Day 35 Fish Oil Study

Jon stayed with Selah while I cleaned and repacked everything.  she had a fantastic day!  He worked with her with her new "nose" and she did terrific, he was able to keep it on for 25 minutes each time.  The nurse thought he could just leave it on while he was in the room but he went by what the speech therapist had said, so it wouldn't wear her out since it takes much more effort.  She seemed "more awake" today.  Jon thought it might be because of the smaller dosage of Valium as well as having to be more aware of her breathing.  He said she was moving her head at every sound and trying to figure out what was going on.  He also had her up in her chair for about 2 hours and worked with her on the side of the bed, sitting and holding her head up.  He worked her today!  Her arms stayed relaxed so that is a relief!

Tonight we went to the Genesee Country Village and had a Christmas tour of the village thanks to some friends!  It was interesting, especially the church.  The tour told the story of Christmas back in the 1840s...very interesting but very cold and rainy!  Made me thankful for the modern conveniences such as lights and heat!  LOL  When we got back to the main hall, Steve was afraid I was going to catch my butt on fire I was standing so close to the fireplace!  It took me an hour to warm up!

Tomorrow we get all our info about the transfer and say alot of good byes.....we are going to miss so many people.....   It stills seems unbelievable that we are actually leaving....  We thought we were so many different times but we were never ready before to leave.  Looking back it is obvious why we were supposed to stay, Selah couldn't have been in the Fish Oil Study if we had left and gone home.  We never wanted to leave and I think some staff thought that was odd but we just didn't have a peace, there was too much "up in the air" about Selah and we had no assurance that anywhere we could go, could do as much for her as they could here at Strongs!  Of course nothing worked out for us to leave and while it was frustrating not to have hospitals to work with us, we also were always a bit relieved when things didn't work out!  Our poor social worker here should get merit pay for all the work he has put into this transfer!  We are so thankful she is at a place neurologically that she is eligible for a rehab facility and not a hospital! 

Sorry this is short but we are having internet issues.....

So again I ask for prayer for this transfer and prayer for safety....and peace.... and no snow on Tuesday!!!!

Day 34 Fish Oil Study

Selah is doing good today, no problems.  We did some running around this morning then Jon came over this afternoon.  I came over after supper and as soon as I came in, she woke up & was very aware.  The weekends are slower paced, no therapy except what we do with her.  Her arms were normal when I came in, that was the first thing I checked.  So it doesn't seem like she is having an issues due to a reduction in the Valium.

Today we went and looked at the accident site again.  It just still seems unbelievable this happened....where Jon stopped the stroller, the road looks flat, and then further on the path begins a slight upward hill.  If anything it seems the stroller would have rolled backwards down the path, away from the water.  There is an overpass that I discovered right down from the site, so we looked at it from above and was able to see the tiny tree that Jon hung on to...Someone said to me the accident took 4 seconds to happen, I don't remember who told me that, but I have never forgotten that number, 4 seconds....and your life can change forever! 

We have the van half packed....it seems unreal that we really might be leaving here.  Friday was 18 weeks since we left home....next Saturday will be 4 months since the accident...  We've been here longer than we were home with the girls!  That makes me sad if I dwell on it, I want my sweet life back....I'm tired of all this medical stuff, I just want it all to go away and for us to be home, with no problems.  I want to be getting ready for their first Christmas....playing outside, doing things together with all 7 of us ....  I already had the girls matching Christmas dresses and we had planned where we were going for our first family Christmas picture....none of this was in my plans!  

I'm in a weird frame of mind, not feeling real spiritual, feeling pretty down, worried about the transfer and all the logistics that will go along with it.  Not looking forward to her being flown and us driving and it taking 2 days to get to her.  I'm a Mama that wants her chicks around her!  I will be honest I have trust issues....(yes say all my friends and family)  For me to send my daughter off to strangers is very hard for me.  Thankfully my sis in law will meet her and stay with her until we can get there (thank you Val!!!!!)  

Since Sam was born and I had to fight  the NICU doctor (who btw no longer has a license to practice medicine...scary!!)  I've been suspicious of doctors and nurses I don't know...  I've seen too much since having Sam so this is like my worst nightmare for my child to be in a hospital without me.  In my opinion & experience , Florida health care for children is not the greatest and we 've seen quite a bit of it and in various hospitals....  we are spoiled here!  Strong's Hospital here in Rochester is amazing, just for the fact we've been here so long and I've not had to yell at anyone!!   I usually never made it through an emergency room without having to get crazy with someone LOL   I never tell anyone I'm a pastor's wife if they don't already know LOL.....  So my experiences have made me very defensive, maybe I'll be proven wrong, I hope so!   But what I am expecting is to have to fight to get her days in rehab and then more fighting to get her the services she needs at home.  Here it's not been like that, it's been a team effort.  We noticed the difference when we brought Sam here for his eyes compared to the eye hospital we took him to in Miami.  The one in Miami is supposed to be the top one overall for eye care and patient satisfaction in the US!  Well they never asked us!   What a wonderful difference when we came here 5 years ago, it was refreshing, so different!   Now this experience has shown us even more how wonderful the health care is here.  I know some may suggest for us to move here, and we had thought about it when Sam first got his eye implants but we have too many ties in Florida, our church, Jon's job, too much change for our family unless we knew that was where God wanted us.  But I know I will always compare other health care to this and try to "encourage" other health care providers to bring themselves up to par!  And by "encourage" I mean they won't know I'm a pastor's wife....hahahahaha!  I do want to say I've found some great doctors in Florida , our pediatrician is perfect, very balanced and caring and his staff is great, so helpful always to our family.  I wouldnt' trade them for anything and we have a great neurologist too but I've found most specialists and hospitals not to be quite so good in Florida. 

I guess knowing some of what lies ahead for us, makes me more apprehensive about the future.  When Sam was born I just thought I had got a "bad apple " to work with in the NICU who was rude and patronizing to me, refusing to listen to me until I went "Madea" on him (for all the Madea fans out there you know what i mean!)  And even after knowing he was dead wrong about my child's eyes, he still fought me on every point until I was able to get Sam out of the hospital.  I thought then things would get better ....oh foolish me.... I have fought for every single thing and every single medical procedure....   It's true I'm older & wiser now and "I've been there , done that" and know what to do but it is no fun.   My years of working for the Department has done me well, I can focus and not get too emotional and I do get the job done but you just get tired of the fight.  With Sam medically, he is at a different point in his life, he hasn't been in the hospital for years except for the accident and I was ok with the services he was getting and knew it wouldn't be that much harder to get the girls the same services and see the specialists they needed but now....it's a new ball game....

Anyhow let me shut up and quit whining....sorry I don't do it much but I needed to write about how I'm feeling and that is just how I'm feeling right now!

We are not looking forward to saying goodbye to folks who have become close friends to us during this time and folks who take care of our girl, like she was their own child.  Monday will be a rough day for us.  I've told Jon he can't get too emotional, as he is quite emotional, where I try and push in all in....but we will both be a mess.  Thankfully we will still be coming up here for Sam's eye check ups yearly and will be up in the summer.  We believe that Selah will be able to come with us and have her evaluation at the year mark for the study she was originally in, the cooling sheets.  So at least I can repeat that over and over that we will see them soon.....

So pray for us, pray everything goes smoothly.  I'm a bit anxious about the whole long trip thing, and my imagination can run a bit wild with worry.... as much as I worry about the road trip, I worry about Selah being flown there....pray that God will protect all of us.   Pray that Selah will have an amazing improvement by Monday.  I'd love to leave here with on a really high note, for ourselves and for the staff who have worked so hard with Selah!  Because of all the circumstances, we have been here far longer than most would in our situation and we've had folks who have just put so much into Selah!  Dr Asslin, our OT Megan, our ST Meredith, several of the nurses, Kate, Noor, Lindsey,  along with others.....  it will be hard to say goodbye!

Sweet girl Selah Johannah

 

 

Selah is sleeping peacefully tonight.  I just have to update about her arms/hands and my concern that maybe dropping one of her Valium doses was making her stiff.  Right before her 9pm Valium dose she was as relaxed as she could possibly be and her nurse, our dear Lindsey, said it would seem that if she was having issues from the decrease of Valium, it would show up when it was the lowest in her body.  So now I'm not so worried about the stiffness in her arms.  It seems to be more of a reaction to her day along with the fact she tended to carry herself stiffly before the accident! 

 

I read over some of the blog posts from the accident.  I could only get through about four and then had to stop.  It was too intense for me to remember....what an awful time BUT thank you all who wrote on my blog!  I have to admit at the time I was beyond overwhelmed by phone calls, texts, visits, emails, FB messages, and I just skimmed through the comments as I moderated them.  Looking back there were so many sweet messages!  Thank you all I'm glad I can look at them now!

 

I know I missed some messages from those days and I still have about 200 friend requests to look at on FB.  I don't usually add someone unless I know them in real life.  But I do appreciate how everyone reached out to us!  WOW, please know that it meant so much to us to be wrapped in love and each message was like a soft blanket wrapping around our hearts. 

 

I found it very hard to talk on the phone and wouldn't even touch it if it rang unless it was my husband or son.  It's like I had a phobia.  I still find it taxing to talk on the phone.  LOL  when I was a teenager I lived on the phone!  I've gotten away from talking on the phone over the years and now it's hard for me for very long.  Who would have ever thought that?  What a time those first few weeks was!  Thank God for his Grace and you all for your love!

 

Tonight because I was worried I couldn't leave even after she was asleep so I've been thinking about everything

When we were thinking of names for Selah, we of course was going to keep it a "S" name to match all the other kids.  Also all our kids have a "J" name for their middle name so we had to have two girl's names that sounded good together.   We only wanted to use a bible name and we didn't like any of the names we could think of...then we thought of the group Selah, a christian group. so we tried it out and liked it.  We actually had no idea anyone had used it for a name before but since we have heard of a few girls with that name.  Selah is used in the Psalms, it is usually used after a portion of scripture.  It is believed to mean "to pause & reflect on what was said or on the goodness of God"  Just as Sarah Joy was named correctly for all the joy she has, Selah was named correctly for how her life has caused us to pause and reflect on God!  Selah's middle name is Johannah.  She is somewhat named after Jon's mom Joanna but with a little difference to it.  I've always loved the story of Hannah in the bible who prays and God gives her a child, Samuel, so we combined Joanna with Hannah and loved the name for what it meant to us.  We actually pronounce Selah as "SAY`La"  there was a bit of controversy over the pronunciation!  LOL  Jon won, he says it is how to pronounce it in Hebrew....who knows....that word has always been debated in its' meaning and pronunciation!

 

We always took very serious naming our kids.  Each name meant something special to us and all of the children's first and middle names are from the bible.  Stephen Joseph, named after the first martyr and the father of Jesus as well as it is Jon's dad's name too-Joe!  Samuel Jonathan named after the prophet Samuel and Jonathan after his dad.  Shadrach James my FAVORITE bible story of the 3 Hebrew children and James after my husband's best friend who happens to also be his brother!  Sarah Joy, Love the name Sarah, the wife of Abraham and LOVE the name JOY!   So names are very important to us.  And yes we have a few names waiting.....who knows what God has in store for us?  

 

So we didn't know we were going to adopt Selah until about a month before we left for Ukraine.  We were originally planning on adopting a little blind boy.  He got adopted by another family and we were given Selah's picture and info.  I can remember when I first saw her picture, I thought she was a cutie, even in old clothes.  We grew to love her so quickly and wanted to protect her and give her a family.  When the accident first happened, I thought if we hadn't adopted her, she'd have never gone through all of this and that thought just tormented my mind.  But then I was able to focus on the weeks we had had to give her love and show her what a family was....now in spite of all she has gone through I know it was the best thing for her to have a family. 

 

 An accident or sudden illness can happen to anyone at anytime....I'm so glad she has our love and will never be alone no matter what lies ahead for her or for us.  She is a special little girl, everyone who works with her just falls in love with her and her story.  We will never know all that she has endured in her short life, but I am sure it is much worse than most of you who are reading this have ever endured.  Knowing just a part of it, is hard for me to think about....  but God never forgot this little girl forgotten by the world.  She was not listed on any ministry sites, no one knew she existed, but God did....and He arranged things or allowed things to happen in such a way that she came to our family.  My theology usually looks at things as they just happened, God knows but He chooses not to intervene..., the will of man  ( I am quite the armenist)  BUT when it comes to orphans, I  can promise you the God of this Universe seems to intervene in miraculous ways...  I believe God brought us this little girl.  Even though the path ahead was rocky, He brought this little funny,, very different person into our lives.  And we are grateful....

 

Selah has caused me to cry more tears than I think I ever shed in my life.  Her medical situation caused my heart to feel broken in two but I wouldn't trade her, even knowing this was to come, for anything!  I marvel at who she is and how this little unknown orphan girl has changed my life, my family and the thousands who have come to hear her story.  She was only unknown to the world, never to God. 

 

 

 

 

 

Day 33 Fish Oil Study

We are actually really starting to say good bye to staff at RMH and the hospital....it seems unbelievable that we actually may be going to Florida on Tuesday.  We keep hearing things about snow on Tuesday....LOL  that is all we need, the big snow storm I wanted.....  Let's hope not!

Selah wore her new "nose or speaking valve on her trach today.  It was a big deal and Jon & I both came over to be with her.  Basically it covers the trach, Selah can breath in through it but then she has to push out her air through her mouth and nose.  We kept it on for 20 minutes to begin with and she did beautifully.  She had no issues and now we will start using it daily adding 5 min a day, doing it 2x a day.  Soon that will be the cover she uses...on her way to NO trach!  Using this will make her use her diaphragm, her throat muscles, tongue etc.... she hasn't really used them for almost 4 months so she has to be reminded how to do this.  We had hope for this new valve sooner but she just wasn't ready until she had been sick and had had to work harder at breathing.  Now she is handling it like a pro!   We could hear her making noises again but they were faint.  She calms down when she hears herself.  It's funny how being sick helped her so much!

She sat at the edge of the bed today with her therapist kneeling in front of her.  Selah held her trunk up for about 15 minutes on her own.  She only needed minimum assistance with her head.  When Ms Megan first started working with her, she needed 100% assistance, now she is needing only 25% or less:)  She is coming a long way!

 

She had the sonogram on the blood clot in her leg and they couldn't see one, so hopefully she is done with the 2x daily shots in her tummy.  We will find out for sure tomorrow, the sonogram was clear but there were some "changes" that I'm not sure what that means. 

Despite all the gains, there is so far to go....tonight I feel a bit discouraged.  At this point, comparing Selah to what everyone thought would be the outcome, is encouraging.  But comparing her to where she was & remember she was very delayed before the accident, is discouraging.  She is far from the child she was......  I'm thankful that I don't feel she is far away from me like I used to feel but if we were to go home right now, she would still need 24 hour nursing care.  My fear has been she will come out of the coma, but have so much residual damage from the accident that she won't progress any further.  I'm a realist and I am also hopeful but tonight I just feel discouraged.  Please don't feel the need to give me encouragement, for some reason, at times like this it just annoys the heck out of me!   Don't mean to offend, just keeping it real.   There is still so much ahead, so many unknowns....  I wish we could just snap our fingers and everything be perfect again but that's not how it works, 

We asked that her Valium dosage be lowered by one dose and it was today.  But her arms/hands have tended to "draw up" today!  We don't understand what is going on and it seems that just dropping one dose shouldn't be responsible for that but we don't know.   I've put her little animals that heat up on her arms and now her right arm is completely straight and her left looks normal.  Hopefully she was just a bit overwhelmed with all the things she did today and had done to her.  She had a natural (for her) way of holding her hands/arms and they did have a tendency to be drawn up some.  We have looked over all our pictures to compare her before the accident to how she holds herself now.

So this weekend we are packing and cleaning our room.  I had to buy a new set of luggage since I came with the bare minimum...that will teach me!  We are going to go and take pictures of a handicapped playground here and hopefully we can use that to plan one for the kids and also for an orphanage in Ukraine.   We were given tickets to a 18th century village that we plan on going to this weekend.  We think Selah will be flown out around 6 am on Tuesday and we are going to try and leave right after.  We want to get there as fast as we can but Sam & Sarah may have other ideas.  Between eyedrops and diaper changes we get slowed down quite a bit!

So the one thing I always always ask is to please pray for Selah.  Pray that she will recover completely.  Pray that if she doesn't God will give us the grace to be the very best parents for her for the rest of our lives.  The future is scary...parenting a child with special needs is wonderful but since Selah's accident, she is at a level of care that is beyond what we are used to.  There are days when that weighs on me, this is one of those days.


Here is a funny photo of Sam after getting his hair cut, he loves to get his hair cut and was quite happy as he waited on everyone else to be done. 

Day 32 Fish Oil Study

 

   

 

 

 

Today Selah got to meet her rescuers...again....   Lindsey, Bridgett and Sarah helped to rescue the children and we met them right after the accident.  At that point Selah was not doing good.  They were able to meet Sam but this is the first time they got to meet Selah.  We had a chance to talk about the accident.  There are so many missing pieces of that day for us.  Lindsey was the first one to the kids and Jon handed her Sam.  She told us today that he was blue and had no heart beat.  It's a bit overwhelming because the accident was Sam's 4th near death experience....  He was born prematurely & out doctor was not sure he'd survive birth.  He was so concerned that he didn't want me to have my tubes tied & told me that he just wasn't sure how things would go...   Then when Sam was three months old, he aspirated on meds and had no pulse when the EMS got to our home.  Then when he was five years old, he had a seizure lasting close to an hour due to hypoglycemia!  And then the drowning!   Makes me thank God for him daily.  Tonight when I was putting him to bed, I put my hand on his forehead & just thanked God he was alive, well and lying in his bed!!!!

 

Bridgett was also in the water & helped Jon with Selah.  They worked on trying to get her out of the stroller & kept her head out of the water & was able to do some rescue breathing on her.  Sarah was on top of the bank working on the kids with the Doctor who was there.  We thank God for these beautiful young ladies who are all in their first year of medical school.  May God bless them abundantly!!!

 

 

 

 

Selah also got serenaded by a very nice lady with her harp playing.  It was so beautiful!  Selah enjoyed it and so did we!

 

 

Our good friends Bill & Ilene came by to see us today.  We used to work together in NYC almost 20 years ago:)

 

Tonight was our Christmas party at the RMH.....as you can see Sam was not too thrilled with Santa!  Sarah was wanting to roll on the ground.....But it was fun:)

 

Selah had a good day, did great breathing with her trach being closed.  I believe she will be getting the "talking nose" tomorrow.  That is a "nose" or cover for her trach that will keep it covered so she can make noises.  Of course that means the whole time it is on, she has to be breathing through her mouth and nose. 

 

She also will be getting a sonogram to see if the old blood clot in her leg is gone.  Hopefully it is so she can stop having the shot in her belly 2x a day! 

 

We discussed with her doctor about lowering the dose of the Valium she gets.  She gets 4 small doses daily.  Starting tomorrow, she won't get her morning dose.  She was started on Valium when she was having "storming" now she doesn't thank God so we can start backing off the meds and see if she does ok:) 

 

We are so thankful for the progress we and others see in Selah!  It is a blessing!  We are so thankful for her life, and that we will be able to be her mommy & daddy for a long time we pray!

 

In the past month, two children died here that we knew their families...two other children who were part of our adoptive community, and one child that I grew up with her aunt and mom, and one who was a long term drowning victim......all six were really unexpected deaths...  it makes me think to number my days and to appreciate my family.  When it comes down to it, there is nothing on this earth more precious than your family.  We are not promised tomorrow with them.  I know my prayer for a long time has been for God to protect us and keep us all together for as long as possible....not the most deep or spiritual prayer but it is from my heart.  I love my husband and these five wonderful children with every fiber of my being....  There is nothing that means more to me than them.  Just to think that I could have lost two of my children, makes me want to build an underground bunker somewhere & just live there with them!  I've always been a bit over protective ( yes my friends will all agree....) and right now I'm feeling very vulnerable....I want to sanitize everything in sight, put my kids in life jackets and helmets to go out of our room....body armor might not be too much at this point....as well as put them all on heart monitors... Most nights I wake up, and go and touch Sam and Sarah to make sure they are breathing....  I'd put them all in bed with me but Jon won't let me!  Living in the same room has been comforting in a way.  We were just talking about this today with our doctor.  And I have to say it comforts me to have them all around me, maybe that is why it's not bothered me much to live in a small room together for the past 17 weeks!   

 

Life is scary....we have no real control....

 

All we can do is love with all our hearts, hold each other tight and trust God. 

 

But tonight I'm just thankful, thankful that we are all still together.  Don't take your family for granted, you don't know what tomorrow might hold.   Be happy to take care of them, don't look at it as an inconvenience, look at it as an opportunity to show them how much you love them. 

 

Sometimes when I am taking care of Sarah, knowing how neglected she had been for so long, and she smiles up at me, my heart just clenches within me....  This morning I got her up, and gave her a warm bath, since she was a bit wet.  Then I rubbed medicine all over her skin, where she had had a slight outbreak of the skin condition she has had for years, that has scarred her feet and hands.  She just looked up and smiled, so happy, it made me want to cry.  I just love taking care of her and showing her how much I love her by taking care of her.  Then I took her and mashed up bananas, added some milk & sugar and you could just see JOY all over her face.  I would not trade being able to take care of her and love her for anything.

 

With the girls and with Shad, sometimes I can't "go there" in my mind of how their lives were before us.  I know a little but only a little and what I know is stuff that nightmares are made of.....  So I am blessed to be able to love them and give them new memories and expectations. 

 

So cherish the moments with your children....

 

My heart goes out to the families that have empty beds tonight....I'm so sorry....All I can say is I am thankful for the hope of eternity, where one day there will be no more death, no parting, no crying....no more funerals of people we love....

 

Love  your children and spouse with 100% of your heart, don't let anything, come between you and them, don't let anything else take their place.  In my life, only God comes before my family.  And I mean God not ministry or other people or anything else comes before them.   We love other people and the ministries God has placed us in but that is not our focus, not at all.  We've seen too many PK (preacher's kids) ruined or warped by the church/ministry coming before the family.  That has never & will never happen with us.   We committed to that a long time ago and continue to commit to that.  When we stand before God, we want our children standing with us!  We don't want to lose our boys hearts by letting other things, even good things, come first.  So I just want to encourage you to cherish each moment with your child.  Don't wish your time away, live in the moment!  As we have lived the last 17 weeks, in the middle of a storm, we've kept close to all our kids, we lived in the moments we had....it might have been a different kind of life that what we are used to, but even in this time, we have sowed into our kids & enjoyed them.  If I think too much about things, yes it makes me want to be home in our "normal" situation but that doesn't change where we are so I've tried to "embrace the present"  (doesn't that sound all new age, lovey dovey LOL?)  But it's true, we've lived in the moment, not knowing what the next day or week would bring....we still don' t really know what the future holds but then again who really knows the future but God? 

 

Thank you for your prayers for Selah, please keep them coming!!!

 

Day 31 Fish Oil Study!

Another great day!  Jon didn't make it over this morning in time for music therapy but the therapist left a note saying that Selah followed her the whole time with her eyes and head.  The therapist would go from one side of the bed to the other and Selah watched  her the whole time!  She had never seen her be as attentive!

Jon worked with Selah with breathing with out the trach and she did great.  She never got upset or anxious and her oxygen level stayed at 100%:)  He did alot of "selah talk" and she would respond by moving her mouth back at him but she really didn't make a lot of noise but she worked on it throughout the day.  They were visited by chaplaincy services and Selah seemed very suspicious of the chaplain LOL  she watched him the whole time he was in her room. 

Tomorrow we have invited the students and doctor who helped save Sam and Selah to come and meet her.  They met Sam before he was released from the hospital but now they will have a chance to meet Selah and see that their efforts were not in vain.  As medical students, I think it will be good for them to see a "hopeless case" that isn't so hopeless anymore!

Our kids were given the gift of going to Lasar Tag and they went with Jon tonight and played a few games & had a blast! Shad had talked of nothing else all day long, so he is a happy boy!  I had kept the little ones up all day, without a nap and fed them a big supper and gave them both a bath and got them in bed early and I got to read:)  I'm reading "Truman" by David McCoulgh....very good book!

We have terrible internet tonight so this is short and sweet....thanks for all your prayers for Selah!!!!!

HAPPY HAPPY DAY 30 ~Fish OIl Study!

Today is day 30......  Today Selah "spoke" .....

Now you have to understand that Selah was "non verbal" before the accident.  She was considered "non verbal" when she was in Ukraine also.   She seemed to understand some language in English, that is called "receptive language skills" but she could not respond verbally.  Sam is also non verbal but has receptive language skills.  Sarah is non verbal and does not seem to understand any language but we think she knows her name.  Before the accident, Selah seemed to understand "let's eat"  "come here" and that was about it.  If she was thirsty she stuck out her tongue. 

So today Selah's therapist covered her trach and Selah was able to breath through her mouth without getting upset.  She has never done that without trying really hard to breath and getting upset.  Today it seemed not to bother her at all.  Her oxygen stats stayed up at 100% and her heart rate stayed under 100 letting us know that she was ok. 

Then she started making noises....it was a sorta groaning/whinny noise!  The first time she did it, she was quite loud and startled herself.  Then she grew more used to the sound. 

Her therapist was also able to work with her this afternoon so I could see it and she did it several times:)  She is making the effort to make the sound!  But the very BEST thing is that she is tolerating her trach being covered & she is doing breathing through her mouth.   The therapist Ms Meg, would let her breath through the trach and then blow out of her mouth.  Sometimes she would have Selah breath in through her mouth also!  This is just amazing to see her work and not be upset about it! 

This afternoon I was able to hear her:)  It is the beginning of her getting her babbling sounds back!  We are so thrilled!!!  So where she never had any real language, she had some real sounds that she made and we understood them for the most part.  She had happy sounds and grumpy sounds and sad sounds.   We are looking forward to hearing them again!!

The sounds she made today came mostly from her throat.  BUT she began to imitate me as I was leaning over in her face making some of her sounds back to her.  We saw her starting to move the muscles around her mouth!  It seemed like to me she was trying to imitate what I was doing and she was trying to "banter back and to" with me, like she used to do with us.  I believe if Jon would have been here she would have done it more.  She really responds to him!

There had been concern that her vocal cords were paralyzed but thankfully we know now 100% that that is not the case:)


So you might wonder how it is to have three children that are basically non verbal....since we were used to Sam, it was not a big leap when we got the girls.  We've just learned to watch them closer for clues of what they want, it is like having a one year old, I guess you could say.  Sam will go to the fridge if he wants a drink or to the high chair to eat.  Selah had learned the same from Sam:)   Sarah is much more like a baby, we watch her for clues to what she wants but she is such an easy happy child, it is not hard to take care of her at all. 

Having non verbal children is not hard to me.  If you would have ask me 10 years ago, I'm sure it would have petrified me but it's really not that hard.  Of course we always hope for words but it's not what we focus on.  We are thrilled that Sam has learned to understand what we say like "let's go get a bath" or "let's ear"   We hope Sarah will in time understand more and certainly we hope that Selah will come back to where she was and start to understand more also. 

Also I have to add Selah had significant development delays before the accident.  The thought is she probably had institutional autism due to what we can share with the doctors and therapists here.  She also never heard English until we came in April, so she has alot of things that she has to work through including the accident....

I had forgotten to add something the other day about the xray of her feet, they found that her bones are quite brittle and it is obvious that she has been very malnourished at some time in the past....poor baby girl has gone through so much in her short life.


We had a slight change in plans on where we are staying in Jax.  The family that offered the house for us to stay, now has a contract on it....we are glad for them!  The church still is extremely involved with us and has gone back to the original plan of us staying at an extended stay Marriott, close to the rehab!   It may be possible for people to give Marriott points towards a night stay for us and if so I will post about it.  We are excited about the exercise room and pool, it will be good exercise for all of us.  We feel extremely humbled and blessed by all that has been done and the love shown to our family!!!

So we are a grateful family tonight. Selah has a long way to go but she has come a long way. We don't know how far she will go but we are so happy that she knows we are here, she responds to us, she is NOT just a body in a bed any longer!    Please continue to pray for her...she still has a long way to go!