Another chance to give!

http://www.followingwheregodleadsus.blogspot.com/

I just gave to this little guy's family and it was a pain to redo all the paypal stuff but I'm so glad I did! they need $12,000 to finish thier adoption of this little guy from Russia. they've past court and are thankful that their adoption will proceed! Can I encourage you all give?  My blog has about 4000 hits a day...if all my readers would take the time to go and give just $3, their need would be met!!! 

 

I chose to give because of all the love that has been shown to our family, I wanted to pass it on!!!   Giving to this family would be a "good thing" to get this little guy home and to the medical help he will need soon to save his life! 

 

I posted his info back awhile ago and then it was unclear if the family would be allowed to finish their adoption, but thank God they will be!!!

Just click on their link and look on the right side of their blog and you can see the "chip in" section where you can give!!!

 

God bless you!!!

My Real Life

“The great thing is, if one can, to stop regarding all the unpleasant things as interruptions in one's "own" or "real" life. The truth is, of course, that what one regards as interruptions are precisely one's life.” ~C. S. Lewis

When I saw this quote, I couldn't help but think of my life......and the title of my blog.  Back four years ago when I started my blog, I really had an issue coming up with a name for it.  I asked my brother in law, Jim because he is really good with words and he came up with some funny names like "Yvonne's Yarns" .  But this title came to me, because I live a real life....well  I didn't know how real my life was going to get! 

We are tempted to think "when I do this" or "when I finish this"  my life will really be perfect.  But it never is "perfect"  it's just life.  I'm a tidy person (OCD person) so I always feel like life is perfect if my house/yard is clean, closets straighten, garden done, kids clean and in perfectly ironed and matching clothes with fresh hair cuts.....so with all these kids, that rarely happens....  Living out of a Ronald McDonald House, or a hotel room, with a child in the hospital,  and kids wearing whatever happens to be clean, and me going over two months on a manicure, and a husband who needed a hair cut two weeks ago would not be my idea of "life" it would be more my idea of an "interruption"of my life!  But guess what?  THIS is my life like it or not!

And where/what ever you find yourself in, is your life, like it or not!  Personally I'd prefer things to be different in my life but I don't want another life....  So we all have to make the best of where we are....  You only get one life. Don't waste your life by wishing it away.   Do the best with the life you have.

I love hearing stories of folks who took the "talents in their hands" , their lives and did great things for God.  Even when there did not seem much "in their hands"  I recently read in the book "Reckless Faith"  of families who had nothing yet would take kids in their homes to raise them.  I read of an older retired man who started a church in the worst area of a Mexican town,they used the talents in his hands, worked within their circumstances to do great things for God.  That is what I want to do! 

I have dreams in my heart that may never be fulfilled now....but that doesn't mean I'm just going to "lay down and die"   I may never get the chance to work overseas, run an orphanage, but I'm going to serve God where I am at by serving my family and being open to whatever God brings across my path. 

So I encourage you, use what is in your hands for God.  It may not seem like much, but God can take your faithfulness and make it a story that will encourage others ......

Day 67 Fish Oil Study

Selah has had a good day today.  She was alert in therapy, no storming now for a week.  She is resting good tonight.

So long day dealing with insurances.....We were denied coverage by Blue Cross for her to stay here past Friday morning.  Yesterday we appealed but today we found we were denied the appeal.  At the same time we have been appealing to Medicaid, her secondary insurance for nursing care ( BC does not do full time nursing)   Today we found out that Medicaid will cover her stay her until the nursing issue is resolved.  I filled out an in depth schedule for Jon and myself today to show our need for 24/7 nursing.  It made me tired LOL.  It looks like we have an agency to work with us.  We have worked with some really nice folks, even the ones at Blue Cross that turned us down:)  The Pasco Co Medicaid office has really worked hard on our case and are very sympathetic towards our complex situation.  Usually I'm a mess trying to work out things like this (not that I have ever had a situation like this before thank God!)  but I've had a peace even though everyone around me has been quite negative towards our need of 24/7 nursing, telling me how it won't happen.  Our case is unusual to say the least with two other handicapped kids but because of our situation we are finding the help we need.  Nothing is for sure at this point but I've believed from the beginning that God knows what I can and can't do and what I already do with Sam and Sarah who are both severely handicapped.  Some people say I make it look easy, and to be honest with the three little ones before the accident, it was easy for me.  It was like having two toddlers and a baby.  Well now that has changed alot.  I believe God will provide what I need to be able to take care of all my children.  I've had nothing but positive input today from the various offices that will have to decide the hours of nursing we will get.  Our situation won't change over time because my little ones will always be "forever toddlers/babies"  So unless Selah is healed, our nursing situation should stay the same.

We have made the decision to home school Shad and Steve for the rest of this school year.  Steve will probably have to work through the summer also.  We haven't had books since before Christmas but hopefully we will pick them up this weekend.  We had been going back and to on this decision but we feel this new journey is too new and fragile for me to try and take the kids to school and Jon has to get back to work and will have no leave time to be able to transport them.  It has worked so far this year and will work out for us. 

During my hours on "hold" today I did find some studies on comas and bringing people out of them.  I brought some of the info in and talked to her doctor about trying a few other drugs..  So we are going to look at trying a new one.  There have been a few cases where there has been improvement, we will see.....  I believe in medicine and believe that God gives doctors wisdom and caring hearts to want to ease human suffering.  Just like we were blessed to find out about Dr Aquevella and his life long work on artificial corneas and now have a little boy that has some sight compared to being blind!  I keep praying and hoping we will find another "Dr Aquevella" who has tried something new that works on brain injuries. 

So a busy but productive day....thank you for your prayers and please continue to pray that everything will work out in our favor for Selah's nursing.  Pray for Selah, pray that she will be healed!  And we won't even need nursing!  I'd be thrilled!!

Persistent Vegatative State/ Pondering in my heart

Selah has been diagnosed in a persistent vegatative state (PVS) by the doctors here and was diagnosed in a minimally conscious state (MCS) by the doctors in NY.  There is some difference in the two terms with MCS being better. It is still a coma state but not quite a coma.  From what I read the patiets are still judged on the coma scale for the various testing models.  Some would say  a person in either state is not in a coma per se some would say the person still is to some degree....

If you read about either state, you will know that Selah is not expected to "come out" of this state.  Basically a person has about a 6 month window to recover and if not, then it is highly unlikely....  Selah is almost at 5 months.....

There are times my heart breaks in a way I didn't know it could break.  We went from no hope of her surviving to no hope of Selah coming back to us.  She has progressed some, but I'm not stupid and I'm not a person who doesn't believe doctors either.  Doctors make diagnoses based on what they and others have seen and usually they are right or close to right in their diagnoses.  I'm not one of those foolish people who are always going around saying "Whose report will you believe?  I will believe the report of the Lord"  I do believe the report of the Lord BUT only if God has given me a report to believe.....   the prophet Isaiah in Is 53 is telling the people a prophecy/God's words to them...The scripture actually reads:  

Isaiah 53

New International Version (NIV)

53 Who has believed our message (or report)
and to whom has the arm of the Lord been revealed?
² He grew up before him like a tender shoot,
and like a root out of dry ground.
He had no beauty or majesty to attract us to him,
nothing in his appearance that we should desire him.
³ He was despised and rejected by mankind,
a man of suffering, and familiar with pain.
Like one from whom people hide their faces
he was despised, and we held him in low esteem.

⁴ Surely he took up our pain
and bore our suffering,
yet we considered him punished by God,
stricken by him, and afflicted.

 

In the gospel of John that verse is fulfilled by Jesus' coming....  

John 12:38

New King James Version (NKJV)

³⁸ that the word of Isaiah the prophet might be fulfilled, which he spoke:

“Lord, who has believed our report?
And to whom has the arm of the Lord been revealed

 

somehow the Pentecostals/Charismatics have made that Messianic prophecy into some type of "magical saying"  and as long as they say they believe "the report of the Lord" then things will be reversed in their lives....Um...so sorry, that is not even a little good theology!  It's not even quoting scripture correctly!  

 

So that was our little correct theology lesson for today....

 

So in saying all of that, I'm talking about acceptance of Life....I accept Life...

 

On the other hand, I had a vivid dream right after the accident.  I dreamed that Selah and I were home together alone.  It seemed that it was really bad weather outside.  It seemed that everyone was over at the church, maybe it was a Sunday morning.  Anyhow in my dream, Selah "woke up" "became herself again"  We were sitting in the living room area.  She was still a small girl and it did not seem like a lot of time had passed.  She was back cognitively in a way I understood her being Selah.  However she could not walk but of course that didn't bother me in the dream!  I don't know what that meant, if it meant anything more than an extensive of my hopes....I'm not claiming it was a dream that came from God, but we will know it was if that happens.  It does seem interesting that even if Selah recovered cognitively, she will need surgery on her knees/ankles in order to walk again.  At the time of the dream I had no idea of how her body would respond to the accident.  I've held onto that hope now for almost 5 months.

 

So I don't know what the days ahead hold, as you can tell I'm in a reflective mood.  Please pray for Selah and for our situation....I know so many of you are and we thank you for holding us all up to God!

 

Day 66 Fish Oil Study

Have you ever eaten crow?  I may have to...got Selah's blood work back on the inflammation and she is at .6  that means she went down from 1.1 .  Not at all what we were expecting.  It does not line up with where she is at.  She should not have regressed with the level going down.  It is actually too low at this point and we are cutting back on her fish oil by 5 ml a dose! 

She has had a great calm day although her tone seems high.  We do not know what to think about this new info.  We also did find out something else interesting, not only did the MRI show less damage in the white matter.  Also the front of her brain looks better.  How is that for me giving you the unscientific news?  I don't have the report with me so it is hard to remember but it is a good thing.

With all this good news, I feel she should be doing better overall.  We can't explain it.  The hospital certainly ran every test to check on anything that could possibly be causing this regression.  There is nothing....

Today we were told our primary insurance Blue Cross will not allow her to stay here past Friday...for some reason I am completely calm about this.  No there is no nursing set up for her.  There are lots of folks working on it.  We have put in an appeal to BC so we are waiting on many people to get back to us.  I don't know if this is supernatural or if I am past worrying ..... but it is very odd!  Now I can not imagine taking her home on our own on Friday.....but.....

Today I finished the book "Reckless Faith" by Beth Guckenberger.  I would recommend it....
In chapter 10 she writes
" Faith is the gas that makes your spiritual car go.  How reckless can your faith actually get?  It's measured by the extent to which you really believe God's plan for you is the best.  It requires the kind of faith that believes that God's words are not empty promises, meant for someone else.  It's the kind of faith that says "Everything will work out in the end"`even if "the end" is eternity.

Over and Over again God teaches me that for those with reckless faith, the story is never over.  It's childish to throw in the towel, pout, get frustrated,or walk away.  Life's isn't a puzzle that too hard or a toy you can't figure out.  But so often, I'm tempted to lose faith when I'm confronted with a setback.

When I relax my control on the plot line of my life & give in to the journey God has prepared for me.  I lose myself in all the great stories swirling around me.  When I stomp my feet and say "that's not fair!" or "it wasn't supposed to happen this way" then I run out of gas and my spiritual journey stalls.

But God is teaching me, one child at a time, that He is the Author of life and can redeem and write any story He wants"  (boldness added by me)

This particular passage really spoke to me.  So much so I just typed it all out for you to read.  It mirrors my heart right now.

You know my life wasn't supposed to be like this....this accident, these last 5 months away from home~ tomorrow is 5 months since we left home....now this, going home with a very sick little girl....   I serve God, I try to be faithful, I'm a good person... I've embraced the difficulties that God has allowed in my life believing it will work a bigger purpose....  Somewhere along the line, God could have stepped in....He could have changed things, but He didn't completely do what I wanted Him to do.  I should be home right now getting supper but instead I'm in a hospital room with my husband sitting Selah up in her bed as her heart rate rises, my kids are at the hotel waiting for us....no this is not what I would have wanted...but I'm learning to let go... God is in control, He can write this story,  I am not in control of how things work out. 

When we were adopting the children, I knew that my life would change.  There were a few times that I would have the feeling that "my life as I know it is over"  but then I discovered, it really wasn't much different than the life we already had!  Now I think it will be much much different....  I had decided that if God gave us the children, He would give me the grace to serve them the rest of my life.  I thought serving would mean one thing...it's going to mean something quite different once we get home....It's scary...you have NO idea how afraid I am.  I already have more responsibilities than most folks have and I've gladly embraced it.  These new responsibilities....it is a scary thing.  But the same God who prepared us for the two new little girls will prepare us for this next step.  I have no doubt of that.   Does that mean I am doing cartwheels down the hall?  Not really!  It is a heavy load on my shoulders and on my mind.  In the natural, I have NO idea how things will all work out.  Not just the few things we have to get clarification on but life, day to day....Life.  I didn't ask for the life that lies ahead but I know one thing...I'm going to trust God and I'm going to serve Selah and my other children. 

I'm learning to let God write the story of my life...as a young woman, I had a PLAN for my life, really a plan with 5 yr and 10 yr goals....and I met those goals....  Now I don't have a plan for tomorrow....we had a meeting today and I was asked "what's the plan?"  I wanted to start laughing hysterically...I haven't had a plan for the last 5 months and not much of one before that!  I've been "winging it" for the pat year, not knowing where I'd be the next week.  

I'm not saying NOT to have a plan for your life don't get me wrong!  But I'm just sharing what I'm learning in my life. 

So the "story is not over " for us or for Selah!  I don't know what the story will read but it's not over yet....

Please pray for us and Selah!

Day 65 Fish Oil Study

Selah had a good day today.  She  got very angry when we put her arms splint on.  She did something we had never seen her do.  She raised her arm, with elbow bent and brought it down several times. like a judge would!  She evidently got so mad that her heart rate went up to the 160s but since it was because she was upset, she calmed down after the splints were taken off.    We are using these splints because at times her hands/arms are drawing in.  Last week we had that odd episode where her arm was out to the side.  That was very unusual and hasn't happened again.   If anything she tends to draws her elbow in towards her sides.  We first noticed it right before we left NY but it has gotten worse on some days.  She did prior to the accident, have a strange way she held her arms.  It caused her to be diagnosed with Cerebral Palsy in Ukraine.  Our pediatrician and the therapists who evaluated her when we got home did not feel she had CP, she had full range of motion she just had an unusual way of moving.  At first we thought she was just putting her arms/hands into the old positions but it seems she has gone beyond those positions. 

Last night I bought several of the heat up thingys....Selah had some cute ones that I had bought up in NY.  But she had an accident on them and they had to be thrown away.  I found her 2 that are like long scarfs that can be wrapped around her legs.  I also got a heat up neck pillow.  Today I warmed them up and used them on her legs.  She sat up in her chair for about 45 minutes working with the heat up pillows.  I was able to get some good range of motion on her legs.  When she sits up in the car seat, gravity helps bring her legs down into a more normal position.  Then the heat and weight of the pillows help her legs relax some. 

We are still waiting for the MRI results, we were in and out today so we missed getting the copy.  We are also waiting on the blood test results. 

We have been waiting on get Selah's nursing set up.  Since we live in a rural area, it has been difficult to say the least!  We've had a social worker here working hard on it for weeks and she has just been given the run around by different agencies.  So today I called the Governor's office....I was listened to and then sent to the head of the Medicaid dept there in Tallahassee.  The person I spoke to said our case was serious and they would work on it.  Within the hour I got a call from an administrative person in our county who assured me that would work on our case tomorrow (it was very close to 5 pm)  Every agency has said because of where we live, they can't service her.  Since they all have contracts with the State to care for patients within our county, there is some obligation to do that!  I understand contracts with the state ....at one point I worked for a contracted agency and then later when I worked for the state, I worked with contracted agencies and did reviews on them.  I also know what happened when we'd get a call from the Governor's office regarding a case.....we JUMPED!   I know I worked within the criminal justice system but it is the same overall rules.  So I'm not as worried as some might be over this...I feel like it will be resolved.

I'd been thinking about the flu vaccinations and read today how bad the flu season is this year so I found where we could get flu shots.  We went to the Health Dept and we all got our shots.  The nurses and the staff there were amazing and so kind.  They got us in and out as fast as they could.  We have been getting flu shots for years, all of us and never have had any issues.  It's late in the season to get flu shots but we have been a bit busy.  I would encourage you all to get your flu shot.  I grew up not getting vaccinated for anything.  I almost died from the whooping cough, I was sick for months and months.  I had every childhood disease....it was AWFUL!  I am the absolute opposite of my family, my kids get every vaccine out there! None of my kids have ever had any problems from any shot, not even a fever....  And even if they did have a slight reaction, it is still worth it to be protected!!!  And my poor adopted kids....they come home and go to the doctor and their first visit included 6-7 shots!!  Today we were even able to get Sarah's Hep A and B boosters! She wasn't too thrilled with it!

We had some friends come over tonight and then we finished the night watching  "Domesday Preppers" ~ my favorite show:)  And then Diggers, makes me want to go buy a metal detector!  Looks like fun!

Several folks have asked about my back/shoulders.  I am still having problems with it!  A friend of a friend sent me a gift for me to go and get a massage and I did last week at http://www.southerncomforttherapeuticmassage.com/#  thank you friend!  And thank you Southern Comfort, I had some relief for awhile!  Jon wants me to go to the doctor but honestly I don't even know where to start....maybe if we ever get home.....  I hope to go back to Southern Comfort thanks to my friend's generous gift!!!

Please pray for Selah...she is still not at the point she was at before we moved her.  We are wondering more and more if the regression is not tied to her whole institutional autism.  Could she be so upset from the move that she has regressed?  That certainly doesn't seem to explain everything....I just want to get her home but I want to be safe about it.  I know my limitations....I'm only one person, Jon works two jobs and can be called in to the prison for an emergency ( and has been called in numerous times)  and of course as a pastor, he has to be ready to go to member's if they need him!  We need reliable nursing care!

Just pray for her, we want her to interact with us more, we want her back to "SELAH"  We need God's mercy!!!

Day 64 FOS~ 7 years Gotch Day for Shad!

GREAT news today....sit down:)  Not only is Selah doing much better~no storming~ sat in car seat for almost 2 hours while I did range of motion and stayed calm...  BUT her regular doctor was back and gave us more info on her MRI.  There is IMPROVEMENT in her brain since the last MRI done back in early November before the start of the fish oil study!!!!!!!!!!!  I've asked for a copy of the MRI report so I can explain it better and figure out what it means but I got the impression that this was not a usual occurrence:)  I believe the improvement is in the white matter area/PVL which is great!  I'll have more details tomorrow.

Her blood work got to the lab too late to be ran today but we should have the results of it tomorrow also, regarding the inflammation level.  Right now we know things are being done correctly and we can tell from how well she is doing.  When we started the fish oil in NY, there was overnight improvement as far as no storming and a calmness/alertness.  It seems to be like that again.

I am so thankful that last week is over.  Last Thursday night I could not have felt any lower and hopeless....thank you for your prayers!  They gave us the strength to get back up and keep going.  I am so thankful for God's presence.  Living like we are, it's not like I have much "alone time" so I've learned just to reach out to God in my heart, even when I'm busy doing something else.  I just kept calling on God, just like on the day of the accident...."Oh God Help"....  and He did!  Sure we opened a new bottle of fish oil BUT He had helped me already!  If I didn't have Him with me last Friday when Selah was storming & vibrating all day I could not have stayed at the hospital but we made it through and then on Friday night opened the new bottles and now things are so much better again.   So we think somehow the fish oil or the mixing agent get contaminated during the two weeks or so it is used, that's why we see these big improvements when a new bottle is open.  We never had this problem before, and don't feel it is the fish oil but the way it is handled.  We think it all has been resolved now. 

Tonight I realized that today is Shad's "GOTCHA DAY"  Today marks 7 years, right about this time that I met my little guy!  (it was 9 am China time which is 12 hours ahead of EST- so actually I met him on the 8th in China but it was the 7 th here!) 

This is Shad & me seconds after we met:)  He looks a little concerned....."are you my mother?"  YES!!!!!  I am!!!!!

I went to China alone.  Sam was not yet 2 yrs old and got so sick so easily we were afraid for him to go and we were afraid to leave him and go by ourselves.  Right at the end I almost took Steve but the swine flu was really bad that year and we just felt like it was the safest thing for me to go by myself.  It made a woman out of me LOL!  There was another couple there, the wife had her husband, her mom and her teenage son and she cried everyday...I thought I was going to have to slap her...for real!!!

It was a lonely time for me but an amazing one... walking into that cold Chinese orphanage and walking out with this funny little boy who'd stolen our hearts.....what an amazing day!  I will never forget that day!  I realized in just about 3 seconds that...
A.  Shad wasn't completely blind
B. He probably wasn't mentally delayed either !!!  (as he tried to take the lamp apart)
C.  He liked to EAT!!!!

Shad's first American word was MORE  as in "more food"  he ate grown men under the table.  He was the hit of the adoption group (as he always is the hit of any group)  and the men liked to see how much he'd eat....Me....well I was changing the diapers (with WORMS in them) after all the eating...I QUIT eating LOLOL  (for real~ saltines were it for me for about 2 weeks!)

Shad has been a blessing to our family.  It's hard for me to remember he was actually adopted, it doesn't seem possible this kid,, that is so like his dad, came from the literal other side of the world!  Chengdu China is almost exactly on the other side of the world from Florida!   He is the life of any party and he has never met a stranger.  Shad (short for Shadrach) has an incredible self confidence, he just walks up to people and starts conversations.  He finds himself interesting and is sure that others do too!  He has an unique ability to be himself and not feel under pressure to be any other way...I adore that about him!   Shad has a way of dealing with life, that goes far beyond his 9 yrs.  He is an "old soul"  We've had some deep conversations about how he came to be adopted into our family.  The first conversation came at just 4 yrs old...I wasn't ready.... but he has dealt with questions.  I think of his birth parents and who they missed out on knowing...just because he was not "perfect"   But we have been blessed to know and love him for these past 7 years.  We're so glad he came into our lives.....we are the family that we are, because he is a part of it!

Shad had some gift cards to spend so we went Toys R Us and he bought himself some more Nerf Guns.  He has quite the arsenal going!!  Steve gave him a gift card of his and he was also able to get a Xbox Lego Game Batman 2 DC (has all the comic heroes in it)  He is a happy boy tonight:)  I also told him today was Christmas Day for Ukraine so he said he was helping them to celebrate:)

Today is also our 7th year anniversary of Jon pastoring GRACE CHURCH!  Yes his first Sunday was actually the day ( Monday in China) I picked up Shad from the orphanage...Big day for the Clanton family!!!!!!

So tonight I am a thankful woman!  Selah is doing much better and this is a great day to celebrate 7 yrs of Shad being our son!!!