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!!! 

What is Ministry?

This is one of those posts that I've been rolling around in my head for awhile.....these are the kind that usually get me in trouble LOL....

What is ministry?  Ask that to people and you'd get all kinds of answers.... 

Jon & I have always been "different" in our approach to ministry.  We've just lived our life and it has happened.  When we were younger we were taught the steps of "how to be in the ministry" but the steps didn't ever work for us because that wasn't who we were.  Jon never "pushed" himself forward in ministry circles.  When we were young, I used to encourage him to do "the things" all the young ministers did, go to meeting, "network" etc...  I soon learned that wasn't going to happen with Jon.  Not that he was disrespectful of others, he just had no time for it.  He was too busy doing ministry to try and meet someones expectation of "ministry"  He was doing the ministry no one else wanted to do.  He didn't have to worry about competition LOL  there were no lines of ministers waiting to go preach at the homeless shelters or the jails or at the  little country churches!  And that was where his heart was and is now! 

I can't help but laugh sometimes at some of the various mailings and emails we get..."how to build your ministry"....is that too funny or what?  Maybe I'm the only one who gets the irony of it. 

We are not interested in being the CEO's of a ministry:)  God didn't call anyone to "market" ministry, just to do it.....Sure you can work it and build numbers but is that truly ministry?   When I see "ministers" who have body guards or "armor bearers"  I have to roll my eyes and laugh, it's sick to me.  If you are so important you can't spend time with folks in your congregation or who come to your meetings, I think it's time for an evaluation..... past time!  God didn't call anyone to build empires!

God called us to faithfulness.  He didn't call us to be "successful" by the world's standards.  There is nothing wrong with growth!  Don't get me wrong but our striving should be after what God wants than what brings us "validation" as a minister.  I know plenty of pastors who will do just about anything to bring in people, "the ends justify the means"  They will preach a sermon that doesn't challenge the congregation in order to keep folks...  it's tempting as a pastor to skirt around various issues so you don't offend but just remember you aren't preaching your bible you are preaching God's bible and let the chips fall....

For example I have some dear friends who have chosen to live "inmoral lifestyles, I love them, I do not preach to them but I believe the bible teaches that is a sin.  I didn't write the bible...God inspired "holy men of old" to write the inspired word of God.  (  Read 1Timothy )    My thought is I chose to believe Gods word whether I like it or not.  I live according to the bible, I don't try and make the bible say what I want it to say.  Too many people today are afraid to have any standards.  They say "who are you to say what is right or what is wrong?"  I'm no one to say in myself to say what is right or what is wrong but I stand by the Word of God.

I hear the argument all the time that the bible was just written by men....usually that argument comes when you talk about something that someone doesn't like in the bible.  But then that same person will quote the bible when it benefits him!  Tha's not right....either take the WHOLE bible or don't take it at all.  Don't pick and chose scripture....  I know folks who regularly sin ( according to the bible) but they ask for God's blessings in their lives.  It's like they want only what they want from God without having to have any responsibility on their part!  So many parts of scriptures have promises to us but they also come with requirements to get those promises...such as this verse

16 Wash yourselves and be clean!
Get your sins out of my sight.
Give up your evil ways.
17 Learn to do good.
Seek justice.
Help the oppressed.
Defend the cause of orphans.
Fight for the rights of widows.
18 “Come now, let’s settle this,”
says the Lord.
 “Though your sins are like scarlet,
I will make them as white as snow.
Though they are red like crimson,
I will make them as white as wool.
19 If you will only obey me,
you will have plenty to eat.
20 But if you turn away and refuse to listen,
you will be devoured by the sword of your enemies.
I, the Lord, have spoken!” Isaiah 1:16-20

 

 

So I went from what is ministry to this ....but the point is to give a pure message, not a watered down one. 

 

There used to be quite the controversy in our christian circles about whether every believer is a minister (of course they are) or if there was a special calling to the ministry (of course there is)  So if you are a full time minister, if you have have that calling, you have that responsibility to do the work of ministry NOT building yourself or your name up.

 

 

We were asked when we were gone so long from our church Grace Church how would it get along without us?  Well our church was not built on Jon's personality!  It was started years ago before either of us were born and hopefully it will be going on after we pass away!  Our church is not a large church but the folks were faithful without anyone telling them to be.  Why?  Because they were there to serve God and God wasn't stuck up in a NY hospital!

 

But if you are a believer you also have a ministry, by living your life to glorify God.  By reaching out to others, by being kind and loving.  One thing I've learned over the years is to just care for others.  People may chose to live their lives different from what the bible teaches BUT that doesn't mean you can't love them and be their friend!  I have friends of various backgrounds and religions, I love them and they know it.   I'm not trying to "get a notch on my belt" to get them "saved"  I'm friends with a Wicca priest:)  We are really friends, Jon & I enjoy him as a person.  He knows where we stand and we know where he stands and because we like each other we have great conversations:)  I have a friend who is a Jehovah Witness.  We worked together for years and enjoyed each other's friendship.  She wasn't allowed to eat in public with a non Jehovah Witness so we'd pick up lunch and eat at our desk.  I have friends who are Muslim, Mormans and even an Agnostic or two:)  Don't shy away from someone just because they believe different than you and don't try to shove your beliefs down their throats.  No one like that!  Just be a friend.  I'm not saying not to share what you believe, but enjoy the person don't beat them down!!   

 

So what is ministry?  It's reaching out to others, daily, showing love, showing God's love and compassion to others.  It's not living within a "Christian bubble"  Alot of ministers I know, don't really know how to live outside the bubble.  They don't know anyone but Christians....  there time is filled with "christian things"  Jesus didn't live in the temple...he was a friend to sinners....remember we are all sinners....  I almost believe that all ministers should have to work a secular job because in this day and age too many insulate themselves from others and from the real world.  (see I told you too much thnking gets me in trouble LOL)  It's not about wearing a suit and a tie and calling each other Pastor.  It's about reaching folks and loving them! 

 

So I know this is a bit different post than my ones about Selah but I started this blog in order to write what was on my mind.....

 

 

 

Day 63 fish Oil Study

Another good day for Selah.  No storming at all, she's been relaxed and alert according to the nurse.  Her tone has been better also.  We'd hope to get back in time to go see her but we drove up in a rainstorm and we have to get all of Sam's meds done tonight. 

We were able to be at our church this morning.  Jon also did a service at the prison.  Our house is completely ready for Selah now.  Everything is in place except for the bed and other stuff that will come when she does.  What a load of my shoulders to have everything done.  It was a big job!  Thank goodness for Val getting the house so clean!  It made it easy to put everything up!

Tomorrow we hope to get the results of her blood test for inflammation.  That should answer many questions for us.  If it is higher than 1.1, we will know that the fish oil has not been handled correctly at some point.  We feel that it is being handled correctly now.  Of course we are using a new bottle now also.  When Selah was tested prior to start the fish oil, her inflammation level was 15.0  In two weeks time it went to 1.1.  Now we will see where it is. 

A friend gave me a good idea....if you live in our area and are a nurse or know some home health nurses and you'd like to work for us.  can you contact me at  theclanton5@aol.com  ?  I can put you in touch with the agency we are working with.  They are finding it difficult to find 24/7 nursing for us due to where we live.  I don't know how everything is arranged but the agency can work out all the details.   We'd like it all set up before we leave!  And we want to leave soon!!!  So rack your brains my Florida friends we need help. 

Thank you for all the messages I've gotten about churches praying for Selah and us this weekend.  Thank you all so much!  I can't explain how prayer helps but I believe it does!  I feel strengthen and ready for this coming week!  Last week was very hard.....

Day 62 Fish Oil study~ much better day!

Thank God, Selah had a much better day today!  We went in this morning with all the kids and she was turning towards them. She was much more aware and much more relaxed!!!!  Her tone was good and she was looser.

We left for home and called several times.  The only issue she had was around 8 pm, her heart rate went up to 140 and the nurse decided to give her Valium.  It was a new nurse, we probably wouldn't have asked for it and just watched her.  I think she was being changed and just got upset.  All in all a much better day. 

Obviously we feel this is all related to her fish oil.  The last bottle was not consistently kept in the freezer.  That is the 'best practice".  This one will be.  Perhaps the other one got contaminated...who knows but we saw a difference last night as soon as she got the dose! 

Hopefully we will find out Monday her blood test results!  Then we will know if this regression is linked to a problem with the fish oil. 

We came home to the cleanest house ever!  My sister in law had done our carpets and everything else!!!!!!!  Thank you Val!!!!!   I don't think this house has been that clean since we moved in LOLOL!  What a weight off me:)  My friends had cleaned up for us, but in all the working and pulling things out....we had really messed it up!  She even cleaned the windows:)  What a great sis in law!!!!!

So please pray for our little girl as you go to worship tomorrow and if possible ask your church to pray for her.  Pray that she will be touched by God and healed.  We still  pray for God to deliver her....   I keep holding on to the dream I had right after the accident....  It was so real.  I dreamed that she and I were in our house and suddenly she was "back" mentally  The only thing that was wrong was she couldn't walk....  That would make sense now to me.  Her legs/ankles are so affected that she will have to have surgery.  They are pulled into a ballerina pose, very uncomfortable.  At the time of the dream, the whole feet/leg thing didn't make sense to me.  Her legs were just getting tone and we did not understand the ramifications of it.  But now I understand.  I pray that dream comes true, we can work on the feet/ankles!!   Pray that our nursing situation will work out quickly so we can go home!  Her room is ready and waiting for her! 

Thankyou for your prayers!  They have given us renewed strength!

Day 61 Fish Oil Study-what a day...

Whew.....

We got there early and Selah had already started storming.....

Some have asked what storming is...for Selah it is her heart rate rising (normal for a child her age is under 100)  she can get up to 180-200!  She gets stiff, she begins "vibrating" and sweating....it is awful to watch.


We talked with the doctor who seemed concerned and she ordered a bunch of tests.  Xrays to rule out some hips displacement problems, and to make sure her lungs were clear.  MRI to check her brain for fluid build up or any other issue, EEG to rule out seizures, bloodwork to rule out infections and a urine test.  To take Selah for the tests she had to be wheeled across the inside bridge to the bigger hospital next door.  Both times we went, she stormed so much we had to turn around and bring her back for some meds to calm her down.  By this point Jon and I were so upset and worried.  Selah could not handle any touch nor did she even like anyone to get near here, her heart rate would just climb.  This went on all day.  Thankfully they did the orders so she could get medication as needed to help her.  I am NOT a fan of alot of meds BUT believe me if you saw your sweet child shaking you would be begging for something for her! 


So every single test came back unchanged.  Normal for Selah/for what was expected.  No change, No seizures, no extra fluid on the brain or blood clots, no infections......


We also had her blood sent to Dr Sear's lab for her monthly blood test for inflamation.  When Selah began the Fish Oil Study 61 days ago her inflamtion level was 15!  That is high for a child.  After one dose of fish oil, Selah never had another storm there.  Within two weeks her inflamtion numbers were 1.1!!!!  That was perfect!  She did not have another storm until she had been here for a week.  She has not had that tested since she has been here.  If the number is higher than 1.1, we will feel we are correct in thinking there has been some sort of mix up with her fish oil study.  We should get those results on Monday or Tuesday. 

Tonight I opened a new bottle of fish oil and a new bottle of the stuff it is mixed with.  Since that time her heart rate has been normal although she still seemed agaited.

One thing that really bothers me is there is not alot of respect for the fish oil study.  We came here with the assurance that the hospital would work with Dr Sear's office and follow the protcol.  We know the protcol has not been followed at times and now we have been questioned about the authenticy of the study.  We consisitently refer them back to Strong's Hosptial or to Dr Sear's office.  At Strong's the study was put to an administrative review board and it passed!  It passed several reviews, the names of the reviews I can't recall right now....but Strongs' is not some crazy little country hospital....LOL  It is one of the leading hospitals in the NY/Pennsylvaian Ohio region!!!!    This is a real sore point for us! 

We had a real down day yesterday and a sad night but God gave us the strength to get up today and fight for our daughter! 

God knows we HATE what happened to Selah.  We all have gone over and over the accident in our minds and all the little ways perhaps if could have been avoided.  I think we will do that for the rest of our lives.  We adore Selah, she was a bit of a surpise to us, we were planning on adopting another child who got adopted by someone else but we soon saw that SHE was the one God had for our family.  The adoption and the adjustment into our family was flawless with both girls (WAY more easier than with Shad!!! )  All summer we kept pinching ourselves and wondering if we'd ever really have any adjustment issues....and we didn't.  It was unreal and perfect:)  Then....our world crashed....but we loved Selah so much we didn't give up, even when the doctors said we could just not do some medical interventions and she would pass away...we wouldn't give up!  We made some promises to that little girl, that nothing could change!  We stuck by her when she didn't know we were even in the room and then we had many victories and thought we might be the ones to get a medical miracle!  Right now we don't know what is going to happen now....we feel like this will be resolved and she will begin recovery again but even if she doesn't we are going to be there for her 100%!  I'm not telling you all this to impress you but I'm just explaining how we feel.  Neither Jon nor I care about how we look to medical staff or administration,we are so far beyond that it so doesn't matter anymore.  I can speak my mind and hold my head up as I walk down the hall.  Why?  Because Selah is my daughter handpicked by God for us and I will NOT stop fighting for her!  We know where she was in recovery, we were there daily, we were in therapy with her, we worked with her.   We were not fooled and we can see she is not the child who was recovering in such a marvlous way.
This has been a hard almost 5 months for us but it has been harder for Selah.  I can't imagine what she has gone through.  Pray for our little girl that she will begin recovering again!!! 

One thing we loved her from the beginging...but having gone through this ordeal, Selah is even dearer to our hearts.  We both feel very protective of her.  It's funny,but  when she can't really show us affection, our love for her continues to grow...   Sometimes the fear of the future wells up inside of me but when I look at that precious little girl and know all she went through before we adopted her and now the accident... that gives me the strength to know we can serve and care for her no matter how intensive that care might be.   And I know who we are depending on for strength also.  We know God will give us the strength and wisdom we need for the job ahead.  We have no choice, there is no way we are giving up on our girl!!!!

We have a great aftercare coordinator who is working on getting our nursing set in place but the one agency we'd hope to use can't give us enough staff to fill our 24/7 schedule.  but we have a few people working on things.  It's just a matter of time. We hope to have it resolved and nurses in place by Wednesday....we understand how this all works!  We live in a rural area with few pediatric patients...please pray that this is resolved and we can get Selah home!!!!!!!

Pray that the new fish oil bottle and mixer is what is needed and the storming will stop!! Pray that we get her home to her beautiful new room, with her new swing outside and a peaceful home.  Our home was the perfect size before but adding a full time nurse and with Selah having her own room, it certainly will be challenging in some ways and NO we have not heard from Extreme Home Makeover yet but hope to one day!!!   We haven't decided what we are going to do yet.  We probably won't build onto this house since it is not our own home, it is a parsonage and is owned by the church.  I think the most important thing is to get her home and see how things work out.  Our family is pretty flexable....obviously!!!  And we don't have to have things perfect....but it will be perfect for her!  That is the most important at this point.  We can meet her needs right now with things like they are and we will figure out the rest later! 

So if you attend church this weekend please ask for special prayer for Selah!  Pray for peace and comfort for her.  Pray that God will have mercy and heal her!  Pray that the fish oil study will not be hindered in any way!  Thank you!!!  We want our sweet little girl back! 

Day 60 Fish Oil study

Back on Day 1, I thought by Day 60 Selah would be so far ahead than what she is today.

We had our weekly meeting today.  Basically it comes down to we are not happy nor do we have the same level of teamwork/trust as we had in NY.  We asked to be transferred but that is almost impossible since she is not acutely ill.  We already understood that but had hoped they may want to transfer us so we put it out as an option.  We are hoping for a release date of Monday and alot of things are falling into place so that might just happen.  Jon & I are going over training/discharge paperwork in order to leave on Monday if the nursing is set up.  That all is being worked on by different agencies.  Pray that we will have everything in place by Monday with 24 hour nursing as we have requested due to our circumstances.  Thankfully in our state, they do have to take into consideration our other children.  I'm not sure how often they've had a family with three disabled children.  But everyone seems to think that will tip the scales in our favor.

Selah had a storm at 3:30 PM her new regular time.  Then she got her meds.  The storm only lasted about 10 minutes.  But then at 4:30 pm it started again.  It took her about 45 minutes to bring herself down.  We have no idea why she is having storms again.  All I say is once she had started the fish oil study on Day 1 she went from storming several times a day to no storming again until a couple of weeks ago.  The fish oil bottle was changed (we thought it had been compromised) and she didn't have another storm until this past Tuesday. 

She was evaluated by a neurologist who was called in.  In a nutshell the neuro basically said Selah was at the same place as she was in NY according to their (NY) records....The neuro said it was "how she was viewed or how it was interpreted or read"   Basically that means Selah is the same, we all misunderstood her in NY......    If it was not so asinine, I would have to laugh but at this point I just want to cry....I can't even discuss how we feel about this but to say we do NOT agree that she is the same as she was in NY!  Two major documented differences...1. she had quit storming in NY  2. she was swallowing in NY...  Those aren't things that are open to interpretation or subjective views......

Jon and I just have our heads down and are plodding along, making sure we have everything ready for her release on Monday.  We are beat down and discouraged in a way we have not been before.  At least during the hard times in NY we had confidence in those who were working with Selah.  That makes a huge difference when you feel everything that can be done is being done.  If there were any questions about her health, they turned over every stone to make sure she had proper care!  We didn't have to ask for it, it happened in the course of treatment!  Can I say again how much we love Strong's Hospital in Rochester NY!  We knew we were in the best hands and had confidence in that!  We do appreciate the nurses who have been working with Selah here, we have three lovely ladies who do the majority of her nursing and they are great and caring.  One is from Eastern Europe herself, one from Morocco and one homegrown:)  But this is far different than Strong's

So our prayer request is that everything comes together in the way we need in order for us to be most comfortable in bringing her home.  We really want to go home on Monday with her.  Our family needs to be home.  Up until this past week or so I've not even let myself think about going home and actually living there with our family.  I am so ready.....  I think we are all at a breaking point, Jon, me and the kids.  The kids have all been so great and have had wonderful attitudes through this whole ordeal but they need structure in their lives again.  I'm really proud of Steve and Shad, they have not complained at all about losing their room and having to sleep on the floor.  Honestly not one word or grumble, they've treated it like an adventure:)  They've all "gone with the flow"  Last night Sarah had a nightmare and woke up screaming and shaking.  I had to hold her and sing to her for her to calm down.  She was doing the long shuddering breaths....she finally calmed down.  I think we haven't given her enough attention the last few days.  I stayed home with them this morning and held her and fed her and talked to her...  I think just a few months ago she was living in a mental institution.  Now she just goes with the flow and has adapted so well to everything but some days she just needs Mama!  And I need her and her sweet laugh!!!  But we are all ready to be home, even tho home will be so different......

I have never tried to say what I thought our future looked like....we hope and pray for Selah's healing.  I can't believe this is the ending we will have....  but I don't know....  I cry out to Jesus every night and every morning when I wake up. It comes welling up from inside of me.  Sometimes when I am half asleep, I find myself fervently praying for Selah without evern thinking about it.   I ask for His mercy over Selah....  I ask for Grace to walk whatever path that lies in front of us.  I don't understand why others have had a recovery and Selah hasn't....  But I am still going to trust God. 

These past almost 5 months have been the hardest walk I've ever had...and there is no end in sight right now.  Please pray for Jon & me, we need your prayers, now more than ever.... 

Thank you all again for your prayers and for your many kindnesses to our family.  I am beyond behind on thank yous but please know we do not take anything for granted.  We have learned by the outpouring of love to know how much it means to be reached out to.   There has been times in other's situations that I thought maybe I should send a card or something but figured it wouldn't mean that much, probably so many others were doing it ....OH but it does mean so much !!!!!   I'll never squash that impulse again even if I barely know the person or even if I don't know the person!    So thank you all! 

Day 59 Fish Oil Study~ complete bad news

I do not even know how to write all that has happened today and all that is on our minds...

This morning we came in Selah's room and her right arm was lying out by her side like she was on a cross.  It looked so odd that it caught my attention immediately.  I went over and went to move it and she winced and her heart rate soared.  I stopped moving it and went and told the nurse I wanted a doctor in to see her because I thought her arm was hurt.  An hour or so passed and the doctor came in and said nothing was wrong she was doing a new movement/posturing.  The OT had also come and saw it and thought it looked odd, not something Selah's body was doing on her own.  We still asked for an xray that took hours to get and more hours to read and get the results.  Tonight the results came that there was no broken or fractured bones.  She stormed today right after they were doing the xray for about 5 -10 minutes again.  She reacted to being moved as if it really hurt her.  All the doctor would say is maybe she is sore from the spacity and that is why she reacted like that.  I have no idea...my gut tells me NO!

This is a new doctor to us.  We went through all of the ways Selah has regressed since she has been transferred here.  The doctor, of course, puts the blame on Selah.  "She has had so much brain damage, she is unstable"  I kept repeatedly saying that she was stable for weeks and weeks in NY.  It was like talking to a wall.  She did call in a neurologist, who will come in tomorrow.  She seems to think that Selah "just happened to decline" when she came here as that is part of the whole brain injury situation.  We do NOT believe that for a moment!  She also suggested that something may have happened on the plane trip, but she was hooked up to everything and nothing registered a problem.  She also suggested Selah may have increased water on the brain.  She thinks a CAT scan (because it is easier to schedule) should be done.  We disagree, we want an MRI because it is much safer and Selah has had a couple of CAT scans so we are done with those for now!!!    We've asked for a MRI for weeks and they act like it is soooo hard to schedule one.  Truth is NO ONE has tried to schedule one to my knowledge. 

I am beyond frustrated tonight.  Since the day we arrived, we were shocked at the decline in Selah.  It took us 2 days to drive here and in those 2 days we couldn't believe the change in Selah.  It has gone from bad to worse.  We do not feel that we are listened to at all.  We constantly tell them to call our therapists and doctors in NY for more details and to my knowledge that isn't done.  We feel like they think we are just very unrealistic parents who thought there was a tiny bit of improvement in their hopeless child. 

Please don't make a ton of suggestions.  Right now we just want to get her home.  It is almost impossible to transfer her to another hospital at this point.  We know, remember we were in NY for 18 weeks?  At least 12 of those weeks trying to get to Florida.  Just pray that Selah will not decline any further and that all the insurances/planning will come together and that she will be ready to leave with 24 hour nursing on Monday. 

Jon and I are very upset, worried and distraught.  We do not know what is wrong but there is something terribly wrong here.  I still believe it comes back to mishandling of the fish oil.  I have no proof of that now as it is not brought into her room until it is already mixed but the smell is gone again.  Her clothes still have a smell but tonight I just buried my face into her hair and all I could smell was Selah...not fish oil.  I just want to get her home although I am petrified of the responsibility....

We watched some videos we made of her in NY in therapy after the accident and we both cried because she looked so good and aware.  She was making great eye contact and doing things.  Now she is barely there again....it's awful to have had such great progress just to see it slip away.  I think that hurts more than anything!!!!