Day 4 Fish Oil study

Today has been up and down for us....

She seemed sleepy this morning when we got here.  But she was cooperative in OT.  As the therapist was leaving she mentioned that she saw some nystagmus movement of her eyes.  I didn't see it and it didn't bother me much right then....  Sam has nystagmus and Sarah does too a little.  It's a rapid eye movement side to side and it is associated with vision loss, disturbance or a eye problem. 

Then her nurse and I were doing somethings and I saw it and it was a violent movement from mid line of the eye to the left side.  The nurse took one look at me and I said 'go get the doctor"  My legs started shaking.  I didn't know if she was having a seizure or what!  I even thought maybe it was something good....who knows?  The nystagmus that Sam has is where his eye goes across they eye from side to side, not from the mid line to the side.  So the doctor was right outside and came in and saw some movement.  Then neurology came in and sent in a person to do an EEG.  Thankfully she did the eye movement when the machine was on so it caught it on video and they could look at how her brain was firing during the episodes.  During the test, she had movement from the mid line of the eye to the left and then later to the right but never all the way across the eye.  I also called Dr Sear's assistant and told him what was going on. 

We got the results back and there was no sign of seizure activity.  So no one knows exactly what it means...it could be good or it could be not good...we don't know.  Neurology said it was not an usual occurrence when someone is waking up from a coma.   Of course I looked it up.  Obviously I know a bit about it from an eye condition side, but one site I found did say it could be from a brain injury occurring later in life.  One of my readers, the one who got me in touch with Dr Sears in the first place told me that a child she is very close to had the same reaction coming out of a coma two different times from two different problems. 

At this point, I think we are leaning towards it is a good thing, it is a new thing that is for sure....

Something else that is new today is still no storming!  She did a bath, OT, Music Therapy, face cleaning (by me that she hates) then all the residents from neurology (I finally told them to stop touching her) then an EEG with all the electrodes and then a hair washing....ALL without storming!!!  To me that is a MIRACLE!  You have NO idea how we have tip-toed around trying not to upset her and get her into a storm!  There is no way she could have handled all that last week!!!  Even Monday morning before the Fish Oil was started, she had a storm with a heart rate over 200 because she had therapy and then I cleaned her face.  That was one of the worst ones she had had in a couple of weeks but she hasn't had any since then!!!!  Monday her arms were stuck in the air like she was saluting and they were shaking.  It was horrible!  but she hasn't had one since!

After supper I came back over and found her slumped in bed.  This is the 2nd time today she has done that and the FIRST times she has ever been in a new postilion since the accident!!!  She was upset and breathing hard and her heart rate was 130 but as soon as we repositioned her, it went immediately down to below a 100!  I have to admit when I walked in and she was slumped over so bad and yelled for the nurses and they came running!  I didn't know what had happened and I wasn't going to take a chance!!!  So now for the first time they are going to have to watch her for movement when we aren't here!!!!  WOOHOO!!!!!!!!!!!!!


Then I tried her on a Popsicle and she sucked it, swallowed, licked it and I think even tried to bite at it:)   She had about 1/4 of one.  She seemed to be getting tired of it and I didn't want to take any chance of her aspirating!!!

do you love this picture or what?????????

 

I'm so glad I came back over, I was feeling bad, worried about what the nystagmus really meant and I had a bad headache but I just felt I needed to check on her again.  She rewarded me for coming over!!!!!!  She looks  just like LaLa!!!!!!

Day 3 Fish oil study!

As I begin to write this blog, I hear a helicopter bringing in yet another serious case to this hospital.  It is a common background noise here.  I can't help but stop and pray for that person, that family as many have done for us since the children's accident.  I've learned many things in the past weeks and one thing is your health/life and your family's health/life is something you don't take for granted!

We are thankful that we have something new to share today!  This morning the speech pathologist was working with Selah.  She tried lemon ice with her.  She licked, then sucked at the spoon then swallowed it!  She did it several times!!  Then the speech pathologist came back this afternoon and Selah did it some more.  We'd had had Selah up and on my lap for about 1.5 hours before so she was a little tired but she did cooperate.

Selah eating lemon ice!

Later the PT came and was able to work with her knees and ankles.  She said that Selah was more flexible than she had ever seen since the very first days right after the accident.  Within just a few days of the accident, Selah began to tighten up and lose so much mobility.  Now she is loosening up.  Her arms and hands are close to normal.  For weeks she wore splints on her arms/hands...those HATED splints are in the garbage now!!!!!!     I hated them, she didn't seem to notice them.....but they are gone:)  Selah had been more cooperative with the OT before but resisted the PT before today.  We are glad that the PT was able to see the range of motion that the OT has seen and maybe even a tad more. 

The GREAT thing is that Selah tolerated all that time up and 3 therapies WITHOUT storming!!!  No huge increase in blood pressure or heart rate:) 

Next Monday she will have the new tube in her trach that will enable her to breath through her mouth and make noise.  If she tolerates it then at some point (hopefully in the near future) it will be "plugged up' to see if she can breath completely through her mouth/nose and handle her secretions...if so she will no longer need a trach:)    We are hoping that she will get to that point soon!

I'm trying to keep my account as factual without trying to draw any conclusions.... I don't want to exaggerate but I will tell you that Selah has not stormed since Monday morning.....Monday evening is when she started the fish oil....today she was worked with for hours between us, the ST and PT and the ST for a second time....  not only that but the PT found her to be more flexible than ever before....and yet she never stormed.....  Her storms had been much better over the last few weeks but today she didn't even go over 110 heart rate at all during all the therapies and time up!  Before she would at least go up when she got upset and she could sometimes bring it down without us having to stop but sometimes she'd had to be put to bed and left alone so she could calm down.  At times it would take her 30 minutes or so to calm down to a normal heart rate.  We are excited about how well she tolerated things today and of course all that she did!

The sonogram showed the blood clot is still there but it is smaller.  She will remain on the medicine for awhile longer.  It should dissolve in the near future. 

PLEASE keep praying for Selah!!!!!!!

Thoughts on Election night....

In my blog, I am going to do a daily report on Selah like I did tonight with Day 2....so tomorrow expect Day 3 Fish Oil study....I am doing that for us, so we can document each day and see her progress.  I may have to write a little bit more like tonight!!  I tend to like to stir things up some....  I used to blog for the heck of it and didn't  really think about anyone really responding... now I get a bit worried:)

Tonight on FB I wrote in response to a funny video that a friend shared about how desperate Christians can be about the elections :

 "I so agree that too many people think the USA is "God's country" I don't think any country is except for Israel and even with Israel, I do NOT believe we should just blindly support them!!!! Obviously if you read the OT and even the NT, you can see even the nation of Israel, being in disobedience and out of the will of God. I see somethings on here (talking about FB)  that really turns my stomach. I do NOT think a US flag should be inside a church..... I love the US BUT this world is so not my home..... But having said that, I do not like anything the Democratic party stands for. Even if I weren't a christian, I would vote Republican (unless it was for Rick Scott LOL)  Also I feel the world is on a one way road to the end of the world and no one can turn us back....but possibly a conservative president might slow the pace....."

So I do love American but like all the other countries of this world, all the countries of this world will bend their knee to God one day.  In heaven there won't be Americans, Russians, Chinese, Egyptians or any other country....there will be just citizens of heaven.....  One day America will be just a memory, along with all the other countries...  Sometimes I do think that some folks feel that the USA is somehow this "chosen country" that will last forever.   I do believe America has been blessed by God BECAUSE we as a nation honored God for so many years.  America does not honor God as a whole nation now....  This nation does not live by biblical values anymore.  Yes there are folks in this nation that chose to live for God, many people do but the majority of this country do not serve/honor God by their actions.  Every decade you can see the decline of this nation. 


I hope I can articulate this next thought of mine....sometimes I see things like recently on FB a Cross painted Red, White and Blue.  That really "ickes" me out.  Why?  The same way I feel when I see just an American flag in a church.  (it doesn't bother me IF I see a bunch of countries represented because THEN I feel that it was more of a statement that all countries bow to Him)  It seems to imply, to me, that to some, it signifies that the USA is somehow more "spiritual" than other countries or more loved by God.  Now, as I said, God has blessed us because as a nation, we used to honor Him as a nation.  We can not claim that anymore. 

For example, if I were in a church in China and there was a Chinese flag in it, that would make me uncomfortable. If I were in Syria and there was an Syrian flag in the church, that would make me feel that someone was making a political statement.   In Ukraine, we visited Russian Orthodox churches.  They were beautiful with all kinds of pictures in them.  Russian Orthodox Churches are very beautiful and they are very nationalistic.  As we were looking at the various paintings, I'd ask the guide who the pictures were of, which saint....  and time after time he would tell me that it was a former leader of Russia.  One picture looked like the Madonna and Jesus, however it was a picture of Nicholas and his mother.....do you see where I'm going? 

When the goverment and the church is hand in hand, you don't see a vibrant church! 

I totally believe in the separation of church and state.  Now I believe a pastor should encourage his congregation to vote biblical values, Pro-Life, & pro-marriage, but that is where it should stay.  I believe a pastor should teach his congregation the balance of what the bible teaches to take care of the poor, the orphans, the widows BUT the bible also says "if a man doesn't work, he shouldn't eat"  The bible as always teaches balance IF it is taken as a whole. 

So since I started writing...the election has been called.  I'm not happy, I disagree with Obama on just about every platform from social issues, to foreign policy and everything else.  I'm a conservative, so even if I was  not concerned about the Democrat's platform in a moral sense, I'd be concerned about the platform in every other way!  I'm not a Calvinist, I do not believe that everything that happens is "God's Will" I believe in the Free Will of Man~ meaning God allows man free will to chose not jsut their salvation but many things.    I believe that  there were times in biblical history when God seemed to step into the affairs of men and override their decisions.  Other times He seemed to allow the will of man to prevail.  There is a balance in there.  God certainly knew in his foreknowledge who was going to win the election but I don't believe He used "automatic writing" to cause anyone to vote for Obama... Sometimes God allowed judgement to come on Israel in the OT times because they disobeyed God.  He would let other armies come in and rule over them, or bad kings would rise up.  Sometimes there are natural consequences to decisions.  I believe America has decided for 4 more years of problems.   We are a society that is democratic or maybe more of a republic (since we have the house and senate)  but we are NOT a Theocracy (where God is the leader of this nation through a priest or a man acting as "God's voice"  I think people forget that at times.  So we are citizens of this nation have responsibilities!!!

If I were at home, I could reference some of our books as it is not easy to write about theology at midnight with no helps:)   I'm sure I'm not explaining myself very well with the tv on and being tired but I just had to write down my thoughts on this. 

I guess I think not so much that a candidate is "God's will" for our country as I think it is God's will for Christians to vote in a Bibically moral way and to live in that way also!   Maybe if we Christians took the same stand that Christians did for many many years on moral issues and did not stray from those convictions, then maybe this country would turn around.....but if you allow stuff in year after year and you don't fight and stand against the wrong, then the wrong will take over.  Our young folks won't know the difference between right and wrong....everything will just be a gray area for them.  There is a saying "what parents allow to moderation, their children will allow to excess"

So I am not thrilled with the election or where or country is headed....but this world is not my home, I am only passing through.....God knows the future and He will take care of His own!   So I will go to bed now after either annoying you, ticking you off, confusing you, or making you scratch your head trying to figure out what i was saying LOL





 

 

Day 2 Fish oil study

Selah has had 3 dosages of fish oil now!  She hasn't had any negative reactions.  Today was Jon's day over there and I did 7 loads of laundry here :)  I kept calling Jon to see what was going on and he was laughing and told me that she hadn't climbed out of bed yet...I can't help it I am expecting some good stuff:)

She did great with therapy.  The therapist touched her tongue with ice and she did something new.  She stuck her tongue out of her mouth and licked it a few times.  She has licked the lemon flavored swabs before but more when they were in her mouth or on her lips, this was more deliberate!  The student nurse was amazed at how she was responding and showing emotions ( negative ones) when the therapist was working with her.  Selah seems to understand the we understand her grimaces and are meeting her needs and for the most part she is getting upset without her heart rate and blood pressure going so high.  She has only had a very few storms lately.

She had a sonogram today on her leg.  She had gotten a terrible blood clot in her left leg right after the accident.  She has been taking shots of blood thinners in her stomach since.  We should get the results tomorrow.  We are anticipating that it will be gone, as her leg looks normal. 

Tonight we are sitting and watching the election results come in,  it's unbelievable that we are still here in NY.  If you would have told me, the day we left home, that I would have had to call for an absentee voting form and vote by mail in this election, I would have never believed it!    It will be interesting....

Thank you all for praying for Selah!  We are expecting good results!

Fish Oil has started!!!!!!

 

Here is the picture of Selah getting her first dose of fish oil just a few minutes ago!  Yes that is a big syringe and yet it is only a half dose!  She will have a dose in the morning and in the late afternoon every day.  On Thursday, she will start the full doses, that will be two syringes at a time!  I'm very thankful for a gtube!  I can not imagine getting a child to take that much fish oil by mouth!   They have found it is better for a person's system to take lower dosages first, just to make sure it's not too much  an overload for their system! 

 

She has had a great day today.  She did OT and Speech today.   They worked with her on the therapy ball.  She was very alert through the day and watched her DVDs.  Jon changed her trach and she handled it well. 

 

So.....we wait and pray that this will be the medical answer for her and hopefully it will mean a change to how near drownings are treated!  Maybe this will change Selah's situation and many others also!  Please pray for Selah!!!

 

We are thankful for the God given wisdom that led a doctor (Dr Barry Sears) to try this to help people.  We are thankful for the doctors and staff at Strong's Hospital who help facilitate this study so quickly, especially Dr Asselin

 

So tonight I sit by my daughter's bed, another night, with hope in my heart!   There have been many nights I've sit here and hung on to God as my heart was breaking....  I'm so thankful that God was with me through all those days and nights.....and He is still with us, no matter what happens in this study! 

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My FB post

Just keep thinking that SIX months ago today, we walked out of the orphange with the girls. Obviously I did not have any idea of what was ahead for us! I didn't know that 6 months later we'd be In NY and Selah would be in a coma after a drowning...nor that she'd be getting a new treatment to see if it would help her...I had no idea what was ahead for us but God knew and He prepared us and has walked with us....

 

 

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*I have to say THANK  YOU to one of my sweet readers who sent me for a massage today!  I can actually move my neck, almost normally in one direction!  It was wonderful!!!!!!  Thank you Jennifer:)

No Greater Joy Mom: if not us, then who? Please Read this!!!!!!!

No Greater Joy Mom: if not us, then who?:

Please read the above  blog through! It is by a mom that has a homeful of adopted special needs kids and she calls her blog "No Greater Joy Mom"   It is a graphic reminder that WE are the ones responsible  for the world's orphans.  It is NOT a calling that just happened to me & Jon.   If you are a Christian, YOU have been commanded by God to take care of orphans! It's a directive throughout the bible  if you don't believe me go back to this blog I wrote while I was in Ukraine.   http://myreallifebyyvonne.blogspot.com/2012/05/orphan-exodus-2222-24-you-shall-not.html

Now you can tell me how you are not called to take care of orphans.....I'm not saying everyone can adopt but everyone can do something!!!!!  You can give towards an adoption or you can sponsor a waiting child through an organization like Life 2 Orphans, a ministry that in all likelihood, saved Sarah's life!!!!!!   http://www.life2orphans.org/cms/ 

I think we so often forget how much Jesus spoke about meeting physical needs.  Yes there is a place for preaching the gospel but sometimes you  preach by what you do or don't do  Remember one day we will ALL stand before God for the the things we have done and not done on this earth.  I'm not preaching "hellfire & brimstone" I am just reminding you of the future.  Maybe all those statements of Jesus when he is telling us to feed the hungry, take care of the poor, visit the prisoner.....might mean something on that day.  He wasn't telling that to a select few that were "called" to do things, He was sharing it with all of us!  

I will confess I get ANGRY at the few responses I get when I talk about orphan care whether it is on my blog or on FB.  It is gratifying that so many people read our story but do you do anything with what you are reading?  Does it change you?  Encourage you to do more or is our story just an interesting thing you read?? 

People ask me HOW can I go through what all we have gone through over the years and one reasons I can go through it without getting bitter is I have seen REAL need and REAL tragedy that is so much worse than the things I have gone through despite the losses and the sadness.  When you are privileged to walk into orphanages and look in the face of the children, it puts life into perspective!   Even our hardest times, have had a soft edge to them.  For example, what I mean is, even when Sam was born premature and blind, that was hard, YES!  BUT I was in a hospital, I had doctors to take care of him, I had medicine....it's not like that everywhere.  So when someone has a tragedy in the USA, it's sad but we are still so blessed compared to what most of the world lives like!!    No longer is not having much money for Christmas, or not having the nicest car or the best clothes....none of that matters anymore.  Things seem so shallow and to be honest, many people seem very shallow, after that experience.   Sometimes I see things written on FB, not in a funny way, but a whinny way about how bad someones life is and I just think "REALLY?  You want to change places with an orphan in Eastern Europe or Africa or Asia???" I could show you a hard life.....so shut the heck up!!!!!

Today I'm tired of "nice Christianity"  just completely done with the latest blessing or revival or new "word from God"  I don't care about your goosebumps or your latest new song...show me your faith by your works.... Read the book of James!

 Thank you Adeye for writing such an eye opening blog.  You said things much better than I could have.  

Orphan Sunday.....New Clanton video!

(thank you Kandi Bailey!!!!!!!)


Tomorrow is Orphan Sunday....Wish we were home so our church could celebrate it with us.  Last year was very emotional for us as we had just seen Sarah...and couldn't forget her.

I'll tell you the background...
Last October a friend posted a lady's blog on FB.  http://theblessingofverity.com/
The family was finishing adopting her 9 year old  TWELVE  pound, daughter from an Eastern European country.  Katie has Downs Syndrome and had been mistreated.  In the blog she mentioned a ministry called Reese's Rainbow  http://reecesrainbow.org/.  I decided to go and look at it....so I got on the site and typed in Blind kids....Guess whose picture came up?  Ms Sarah...but she was bald and looked so much like Sam I actually thought she was a boy.  I read over it quickly and noticed that the child was in a mental institution.  Here you can see the picture of her that we first saw. http://reecesrainbow.org/28647/sponsorclanton  Her picture upset me so much that I literally turned off the computer and tried to go to bed.   I tried to forget but I couldn't sleep.  I tossed and turned and prayed for the "little boy"   I kept thinking "what if that were Sam???"   A few days went by and, Orphan Sunday was coming up.  It usually the first Sunday in November, it was November 7th.   So I thought it would be a "nice thing" to take up an offering for Sarah (who was called Genesis)  so our church did do that.....I got up and spoke about orphans and how sad things were for Shad and how bad things were for this child. 

So by the end of that day I had decided that our church should raise the money for her to get a family.  All $20,000!  LOL  So we committed to raising money and that lasted for a full 3 days...then Jon & I talked about it and decided we did not want to anyone else to adopt her!!!  We wanted her!!!!!!! 

So we were off....RUNNING....God working miracles....God providing every penny we needed....and a new van....and surprise another sweet daughter Selah.....and 7 months from tomorrow (Sunday-Orphan Sunday) we met our girls for the first time!!!!!! Monday will be 6 months since we walked out the doors of the orphanage with our precious girls......

 

Jon holding Sarah and me following with Selah.  The first time Selah had been outside in almost 4 years.....

 

 

And this picture of me and Shad meeting for the first time on 1/9/06.... minutes before he left the Chengdu orphanage forever......with me!  What an honor it has been to be with my kids as we left of the orphanages together~ what a privilege to be given these precious children to have as our own!  None of my children were "true orphans" meaning their parents didn't die...their parents didn't want to raise them.  Shad was left on a street,wrapped up in a blanket...WHY? Because somehow as a 6 month old child he had had some type of accident that damaged one eye.  So his parents who probably rejoiced that they had had a boy just months before, decided now that he was "damaged" and they left him...alone....

 

Sarah was rejected by her parents at birth.  Her parents saw her and refused to touch her.  They were older, late 30's, already had a child and decided they didn't want to even look at this sweet little girl who was born with just one eye.....they left her.... alone...

 

Selah was taken home by her parents, who then proceeded to malnourish and mistreat her.  She, along with her siblings were taken away from them.  She had 4 other sibling, 3 adopted by Ukrainians and one sister who is still in a "boarding school"  another name for an orphanage.  Selah went to a hospital of some type for 6 months!  Then she was transferred to several different shelters before briefly going to a baby house and then to the adult mental institution...she was all... alone....

 

So my three had 6 adults fail them....the system failed them....the world failed them but God never forgot them! And now they are NOT alone!!!!

 

Since we humans are not robots, God couldn't just MAKE us each one go and get an orphan or abandoned child....but if you stay with your heart open to God......you might just end up doing something "crazy" like that!!!

 

With all three, it just took a picture to fall in love.....and it was no different than if somehow Steve or Sam had ended up alone in another country.  I felt such an urgency, to get these kids home!!! 

 

With Shad if you don't know his story,  we got a newsletter from a great adoption agency All God's Children http://www.allgodschildren.org/ and I saw his picture. We had given to them in the past and every now and then we got a newsletter.   It was like a light shone on it.  But we were in NO place to adopt back in "05, Sam was little and sickly, I wasn't working....a million reasons why we should NOT adopt....but not to God!  So I called AGC and told them that I had a son who was blind and gave my number to whoever might start the process to adopt him.  We had just did all kinds of research on eye hospitals all over the country and i wanted to help that family.  Well 6 weeks later I got a call from the social worker who I had spoke to.  She told me no one but me had inquired about him and his file was schedule to go back to China if someone didn't commit.....couldn't we commit to him????  I said "NO"  I told her ALL the reasons why we could not and then she said "I really think this is God"  I thought she had lost her ever living mind......but I told her I'd talk to my husband.  So we did and we decided to do the little bit of paperwork to "commit and hold his file"  so the file wouldn't go back to China with the understanding that others could still look at his file...  We barely had the money to put the $195 down for him!    Well after we did that, then the SW kept sending me paperwork and we kept doing it...and all of a sudden we were in the middle of adopting him!  LOLOLOL   9 months and 6 days later I was picking him up in Chengdu China!!!!!!!  What a story!!!!!!

 

So that is our story of how we became the Clanton7.....

 

I encourage you to do something for orphans!

http://gracehavenhome.com/?page_id=308&fb_action_ids=10152155528130038&fb_action_types=og.likes&fb_source=aggregation&fb_aggregation_id=246965925417366

This family is adopting 2 children with very Special Needs from my girls' orphanage.  Also is you see the "Waiting children"  there, Patricia and Peter...those are two of the other children we'd like to adopt...especially Patricia, we even asked about her when we were there in Ukraine, hoping that we could add her but couldn't get the paperwork straight, there were questions and then by the time we knew where she was at as far as availability, we had already gone to court....  GIVE to this family's adoption or help place a donation on one of these waiting children......GIVE and PRAY!!!  The little boy lying on his tummy is one of the children they are adopting....see that room?  That is how our girls'  room looked like, they were down the hall from him.....


Or you could give to this family that just committed to Victoria, Victoria was in Sarah's room and spent alot of time with us.  As I was dressing Sarah to leave the orphanage, Victoria sat on her bed, she was across from Sarah and she just cried and cried.  She is crippled in her legs, that's it...and she totally got the fact that Sarah was leaving with her new mom and dad and she wanted a family too!  I could hardly look at her, I felt so awful!!!!    Now someone is coming for her!  And guess what?  They have an older daughter who has the same physical problem!!  Could you give to them so Victoria will be the one leaving the mental instituion soon?
http://reecesrainbow.org/1725/victoria110  

  So if you want to do something for us, do this!!!  And just let me know you did it in honor of our family!  I'd love to hear that the children get fully funded by folks who read my blog!  We'd be honored!!!!!!!!


SELAH update: she is doing good.  We took the kids over today and they got to spend a few hours with Selah.  She was alert and it made the kids happy to see her so alert:)  We are just waiting for Monday, looking forward to the fish oil and all her therapies....can't wait to see what all will happen in the next few days!