Fatih & Suffering

"Untried faith may be true faith, but it is sure to be little faith, and it is likely to remain stunted as long as it is without trials. Faith never prospers as well as when all things are against her. ...let the howling winds rush forth, and let the waves lift up themselves, Though the vessel may rock, her deck may be washed with waves, and her mast may creak under the pressure of the full and swelling sail, it is then that she makes headway toward her desired haven. Tried faith brings experience. You could not have believed your own weakness had you not been compelled to pass through the rivers; and you would never have known God's strength had you not been supported amid the flooding waters. Faith is precious, and its trial is precious, too." ~Charles Spurgeon


In today's world we so often hear of FAITH...but is it a true faith that will carry a person through life's storms or is it faith just to get what we want from God? 

What is faith?  Is it just wanting something?  There are alot of things I WANT...most of them good things.  I want our church to grow, I want Selah healed,  I want to help get more orphans home, I'd like a bigger house and big van and lots of money so we could hire nurses and adopt more kids....I want to be able to give more to others.....I even want to buy a new bed....BUT my faith is not me "believing God" for these things, even for the good spiritual things.  Faith is so much more....

My faith is God has grown so much in the past year.  I can look back over my life and see events when I trusted God and stepped out of the boat.  When I left home to go to Bible College, all alone with no money, that was FAITH!  Looking back to that time builds my faith.  I knew I had heard from God and I did what He told me to do regardless of the naysayers all around me.  My faith grew...

When we stepped out of the boat and adopted Shad....wow....we knew we had heard from God and we did what He said despite the naysayers all around us  (btw those naysayers have shut their mouths~they all want a Shad now LOL)   Our FAITH grew....

When Jon became the pastor of Grace Church and stepped into that role, we realized that was where God wanted us to be, that took Faith!  As we faced struggles and triumphs in the church, our Faith has grown...

We when heard the little whisper "go get that little girl" and we stepped out by Faith, oh how our faith has grown.  That little girl, soon became two little girls that needed us and that we needed to make our family complete.  Oh our faith grew as we knew that only God could make that adoption happen...and He did....

Now this accident...it's been like strength training for our faith....we have gone deeper, dismissed the fluff in our lives and held on to God, not knowing what the outcome would be....we still don't know the outcome, we have more hope than ever before but we still don't know what is ahead for us and Selah, but we know Who will be with us.  Oh but our faith has grown....

So for me FAITH is not so much what God can do for me....it's what I do for Him. JFK said in his inaugural address the famous line "Ask not what your country can do for you , but rather ask what you can do for your country"   In a spiritual sense most Christians ask what can God do for me rather than what can I do for God.  They think God owes them the perfect middle class American life without any suffering at all.   But as we have walked down the pathways He has shown us, we have learn to trust.  We have learned by our faith being tested.  And it has been sweet.....NOW I can testify to you that without shinigins or craziness that God will be with you no matter what.  I will not tell you things will go the way you want them to go but that you can have peace.  I will not tell you to claim promises, speak Life, rebuke the devil, demand healing, or any of those things that the pentecostal/charismatic movement will often tell you to do in a hard situation...but I will tell you to throw yourself on the mercy of God, to bow your heart to Him, even when your heart is breaking.  I will tell you to trust the ONE who holds this crazy messed up world in the palm of His hand.  I will tell you that eternity is forever and these present sufferings will be as nothing on THAT day....I will tell you that life will test your faith and that God will allow that, because that is how we grow. 

"For I reckon the sufferings of this present time are not worthy to be compared with the glory which shall be revealed in us" Romans 8:18   (Look Paul was southern ~  He RECKONED LOL

Romans 5:3-5
Not only that, but we rejoice in our sufferings, knowing that suffering produces endurance, ⁴ and endurance produces character, and character produces hope, ⁵ and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us
.
1Peter 4:12
 Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you. ¹³ But rejoice insofar as you share Christ's sufferings, that you may also rejoice and be glad when his glory is revealed.

These scriptures thrill my heart!  They give me peace and a hope!  But you won't find them in the cute little "Promise Books"  or "God's Promise Books"  No one wants to hear about suffering...but it is there and it will come to you.  How will you react when it comes?


Let me tell you a story...I've been walking for years, often miles a day.  So a couple of summers ago we were given a week in a cabin in North Carolina.  Oh did we have fun!  We walked up and down mountains and hills and I thought I would die!  WHY?  Because even tho I was walking miles a day, I was walking on a flat Florida walking path....it wasn't the same as walking up hills and down....  Once I got home. I started walking a path that had built in hills so I would be better conditioned to handle hills!  

So compare that to our faith....faith that is never tested, is a weak faith that tires out easily.  But when we face adversities we can grow!  We can get stronger in our faith.  We are all on a one way ticket on planet earth, we don't know when our ticket expires or when we will either.  So I encourage you to use your faith, not for foolishness or personal gain but for trusting in God and doing what He asks of you!  Let your faith grow so that on the day your ticket expires, you will have that strong faith to trust Him to walk with you through the valley of the shadow of death. 

Day 7 Fish Oil study

Still NO storming!!!!!!!   If she makes it till tomorrow it will make a week!  That is amazing!  Storming had become such a part of our life and her response to things that I can not believe it seems to be gone.  Storming is the body's reaction to brain damage.  It is not a seizure but is is still awful to have to see.  With Selah she basically would stiffen, her limbs would become rock hard and her arms would stick out and vibrate....her heart rate and blood pressure would increase to scary levels...and so would mine!  What a relief to not have that anymore. 

Jon was with her all afternoon and had her sitting up in her chair.  She was much more relaxed today in her limbs.  He said she stuck her tongue out at a nurse when she walked in.  I doesn't seem like she is doing it on purpose but we think she is just trying to make a noise and that is how it happens.  She hasn't done anything new but tomorrow is going to be a big day for her!  We are planning on getting over early, we are pretty sure she will make noises as soon as the trach is changed out as she tries to now. 

Please pray that all goes well with the changing of her trach and that she will handle this new one with no problems.

I read a great book today...Kisses from Kate   http://kissesfromkatie.blogspot.com/  what a story!!  It really spoke to me about giving my all.....   We have so much and the rest of the world has so little.....the thoughts I have are for another blog.  One that  probably won't get alot of comments on...it's funny to me how that is....I'm mulling it all around in my brain but her book just rocked my world. 

Day 6 Fish OIl Study

Today we took the kids over to see Selah. 

 

I wish I had alot of stuff to tell you tonight but she is the same, no new things happening.  She still hasn't really stormed at all since the fish oil study started and we are thankful of that.  She did so many new things on Thursday and Thursday night that I think she is having to process it in her mind.  She was quieter yesterday and today.  She hasn't regressed any except she seemed tighter in her arms today but I think she was stressed having so many people in the room and being up in her chair for so long (about 1 hour up in chair and 1/2 hour in my lap)    Her heart rate never went over 125 and then only for 30 seconds or less.  One thing that was new she had her "crying face" on when we were leaving.  I don't really think she understood we were leaving but maybe she did, although I think she was about ready for us to go! 

 

Update:  just called the nurse and she is more relaxed and the tightness in her arms are looser and more back to her "normal"  I think she had too much sibling love today!

 

If you have read the articles I posted about the fish oil study you might somewhat understand how it is supposed to work.  The Fish Oil brings down inflammation and allows the brain to regenerate.  Plus fish oil has the building blocks of brain development DHA in it.  There is alot more than that but that is in its' simplest form. 

 

To get ready for the Fish Oil study Selah had blood work to determine the level of inflammation in her body and the level of a few different acids.  She also had a MRI.

 

With the other patients, changes occurred when the level of inflammation went down to a certain level and the "something" (can't remember what it is) went up.....that usually happens about the one month mark.  BUT we have seen some things already and the BIGGIE is NO storming!!!!!!!    That is HUGE!!!!!   So I have to remember that on nights like this when I feel discouraged.   I just do NOT think it is a coincidence that she had a bad storm Monday morning and thens started the fish oil at 6 pm Monday night and hasn't had one since then!  That is huge!!!

 

But I will be honest, I feel discouraged tonight.  This has been a crazy year for us altogether and the past 13 weeks (we left home 13 weeks today to come up here) is catching up with me.  In several ways we are NOT in a hurry to leave here because of the excellent medical care Selah has gotten but  it would be so nice to know when we were leaving.  Even if we weren't going to leave until January, if we just knew for sure it would be so much easier to plan things.  It's hard to make decisions about things like school ( do we order more books or do we hold off???)  or anything even the holidays.  Do we plan on being here, which is fine, or will we be home or will we be in Jax at the rehab?   I just want to know!!!!!   When we left for Ukraine in March, we left on a ONE WAY ticket!  That was a bit unnerving but we had no choice, it's a weird feeling to not have a return date....and here we are once again on a ONE WAY ticket.....we truly feel like sojourns:)    I think if we had our way completely we would rather stay here until she could come off the trach and then just take her straight home.  I don't know that is going to happen but....that is what we would like to have happen.  And we truly want to see a good snow storm!!!!!  I will be so mad if after all this time we leave and there has been no real snow!!!!!!

 

 

So please pray for Selah, pray that this fish oil study works for her like it has for the other six people.  Pray that she recovers and that we see some more results soon.  Pray that she can handle the new trach on Monday and she can easily make the transition from breathing out of the tube in her throat to breathing from her mouth and nose again.  You have NO idea how much easier it would be for her to be off the trach!  You have NO idea how much I hate the trach.  I have met my Achilles Heel!  I can not deal with it without having black dots in front of my eyes!  I feel breathless even talking in depth about it.  That is somewhat embarrassing to me, after having survived many medical things with Sam but I kid you not I can not do the trach!  So is she is off it, it makes life easier for her and us! 

 

I haven't said this for awhile....but I want my sweet little life back.....I want my baby girl back and our simple life, living in a small parsonage, working in the garden, taking the big boys to school, and the little ones to therapy.....couponing,  cooking for my family, eating dinner together, JUST US! not another 20 families.....MY OWN BED!!!!  I want to be able to tuck everyone into their beds at night and go to sleep under one roof.   I want to see our friends and family.  I want the sweet life I had for 3 months with my 3 boys and 2 new little girls back.....that is all I want....it was the best three months of my entire life and I want it back! 

 

I don't mean to sound ungrateful or unappreciative about anything, we have made things work for our family since this has happened.  We've stayed together and no matter what, after the first few days, we eat together as a family every evening.  We've made new traditions for our family since we've been here and have stayed close & involved.  But I want to just get our little girl, pack the car and go home together and everything be back to normal.....

 

I'm not stupid, I know even if the fish oil works perfectly she is going to have to have lots of therapy because her muscles have atrophied since being in bed for 3 months.  There is a long road ahead regardless....

  So please continue to pray that God will touch her and allow this fish oil to work in an unbelievable way....Pray that it works for her and that many others will hear about this and that this will change the protocol for drowning accidents.  There is nothing that is done for drowning patients except maintain the body.  There is no drug to give nor surgery to do...nothing....if this works for Selah, it could be a huge thing for drowning patients world wide!  

 

Day 5 Fish Oil study

So....we finally went to sleep at 1am last night and then she had to be suctioned at 2 am.  Once we got back to sleep I slept till 10 am with just a few interruptions:)  I don't think I've slept that late for awhile. 

Today she had OT and did good.  All in all she has been quieter today.  That is "how she rolls" but everything was stable.  She has continued all the behaviors including the sticking the tongue way out, like she is playing with her tongue, trying it out again.  We are watching her to make sure that she is positioned good so she can't fall forward.  She has enough strength to move her shoulders forward, but can't come back. 

Despite all that was going on today NO storming!  It's been a full 4 days now!!!!!

She got a flu shot today, upon our request as flu season is coming.  She stuck her tongue way out when she got that shot!

Monday her trach will be changed to the kind of trach she can speak over.  We are expecting LOTs of noise!!!!!  She didn't really speak before this, more of a baby babble but we are expecting to hear something:)  Maybe some screams....she looks like at times that she wants to yell her head off!

If she tolerates this new trach with no problems, then the next step is to cover the trach and just let her breathe through her mouth/nose.  If she can handle that, she can come off the trach!!  She will have to be consistant and not have any issues before that could happen.  That is our prayer!  Please pray for Selah and for the trach situation over the weekend.  IF and this is a big IF this could happen in the near future, we might just be able to go straight home.  That means skip rehab, skip hospital...go home.....we'd love that!!  

We've been patient over the past 13 weeks and still are.  But we are dreading the thought of going to another place, another RMH,  possibly Jon being in Zephryhills, me and the kids being in Jax....and all the ramifications....  We'd rather be here a little longer and then go straight home if that could be possible.   I have to say, we kinda have learned to go with the flow this year with all the traveling and unknowns we have faced and we are still going with the flow even if it includes a rehab but we'd love to be at a point we could go home together......PLEASE pray for that to happen, for Selah to be at the point she doesn't need a trach soon...thank you!!!!!!

Day 4 1/2 Fish Oil

Quick update Selah is doing so much since I've come over after supper that I am going to stay....something is going on with her....I think it is good....

She has been sticking her tongue out of her mouth so much and stretching it into a U shape.  This is something I've never seen her do like this.  I ended up giving her another Popsicle because of her sticking her tongue out so much.  She used to do that to show she was thirsty.  She wasn't as much into the Popsicle but she did lick it a few times and suck on it.  Then she had her "cry face" on so I quit.

When the nurse was doing somethings, like changing her she literally pushed herself forward out of the bed with her shoulders.  It's hard to explain but it is new.  She was also moving one arm like she was trying to get away. Also her arms/hands are so relaxed except when we were changing her clothes, of course!   She seems to be showing more agitation just since supper time....

Why is that important?  Because she got her first FULL dose of Fish Oil at 5 pm!!!

Around 9 pm she started falling asleep, then I'd hear her make a big sigh, I'd check and her heart rate would be like 120 for about 5-10 seconds then it would drop down to normal.  It seemed to me almost like she was dreaming and being startled in the dream, like she was dreaming of falling or something scary.  This probably happened 5 times in a 1.5 hour period. 

Just everything is different...different good I think.  When Selah was evaluated to see where she was on the coma scale, we were told about  Level 4 comas (she's a level 3) and how there is alot of agitation with the patient when they are in  stage 4.  It is looking to me like that maybe starting. 

Please note I am trying not to exaggerate  anything, just writing down things as I see them happen.  As a mom I notice things that are different quicker than anyone else would.  I'm seeing things tonight that I have never seen Selah do since the accident.  Little things, but several little things all at once.....we honestly don't know what to think.... I wish her therapist were here.   It's a good thing I don't have her phone number or I'd be calling her to come and watch Selah with me LOL

My FB posts tonight.....
Selah seems restless tonight. She blew out her breath and I looked over and her heart rate was 120 then it went back down. She also did a little stretch, she is not stiff at all except for her ankles. She had been sleeping. This is different, not 100% sure that it is good but it is different and new.  she also had her tongue stuck WAY out of her mouth like she was thirsty and so I tried another Popsicle and she started crying; she is also stretching more tonight, NOT postering, there is a difference.  I almost am thinking I need to stay over here just in case.....I don't know if the "just in case" is good or bad.....
I'm trying to stay calm and balanced right now.... a part of me is freaking out GOOD and a small part is worried.....in the past hour she is asleep and she will startle and let out a deep breath and stretch, not posterure and her heart rate will hit about 124 and then drop right down to the 90's. Almost like she is waking up from a dream of falling or something....I don't know

So I don't know what is going on but it is different....I've never felt like I had to stay with her because she might move around too much or get upset before....

I've slept by her bed on nights, that I wasn't sure she'd survive...this is a much better night!  We're thinking we are seeing some small but significate changes.....please keep praying for Selah! 

Day 4 Fish Oil study

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

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

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

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

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

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

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


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

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

 

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

Day 3 Fish oil study!

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

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

Selah eating lemon ice!

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

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

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

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

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

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