Day 96 Fish OIl Study ~ First Doctor's appointment

Well we had a busy day today!   We started with Sam, Sarah and Selah having their Physical Therapy and Speech Evaluations this morning at home.  They had all had evaluations in July with this therapy group but since it was more than 6 months we had to redo them.  Sam has learned  new skills, he can walk up stairs and climb into his car seat:)  Sarah's legs/feet are in a much better position than they were before.  Her feet tended to point inward and she'd step on her feet if we tried to walk her.  She does that less now.  She got to walk in the gait trainer and had a good time.  She also responded well to the speech therapist and would indicate by clapping her hands that she wanted to continue playing! 

Miss Selah did really good!  She was evaluated from head to toe by the physical therapist.  The PT was able to get full range of motion in her arms/elbows/hands and wrists.  One shoulder was slightly tighter than the other.  We woke Selah up and without even the benefit of being up and letting gravity help her knees to bend, the PT was easily able to bend her knees and get 40% range of motion.  She also was able to get some range of motion in her ankles.  If she had had the evaluation in the afternoon, we are sure her ROM would have been higher but that is higher than anyone has gotten since NY (I"m not even sure that they got that kind of ROM in NY.  It will be interesting to read the report as I was in and out with all the little ones. 

We had ordered a wheelchair but the company never sent it so we cancelled the order and will do one with the therapist's help so we can get exactly the one she needs.  We are using a loaner one and it is not very comfy for her nor does it give her the right kind of head control.

Then it was off for another ambulance ride.  Her nurse and I both went.  We had the nicest EMTs again.  We seem to get lucky with really sweet folks.  When we got to the gastro's office we were told it would be over an hour wait!  She was on a stretcher, then the EMTs weren't allowed to stay that long so we were sitting in a hall with her because we were afraid to go in the waiting room, afraid she'd get sick.  The nurse and I both were getting a little ticked off, usually according to the nurse and the EMTs most doctors will take into account the child's situation and the the fact they are there on an ambulance...  Finally we went in and I have to say we both liked the doctor.  He had some great ideas and spent some time with us.  We were thinking they were going to make us wait for a 5 minute appointment but it wasn't like that. 

Selah has gained 13 pounds since the accident.  That is alot of weight in less than 6 months.  While we are glad she has had NO issues with her feeding....but she can't continue to gain at that pace!  The doctor was able to give us some samples of a formula that is more plant based with veggies being a big part of it.  He also is one of the few doctors who are all for the family blending their own food and giving it to the child.  She'd have to have a much bigger gtube button as she is on the smallest one and that would involve a small surgery but it is probably something we'll do in the next few months.  So we liked his innovative ideas alot and it was worth the wait.  Next time tho' they will schedule us first thing or right after lunch so there won't be any waiting.

Over the years we've been so blessed to have special folks who worked with Sam.  He had the best ever speech teacher that we all loved.  I prayed that Selah would be surrounded by folks who just adored her like that and I have to say our 4 regular nurses do, especially the one who works most day shifts.  She is so into Selah and wanting to meet her needs and help her to reach her full potential.  It means so very much to us!  You have no idea what a blessing this lady is!  I thank God for her and for all of them!!

So a long day for all of us...

Then I came home and cooked a Mexican pot pie:)  It was so good and easy!

a pound of meat ( I used low fat turkey- 1 gram of fat)
a can of Ro-tel tomatoes with chiles
package of Taco seasoning

brown the meat and add the seasoning and tomatoes, cook well

Line a casserole dish with the big pastry sheets (i used the pepperidge farms sheets or you can use a pie shell)
Put the cooked mixture on the sheet, sprinkle a handful of Mexican cheese on it and cover with the other pastry sheet ( or 2nd pie shell)
Cook on 400 degrees for 20-30 minutes or until light brown on top...

serve with Yellow rice and salsa and corn

You can put corn or black beans in the mix but some of my kids wouldn't eat that....

I served it with angel food cake ( from Publix lol) and fresh strawberries and felt like Martha Stewart!!!!

Very productive day!  Even for Steve:)

 

Steve  got his school books yesterday and got started on his schoolwork.  He will be working weekends and through the summer.  This is not even all of his books, some were left out and we are waiting for them.  Shad's books came into their school and we'll pick them up on Monday. 

Day 95 Fish Oil Study ~Life is short...eternity is long

Selah continues to be relaxed.  Her nurse got her up today and we gave hr a bath.  Quite a job!  Can't wait till the bath chair that one of my readers is sending gets here!  She was nice and clean and I put her on a new outfit.  She was outside quite awhile then we turned on Sesame Street for her and she seemed contented   A friend of ours had given us her old big screen tv and it is the perfect height for Selah to sit in her wheelchair and watch!  She must feel like she has a front row seat!   She is asleep now and her hands are completely open and relaxed.  I tested her knees when she was falling asleep and the tone was great!  Without trying, I could probably get a 50% range of motion or better.  I really didn't try hard since she was almost asleep and I didn't  want to bother her.  It is just unreal!

Tomorrow Sam, Sarah and Selah will have reevaluations for PT and Speech here at our home.  The agency that was going to start working with them in their office offered to come to our home and do it!  Next week they will all have a reevaluation for OT also and we hope to get started soon!

Selah has an afternoon appointment in Tampa for Gastro and he will reinsert the new feeding tube.  It came in today.  She has done fine with the tubing that was put in at St Joe's but it's best to have th right one in.

Today we got some very sad news.  A friend of ours, Ray Wiley,  passed away unexpectedly last night.   Ray and his wife had filled in for Jon at our church when we went to Ukraine and when we were in NY.  He actually led a prayer service for Selah a few nights after the accident.  He served as the head of the Urban Bible Training Center here in Tampa.  He and his wife, Jo, served for years in Eastern Europe as missionaries.  They had a heart for adoption, for our girls' adoption and for other families also.  He was a faithful servant of God.  We are sadden to hear of this but I have no doubt in my mind where he is tonight.... He spent his life serving God.  After I heard the news, all I could think was "he was a faithful man"  He didn't look for the praises of men, he knew who he lived for.  They have faithfully prayed for us and for Selah.  They have helped us out so much at our church, we had hoped to spend some time with them one day....well now that "one day" may be a little ways in the future but what a blessing to know that we all will meet again....

So reflecting on his death, makes me want to LIVE for God with everything in me.  Ray was a wonderful example of someone who was ready.  He lived his life ready  and he worked for God till the end.  Some would say "well he died young, what kind of God is that to let a good man die in his 50's?"  I don't have all the answers but I bet Ray does now!  I don't mean that flippant either.  I know we all want to hang on to life as much as we can but I think when our time comes, if we are ready to meet God, we will wonder why we were so afraid of death in the first place.  Also I know that even if a person lives to be 100 years old, that is nothing in the light of eternity.  Eternity is forever.

Have you ever, for just a second, grasped the concept of eternity?  I have, for just a split second, and then that understanding is gone.  But that hope of eternity is what keeps me going from day to day.  It's not some silly false hope but it's a real hope that beats in my heart.  Sometimes in the day to day, nitty gritty of life, that peace sweeps over me that this life is just a vapor...soon it will be gone...we will stand before God.

When I told the boys, they were shocked that someone they knew had so suddenly.  I used that time to remind the boys, that no one is promised tomorrow and we need to live with a repentant heart.  And I'm reminding you all of that too.  I believe Ray would want everyone of you to make heaven your final destination   I know I want you all to!  The bible says that if you call upon the name of the Lord, you will be saved.  Just ask Him to forgive your sins, and then keep in relationship with Him by praying daily and reading the Bible.  So I just want to encourage you to do that if you have not already done so.

Please keep his wife and family in your prayers....thank you!

Day 94 Fish OIl Study~ Long day

Well after a wonderful perfect day ...last night at 10 pm Selah's gtube came out.  It has a little ballon to re inflate but it wouldn't hold the water so off me and the nurse went in the ambulance to the ER.  First we went to Lakeland but all they could do was put in a Foley catheter, to keep it open.  They did not have a g-tube her size.   Neither did we.  Why do you ask?  An extra one was not sent home with us.  I had called our pediatrician's office for an order to get one but they wouldn't give me an order and said to wait to go to the Gastro on Friday and let him do it.....I"m not happy about that...  It reminds me of the poem or saying "for the want of a shoe the war was lost" 

Then the nurse went to my house in a cab and I went off to St Joe's in Tampa.  I notice the driver is going way the long way...but "who am I to question???"    But I did....as we drove to the wrong St Joe's...LOLOL  you know I was having to hold it in....

Luckily we did not have to go in through the ER or I'd probably be in jail tonight.  We get to our room and I am asked the most detailed questions EVER and yet then NOTHING was done for Selah!  Respiratory was not even called in...you know a patient on a trach...needed a nightly humidifier....  I finally feel asleep around 5 am for about 1.5 hours.  Then her machine started beeping for low oxygen levels...  so many small irritating things happened, I will spare you the details.  I did speak to an administive nurse this morning and shared my concerns. 

I will say we actually got a no nonsense doctor in and she changed the tubing to a clear one that we could hook upmeds and feeds too.  No one in the Tampa Bay area had access to getting a gtube like what we needed.  It had to be ordered and rather than us have to stay in another day, we did this. 
Then we could go home since it is being mailed and the nurse can put it in tomorrow.

I did get lunch there and I swear they had the BEST chicken salad EVER! 


Selah did quite well except her oxygen level stayed lower than I liked dipping into the high 80's a few times, no matter what I did.  She tensed up some but not all the way and is doing lovely right now DESPITE missing 2 rounds of meds!

During all this I was keeping in touch with our home health agency so they knew what was going on.  At first it looked like we wouldn't need any nursing but then we found out around 10 am we could go and an ambulance got called for transportion.  I let everyone know and thought we would have a nurse (maybe not our regular one since she had thought that we wouldnt' be home) but I felt assured we'd have someone there.....NOT!

We had an uneventful trip home with some great EMS guys who enternaimed me with their gristliest stories...it was fun!  LOL  Then we were home and no one was here!  To say I was upset is an understatement.  I had communicated clearly and really felt in over my head with her new tubing and the whole confusion with feeds, MEDICINE (because the discharge papers were far from clear, all they did was list her meds NOT what they had given her!!!)   She wasn't in "distress" but she was not doing as good when we got home as she had been doing either.  I had had less than 2 hours of sleep, probably far less and I don't do good without sleeping.  My other kids needed me, Sam needed eyedrops....this is why we have nursing....

Let's say I shared my concerns freely.......

I don't think I'm a princess but I do know our family's needs are higher than most families who find themselves in our situation.  I jump right in and work with the nurses and want to be involved but this is new to me and especially when there are crises moments.  I don't have the confidence I'll have in a year or so right now.  There was alot to figure out and I'm still ticked that it was handled the way it was.  Our night nurse was able to come in at 4pm but by then I had called the hospital and figured out what they had given her and decided not to try and make up for any not given. 

On top of it, since Selah has a trach, we are supposed to keep a dedicated trach bag with ALL the things she'd need to be able to change one out anywhere~ like a "bug out bag"  ....for some reason the nurse last night (not our regular one emptied it out and filled i up like a diaper bag.  I had not idea till I was asked about a size of something and opened it at St Joe's.....  that made me so so mad!  Our day nurse had gone through it for me and made sure I had put everything in and it was so neat!  Now I can't find some of the things and that bothers a person like me to death!!!

The two things that scare me about taking care of Selah is her AIRWAY and her MEDS!  So in all of this both were a problem.  I like to know I can grab what i need, not that i have the greatest confidence in myself but at least if it is there... maybe I'll do it right!   AND the meds scare me now that I have to draw up the dosages.  I take it very seriously, she take some serious meds!  Not only are they serious, they also keep her stable.  That is a big responsibility to me.  I don't like excuses or "politically correct talk"  If you screw up admit, it without me having to point it out, and just fix it.  I'd respect you more and probably work with you much more nicer! 

For many years I worked as a probation officer and as a supervisor.  If I made a mistake or needed to take care of something, I just did it.  If someone I was supervising made a mistake (God help them) I did whatever I had to do to rectify it.  If one of my workers couldn't make an important deadline if I had to do it, I did it...  Ever since I've had Sam, I've been "amazed" at the lack of "customer care" in the health care industry, as well as social services, public school, etc....

All in all, I do give our health care agency a passing grade.  I really like our main nurses and think they are jewels!  But this is the second BIG situation that wasn't handled good in a little over a week (the first being our first night home!)  I have learned not to get vague nice promises...that won't be happening again. 


So let's just say that no one was guessing today that I am a pastor's wife....  really glad God still loves me....  This i WHY I named this blog "My REAL life"  this is it...it's real, I'm real  and that's just how it is. 


I'm so tired but I know something about "jet lag" or  "hospital up all night lag" if you don't fight it, you'll have your sleep messed up so I'm bleary eyed trying to stay up till 10 pm.

So please pray for Selah that she will stay relaxed and that she won't get an infection from all of this.  Dr Lee had done such a great job on her gtube in the first place I just pray this won't mess up things!

Day 93 Fish Oil Study ~Things are great!

 

Selah asleep tonight LOOK at her hands!

 

Close up of her hands!

 

Selah had another wonderful day:)  She is doing picture perfect!  Her tone is remaining just like we like it in her upper body and is still good in her knees.  I took these pictures tonight of her relaxed and asleep.  This was how she was lying in her bed.  Her hands were loose and open.  The improvement is unbelievable!  Just think we were trying to put her hands/arms in splints to keep them from drawing up just  last week!  This is a HUGE change!!!!   Today we gave her a bath...interesting....(thank you all for the messages about helping with a bath chair!  A person offered her one that her child outgrew, so hopefully we'll be able to get that soon)  She was up all day, she went outside and was very content.  One of my "besties" came over and Selah showed off and swallowed for us:)

 

I had a really good day with my friend Kandi, she and I have spent hours upon hours walking thousands of miles together over the years and discussing the state of the world.   We logged up to 7 miles a day on our best days:)  Today was the first time we have been able to get together since all of this happened and it was quite emotional for me.  I cried off and on during the day.  Luckily my friend is a "crier" and she has always wanted me to be more emotional...LOLOL  she got her wish.  When I saw her I sobbed. We went by our kids' school (where the boys had gone for years) and I just bawled.  We went to the therapy office to pick up Sarah's walker and I cried...everything was a first and of course the last time I was at any of those places, Selah was with me.  Since I'm not much of a crier, it's a bit hard for me to understand all these tears but we were talking and maybe it's just having been gone from our familiar places for so long and having gone through so much, and then coming home and Life is NOT the same Life as we left ....has overwhelmed my emotions.  I don't know.  But I know not to waste any time on make up for now!  LOL

 

 

We picked up Sarah's walker and she loved it!

 

 

Go Sarah!

 

she loved it!

 

Sarah doesn't walk, she was kept tied down in bed so she never had the chance to learn but is is obvious she will walk one day.  She really enjoyed the trainer but will need some work to strengthen her legs.  She has come a long way from the day we met her. 

 

 

I think this picture is so funny, Sarah always looks so intently at faces.  And this is our oldest child and our youngest and you can see there is quite a span of years there:)

 

 

Thank you for your prayers PLEASE keep praying for Selah.  We really don't understand everything that is happening but it is all good.  Pray that she starts holding her head up more and swallowing more.  She really hasn't held her head up for any length of time since she has been home.  She also doesn't respond to visual threat all the time or if she responds, it is a delayed reaction.  visual threat is we put her fingers towards her eyes like we are going to poke out her eyes.  She should respond by closing her eyes every time) 

 

 

I want to tell you all how much I appreciate all your sweet messages.  I don't always respond to each one because it is somewhat hard to respond but I read every one (even the doubled ones lol)  and I thank you all!

 

 

 

 

 

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!!!!

 

 

168 days later....

168 days ago our life changed forever.... 

168 days ago a doctor told me that Selah would not live through the day but she did and now 168 days later she is home. 

We left the hospital a bit after 1 pm.  Jon rode with her in the ambulance and I drove the kids.  He got home first and met with various people who were here with various things....we finally got here and I just sat down in our big soft rocker and held her for awhile.  It is good to have her home.

Everything is beyond disorganized which as you knows drives me crazy and we have an inexperienced nurse tonight which is not helping matters.  Selah is so tired that her oxygen levels are down so I turned on her oxygen.  Dealing with all this is a "baptism by fire" & I doubt I"ll sleep tonight unless she keeps her levels up. 

But I am glad to be home!  She seemed to understand things some and was certainly looking around in a way I've never seen her do before.   She totally missed her 4pm meds but is as calm as she can be and relaxed.  

Selah with one of our fav nurses

 

 

 

daddy leaving with her in the amblulance

 

 

She's all loaded up

 

 

they are off!

 

 

HOME!!!!!!!!!!

 

I realized as the bed was delivered that I don't have her any sheets!  Thank goodness I'd kept the twin size from the boys' room!  I have to go and buy her some PURPLE sheets tomorrow:) I'm a person that likes things to match:)

 

Tonight even tho I"m a bit terrified, I am glad to have all my children under the same roof again and I"m so thankful that Selah is here with us.  I thank God that she lived and surprised everyone.  Now we are just praying that she again surprises everyone and that my two wonderful dreams come true.  It almost seem like they could now that she is home!!!!

 

Thank you as always for your thoughts and prayers!!!

 

 

 

 

Day 85 fish Oil Study ~plans ~ and a big prayer request

My FB status....

 

What a day I got up and went to the courthouse....almost cried - last time I was there was with all the kids getting the paperwork to re adopt the girls....then dropped off things at the thrift shop, then spent more than an hour waiting at the pharmacy for Selah's (only got 8) prescriptions and Sam's eyedrops...pharmacist was SO sweet he made me cry. I totally lost it and had to go to the bathroomom to calm down. Then we stopped by Olive Garden for lunch and saw our fav hostess who had wondered where we'd been and she was just shocked by everything.... then we drove back to Jax and have some friends throwing us a little good bye party tonight....tomorrow is the big day! I've spent HOURS on the phone today getting everything delivered etc....I am TERRIFIED.....but glad she'll be home

 

My FB status sums up my day.  Lots of running around and taking care of many last minute things.  We called and checked on Selah several times it reminds me of "adoption day" we didn't get to see the girls at all...it was ALL about them but we were too busy getting all their paperwork done.  Today was the same, everything  was all about Selah too.  We did run and see her tonight and say goodbye to our nurse that we like so much.  Selah looked great and her hands were so nice and relaxed.  When I am with her, the future is not so scary....

 

We got back in Jax in time to pick up the rest of my pictures that I finally got printed out at Walmart.  I just flipped through them and they took my breath away...Selah at home playing....the last section of the 3000 + pictures and I see all these pictures of her.  It's one thing to see them on the computer but to have them printed I just wanted to hold them and look at every little gesture and thing she did..... 

 

It's been a very emotional day for me.  Loosing it at the pharmacy was a first for me and probably for them too.  But believe me tears work, they had all my medicines done up and bagged by the time I got out of the bathroom LOL .  No they were absolutely wonderful and their kindness just touched me and I couldn't handle my emotions. 

 

The stickers are on our vans now~we are legal:)  No more tickets for us!   Being at the courthouse just reminded me of the day we all descended on it right before we left for NY.  I went to get all the paperwork to readopt the girls and Shad too.  It was such a hot day, but it was meaningful to me as it was the beginning of the last step we would take legally for them to be ours.  (legally they are all ours, it's just the best thing to have them readopted in the US and then they can get US birth certificates.)    We had also gone there earlier to get Sam and Steve's passports done so I think of the girls' adoption in relation to that building. 

 

While I was doing all of that, Jon took his van in to be serviced and he bought a security camera set for Selah's room.  We feel more comfortable with her having a camera in there that we can monitor.  Our friend Jim who is an amazing technical guy thank God because we are not put it in for us. 

 

We had a good going away party tonight!  A bunch of our new friends from Mandarin United Methodist came by and we all ate and had a good time laughing together.  Hope to stay in touch with all of them! 

 

PLEASE be in prayer for my good friend Bryan who God used to arrange all these fantastic relationships for us here in Jax.  He is a college friend who was friends with Bill...who got his church involved .....  (it amazes me how God works things out...)  Anyhow Bryan is facing a major medical issue!

 

Bryan has had an accident some time ago and has had many physical problems since.  In December things got worse as he experienced partial paralysis on his right side, at the time they thought he might be having a strok e,it happened so suddenly. They are attributing it to the cervical and thoracic portion of his spine.   He has already had 2 surgeries in the past and has screws in his neck.  But now his doctor feels he may need emergency surgery to see if it is the screws pressing into his neck or maybe a bone spur or something else.  He is meeting with the doctor tomorrow at 1 pm to determine the course of treatment.  They are very concerned about all of this.  Please pray for my friend who did so much for us.  I told Bryan that God saw all the effort he made to help our family ( and all my little former orphans) and that God's word talks over and over again how He hears and helps those who help others....  And Bryan took it on himself to make contact with his friend and arrange all this for our family.   It was an amazing step for him to contact someone on our behalf and for all of this to work out!  We appreciate him and just want to see all of this work out for him hopefully without surgery but if there has to be surgery that is be just what he needs to fix this problem once and for all!!!  Please pray for Bryan and put his need on your prayer lists and churches.  Thank you very much

 

 

Thank you for your prayers hopefully my next post will be from HOME!

Day 84 Fish Oil Study Hope in God

One of our fav nurses worked with Selah today and said she was doing great.  She tolerated a shower.  Last time we tried that, she made sure we paid for it!  She had an hour long storm!  But she did great today and actually seemed to enjoy it.  We are getting a bath chair for her and I'm thrilled that she did good today because I learned on Friday giving a bed bath is hard work!   Her vitals are great today and no issues.

We had a good day at Grace Church with our church family.  It's just good to be together and share life, even when during the trials of life....

This afternoon me and the boys cleared the church and our house of ladybugs.  They have infested everywhere!   You know I hate to kill anything so we got them out hundreds of them on the ceiling in our foyer, I didn't notice them till after church LOL maybe they needed a good service too!  Ladybugs are supposed to be for a garden so my garden should do good if they hang around!!!

What a lovely warm day in Florida.  I wore shorts and a tshirt and sat in the sun for awhile.  It was so calm and peaceful out here in the country.  We opened all the windows, perfect weather:)  Sorry to all my northern friends but at least you can go play in the snow.   And I just got bit by a mosquito...we all have our cross to bear. ....


I also worked on our house I am a person who doesn't keep alot of "stuff" but I seem to have more stuff than usual.  Clean House used to be one of my favorite shows and after watching it, I'd have an urge to go clean out a drawer or two.  So I'm working on going through things still as it just seems like we are too crowded and I have some projects too, mostly including our pictures.  I've got bags "to go" various places and the bags themselves are bothering me.  I did have a psychology minor so I do understand WHY I'm doing this but I can't help but be annoyed by all the little silly projects I have going on....  Basically if I can control some small area of my life, that gives me control, since life seems so out of control for me right now.  So see I can psycho-analyze my own self and save money LOL   "The first step in recovery is to admit you have a problem"  All those student loans were good for something at least:)

YES life is scary and out of control....  I want Selah home so bad but I'm terrified to have her home....  even with nursing, it's scary.  If I didn't have PTSD (Post Traumatic Sam Disorder) I probably would not feel like I did but I know how it was when we brought Sam home from the hospital and in some ways he was more stable but in some ways Selah is more stable.  I could not  go to the bathroom without the fear that he would be not breathing when I came out.  I promise you I am not exaggerate so in one sense Selah is not as bad off as Sam was but he didn't have a trach or a g-tube.  But for years I'd say "I wouldn't repeat that first year with Sam for a million dollars"    I have a blog with that title...I'm not kidding it was rough.  I remember at his one year old birthday party Jon & I both just wept because we honestly never knew that he'd make it to his one year old birthday!    Anyhow with the memories of the sheer terror we went through and the many 911 calls that were made during that year, I have some real significant fears about bringing Selah home.   Oh my Gosh ,the stories I could tell you of holding him and suctioning him out and having the 9 and the 1 dialed, waiting to see if we'd have to dial the next 1 to call 911, you have no idea.....  well maybe you do if you've had to care for a family member who was very ill.  We all survived and by the time Sam was 2 years old, we didn't have all those awful issues ( and some issues that never really were identified)  But I kept a hospital bag packed for him/me until he was about 7 years old.....

So I'm elated and terrified at the same time....lots of emotions....

Please keep praying for Selah, pray that she will handle the transition home without getting sick and having to go to another hospital (that happens often)   Obviously I don't want to see her sick but I just don't know if I have the wherewith all to deal with anymore hospitals for awhile! 

I really don't want to whine and make things about me because this is about Selah but I will tell you these past months have been the hardest thing I have every gone through.  I"m thankful that she is alive and we have had her but it's been hard.  When I really get on the self pity trip, I have to remind myself things could have been worse.  Sam and Selah both could have died and I'd be writing this blog from a mental ward somewhere....or Sam could also be in the same situation as Selah is...or Selah could have never ever progressed.  I do have alot to be thankful for.   I bet there are parents who read my blog that they have lost children and thank I"m lucky.... so I do not want to belly ache.. but I'm tired, I'm worn down, my heart is heavy, I am afraid of the future of all the various ramifications ....

I'm a person who usually has alot of HOPE for the future, even when times are rough, I can dredge up a little hope, but I'm scrapping the bottom tonight.   I'm not ashamed to admit it. 

I'm so glad that there are scriptures where even great people of God like David in the Psalms wrestled with depression and fear of the future.  In Psalms 43:5 "Why are you in despair, O my soul? And why are you disturbed within me? Hope in God, for I shall again praise Him, The help of my countenance and my God."

He realized that he was depressed but he also acknowledged his hope was in God.and he realized that he would praise God again. 

People are kind and try to be encouraging to me....I am thanful of that but right now I feel very discaouraged but I do know I will Hope in God. 

Day 83 Fish OIl Study and "I just can not believe some people"

Selah is doing great!  She has had no issues and is ready to go home on Tuesday!  We got up and left really early this morning so we could finish up our tickets at St Augustine since it is on our way home.  We had tickets for the Fountain of Youth and I really needed to drink some water LOL

After we went there (and it i really interesting!) we went downtown to look at a few of the churches.  We stopped at a Denny's and were sitting and enjoying lunch when we had one of the worst experience of rudeness ever!!!!

We were at a long table, Sarah was in a high chair at the end with Jon on her left and me on her right.  Shad was sitting nxt to me and Sam was sitting between Jon and Steve.....   A large group of people came in, I'd presume a family, and were to be seated next to us.  As I was feeding Sarah two of the children actually got between Jon and Sarah and literally got in her face.  The mom was just looking on seeming mildly amused.....OH MY LORD!  Without even thinking I raised my voice and said "Get away from my child NOW!"  "Go to your mother"  They all treated it as a joke!  I said to the mother "this is extremely rude, you need to teach your children manners"  She just looked at me and asked to be moved...well I don't think our waitress saw what had happened so she didn't react like the man in Texas.....

For the record, these kids were elementary age perhaps one of them was middle school age, not little kids. 

Please if you have children, instruct them how to be polite.  Unless they are paying money at a freak show to look at someone, then tell them  do NOT stare!!!!!!!  I was a mom for 9 years before I was a mom of a handicapped child and I can promise you my son never did something like that and if he had ....he would have been sorry!  I would not have been standing around smirking....

And I do NOT want to hear that that was an opportunity for me to have a "teaching moment" with those children....I do believe we had a "teaching moment!!!!  It is NOT my place to teach some brat how to act!  But I hope they remember how I reacted and think twice before doing something like that again! 

It amazes me how some people act...you would think in this new age of "tolerance" that people wouldn't stare and act rude around little children!  Lord knows I see enough other things that I chose to not gawk at and I don't mean disabled people! 

I was raised about as "un politically correct" as possible...some of you would die if I told you how my family was....I'll keep it to myself... But even I knew enough to not stare at others...  I just can't get over people!  But my days of letting it make me cry or feel icky is so so over....  Now it's "Right back at you"  If you have enough "whatever" to stare, I"ve certainly got alot more "whatever" to call you out on it!  My kids are beyond precious to me and I'm thrilled that I'm their mama and I will protect them even if they don't understand it!  Because maybe the next time that person sees a handicapped person, who might be personally hurt by the staring, they will be afraid to stare and be rude!

Guess what?  Anyone reading this could have a car accident and become incredibly disabled or it could happen to your child....and believe me, you would not want to be stared at!  It's awful to be looked at like you are some type of freak! 

Ok my ranting is over for now......

I have some great photos but can't get them to post.  I enjoy seeing the boys having fun and really learning something at the same time.  Beats Disneyland any day!  Sarah liked being in the stroller and wearing a skort:)  Just like Mama!  The last time I tried it on her (it's a size 3T it just slid off...this time it stayed up:)   She will always be thin, dainty, she has the body of a dancer but I loved to see that soon she will be outgrown this!


When we got home tonight I went through our mail for the week and we did not receive our stickers for our car tags!  We will have to stay over till Monday and go to the Tag Agency and get them ourselves.  It must have gotten lost in the mail.  I'm sure I mailed it in back in December or early January at the latest but....who knows....  I'm afraid if we dont' get them then our car will get a "boot" on it and not be drivable.  I've heard that the traffic cops in Jax are really tough!   The nurses were all telling me stories and so did one of my friends!  That would be the last thing we need!

Again thank you all for your thoughts and prayers for our family!  We appreciate you all!

Day 82 fish Oil Study~Headed home! Ticket:(

Well....we are going home Tuesday!!!!!!!!!!!   All nursing is set up for 24/7care!  All equipment is ordered.  Thanks to everyone who made this happen for us.  We heard many who said it could not or would not happen but it is!  Alot of work went into it and we are grateful.

Today Jon did all her care.  I came up at lunch and went with her to her therapies.  Then Jon & I gave her a "bed bath"....ummm that was fun....NOT!  It was ok but I just can't think you can get anyone very clean with a bed bath.  She feel asleep as soon as we were done.  I washed her hair too, that was a job! 

Tonight we are going back to the hotel and packing up everything.  We'll go home tomorrow and when we come back Sunday we'll just bring a change of clothes with us. 

Oh we had a wonderful thing happen to us today...our van got ticketed in the hospital parking lot!!!  Our tag is expired and we haven't got the new sticker yet.  So some idiot from the Jacksonville parking violation~tax collector's office came into a HOSPITAL parking lot to ticket people!  A rehab where everyone has been living in some sort of crisis for months just like us!  I'm all for keeping your tag up but there are times when things overwhelm and you are late sending it in!  I called everyone I was so mad and everyone that I  talked to thought it was terrible but NO one could do anything to help me!  Evidently this hospital is targeted alot by the great ticket givers of Jacksonville!   Isn't that just special?  Most of the patients and their families have already been in a hospital for months and now they are in a rehab, some far from home like us.  I am disgusted that they would target a hospital parking lot....go to Walmart, or Target, just down the road....

We are excited to go home, but we know life will be very different than before.  It will be odd to have nurses in our home 24/7.  That will be hard for our family.  But it is best for Selah to make sure she has a qualified person working with her.  We hope it time that she will be off the trach and feeding tube and we won't need nursing care for her but for now it is what we need. 

She will be transported by ambulance home.  One of us will probably ride with her.  So after almost 6 months, Selah will be home soon!

Thank you all for your thoughts and prayers!

Thank you all for your prayers, they are appreciated!

Dream

I had the most incredible dream last night....we were home and i was working in my garden and walked back into the house and Selah was standing by the front door wearing a sundress and she was still little and as I came in, Jon  came in from the kitchen and sat down and said "I was just about to come and get you, she seems completely back to normal" it seemed like I knew she had improved some but then she was was totally back to "her" normal! She was waving her arms all around like she used to do and one of us had given her a doll to hold and she dropped it.  That was something we were working on with her.  Since she waved her arms around in such an odd fashion (and there was NO medical issues with why she did it)  we encouraged her to keep her arms down and hold something.  It was helping some.  Between the odd arm waving and the way she walked, that is why she was diagnosed with CP in Ukraine.  But she had no CP, it is almost like it was a learned behavior or movement.  We thought so because we saw her watching Sam (who walks on tip toes sometimes) and then she imitated him!  There was nothing wrong with her, she just picked it up from being around him.  she also had a funny scoot on the ground.  The same scoot that the teenage girl that watched her did.    And in the dream she was SMILING! (that didn't happen much!) what a dream, hope it comes true!!!!!

I'm NOT saying this dream was necessarily from God but it was a wonderful dream:)  It could have just been my own thoughts as I usually fall asleep praying for her.  Only time will tell........

I usually have crazy stupid mixed up dreams IF I even remember them! 

It was so good to see her like that and it just seemed so real, like all our furniture was in the right places, it wasn't one of those split up dreams where half is in one place like normal and them the other part of it is in some crazy place.  I tend to have crazy dreams like on I'm on drugs or something LOL

This morning Jon is with her doing all her care.  I'm going in at lunch, still getting all the gunk out of my lungs, I'm at the stage where I wake up coughing the stuff out!  YUCK!    And BTW I was sooooo sore this morning after riding the trolley yesterday! 

Jon said she got annoyed in cognitive therapy and she closed her eyes and refused to look at the therapist.  As soon as they left the room she opened her eyes and was not in the least bit tired acting.  CT is the least favorite therapy of hers ( and ours)  It basically is just to see her responses to pain and loud noise and things like that.  She does not like it and we had thought it had been cancelled but I guess not....

She was looking at herself in a big mirror and then she looked at Jon in the mirror too.  He feels like she is alert today.  We will go outside this afternoon.  Love this great weather! 

Please pray that she will return to her normal.  I always say "her normal" because she wasn't a typical "normal" 8 year old.  but we adore her exactly where she was at!  We picked her exactly as she was and were honored (and still are) to be her parents!!   People tell me that they are praying she returns "even better off" than she was...and I understand that, of course we want our child's life to be great but for us, we loved our funny little girl just like she was and yes we were working with her and getting her into therapy but we were also fine if she never improved.  we accepted Sarah and Selah where they were, knowing there was a chance they would never go beyond that....and it was ok. 

When Sam was born, I adored him but I wanted to "fix" him!  Not so much for ourselves but it just killed me that his life wouldn't be "normal".  At some point, our whole way of thinking changed.  We believe that Sam, Sarah and Selah were "fearfully and wonderfully made"  God allowed their conception and their lives.  They weren't "perfect" in the eyes of the world but they are to God and to us also. 

Of course, this accident changed Selah from who she was and that hurts.  With Sam, we grew to know his "blindness and delays" were part of who he is and we accepted it.  I'm not saying I ever quit praying for Sam but there was such an acceptance in my heart, that most if not all, of the pain was gone.  So for me, it is easier to accept what a person is born with, as being THAT unique person.

Now I am NOT saying we don't accept Selah for who she is right now!  We do and are 100% committed to her even if she never ever gets any better!  But it is harder to accept this accident and what it has done to her.  We want to see her improve.  We will give all we have to see that and do whatever we have to to see her get everything she needs and every chance to improve.  She deserves better than this but whatever happens she will have the best life possible for herself. 

So please pray for our sweet little girl who has her own opinions of what therapy she will participate in!!!  Go Selah!