!!!!!   It is not an overnight thing but a process of at least a month, if all goes well.  They are very concerned about safety and do not want her to aspirate so we will see how things go.  I LOVE the term "significant progress"  

Just a little while ago Selah got her new trach.  For lack of a better term, it is a step down trach.  She is required to use her mouth and nose more to breath through, not just the throat opening.  If she tolerates this and so far she has quite well as her oxygen stats are at 100%, the opening in the tube will be blocked altogether forcing her to breath only through her mouth and nose. 

She will also have a covering over it called a "nose"  she has one on now.  The nose acts just like our filter in keeping the air  clean that she breaths in  Tomorrow her therapist will put on another nose that will enable her to make noise through it!!!!  So tomorrow we will hear some yelling.  If the new trach had gotten in earlier, the therapist would have done it today but we have that to look forward to for tomorrow!

For the record, Selah smells like the beach, quite fishy:)  It has permeated her clothes but to me it is the smell of progress:)  At least that is how I am choosing to look at it !  LOLOL! 

Thursday we are having a team meeting to look at where we are and where we are going....one thing I learned today is that if Selah is sent to Brooks in Jacksonville Fl, our family is too large to stay at the RMH there.  Not every Ronald McDonald House is as flexible as the Rochester NY RMH.    We don't split up our family and it wouldn't work anyhow.  So if you have any contacts in the Jacksonville Fl area please check them out for me. Please don't send me suggestions for me to check out, I wouldn't contact someone if I dont' have a link with them personally.   I am thinking maybe a church might have a "missions house" or something along those lines.  We wouldn't be interested in living with anyone, that would be a little too stressful!  But if you have contacts, tell them about our family and we will see what happens

Our hope is that Selah will work herself off the trach and be ready to go straight home from here.  If that did happen, we would drive home with her:)  She would have therapy at home, it is already set up and we would not need as much nursing care. 

As always we are just staying flexible, not sure what is going to happen.....

Thank you for your prayers for Selah, please continue to ask the Father to touch and heal her!!!!