Thursday, January 24, 2013

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

Wednesday, January 23, 2013

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.....

Tuesday, January 22, 2013

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.
 
 
 
 

Monday, January 21, 2013

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