Day 81 Fish Oil Study~ St Augustine pictures

Sam on daddy's shoulders at the fort.  He loves his daddy

 

 

 

 

Sarah and Steve in the fort

 

 

 

 

At the fort

 

 

Waiting for the trolley:)

 

 

 

 

Selah had a great day no issues.  She was up all day in her chairs and did fine.  We called and checked on her a few times.  Very glad she had no issues.  she has done picture perfect!   Tomorrow Jon will be doing all her care through the day till night.  Then on Monday I'll do it.  It's called "rooming in" and we did it also with Sam when he was a baby.

We took the kids to St Augustine and they had a blast.  It was good for them to be out and learning something!  St Augustine seemed more commerical than it was over 20 years ago the last time we went.  I also noticed several businesses closed including the old store that is down by the fort!  I was surprised. The boys loved the fort!  What a sense of history.  So many people have been in that fort for the past almost 500 years.  Old things really amaze us Americans!  We don't have much "old things" so 500 years old stuff is really amazing!  We have pictures of Jon and his family there many years ago...kinda makes me sad, with his mom passed and his dad in bad health.    Jon heard an elderly woman saying today that the last time she was there her children were small....she was probably in her 70's.  Makes you want to "hold the hands of time" tightly....

In high school chorus we used to sing a song that I thought was quite silly at the time..."If the hands of time were hands that I could hold I'd keep them safe and in my hands they'd not grow cold...."  In high school I wasn't about "holding the hands of time"  I was READY for LIFE!  But now with children, I just want to grab and hold Time's hands....maybe push them back a few months too. 

Things are coming into place for us to go home next week...thankful for everyone who has worked hard on our case to ensure great care for Selah!  So many people told me it would/could NOT happen as we needed but I knew it would.  I realize that this is a long term situation and we know everything might not be perfect 100% of the time.  But our expectations will be that it will work out as it should and are committed to seeing that it does.  Really glad that we have a lot of support within the "system" and that many people are aware of our case and unique situation with three handicapped children.  I am glad that during this time of limbo that our doctor here started Selah on Ritalin, per our request, and that we believe we are seeing some improvement, noted by others!  If we had been home, she probably could not have been started on it, since it would have needed to be monitored closely:)  So all things do work out.....

As you all know, I've really have had some trouble with my neck/shoulders/back...I bought a new pillow and it was the best $15 I have ever spent.  I still have issues but probably 50% of the pain is gone.  Today on the trolley, I thought my head was going to fall off.  I literally had to hold my neck with my hands when the road got bumpy.  I'm hoping I didn't rehurt it!  I KNOW my days of riding roller coasters are done!  I can't even handle the trolley on cobblestone streets LOL, this old age stuff stinks!

I've also been fighting the weirdest cold since last weekend.  At some points I am completely fine and then all of a sudden my throat will start hurting so bad, I think I have strep then it goes away.  I have never had anything like this.  I think I am becoming a hypochondriac...actually I am one...I just try and keep it to myself and stay away from anything medical on the Internet or I'll be diagnosing myself with prostrate cancer or something LOLOLOL  I am NOT kidding!  I'm awful!


Some more pictures of today.....

The chaplain counseling with an inmate at the old jail LOL

 

 

 

Shad decided to get on the lap of the sheriff

 

 

 

What a beautiful day in Florida...we actually were a bit warm in our jeans and long sleeves

 

 

 

Shad in the fort.  He really loved it and wants to go back.  I love 9 yr old boys:)

 

 

 

Sarah wants to be down on the ground all the time.  But decided the hard ground of the fort wasn't the best either LOL

 

 

 

 

 

the courtyard and steve's head lol

 

 

 

Shad put himself in the gallows:)  He also loved the jail

Day 80 Fish Oil Study ~ going home soon!

WOOHOO!  Just got a call concerning our nursing situation.  An agency has committed and has 24/7 nursing care set up for Selah.  Right now there is only a 12 hour slot that needs to be filled but the staff feel that will be taken care of by tomorrow!!!!!   So it looks like we will be going home next week!  I am looking forward to the next step in our journey.  I believe Selah will get better at home surrounded by us and in a familiar place with happy memories.  We've lived in limbo for so long this almost doesn't seem real!

It will be good for my kids I've felt like the last 5 months have been a time of upheavel for them.  They have handled it well and never have complained but it will be good to get back to a schedule and a somewhat more normal life.  We should get the boys books next week to start homeschooling....LOL me homeschooling....God help them:)   Steve has to take two years of a foreign language and he has chosen Russian!  I'm excited for him and he is very interested in it.  Living for a few weeks in another country does expand your horizons for sure:) 

Selah had a great day.  She was very attentive to us it seemed every time I talked to her she looked straight at me and even followed me some with her eyes.  We had our weekly team meeting and we asked for her to continue on Ritalin.  We aren't having huge changes but there are some small consistent changes we are seeing.  She is on a very low dose of Valium so we are allowing them to double the dose for night time to see if that will affect her tone and make her looser (even doubled it's only one fifth of the dose that can be given!  very low)  It might affect her tone (for the good during the day and make her more comfortable)

Tomorrow we are taking the kids to St Augustine.  It's about 15 miles from where we are staying.  We've always wanted to take them to the oldest city in America but never had.  I kid around and say we have taken them all over the world but never made it to St Augustine:)  It should be fun and a reward for them.  The have been patient and so helpful during this time.  On Friday, Jon is doing his "rooming in with Selah" where he will do everything and I will do it on Monday. 

Today I changed her trach again and this time I did not close my eyes!

She is watching me rather closely!

 

 

 

 

Then she looked at daddy when he was talking to her

 

 

 

This week the trach change was easier for me and it doesn't bother her one bit.  She doesn't wince or act like it hurts!  If she did I couldn't stand that!!  I'm glad I could push past my fears and do the trach.  I have NEVER had anything bother me anymore than the whole trach thing....but I need to be able to deal with it.  It's just funny because it's NOT like I've never dealt with medical stuff LOL!  Sam came home on three machines and had eye surgery within his first month home but he never was on a trach.  Nothing else is as hard as that, I think it is the responsibility of her airway.....that is scary!

 

I don't know if this is much of an issue now since we are leaving next week but if you are interested in donating Marriott points towards our stay here you can contact Bill at wbehrens@comcast.net  and he will tell you how you can do it.   Thanks

 

As always thank you so much for your thoughts and  prayers for Selah.  I really appreciate each one of you!!!!





All Extremes are Dysfunctional

You know I've never wanted one thing to define me!  My life is not just the mom of 5 kids a preacher's wife, the mom of adopted kids, the mom of special needs kids I'm not just a Christian, an American a woman a former probation officer,a blogger, a gardener .....  All those things are parts of who I am,,.

But it is a struggle.  In Real Life, some of you might not even like me!  And I'm sure I might not like YOU either!  LOL (no really I'm laughing...)   I don't "play well with others".  I love people but most of the time I'd rather love them from afar:)  Now I love the disenfranchised~ those are the folks I often feel the most comfortable with, no being fake, not having to be "spiritual", and for the most part not having to live up to some one's standards of who I should be.  BTW the disenfranchised I'm talking about are the ones who have  had their rights or privileges taken away, not in a political way (although that could be the case in some instances)  but  the orphans, the prisoners, the disabled, the old.....

It's so funny to me that I always wanted to be a preacher's wife until I was actually one!  Now I love my husband and I know I married the right person but I'm not preacher's wife material!  I HATE seminars and small groups. Please do not ask me to go to a "women's retreat" or worse a "pastor's wife's retreat"  (been there, done that, one time was way more than enough for me and yes there is a story there that is quite funny but no I can't share it yet)  I would absolutely never go on a "marriage retreat"  UGH!   I do not read much Christian books ( most of them are a bunch of hogwash anyhow) I like theology books ( I mean real theology not "Your 7 steps to financial freedom or Healing or whatever")  Most Christian "music" leaves me cold....   I do love the hymns. And Lord knows I hate Christian TV well actually I will watch it sometimes just to get a good laugh or get good and mad!   I HATE to hug!!!  HATE!!!!  I'm not a touchy feely person, except with my family and there are days when I reach my threshold early on with them.....  I don't like men who are patronizing and they seldom like me since I don't put up with nonsense.  The older I get the less I put up with.  I'm a conservative Republican but I don't always vote Republican but I am very pro-life but I believe strongly in the death sentence (remember I worked as a probation officer many years!) 

I love keeping the earth clean, Green living and I'm a tree hugger, although I know this earth will one day pass away and I really dislike Al Gore....  I believe in eating as natural as possible, no chemicals, no NITRIDES, as organic as possible ( my garden is 100% organic and it is a pain!)  But I really believe fervently in vaccinations and never had the slightest desire to breast feed!  That just seemed way too gross for all of us!  I love animals ( often they are easier to love than humans) and won't kill anything except mosquitoes and ants and flys!  We even take out spiders and roaches (they have their place in the eco system!  I'm not a Vegan but wish I liked veggies enough to be one but I don't:)   I love to read mysteries with a passion, actually I love to read almost anything (except for the afore mentioned christian books!)   Libraries are my favorite place to be!  I love Maps and seldom get lost, I am a GPS:)  I'm pretty smart and confident in my skills, I'm very administrative and see the big picture.  I'm sarcastic ( oh you have no idea....)  I love guns and target practice, I'm a good conservative but not always.... I hate horses ( one of the few animals I do not care for at all)  I love getting messy and real with people, I can roll with the punches and I have learned (especially in the past year or so) to be incredibly flexible in every area of my life.


I love my husband and feel like we work as a team now (for the first 10 or so years it was not like that) I do believe in submission, in the sense if he was truly against something, I wouldn't do it or if he really felt strongly we should do something, I would do it.... Most of the time we agree. One thing that worries me in the "church world" is young women who get married, have kids and have no real skills. It's funny there is this huge swing back to the 50's mentality in some groups. That is scary to me. I made it on my own in college and worked sometimes 3 jobs at once. I had a career until I realized that Sam needed me to stay home with him. I LOVE being a stay at home mom BUT I have the skills to work a real job if I had to support my family. That brings a huge comfort to me! I don't ever want to be totally dependant on one person! I can remember women who were totally dependant on their husbands for everything. One poor women in my church had a mean hateful husband. He controlled her life, how long she could stand around after church, what she wore, how often they saw their grown children (who hated their father) he'd make her walk to work in the rain...my great aunts and grandmother would hold her up as an example of what not to be. All three of them were strong women who worked when it was unfashionable and two of them divorced their husbands! But they always told me to be able to stand on my own two feet. My grandmother almost had a heart attack when I told her Jon and I had a joint checking account! She never had one with either of her husbands! 


 I love my friends & others who aren't Christian but I believe in a clear cut message.  I don't believe a "watered down gospel"   I believe if you are not a Christian, you will not go to heaven.  I personally wish that the Bible wasn't quite so strict but hey I didn't write it!  I have friends that I consider them "living in sin" whether they are living in homosexuality, with a boy/girl friend or just "out there" in various ways, not attempting to live a moral, upright life (according to scripture-not what some particular church preaches)  To me scripture is pretty plain and people crack me up when they try to give "soft" explanations for things...  this is pretty plain in 1 Corinthians 6 ." ⁹ Or do you not know that wrongdoers will not inherit the kingdom of God? Do not be deceived: Neither the sexually immoral nor idolaters nor adulterers nor men who have sex with men^{[a] 10} nor thieves nor the greedy nor drunkards nor slanderers nor swindlers will inherit the kingdom of God. ¹¹ And that is what some of you were. But you were washed, you were sanctified, you were justified in the name of the Lord Jesus Christ and by the Spirit of our God.  I also do not think people who ignore the orphans, the widows, the poor ( and i mean the poor ) will go to heaven....  there are too many Scriptures commanding us as the body of Christ to take care of "the least of these" 



I am so not perfect...but I do believe in a standard of living that draws us close to God and to others.  I may not come up to your standard or you may think my standard is too high....I don't know but I do know that God can reach each of us where we are at and help us to reach up higher! 

I feel like I have fought legalism all my life.  When I was a teenager, I was absolutely one of the most chaste girls ( because I was petrified of going to hell!).  But one time I was in my room reading the bible, on a hot summer's day in Florida with no a/c, in shorts and my great aunt Ruby, came in and said "you whore, why are you even reading the bible"   That was a turning point in my life.  I decided then and there I would not allow anyone to ever judge me spiritually by something like that!  Now there are times in my life I needed some judging but that was not one of them!  I've fought spiritual abuse in the church world.  I've fought being put into some one's mold and sometimes I don't think people always realize what they do or try to do to others.  There were several times "in ministry" that I felt we were in spiritual abusive situations.  That's just sad!  I don't even know if the folks realized what they were doing...but looking back (and even at the time) it's easy to see it was unhealthy!   We really really try our best to never put others into those types of situations.  Listen, if the Bible doesn't call something wrong, I'm not going to hop in and tell someone they are "in sin" 

I really worry about several groups in the evangelical church world today.  There are the pentecostal/charismatic ones who seem to want to draw folks in to scam them and then there are other groups who try to draw in folks to lord over them.  I've read some about some of the movements in the church world today and there is some stinking scary things out there!  It's like if there is something good like homeschooling or large families or mentoring some idiot has to go and take it to some weird legalistic degree......how about this quote I learned in Bible college "All extremes are dysfunctional"  I try and remember that whenever I want to go on a tangent!  See this is why I don't "fit in" anywhere...I refuse to be extreme....  Jon and I are probably considered by many to be conservative parents....until we are around other "conservative " parents and then I think we look liberal...but we have our children's hearts~they are our kids but they are also our friends and we actually enjoy being with them 99.9% of the time!

Ever see the movie "Liar Liar"?  I am too much like the actor in the movie that something happened to him and he couldn't lie....(it's been a long time since I saw the movie)  I can't lie....I can' say politically correct things.... I can't make "nice talk" or fake talk.....  Oh there are times when I wish I could just play the game (whichever game it was at the time) but I can't....I absolutely just can NOT do it!  People don't like that.....  So please don't ask me my opinion on something if you don't want to know....I won't say the "right " thing.  It's not that I'm a "know it all" or at least I hope it is not because of that but it's just because I'm a person who can't fake it.  The best I can do is just stay quiet....I try really I do....but I dont' always succeed!

One time I was in a church service, I was in college and there was a very false doctrine going around at the time.  The doctrine was that Jesus would come back in the fall of 1988.  Well I went to a church with a boyfriend and the only thing that pastor could speak about was this false prophecy but he believed it was truth!  Finally one Sunday night the guy was going on and on and on....and  he called the author of the book Dr So and So just one time too many and I piped up and ask "And where did he get his doctorate from???"  It just came out without my control....LOLOL  The pastor sputtered and just went on...I found out he did not appreciate it but come on...obviously the pastor and this guy were wrong!!!  

I hate false doctrine in the church!  I really hate when folks don't know what they believe or how to explain it.  I hate false doctrine that doesn't prepare people for the reality of the sorrows of this life and teaches that God is some big Genie in the sky who will fulfill their wildest dreams.  I hate that that doctrine has crept into the Evangelical churches.....it's awful and it causes so many to lose faith when something doesn't work out the way they think it should go!  Oh the blogs and stories I've read of folks being hurt by others or by false doctrine and who now not trust God with their lives.  In fact so many of them turn away from God 100%.  I've seen in happen to dear dear friends who went through hard times and decided since God didn't provide the miracle they wanted the hell with God....  it's so sad and I know, I was there myself at one time.  And why do folks get to that point???  Some of it is their own fault but I lay much of the blame at the feet of their pastors....  Our church can tell you we don't whitewash the Christian walk and preach that everything is just going to be hunky dory....  I guess that would be really hard to fake for us.....


So it is almost 3 am and I have probably ticked off everyone who reads this blog but this thought has been rolling around in my empty head for days and just had to come out.....remember this blog was created years ago for me and although you are welcomed to follow I do write what I'm thinking about....  Maybe in some odd way this rant tonight has encouraged you to be real and authentic in your faith.  (Although I hate that word authentic  more often than not when someone uses it, they are not  authentic!  LOL)  Another new "christian term" I hate is the word "servant/leader...why do I hate that term?  Because i have heard it preached/taught and primarily the ones preaching or talking about it seemed more concerned about themselves than being real servants.  I find the ones who just "do it" don't have to tell others to do it they show by example!  I will never forget one time years ago, Sam was having an issue with his implant and we were down in the South Florida area over the weekend and went to a bigger church and the pastor was throwing that term around....and he had so many "armor bearers" we couldn't get through to get prayer for Sam without almost having a pat down....I kid you NOT!!!!  I left with the sickest feeling in the pit of my stomach!  "Armor Bearers" really????   Armor bearers are supposed to be helpers, in some churches we'd call them ushers....but most ushers wouldn't be carrying the pastor's bible/coat etc....it was odd....very odd.....  The life style around that pastor made me doubt very seriously that he was any type of real servant/leader.

I know by now you are saying "Judge not"....I just "love" (said sarcastically) how that piece of scripture is taken out of context....usually by folks who don't want their sin or lifestyle judged.... 

There is a balance....in everything.....

Day 79 fish Oil Study and precious baby pictures of the girls!

Sarah as a newborn

 

Sarah as a toddler  she can't even stand that good now.  she regressed so much in a year in the mental institution

 

 

Sarah standing....

 

 

Selah when she entered the orphanage.  she was 2.5 yrs old but it doesn't look possible.

 

 

Selah is doing much better today.  Her breathing is good and she went out to therapies.  I was sneezing so much this morning that I was afraid to go and see her but by the afternoon I felt like it would be ok if I wore a mask and didn't get in her face. I asked the nurse and they were ok with it.   I missed her so much, I just felt like I had to see her.  Her tone was great!  She was really relaxed and comfy!

 

Jon did all her feeds tonight:)  He did it perfectly. I spoke to one of the people in the State who is working on Selah's nursing and we hope to hear something tomorrow.  They are working very hard and looking at several different ways to get her nursing.  We are hopeful.....

 

Finally got all our pictures printed out and have about 3000 to put in albums!  I got all our pictures done up through getting to the girls LOL!  Now I realize I have to download some of our facilitator's pictures as he got the first few moments of us meeting out girls!   I have a thing about pictures being in chronological order!   This is going to be a HUGE job!  It is heartbreaking to see Selah as she was...before the accident.  Although she has gained about 12 pounds and looks great.  Thankfully she has never had a stomach problems and the pedisure has put on the pounds.  Her hair and nails have grown so much also.  Her color is beautiful everyone always comments on how good she looks.  Some kids who have a neurological accident don't do so good in these areas. 

 

Please keep praying for Selah!  We want her back to us all the way.  Oh I miss her funny little ways..  I love when I can see her personality coming through.

 

 

 

 

Some more pictures

 

This is blurry, Jon took it right afte I finished the trach the other day.  I don't know if Jon was shaking or I was LOL!

 

 

 

Selah and me and one of our favorite nurses

 

Steve and Sam today before hair cuts

 

Sarah and Steve today talking

 

Shad

 

 

 

Sam drinking

 

So glad to be able to upload pictures.  Today I worked on putting pictures in the albums...I have over 3000 pictures to put in.  Maybe even more than that....I took my memoray cards to Walmart and worked on printing them!  I also made copies of some baby pictures I was given of the girls.  I should be able to  post them tomorrow. 

Day 78 fish OIl Study

Sam loves his haircut

 

 

Yes she gave him a shampoo and he loved it

 

Happy boy

 

 

Selah is sick and had to be suctioned alot today.  She did fine in therapy but is obviously not feeling good.  I was so sick this morning  I was afraid to go to the hospital then I find out she is sick too!  I ended up not going because I was afraid I might get her sicker. 

We are keeping her on the Ritalin, not expecting much until she gets better.  She is going to be put back on antibiotics.  Hopefully in a couple of days she will be fine.

I have this thing if I'm sick I drink lots of tea and take lots of vitamin C so I'm hoping I'll be fine by tomorrow.  I'm feeling better tonight....

I did take the kids to get their hair cut today and they all look so much better LOL   As you can see from Sam's pictures....he enjoys getting a "buzz and a shampoo"  more than any child I have ever seen!!!

Please pray for Selah that she feels better soon!

Chance to help Ronald McDonald House of Rochester!!!!

Compu-Mail, a Buffalo based marketing and printing firm, will be awarding $5,000 to one of five charities nominated by their customers. Ronald McDonald House Charities of Rochester was a finalist, and we need your vote!

You can vote once each day until February 14. Use the link below, and please share with all your friends!

http://compu-mail.com/2013/01/vote-charity-connection-finale/

 

Thank you for logging on and doing this for RMH!  They did so much for us!!!!!

Pictures!

Last weekend on our way home!

 

 

 

 

 

 

Sarah....

 

 

 

 

rgin-right: 1em;">

 

Jon with his dad and two brothers Scott and Jim on their dad's 85th bday!

 

 

 

Sam with his tie on!

 

Thank you to a friend Janet who figured out how I could load pictures:)   I have some more good ones but I wanted to do a test to see if this would work:)

 

 

Day 77 fish Oil Study!!!!

Last night Selah required a little oxygen.  The nurse felt like she was sleeping so deeply that she wasn't breathing hard enough.  Other than that she has done great.  I spoke to the weekend nurses and got some positive feed back.  The day nurse felt that Selah was more alert than last weekend and actually was looking at her when she came in the room.  The night nurse felt her tone was good and she was more relaxed.  The oxygen thing was a bit odd as she is not sick or anything.  We are planning on keeping her on the Ritalin another week just to see if we see a few more changes. 

We are back in Jacksonville after a good Sunday with our church.  I was NOT feeling the most spiritual but sometimes just fellowship  with folks who love us, can be a balm.  Jon's brother came to service and went out to eat with us after,  that was great.  We also ran into some friends~  one friend BJ, did the beautiful quilts for the little kids and now has done about 14 hospital gown type PJs for Selah to wear at night.  They are beautiful and all kinds of different themes from nursery rhymes to tie dye, she will be cute in them and they are so convenient at night.  Then we drove back on the way here we saw a big buck and a doe:)  Jon gets excited to see wild animals. 

I seldom get sick but I am fighting a cold...the kind of a cold that is your put your head down...your nose will stream down!  UGH!  Vitamin C and hot tea usually gets me well!  It worked in NY and I'm counting on it now!!

Still having issues putting up pictures on here.  I tried using the church computer but it seems to be my blog not the computer.....UGH!  I hate issues like this especially when I have some great pictures!!!

Please pray that Selah will have a great week and progress!  Thank you all!!!!

Day 76 Fish Oil Study

We got up and got everyone ready and went to see Selah this morning before we left.  The kids all have a little bit of a cough or runny nose so they stayed outside just to be safe.  It is so hard for me to leave her to come home overnight.  She was calm and her tone was great today and I just wanted to grab her up and bring her home with us!

We've been driving some country roads most of the time to come home and avoiding the interstate.  It's less miles but you can't go as fast which drives me crazy!  I'm a Type A+ personality while Jon is a type B all the way!   Opposites Attract in our case:)  So we stop at the same Golden Corral in some little town, I think it is Eustius Fl and I swear I don't know how people eat while staring at our family!  I can get very sarcastic and there are days when it is all I can do, to not make a public service announcement along the lines of...."I will throw mashed potatoes at you if you look at us for more than 3 seconds!!!!"  Ok rant over....  I try to tell you all I'm not real spiritual....LOL  I just think "what would Madea do???"   If you don't watch Tyler Perry's Madea movies you are mising out....  they are just so real and funny to me, I guess I can relate to them! 

We drive by Merle Haggard Juniors house every time we go that way.  We only know it is his house because he has signs up saying that....BTW, He is not the singer it is his dad that is/was.  For some reason that cracks me up too...  I just don't get it....

It's bittersweet to be home. Unless you've lived away from home for months on end, there is nothing more relaxing than being at home!  With all your junk!  I immediately put on my stretchiest old sweat pants and junky tshirt! It just feels so good not to have anyone around.  But on the other hand, we can not stand being away from Selah.  It's one thing to be at the hotel a few miles down the road...but to be 4 hours away is hard. 

Some have asked why don't we just bring Selah home...at this point, she is eligible and needs 24.7 care.  We can not even get an agency to give us a few hours a day. That is why we are waiting for it all to be in place.  If we chose to leave right now we would have NO nursing care whatsoever and we just can not do that!  We are really hoping for some answers this week, by Tuesday.  If not, we will have to push for answers.  We can not continue living like this and my husband needs to get back to work.  It's complicated for us.  Jon is preaching each Sunday at the chapel and at our church.  He is glad to be back at least that much but he needs to get back to work full time! 

God has been so good to us through so many different people....we are just awed by the kindnesses shown to our family!  As you know Mandarin United Methodist has paid for/contributed points so  our hotel bill has been covered!!  On top of that they send us meals almost every night:) 
 As well as they have sent us gift cards and gifts....they are an amazing bunch of happy folks!  If you live in the Jacksonville area, and don't have a church home, they are a good group of folks who are ready to welcome you!

We got home today to a friend who sent us videos and games!  And another friend wo sent us prayer shawls, I'd never seen one before, thank you they are beautiful!  We also received a check from the Correctional Foundation a great group that my husband has been a part of for years!  That was a blessing!!!!!  And I want to thank a friend from NC who sent me a gift to go and get a massage a few weeks ago.  I went and felt pain free for a couple of days and plan on going back:)   We've been blessed by so many different people over these past 5 months.....we can only say "thank you" and promise to "pay it forward" as we reach out to others!!!   It's been over 24 weeks since we left home and 23 weeks since the accident.....thank you for everything during this time!!


Thank you for your continual prayers for Selah and for our family.  Please pray specifically that she will continue to hold her head up more and that she will get stronger.  Pray that the Ritalin will work and the fish oil will continue doing its job!  Pray that the right nurses will be put in place and that we can get word this week of when we are coming home for good!!!  I ache to be home with all my family together but I also know that we have many respondsibilites and live outside of town, we do not ever want to put Selah at any risk by doing something dangerous just to be home.  I learned my lesson.  I really pushed for Sam to come home as soon as was possible when he was a newborn and that was a BIG mistake!  I just thank God he lived with all the issues he had and with NOTHING in place to help me!  So having learned that lesson, I am more cautious.  I also know if I just say "forget it" and come home, Selah will NEVER get the things she needs...how do I know that?  From Sam....after he was already home, our pediatrician tried his best to get us some nursing care and never was able to get even one hour a week and Sam was on three machines!!!!  So we pray and wait...   Up until the last few weeks I have really been content where ever we were at and never tried to rush anything but it's been so long and now we are so close to home....it just makes us want to be home.  It would be one thing if she was just progressing and getting hours of therapy...but that is not how it is at all. 

Day 75 Fish Oil Study!!

Selah got her fish oil and mixture today:)  But even better than that.....taking with Dr Sears' staff last night encouraged me so much!!!   As I reported Selah has had improvement on her MRI in the gray matter and in the frontal lobe.  I was glad but it hurt that we weren't "seeing" any new responses....   Well we were told that this is exactly the scenario that another patient (who went on to recover completely) had at exactly the 2 month mark in the study!  And he was in a deeper coma than Selah is so we were very encouraged by that and wanted to share it!  It's hard at times to think things will change.  But it was good to hear this!

Today Selah held her head up some, not as much as yesterday but she still did it.  I cut her nails and she yanked her hands away from me.  She hates her nails being cut!  We love any response we get from her. 

Tonight Jon & the boys has gone with some friends to a really cool place called Latitude 30 ~ it's this huge complex that has all kinds of entertainment!  Steve keeps taunting me with pictures of his food:)   Steve and Shad deserve some time to themselves for all they do for our family!!  They ate and are scheduled for bowling in a few minutes.  Shad had counted down the days, then today the hours until they would go:)  Thanks to our friends Bryan and Bill for setting this up and for Lattiude 30 for having us.  I thought it would be too much for the little ones, so we did supper and now baths....I'm hoping they will go night night early:)  Sam is snoring on my bed after a warm bath!

We hope to hear something on Tuesday about the nursing situation.  They are working on doing background screening on some of the new nurses they have hired. 

So thank you so much for all the prayers for our sweet Lala!  I have a little hope once again as we see some new improvements and hear that encouraging word!  Please pray that God will have mercy on her and that He will touch her brain and allow it to heal.  And that He will touch her body and take away the stiffness she has.  Thank you so much!

Day 74 Fis Oil Study

Well today is day 74 but the mixer isn't here so no fish oil for Selah.  The fish oil is mixed with Poly (something) to coat her stomach and help her intestines absorb the fish oil better.  It also protects the plastic in the syringe and in the tubing for her  feeding tube.   It should be here tomorrow.

She held her head up a little yesterday and even more today!  The therapist said she held it up for 2 full minutes!!!!!!   We love that! 

Jon took her outside for quite some time today.  She loves being outside. It relaxes her, I can't wait to get her home so we can be outside.

I stayed with the kids today at the hotel.  I ordered all their home schooling curriculum.  We are staying with the same curriculum their school uses.  They will be working on the weekends and over the summer!  So I guess we are official home schoolers:)  I promised my friends I wouldn't start wearing denim jumpers LOLOL!  When I go to thrift stores, I have an unhealthy pull towards them....I liked them back in the 90's!   In fact I have to really watch myself or I have been known to come home with something I would have worn in 1992 :)

We were doubly blessed tonight with a pork dinner and a meatloaf dinner.....Glad I am wearing pajama pants, I think I will go to sleep early tonight:)

Still waiting on the nursing staff.  Hoping to hear something tomorrow.

Thanks for all your prayers for Selah, they mean so much to us!  I know God hears them all!!!!

Our story

With so many new readers, I've been asked questions about our story....the whole story is within my blog but I thought it would be nice to have the main gist of it all together so you could read it.

Jon and I are both native Floridians!  i was born in north Florida and grew up in Perry.  My great aunt and uncle raised me.  Jon was born and raised in Lakeland Fl.  He had a more 'normal" upbringing.  We met briefly in a class at Southeastern University but really got to know each other when I went to apply for a job at the Talbot House where he was the director!  We eloped in a month:)  That was over 23 years ago so it worked for us!!!!

After we got married, Jon finished his last year of college and I worked at a juvenile probation officer.  Our dream was to move to NYC and work in inner city ministry.  We did just that for a few years.  Our oldest son Steve was born there.  The next year we found out we were having TWINS!  But they died at about 21 weeks.  That was such a heartache to me and I walked through a deep valley for several years.  By God's grace, I recovered from the loss and a few years later we finally got pregnant again....i was on bed rest most of the pregnancy....then Sam was born.  the day after he was born, I was holding him and he opened his eyes....in that moment our lives turned upside down.  Somehow no one had noticed but our child was blind....it was very obvious.  During that time, I committed to trust God no matter what happened.   Fast forward a year and we see a picture of a little blind boy in China, we realize we could offer him a family, 9 months and 6 days later, I'm picking Shad up from a cold Chinese orphanage! 

The years roll by, my husband is the pastor of Grace Church and the chaplain at Zephyrhills Correctional and we are a happy family of 5....until I see a little blind girl's picture.  She looks just like our son Sam and her picture keeps me up all night.  She is only 4 years old and in an Ukraine mental institution....we decide we have to adopt this little girl, Sarah.  One little girl, turns into two as we find out about another little girl there at the institution.  Selah also joined our family....  both have extreme delays and are malnourished.

Our life was perfect!  Five great kids that we adored!!  The girls just fit into our family perfectly.  We had a wonderful summer last year, every day was a celebration.  We enjoyed so many "firsts" for the girls....they were blossoming and changing, learning LOVE and family.

Then we left home August 10, 2012 for Sam's annual eye exam in NY.  At three years old, he had been given some sight through a corneal implant.  He had had great success and we hoped that the surgery might offer some help for our daughter Sarah who also had Peter's Anomaly the same rare eye condition our son had. 

On August 15, my husband were walking Sam and Selah in a jogging stroller along the banks of the Erie Canal.  We have walked that area for years, it is behind the Ronald McDonald House where we stay.  Jon looked away for approximately 4 seconds (per the police report) to check the time on his cell phone, as we were dropping off another family at the airport.  In those 4 seconds, one of the children must have caused the stroller to move, and it rolled into the Canal.   Jon jumped in and fought the current and somehow got to a tree with branches that went into the water and was able to pull the stroller and children up as he was screaming for help.  Thankfully help came and they got the children out.  Both were not breathing, Sam was revived there but Selah was without a heartbeat for 30-45 minutes. 

Selah suffered brain damage and is in the recovery stage.  We don't know how far she will come.  At this point, she is alert, has a normal sleep/wake rhythm and is responsive but in a persisiant vegetative coma.  We started her on in a Fish Oil Study that has shown great promise in reducing inflammation in the brain and allowing for healing.  She recently had a MRI that shows good changes in her white matter and in the frontal lobe of her brain but she has a far way to go. 

She was moved from NY to Jacksonville Fl in December for Rehab and we are now waiting on nursing to be set up for us to go home. 

My life has been a challenging journey but learning to trust God has brought and will bring me through!

Politics

I don't usually write anything political....I'm conservative but I don't I don't get into big political debates.  But I am in fear for my rights as an American citizen at this point. 

I am very concerned about Obama's push for gun control.  He is overstepping his role as president.  He is evoking "executive powers" to  make new laws without going through the legislative branch.  That is a SCARY thing people! 

He surrounds himself with children as he signs executive orders restricting guns, so if you oppose Obama, it would seem that you oppose "protecting" the children.  He doesn't want YOU to have the right to protect your family yet his family is protected by many guns! 

I grew up around guns.  I learned to shoot and like to go target practing.  And I'm actually pretty good!  When I graduated from high school 30 years ago, it was nothing to see trucks in the parking lot with gun racks filled with rifles.  I didn't think anything of it.  Guns were just a part of life.  People went hunting, my family all hunted.  I know many people who collect various types of guns, it's a hobby to them. 

There is just so much hypocrisy in this whole mess....never are violent movies and games addressed.  I grew up knowing healthy teens who hunted and target practiced and had RESPECT for guns.  Now I have to say I know unhealthy teens and young adult men who glory in watching violence on tv and playing crazy video games.  They have not been taught to respect a gun and the damage it can do to a person.  They have a silly mindset of "shoot them up"   And they do that without any respect for life. 

There is hypocrisy in the president sending his kids to a private school where there is already armed security and of course the girls have the Secret Service to protect them also, but then NOT wanting anyone else'  child to have the same protection. 

I am sorry for the tragedy that happened in Newtown.  I am sorry for any loss of life but we must remember that a criminal will break the laws to get what he wants.

The worry I have about our country goes far beyond just this new push for gun control.  Our country has changed.  We are headed into becoming a Socialist nation as fast as we can.  Our rights are being taken away from us on all fronts.

When we were in Ukraine last year we would have very interesting conversations with anyone who spoke English and without fail we would be asked about Obama and "did we know he was a socialist???"   They knew what they were taking about and they could see it from afar!    Some liked Obama but most did not but they would all say the same things to us.  It was very eye opening. 

I'm sad and worried about where our country is headed.   It's not just gun control, it's the abortion issue, the "redefining of marriage" , the attack on Christianity.....  the violence and materialism being glorified throughout Hollywood, the lack of morality, the attack on the family, the attack on the Constitution....our nation is FAR from where it started. 

Day 73 fish Oil Study & I did a trach change....

I DID IT!!!!!!!    I changed Selah's trach!   And I did NOT pass out!!!   Although I did close my eyes as I was pulling it out LOL.....

We have some really nice nurses that I feel comfortable with and one of them got me to sit on the bed and watch last week.  I manged that without getting sick or passing out and I practiced putting in a trach by using her hand with her thumb and forefinger acting as a trach LOL  Today during our team meeting the doctor asked us what did we feel comfortable doing for Selah and what do we not feel comfortable with.  For me, it's only the trach.  Jon has done everything and has done it really good.  So I thought I would try today.  We had one of our favorite nurses, she is a Muslim and so funny:)  She tells me how to be a good Muslim wife~ I wouldn't make a good one:)  Anyhow we laugh alot with her and it made it easy for me to work with her.  She and Jon got ready in case I passed out....she put a chair behind me and Jon was ready to catch me...  but I did fine:)   As I was pulling out the old trach, it felt like I was going to pull out her lungs, so I closed my eyes.....then I realized what I was doing!  And my eyes flew open!  Putting in the new trach was easier. 

Selah did good today but after her bath and trach change, she was on the edge of a storm for about an hour or so.  We took turns holding her and I brought in a rocking chair and we tried that for awhile too.  She managed not to storm but it was close.  Her heart rate would go up to the 130s and then come down....  Jon and I can't help but worry that it is the Ritalin that might have caused that.  We aren't seeing any new or good changes in her.  We're giving the Ritalin until Monday, if she doesn't start having issues, to see if it will help her but if she has storming, we will stop it.  That is the last drug that is used for children to "wake them up" 

I talked to the person in Medicaid who is helping us.  We feel better about our chances to go home soon.  It looks like things are working out and one agency has had a job fair in order to find nurses for Selah.  It does not look like there will be an issue with getting approval for her to have 24/7 nursing....the wait is for nurses to fill in those slots!  Thankfully there is a push to find her the nursing she needs so our family can get home!  But we need nurses...so if you have any contacts, please let me know. 

The problem with our fish oil got sorted out, and it's on the way to us.....

So everything is moving....even me:)  Please pray for Selah....holding her this afternoon made me miss her.  I just can't help but remember how it felt to hold her little body before the accident and now she feels so different and distant to me.  She has gained so much weight!  Someone asked me if she was swollen but she is NOT, she is just a pug:)  She has not had one tummy problem, thankfully!  She is fed Pedisure and it has caused her to gain weight.  Right now for her height, she is fine but she is quite chubby:)  She looks so good and has such good color.  I just want her to respond more.....   She has been lifting her head and shoulders off the bed several times a day.  She was doing it often in NY but they are just seeing her do it now.   So please pray for Selah!!

Thoughts on Adoption

With all that has been in the media lately about Russia's ban on adoption, I just have to share my feelings.  Obviously this is just a purely political move that shows us Putin's heart (as if we thought he was a kind hearted man)  It seems to go beyond a political statement.  I'm not a big one on blaming things on the devil but this ban seems almost demonic in nature. 

It's hard to explain adoption and the love that it brings.  I remember way back in the middle 90's when Steve was a baby, I read an article in Charisma magazine about "dying rooms" in China.  Rooms where special needs children were placed to die!  I cried reading that article and had a "knowing" in my heart that one day we would adopt from China.  I can remember sitting on our bedroom floor, bawling and holding Steve.  I prayed that God would prepare the way and protect the child He had for us!  It was another 11 years before that adoption took place!  I soon forgot all about that prayer...but God in Heaven remembered....

Growing up I was raised by my great aunt and uncle.  It wasn't the worst upbringing but it certainly wasn't an Ozzie/Harriet type of life either.  BUT it sure beat the heck out of the  alternative, being raised by either of my "biological parents"!   I'm sure the love of my great aunt to me, probably opened my eyes to loving a child that wasn't my "biological" child.  

 

 

look at that sad baby!!

 

 

When I saw Shad's picture, I was drawn to him immediately!  I can't explain it....  same way with Sarah and Selah.....  they become YOUR child!  The closest thing to compare it to is seeing your child's sonogram photos....You examine every little part of them that you can see...I remember being memorized by Sarah's hands!  Don't ask me why but I loved her little hands in every picture I saw of her! 

I got this picture of Sarah while we were waiting and I just memorized it

And this one last Valentine's day to reassure me Sarah was ok.

 

 

This is one of the first pictures of Selah taken a few years ago

And here is one taken last year for us right before we went to Ukraine

 

 

So when you see these pictures even before you meet the child, you love them.  Then after you meet them....they are your child....I can not imagine having gone to court, and passing court and then not being allowed to bring the child home.  Jon & I talked about that and he said he was sure I'd be in a Ukrainian jail still if that had happened to us!  

 

 

I can't explain the love that you have but it is real and you would die for your child.  Adoption is just a word.  My three adopted children mean the same to me as my biological children.  It's hard for me to fathom they actually were someone else's biological child....  With Shad being abandoned we have no birth parent info.  On the girls we have a lot of info ....  with all three sets of parents, I have no desire to meet them, no desire to thank them....their actions condemned my three children to a life in an orphanage....  I'm a mom, of a special needs biological child and I wouldn't have left his side for one minute, much less gave him away because of his disability.  Shad's vision impairment happened because of an accident.  Our doctors can tell he was not born with his eye like it is.  It looks as if he fell onto something and it went into his eye.  there is scar tissue all the way up into the optic nerve.  It was a very bad accident....then his family left him on a street.  He was no longer "perfect"  They walked away from him, after an accident....   That bothers me so much....  that would be like us walking away from Selah after her accident....I can not imagine.  She is even dearer to us now than she was before, if that could be possible! 

 

 

So I think of all the abandoned children in Russia, especially the special needs ones...does Putin really think that his Russian people are going to adopt those children??  Read this blog of a blind Russian girl...     http://world.time.com/2013/01/14/the-blind-girl-vs-putin-a-plea-for-russias-handicapped-orphans/     she is amazing  and she tells Putin at the end to lead the change and adopt a few handicapped kids.....  You go girl!!!!

 

 

So many countries with their backgrounds not rooted and grounded in Christianity have such a jaded attitude towards adoption, especially special needs adoption.  Look at China, Russia, all the former Soviet Union countries....they don't respect LIFE and it shows.  In America we help our weakest, things may not be perfect but I can promise you they are much better than any other country on the face of this earth!  If you doubt me, then take me to the nearest mental institution that is full of malnourished sick bed ridden handicapped children and I might just believe you.....but you won't find that in America....and if you did, people would go to prison for it!!! 

 

I pray that this awful ban is lifted and adoption are allowed to proceed....Putin wants to say that 19 children of the 100,000 plus that have been adopted by Americans over the years have died in their parents care.  I wonder how many children are dying MONTHLY in orphanages in Russia???  If I had to guess, I'd say probably more than 19!  Of course any death that could be prevented is awful but the truth of the matter is, adoptive parents pass such scrutiny and background checks, as well as education classes, that they are well prepared and really want to be parents....Adoption is not an accident!  You don't just "happen to adopt"  it is HARD!  And I think it should be, it shows that a family has perseverance and really want the child or children, to the point their whole life is turned upside down. 

 

People adopt for various personal reasons....some say they do not like the idea of "rescuing" their child but for us that was a part of our adoption.  We certainly rescued them and gave them the love of a family.  It thrills me to do things for my kids that I know they never had before, even if it is ice cream or whatever...  I love taking care of them and knowing they'll never be hungry again!  We think of the three of them as JEWELS that were hidden away.....not appreciated, then they were taken out of the dark, cleaned off and then they could shine! 

 

I keep reading different articles and hearing things on tv.  I hope this is just Putin acting big and bad and I hope he will back down after he thinks his point is made.  I don't know what is going to happen.  I had always said that I never ever wanted to adopt from Eastern Europe, including Russia, because of the uncertainty of the adoptions and the changes that happen over night...  Of course then we adopted from Ukraine and did go through some of the ups and downs that I was afraid of!  But it was worth it to get our girls!!!  

Day 72 Fish Oil Study and Frustration

Selah had a really good day today.  She did therapy out of her room and was relaxed.  Her doctor wanted to go up on the Bacifin (it relaxes her muslces) and she did by .5 and it made a big difference in Selah's arms and right leg. She is sleeping so nicely tonight.  But she had a really busy day and she was alert all day so we aren't worried that the med is making her sleepy.

Tomorrow the dose of Ritalin is being doubled. We have not really seen any signs of it working but it had to be given at a low dose to start with to make sure that she would not have an adverse reaction. If we see no change in a few days we will take her off of it.


The Frustration is we are sitting here in Jax, Selah in a hospital where she could get sick, my kids by themselves most of the day as we are with Selah, Jon not working, so many ramifications from finances to schooling....WAITING on home nursing care!!!  It would do no good for Jon to go home and go back to work as we can't be here as a family without him nor could they all be there at home as a family without me....and we don't "roll like that"   With the little ones, and all their needs, it takes two adults to split the time.  If he was gone, I'd have very little time with Selah because I'd have to do eye drops and everything by myself and I can't be at two places at the same time....

Basically our issue is where we live...supposedly our area is hard to get nurses for.  No agency has agreed to take our case.  We are expecting to get 24/7 nursing and that would require about 6 or 7 nurses to staff her.  I have called Tallahassee as she is now under Medicaid.  When I worked for the state, I worked with agencies that contracted with the state and they were REQUIRED to provide whatever services they had contracted OR they would lose their contract the next year.   I have had some very helpful folks working with me in the Medicaid office but it seems like we are not getting anywhere.....  if you are in any position to help me, please contact me. theclanton5@aol.com   This is ridiculous and all of our lives are on hold at this point.  I know that Selah needs to come home and believe she will do better once she is home!  At this point, I may have to contact Tallahassee once again.

If you live in the central Florida area and are licenced as a nurse and interested in working for our family through a nursing agency please contact   at click on their http://www.psahealthcare.com/job_search.html   career section and apply.  Please note I would not feel comfortable with a male nurse in our home....sorry I know "beggers can't be choosers" but that would make me uncomfortable.
We are almost out of our mixture that goes with the fish oil, it basically coats the stomach and intestines and allows for the fish oil to be absorbed better.  It also protects the plastic syringe and tubing from the fish oil.  Well Dr Sears' office needs the doctor here to order it, the doctor here won't order it since she didn't order it to begin with....I can't go back to the original doctor as she has no jurisdiction over her medical care now.....more frustration.....

And my blog is not allowing pictures to post.....things like that annoy me!

Good thing I wrote a spiritual post earlier....LOL  this is my real life and I'm not feeling it......