Day 92 Fish Oil Study ~Look at these legs!

 

LOOK at her left leg!

 

 

 

 

Right leg

 

Our nurse was just holding it in place for the picture, no pressure on it!   And for the pictures, she moved her hands so I could show how much her knees bend, don't worry her knees were supported during the stretching.  BTW, you can tell her legs have not withered up!  LOL  She is as plump as she can be:)

 

 

These pictures might not mean much to you unless you understand TONE and how it is affected by a brain injury.  Basically when the brain is injured, a child or a person will be effected by too little tone and be floppy or too much tone and be stiff.  Selah has had too much tone.   About two days after the accident she went stiff from the waist down and was like a board.  There was some tiny bit of range of motion that could be achieved at times but since she left NY, she seemed to even lose that little bit.  But look now!  She has NEVER been this flexible since the accident.  She is not normal in her legs/knees and certainly not at all in her ankles (they seem no better) but her upper body/arms/hands and knees are so much better!

 

We really do not know what to think....I wondered about it last night and decided to call the doctor at Brooks Rehab and go over all her medications with her.  I started thinking perhaps in all the various people and confusion of the big move/change, she has been given a higher dose of one of the meds by accident.  I also thought maybe the doctor may have gone up on one of the meds right before we left...  So Dr P graciously went over the prescriptions with me and we have the dosages right and everything is good.  Dr P had gone up on Valium about a week before we left for home but we wouldn't be seeing the effects of that now.  Plus she has now lowered her night dose back to .5 ml which is nothing, just a little relaxing. 

 

I even asked our nurse to count all the Bactfine pills to make sure no one gave her anything twice and they counted out perfectly. 

 

So what to think?????

 

Well she is on day 92 of the fish oil ....

 

And you all know Selah has had many prayers offered up on her behalf..

 

I'll be honest, I don't know what is going on.  Call me shell shocked but I'm a little hesitant to call it a "miracle", for me she would have to recover completely to her old self for me to call it a "miracle"  I feel that word gets thrown around too lightly especially in some charismatic/pentecostal circles.  I'm not going to throw it around until I know for sure.   When Jesus healed in the Bible it was complete and it was instantaneous....

 

For all of you who are reading this and thinking I'm doubting Thomas or just not trusting God, please know I am living this and I will never exaggerate anything because to me, that is wrong.  God is big enough, He doesn't need me trying to prove something that may or may not be happening....  I'll just report to you what we are seeing and experiencing.   God is bigger than any of my thoughts or doubts...and is not dependant on me or my words to heal Selah. 

 

It could be that she is more cognitive than what anyone thinks and she "shut down" and thought she was back in the institution and now that she is home, she is allowing herself to relax again.  I dont' know.....

 

BUT IT IS WONDERFUL!

 

So in spite of all the good things that are happening...I had some down moments today.  We don't have a bath chair for Selah yet so I went looking for a child's lawn chair (the kind that folds out)  I went to Kmart and just about lost it.  I'm not a Kmart girl, haven't really ever liked the store but someone had given me a gift card from there for the girls and I went there over the summer and got Selah her pink ride in car and some clothes for both of them and found I did like the store more than I thought!  That was all could think about as I was in the store looking for a chair to sit her in so she could have a bath....  big contrast...big aching hole in my heart....  I never really found a chair like we needed...if anyone sees one of them let me know!

 

I live on an emotional roller coaster....

 

 

Someone asked in a comment if Selah smiles, in the light coma or the state she is in...well NO Selah doesn't smile, she does frown and did today when her knees were ranged but she has not smiled.  She was NOT a smiler before.  Smiles were rare and few from Selah.  We caught a few on camera and I'm so very glad of them but she had had little to smile about for 7 years and was just starting to smile.  It usually happened more with one of the other children than with us.  She did not necessarily cry alot either but emotions were new to her.  Some children do smile even when they are recovering but she hasn't yet. 

 

So please don't stop praying for Selah.  I'm glad for this change but I'm a little unsure of what it means.  We have seen no cognitive changes but she did swallow for us today and surprised us, it just happened as we both were in the room.  I wish we were seeing some other changes at the same time.  She seemed sleepier yesterday and today and that was another reason I wanted to check her dosages.  We did not get her the afternoon Valium at all and she was a bit more alert for the rest of the afternoon.  The dose she takes is very low and the nurse documented that she wasn't giving it due to her sleepiness.  So it's all a big mystery to us.

 

Selah means "to pause and reflect on god/God's word"  we say we named her well, she causes us to "pause and reflect" quite a bit! 

 

 

 

 

 

Day 91 Fish Oil Study ~ Selah went to church!

 

All together again!

 

 

 

Nap time look at those arms and hands!  Even tho the angle is crazy:)  I love her nice relaxed tone can't wait to get her in therapy!

 

Selah is doing fantastic, her tone is NORMAL in her arms, elbows, and hands!  NO clenching her hands, nothing more than what she did before the accident (she tended to have her hands in fists ~ check out the first picture we have of her on the sidebar)  We are just thrilled and almost in disbelief!  When we go to see our pediatrician, I am going to ask that her meds (that had been upped a few weeks ago) be brought back down to where she was at.  She had been on them at a higher level for more than a week before we came home and there had been a little change but not much so I do not think this is from the drugs themselves at all.  In fact thanks to all the craziness of coming home and the confusion of the first night, she didn't get all her doses that day at all and yet she began relaxing almost immediately! 

Well I woke up late this morning.  Jon had left early to get to the prison and I went back to sleep...woke up at 9:30 am it was a mad rush...  I had not made up my mind about Selah going to church or not, I have a hard time making decisions right now and I just couldn't do it...it sorta just happened:)  Our nurse got her ready and off we went.  Of course as soon as I came in with her, I started bawling.  It was her first time out in public and our church is totally accepting but it was hard for me.  And of course the memories rolled over me...  memories of the last time we were all in church together....it was not easy but at the same time, I couldn't help but think "she's alive and she is here!"  So as always lots of mixed emotions for me. 

We have a dear older German couple who live in Canada and winter in Florida.  They lived through WWII and escaped from East Germany in the 60's, what a story they have...   Ziggy and Anita sang a song for us today.  "Til the Storm Passes By"  I heard it song as a child and loved it back then, today it had new meaning....

"In the dark of the midnight have i oft hid my face
While the storms howl above me and there's no hiding place;
'Mid the crash of the thunder precious Lord hear my cry:
Keep me safe till the storm passes by

Til the storm passes over
til the thunder sounds no more
Til the clouds roll forever from the sky
Hold me fast
let me stand in the hollow of thy hand
Keep me safe
till the storm passes by

Many times Satan whispered
 'there is not use to try
for there's no end of sorrow
there no hope by and by
But I know Thou art with me
and tomorrow I'll rise
Where the storms never darken the skies

When the long night has ended
and the storms come no more
Let me stand in Thy presence on that bright peaceful shore
In that land where the tempest never comes
Lord may I dwell with Thee when the storm passes by

Til the storm passes over
til the thunder sounds no more
Til the clouds roll forever from the sky
Hold me fast
let me stand in the hollow of thyy hand
Keep me safe
till the storm passes by"

So although I wept throughout most of the service, there was a comfort in having Selah with us in church.  The thought came to my mind as I sat on the front row, with Selah beside me and Sarah sitting on the ground at my feet, and Steve on the other side and Shad and Sam by him.....ONE day we will all be together in heaven....no matter what this earthly journey holds, there will be a day when all my children will be healed and whole!  There will be a day when we gather together at the throne of God.  All the sadness of this life will be passed away.  While I do not understand all the things that happen in life, on that day I'll either understand it or it just won't matter anymore.... 

What a hope we have in God.  He is not a genie but He keeps His promises.  He never left me from the moment this happened even through this very moment.  He has never been far away from me, even in my most broken moments....  He does hold us in the hollow of  His hand throughtout the storms of life.  I'm still scared about the future, I don't have all the answers, but I know that God is with us. 

So Selah had a big day and her nurse took her outside this aftenoon and has been working with her on all her range of motion.  Let me tell you this little girl is just being loved on by so many folks, giving her their full attention, it's wonderful!  We've been so very happy with all the nurses that are working with us.  It's like we hit the jackpot of great skilled nurses!  Being Home is much easier than I thought it would be!  She is happy, I've yet to see her "upset" face and no crying since she has been home.  I'm so glad she is happy. 

Thanks for all your prayers for Selah and for our whole situation.  Please pray that she will continue to improve and that we start to see her swallow more and hold her head up more.  She has done it some and we want to see that along with her new relaxed prfect tone! 

Day 90 fish Oil Study

Another good day for Selah!  Her tone is GREAT, her arms and hands relaxed and her knees too.  It was a bit chilly but warmed up so she could go out this afternoon..  We have another great nurse who is so interested in her.  It's not been so hard to have nurses in our home.  They have all been so professional and I think we were used to having Sam's teachers come in almost daily for the past few years.  We've had two men nurses and honestly we really like both of them.  That made me uncomfortable until I met them and they've been great. 

The boys and I worked outside today and cleaned the kids play ground and the boys weeded the garden.  Jon got alot of his things doe too.  Things are slowly getting back to "normal"

I actually cooked a real supper tonight, first time in 6 months, Shrimp Jambalaya, yum!  Steve was happy, that is his favorite supper.

Selah has been a big sleepy today.  We are considering taking her to church tomorrow.  Our nurse is in the order of the St Francis Monks and he is all ready to go to a "hand clapping" church:)   We'll see...I'm not sure if I'm ready to do that yet.

So tonight is just a quick update, maybe we'll take some good pictures tomorrow.  Thank you all for your prayers and please keep them coming!!!!  She is doing great but still has a long way to go!

Quick request....

This little girl Bella has been fighting cancer for years and has to go to MD Anderson for another surgery and they need Marriott Points....  We certainly know how that is..... not being able to stay at the RMH and having to be out of town.....  If you can help this family I would really appreciate it.  They have fought for a long time and this operation is truly a last ditch effort to save her life...or give her some more time. 

Here is the link...

http://www.caringbridge.org/visit/bellart


thank you all for your generosity!!!!  And for your prayers for this family!!!!

Day 89 Fish Oil Study ~ Great pictures

 

 

LOOK!!!!!!

You may look at this picture and not understand WHAT we are so excited about but look at Selah's legs!  I know she may look in a somewhat awkward position but she actually was very comfortable ( we can tell by her heart rate, and no grimaces)   It may look like she is somewhat sliding out of the beanbag chair but she is not.  Her legs are not sticking out straight!  We have sat her in things ( wheelchair, stroller, carseat and her legs have just stuck out straight like a piece of wood for hours with little to no change....NOT today!  She was so relaxed it is amazing to us and even to the nurses that have just met her.  She has changed since Tuesday!

 

 

 

 

 

Love it! She had been up for about 4 hours at this point and was getting tired.  But even tho she'd been up, that has never ever made a difference in her legs like this before.  I've seen it where it looked like her knees were going out the back of her leg ( think of the inside of your elbow-that's how badly her knees would bend backwards!)   And nothing seemed to help, you could sit her up and use heat and do range of motion and it did nothing or very very little.  If you notice the leg in the front, it looked like the leg of a child siting in a chair, nothing odd at all.. But even her left knee was relaxed and responding to gravity in a normal fashion.  This is wonderful!

 

 

And look at her arms and hands!  SOOOO relaxed!!!   AND this was at 4pm right BEFORE all her meds!  This is the time she is usually the stiffiest!!!!!!

 

 

 

 

 

After she was put to bed for the night LOOK at her arms and that is with NO splinting whatsoever and NO med changes!  It's amazing and we are soo thankful!

 

 

Selah had a wonderful day today.  She sat up for hours in her beanbag chair and just had a perfect heart rate and oxygen levels.  No issues and the tone is better than it has been since the accident!!!  We can do full range of motion on arms/hands and probably at 30-40% on her knees!  The ankles are still tight but we all are just thrilled with how well it is going with her tone!

 

My good friend Jean came over with all kids of goodies for the kids and us and we went and picked up pizza, went to Walmart and just laughed alot today.  This is Jon's regular day off so he was home with the kids this afternoon.  I came home to this wonderful news of how relaxed Selah's tone was this afternoon! 

 

We really don't know what to think, she has changed so much since she has come home, just three days ago!  We are grateful...so grateful!  Hopefully we will get her therapy started next week, the nurses are all truly excited and want to be a part of it.  Everyone has such hope for her! 

 

Thank you for your prayers...  I guess I'm alot like David in the Psalms, down one day and up the next....

 

Please keep praying for our little Selah!

Day 88 Fish Oil Study Home is nice!

Selah had a good night but her heart rate was a bit up around 6:30 am so I got up and held her for awhile a couple of hours but it was good:)  We got a good night sleep last night.  We had the nurse who will do most nights and he was nice.  I have to be honest I find having a man in our home a bit more awkward than a female nurse for several reasons but he was kind and professional.  I come from a law enforcement background and I can't forget the things I know, but we have a camera and honestly I do trust my instincts and we both felt good about him. 

Today we had a great nurse who will also work with us on a regular basis and she also was WONDERFUL!  We gave Selah a bath and then she sat on the floor and did a pedicure.  Selah had some old hard dry skin on her feet but not anymore!  I took her outside for a while in her wheelchair and had to fight the tears, thinking of her walking around the yard before (even tho she wasn't a very good walker)   I sat with her on our little patio and thought of last summer when we had the little kiddie pool and I'd sit outside with them and let them play in it.  It hurt....

We moved around her room some last night and today Steve hung up her picture and butterfly.  This picture is what we see down the hallway...

I have to tell you all that Steve and Shad have been so helpful these past few days.  Without their help Jon couldn't have left me to go back to work.  Even with the nurse, everything is time consuming right now as we get everything in order.  I really am appreciative of the boys and all they do.  Shad is so sweet, he will go by Selah's room and just go in and talk to her.  I tear up sometimes listening to him. 

Steve is waiting on his curriculum and we need to go pick up Shad's books, maybe tomorrow....then school starts:)  The kids played outside today which means Steve and Shad pushed the little ones on the swings for about an hour:) 

Tonight my friend Jan brought us supper ( actually she brought us several days worth of suppers!) and it is cooking.  It's good to start seeing our friends!

I wanted to say thank you to a friend BJ, who took a hospital gown and used it as a pattern and made Selah some of the cutest most unique gowns for night time!  They are adorable on her and all the nurses comment about them. 

So my emotions go from between, sad remembering the past, contentment for the present that we are all home together and some hope for the future....sometimes within a matter of minutes.....  I feel I'm on a roller coaster....  I keep reminding myself "do not be afraid"  I wonder about the days ahead and most of the time I can trust that God will carry us and provide.  Sometimes I feel life is hopeless...again usually within a matter of minutes....Sometimes the responsibilities of my life flood over me like a wave and I think "this is  just crazy!  No one person or family can do this!"   But I'm hanging on to that word that was given to me back in May...  "Something BIG is ahead for your family in the next few months, do NOT be afraid, many will see"   Sometimes I tell God "please don't let "many see" me fall to pieces"  "Let me glorify YOU in all that I do"   So I try not to be afraid.   Talk about learning to lean...do you remember that old chorus?  "Learning to lean, learning to lean, learning to lean on Jesus....."  I sang that song with gusto when the other thing I had to worry about was taking a test or something stupid...LOL  I had NOT a clue about really learning to lean on Jesus...   Learning to trust when life is not the dream you thought it would be, learning to trust when you are afraid and have no idea how you are going to do the next however many years of life you have before you.  Before the accident I had some worries about the little ones' futures if they  outlived us or if one of us got sick...Oh Lord, those were just little tiny worries back then.  Now the full responsibilities is beyond overwhelming BUT I think of the story Corrie Ten Boom told...

Corrie Ten Boom wrote that she had asked her father about having the strength to die for her faith, and she was concerned that she didn't have it... and her father compared it to him giving her her train fare for the train when she needed it and not before...   I know I"ve ripped that story to shreds but I do think of that that He will give....whatever we need when we need it.   So I trust in that kind of faith.  I may not have what I need right now for what is ahead in the future but God will give it to me when I need it....

So I'm living moment by crazy moment...thank you for your prayers...

Please keep praying for Selah's recovery!

Day 87 Fish Oil Study HOME!

There is NO doubt in my mind that Selah is a HAPPY girl!  She is so relaxed and truly we are glad to be home!!!

Finally sitting on her swing....

 

 

I know she looks tired...there is a story behind it:)

 

So last night was a "baptism by fire" to say the very least.  To be nice, I will say the nurse was not qualified to be Selah's nurse (or anyone else's for that matter)  We did everything from changing her to running her feeds, giving her the meds...the nurse did suction her...WRONGLY...

 

I called the agency at 8 am and told them she could not be Selahs nurse again....  They were amazing and have someone coming tonight in her place.  I am leaving out a whole lot of the story but let me tell you I shook for hours last night afraid we'd do something wrong.  Selah was at first having oxygen levels that were too low and at one point I even turned on her oxygen.  Then her levels got normal and she kept a high heart rate (120-130) most of the night...she did not sleep at all.  I swear she was uneasy too!  That is why she looks so tired in the swing.  She slept for awhile but we didn't want her to sleep much because we wanted her back on her schedule.  So we kept her up in her chair al day and she did great.  She seems really glad to be home, no doubt at all! 

 

We kept her "nose" on all day, the cover of her trach which makes it harder for her to breath than just breathing the humidified air in the blued tubing that you so often saw around her neck at Rehab.  They didn't think she tolerated it very good...well she wore it all day when she was in NY and now again at home and did great.  I personally think it is good for her to work a bit harder so she is "thinking" about her breathing. 
And is works her lungs harder which is good!!! 

 

We had the most amazing nurse today who more than made up for last night!  We had a great day with her and really got Selah's room in order and of course there were some more things to pick up for her at Walmart.  One of my Jax friends had given me a gift card and also a friend of hers friend had sent us several gift cards which covered her thermomator, some new sheets, some bigger clothes ( lol!!!)  and all kinds of other little things we needed:)  Thank you friend of a friend of a friend's friend:)

 

We also have food~ I went real grocery shopping with Steve this afternoon:)  I bought lots of fruits & veggies and really want us all to start eating better!!!   I was so tied in the store that I actually did not think I was going to be able to drive home but I made it and was able to work through it.  But after a stressful day and night and no sleep and I couldn't eat because my tummy and stress do NOT mix...I thought i was going to crash!

 

But I got home to our dear friends Ken & Lynn who delivered us all kinds of soups:)  Everyone ate and was happy!  What a blessing friends are!!!!

 

So our day nurse had to leave at 6 pm and our new nurse couldn't come on until 10-11 pm but we have managed quite well!  Selah is behaving and I did the meds.  Her room is all fixed up and I had bought some more shelving and those little plastic drawer things...it looks great~ Steve,me and the nurse got it all arranged and it is perfect! 

 

I went in to move her and her legs are so flexible I could not believe it!  I called for Jon to come in...they look better than since the accident! I really didn't want to wake her up but I had to test her range of motion and it was amazing in her knees!  I can not get over it!!!  They felt so soft and relaxed rather than hard as a board as they usually feel!!! 

 

Sometimes I am hesitant to tell things like that because I don't know if it is going to be consistent but it was so different, it almost scared me!!  In a good way:) 

 

Anyhow we have survivied and are glad to be home.  Jon is going back to work tomorrow and is looking forward to seeing all his folks ( staff and inmates!) 

 

Thanks for all your prayers and please contiue to pray that she will fully recover!!!!