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! 

Day 29 Fish OIl Study

Selah's cold/pheumonia/viral thingy is  much better thank God.  She did great in therapy today and is only having some labored breathing at times.  She keeps her oxygen levels up but it seems she has to work on breathing.  She did everything her therapist wanted her to do today and did it good.  Her doctor asked if she could share Selah's story and the fish oil study with a group of PH.Ds from Cornell University tomorrow!  We are so excited for others to hear about how Fish Oil is helping our daughter to recover from a coma.

I do want to explain to you that Selah is taking a very high pharmaceutical brand of fish oil.  It is not something you can just buy off the shelf.  She is also taking 4 oz a day of it!  Soon I will have a link on my blog to Dr Barry Sear's website.  You can buy the fish oil (and some in pills thank God ~cuz that is some strong stuff) along with other products he endorses.  Dr Sears works with different sports groups and has done several studies of the benefits of fish oil for various issues.  He has also done some books on diets/how to live healthy.  At some point, it became clear that fish oil could help brain injuries.  There are several studies supporting that fact but more studies will probably be made in order to get a wider group. 

I will tell you a funny story.....when my friend from college emailed me the article that was on CNN, I called Selah's nurse that night.  She told me that sometimes the hospital allowed families to give their children vitamins that didn't come through the hospital and maybe they'd allow us to give that to her.....  Well that was all Jon & I needed!  The next morning, he dropped me off at the hospital and went straight to CVS and bought TWO HUGE bottles of fish oil!  We were ready to start popping them and putting them in her g-tube!  The morning nurse thought we had lost our minds LOLOLOL! 
Thankfully someone soon contacted me from Dr Sears' office and let me know the difference between fish oil you might buy in the store and pharmaceutical fish oil that is very refined.  We still have those bottles.....  We laugh about it now but we were DESPERATE~~~

Well it looks like next Tuesday Dec 11th will be our day to leave here!  It also happens to be Jon's 49th birthday!  If we really go on that date, we will be one day shy of her being in the hospital for 17 weeks!  It will be 112 days!  Then who knows how long she will be in rehab!

So keep praying for our Selah!  I stand in awe of all that God has done!  Some may say "you guys just gave her some medicine...it wasn't God"   But I can tell you first and foremost ALL good gifts come down from above and that include the fish that God created!!!!  She was starting to improve on her own but now that process has just sped up!  We are grateful, first to God, then to a doctor who discovered this and brought it to the world's attention and to our doctor and hospital here that was willing to try it!  And to my college friend David who emailed this to me in the first place!!!!  We have grateful hearts and a little girl who is waking up and doing things no one thought she would ever do again!

Day 28 Fish OIl Study

Selah is doing better today although she is having regular breathing treatments,  No fevers since Friday morning so that is good.  It looks like she is recovering from this whatever it was....thank God!


One thing I have noticed today, and our doctor remarked on it also,  is that Selah is keeping her tongue in her mouth more.  Most people who have neurological injuries and/or have had breathing tubes tend to let their tongues hang out some.  It is because it is easier and gravity actually plays a part in it.  Selah has shown tongue control but today has been great, she is amazing!!!

We have some great news.....

A dear friend that we went to college with, really got burdened for our family's housing situation for when we go to Jax for rehab.  He contacted a friend of his, who listened to Bryan and read our blog and then his friend, Bill, went to his church Mandarin United Methodist about it....  Several Sunday School classes and groups of the church wanted to get involved in helping us....  So a special family offered us the use of a home rent free for up to 3 months!  The house is beautiful and in a great area of town:)  The different groups in the church are committing to various things such as the utilities, bringing in dinners etc....  We are beyond blown away by all of this.  What is so wonderful is we have been concerned about how long she would have in rehab.  The average stay in patient is around 3 weeks, that's not to say she wouldn't stay longer but we were worried because we feel she needs much more than that.  We have some great therapists set up for her in Zephyrhills but no one that has worked anyone off a trach.  The speech therapist we have set up, has never done that and doesn't feel comfortable with trying to do that.  BUT now even if she has to leave in patient  quicker than we'd hoped for (due to insurance! ) we could probably  still stay there a few more weeks and do intensive out patient therapy I think!  So it looks like God has once again provided for this little girl....(we are just along for the ride) 

This past year (since November '11) when we committed to adopting Sarah, has been a complete adventure.  We have never experienced anything like it.  God has led us throughout this year, through the different paths,  He has remained faithful to us & we commit to stay faithful to Him.  This year has filled me with more joy than I ever thought was possible and certainly more sorrow than I thought my heart could bear.  But the one thing that has remained consistent has been the faithfulness of God. 

We said YES to God last November when we saw Sarah's picture.  We knew we wanted to rescue two children and God sent us Selah!  We had no idea what was ahead for us but God did and He has walked with us through this past year in such a real way!

http://www.youtube.com/watch?v=qOkImV2cJDg

This song has spoken to me alot lately....  "Whom Shall I Fear?"   by Chris Tomlin
"I know who goes before me, I know who stands behind, the God of Angel Armies is always by side, the One who reigns forever is a friend of mine"   That last line...."the one who reigns forever is a friend of mine" just gets me every time I hear it....

My mind goes back countless times to the ONE prophecy I've ever gotten that I really believe was from God, that day in the mall bathroom.....  "your family is going to go through something big in the next few months, do NOT fear, many will see"    Only God knows how many times I have clung to that word...espicially the "do NOT fear"   The worst days when I could barely control my body to keep it from shaking or the times when the tears flowed like rain to the point my vision was affected, I clung to that word.  There wasn't a promise of healing but rather an admonition to me, to not fear.  It was NOT  given to me in some angry judgemental way....but in a calm peaceful way.  I felt it was said "like a hug".  A promise that there was no need to fear because God was going to walk throught things with us, no matter what that was....   Many times I've said to God " I will not fear ......"   Sometimes it was "I will not fear the doctor's words" or many times it was "I will not fear the future"   The future was sooooooo scary at times.  Even now, there are unknowns but I know the ONE who goes before me...

So tonight as I write it, sitting once again by my little girls' bedside, I KNOW that the God of this Universe is a faithful God!   Tonight I sit here with thankfulness in my heart for the progress she has made and with hope for the future.  But even in the worst days, I still knew that the God of this Universe was faithful....  that truth carried me days when I thought my daughter would die, it carried me when I thought she would never even know I was beside her, days when she was so far away....

I can promise you that there is nothing in this world worth hanging on to compared to living for God!  For many years, even as a Christian I tried to "make things happen" and be in control of my life.  If you can't tell, I'm pretty much "living in the moment" at this point...some might call it "living by the seat of my pants" LOL  I don't know what lies ahead, good or bad...but I KNOW that God is with us and I know we want to live surrendered lives, now and in the future. 

Please keep praying for Selah!  Thank you!!!!

Day 27 Fish Oil study

The doctors were concerned about Selah and reran some tests.  Her chest x rays were the same, no worse, no better.  She hasn't had a fever since Friday morning but has not seemed to feel good.  She has had alot of secretions and I've been doing the suctioning.  Her blood work was all good and her white blood cell count is normal which just points to a simple viral thingy going on.  We can't help but worry some but her oxygen levels are normal and she has not needed any extra oxygen.  I got her up in her chair for about 2.5 hours today and she did fine.

Below is a video I took last night.  I had put the toy in her hand and she started moving it around, waving it.  I was watching her for about 5 minutes and then thought I should video it for Jon.  By the time I found my phone and figured it out, she had slowed down some.   It's so wonderful to see her do new things and it just lifts our hearts:)  When I think back just a few weeks, it is unbelievable how far she has come!  We can't wait to see what she will be doing in a month!  Hope you enjoy it!

 

Thank you all so much for your prayers for Selah!  We are so blessed to have such support!

Jon will be preaching at CCC on Sunday

http://www.cccew.org/

Jon will be preaching at CCC on Sunday Dec 2nd if you live in the area!