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

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

This was my post on FB today:

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

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

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

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

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

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

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


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

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

Day 13 Fish Oil study

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

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


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

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

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

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

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

Bless the Lord O My Soul

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

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

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

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

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

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

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

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

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



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

Day 12 Fish Oil study & a BIG thank you!

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

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

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

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

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

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

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

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

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

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

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

Day 11 Fish Oil study

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

http://reecesrainbow.org/38066/sponsorbasas

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

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

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

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

Thank you!!!!

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

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

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

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

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

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

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

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

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

Thank you for your prayers and support!