Day 102 Fish Oil Study ~ Happy Valentine's Day

It's 10:30 pm and I'm sitting here waiting for the ambulance to deliver Selah home:)   What a busy day we left the hospital about 6ish "right" before the ambulance was leaving....well.....  it didn't get there until 10 pm!  She is doing great and finally had a diagnosis.  of some sort of something in her poop.  And they do think that she had a cut in her stomach either from all the moving of the gtube or from all the heaving when she threw up.  Anyhow she has responded well and they feel everything is under control.  Whatever she was diagnosed with could have been in her system for a long time.  It was nothing I'd ever heard of before and can't remember what it was.  She will be on antibiotics for a couple of weeks and she has been changed from Xantac to Prevacite.

Finally got Steve and Shad to the dentist!  Steve had to have major work done on his braces and now has bands.  Shad had to have a tooth pulled!  Thankfully it was a baby tooth!

I have lots of thoughts about Valentine's Day...but I'm almost too tired to share them LOL

I'm not a roses and card type of girl.  To me that is such a waste...buy me a few plants for my garden and take me out to eat and I'm happy.  I certainly don't need jewelry or diamonds....that just doesn't appeal to me!  I'd be too worried about losing it or having a kid grab it and break it!  I'd slap someone if they bought me a fur coat....  I guess I'm pretty simple.  Today my husband got up early worked from 8 am to 10 pm to make up the hours he'd used when he stayed in the hospital with Selah Monday and Tues to give me a break....  To me that speaks LOVE.....  No we didn't go out to eat I did have Chinese pick up waiting for him when he got home.  We didnt' get each other cards we haven't had the time to even go to the store these past week.  We'll go out sometime this weekend to eat (maybe-and probably with the kids)  We're not going to have a "romantic night" no we have 2 nurses here and a daughter just being released from the hospital)  But this is real LOVE....not the kind you see in Hollywood or really even the kind you think about as a young person but it is LOVE.

Love is not picture perfect, it is real life, where the "rubber meets the road"  It is commitment when you might feel like running away 

I've learned what LOVE is....it took me a few years but I'm thankful I have a real LOVE in my life and I wish the same for you.  See I watch my husband giving eye drops to Sam or changing Sarah or staying up all night in the ER with Selah and I know that is a committed LOVE.  He ain't with me because of  just from what he gets out of the relationship.  And I know he'll be there for me if I need him.   I thank God for that kind of love in my life. 

I'm not a "hottie" but every now and then when I'm alone (LOL) in public I get hit on....I'm not alone much in public but I've laughed right in guys' faces when they hit on me.  Once I was waiting for our pizza order at a Hungry Howie's a guy asked me "Are you looking for a bad boy?"  After I finished laughing  in his face I told him "no I have THREE of them waiting for me at home"  I also told him that he needed to look at the left hand to see if a woman had a ring on before he asked dumb questions like that at a Hungry Howie's LOL!  I also told him he needed to get right with God and he told me he went to church I said "probably not often enough!"   

My point in telling you this story(besides a good laugh)  is to just let you know that if you are single, don't settle for a cheap pick up line or for someone who just has a relationship with you to meet their needs.  find a good man or woman who has real love to share freely with you with NO games involved!  I've dated game players and I don't know about you but that got old quick!  If you are in a relationship that you can not trust the person or his/her motives.....RUN away as fast you can!    Having lived to be in my late 40's I've learned alot and seen so many people have heartaches that could have been avoided.  I could have avoided some heart aches in my life but I was stupid....

So Happy Valentine's Day to y'all!  I hope and pray that you have or will have a true love who will be with you in thick and thin!  Don't settle for less!

Well since I started this night's blog, Selah arrived very upset but I held her and cuddled with her for awhile and she calmed down.  Sometimes holding her completely is too much for her so I knelt by the bed and cuddled her head and talked to her.  She calmed down immediately!  Her heart rate dropped to the 100's )now in the 80-90's since she is asleep  and her blood pressure went from crazy high 163/89 to a normal 115/72.   She was given her meds during the time I was holding her but they don't work that fast:) 

So on this nice rainy night I'm thankful that all the Clantons (ans a nurse) are under the same roof tonight!

Day 101 Fish Oil Study ~cute pictures

Well today is officially 101 days since Selah started the Fish Oil Study, I took it to her today since she is back on her her feeds.  I have to say St Joe's have won my heart this time around.  They were amazing about the fish oil study and went out of there way to make sure it was put in the right place ( the fish oil has to be in the freezer)  What a difference from the rehab hospital, who could have cared less about the study!  This time in St Joe's Selah was on the regular floor instead of the new wing and the care has been wonderful.  If one of us is not there, they call us about everything, I really like that!

She had a tiny fever today but if everything goes ok she will be home tomorrow!  She looks great and was relaxed.  Still no answer about what was the problem but I think it goes back to the changing of the gtube...  

 

Here is our girl, she was busy watching the light/water machine they'd brought it.  It is a sensory toy that has a column of water with different light colors on the bottom, it changes colors to classical music, this one happened to have mirrors and it seemed like there were 3 of them.  I LOVE it!  So did Sam and Sarah

 

 

 

Sarah immediately reached out for it when I put her near it

 

 

I LOVE this picture of Sam and the light

 

They both were touching it

 

Sam basically stood there for 2 hours and held it!  He was enthralled....Look at Shad, he and Sam are both 9 yrs old now...he is a head taller than Sam!

 

 

So if any one has a spare one of these send it my way!  My kids love it!!!  I had looked at one in a magazine and it was over $1000...if  Extreme Home Make Over ever comes to my door, they need to have one of these with them!!

 

 

Here are some pictures from yesterday.  The kids at the dentist office watching a movie, I just love this picture of Sarah:)  Sam had Steve's Ipod:)  he is so cool

 

 

Look at my big girl sitting up with a ribbon in her hair!  Big difference from that tiny little weak girl I met 9 months ago!

 

 

So pray for Lala that she is completely well and can come home.  We miss her!  And please continue praying for her healing.  I pray throughout the day that God will heal her mind and bring her back to us.  You have no idea how many times throughout the day I pray that....it's always on my mind no matter what I'm doing.  

 

I want to give a big thank you to Andrea who mailed me her sweet daughter's bath seat!  Her little girl passed away recently but she wanted to bless another family.  I can't wait to get Selah home and give her a bath in it.  I may post a picture:)  With a towel cover up so you can see how much easier it will make things for us!  What a blessing that was to us!

 

 

 

 

 

 

 

Update on Selah ~ thoughts on "The Boy From Baby House #10"

Selah has improved.  She is holding down her meds and they will be starting her feeds tonight.  This morning Sarah had a dental appointment right near St Joe's.  Her appointment went good and she has no cavities, the pain she seems to be experiencing is her 6 year old molars coming in right on schedule:)   The dentist was amazed at her teeth as they are in much better shape than most children adopted from overseas. 

We then went and saw Selah and picked Jon up.  He needed to go into work today.  She was calm, asleep and had perfect stats!  It's hard for me that one of us can't be there most of the time but she is in the regular pod and her room is just a few feet away from the nurses' station.  The plan is for her to be given the feeds slowly to make sure everything is ok.  She did not test positive for anything at all and none of us are sick.  The doctor I spoke to earlier feels she did have a small tear in her stomach, but she felt it was from all the gagging she did, not that the tear caused all the throwing up....  I don't know but it seems like too big of a coincidence that it happened when her gtube was messed with....it's so frustrating!

The doctors and nurses have called several times today to ask questions and i liked that!  She had a small storming episode and I think it's because she hasn't had her fish oil since Saturday. 

She is expected to come home in the next few days.  We are spread thin at this point as Jon really needs to be at work and I'm not comfortable leaving the kids for hours at a time.  We are going to go up there every day as much as possible.  Today's visit  went good, there was a volunteer singing in the lobby and that kept Sam and Sarah 100% occupied!  Steve and Shad have dentist appointments on Thursday, poor Steve hasn't had his braces adjusted since early August.  I'm sure he will need to wear them longer. 

Last night I reread the book "The Boy From Baby House # 10"  It is a book about a boy with CP who is left in a baby house from hell in Moscow.  Things get worse as he is transferred at 4 years of age to the "internat" what many Eastern Europe countries call "adult mental institutions"   He and some people who miraculously came into his life tell his story.  It is shocking.  I read this book a few years ago never knowing I'd adopt two daughters from an "internat"  Ukraine's government is set up almost similar to Russia's as it was of course a part of the USSR for many decades.  It still runs that way.  The book just grabs me, if Sarah and Selah could talk, some of these stories and experiences would certainly be theirs also. 

The only thing that really bothered me in the book is how many times it is expressed that this child should not have gone there because he had "normal" mental abilities.  Of course they are not saying any child should be there but...they keep stressing how different he was compared to the others and that bothers me!  I don't think any child or adult should be in those horrible situations!  I know the author ddn't mean that either but it just came across a little bit like that. 

But all in all, I encourage you to read this.  It's real, believe me it is real.  I've stayed quiet publicly about many of the things I saw when we were there visiting the girls.  It was rough.  But I do take into account the poorness of the community. I never got the impression that anyone was being mean, just not involved or interested and "this was how things were done"   Believe me I got angry, very angry at times....  Things have changed, all the little ones like Sarah and Selah have been moved to orphanages instead of living in the same facility as adults.  Are the orphanages any better?  I don't know....it is a hard situation....  the best thing is to adopt these kids out of the situation!!!!

Look at little Sasha, adopted one year ago...see the difference???  This is a real child, a year ago he was in the "internat" dying....

 

he is included in this video of a real orphange  http://www.youtube.com/watch?v=Cs42-5HnQRQ

watch it if you dare to be challenged.

 

This all is real folks, you can't shut your eyes to it. 

 

Listen on the day we stand before God, I believe He will ask us what we did for "the least of them"   He won't say "Well that's ok, that was the Clantons's calling...."   He won't tell you that James 1:27 doesn't apply to you also as a Christian!    I've actually had people tell me that orphans were "our calling" "our ministry"...ummm the last time I checked in the many scriptures that talk about orphan care in the Bible not one time did it say "this is for the Clantons only"  Nope....not seeing that!

 

 

 

 

I'm not saying everyone has to adopt, some children are unadoptable for legal reasons but we can be involved in many many ways.  But the thing is we should be involved!  You can adopt, you can give to other families that are adopting, you can give to ministries that help orphans I know of one I recommend http://www.life2orphans.org/cms/ their website is a bit outdated but I know what they are doing first hand and it is wonderful.   The thing is, do as much as you can!!!!

 

Should God heal Selah, we would adopt again.  How could we not?  We had planned to possibly start the process to adopt three children we met while in Ukraine.  Then the accident happened and of course we can not do that now.  One of the children we felt drawn to, just got adopted today!  We are so thankful that he has a family!!!  Now there are two others who need famileis!!!

 

 

this is Sally....I loved her from the second I saw her tied to her bed around the waist.  She is 8 yrs old an the size of a 2 yr old

this is Silas  he loved Jon and went right to him if he was brought out.  this picture doesn't do him justice.  he was such a sweet boy.

 

So these two children who touched our hearts are still waiting for families...we may never be able to go back for them.  Will you pray that a family will come forward?  As much as I'd love for them to be in our family, I know at this time it's not possible and I'd love to see them adopted.

 

Thank you for your prayers for Selah also!

 

 

 

 

 

 

 

 

Selah update and Happy Birthday Sam!

Selah is out of ICU.  Thanks for the comments.  She was xrayed a few times and she did have lots of poop but no obstruction.  There seems to be no cuts or anything to cause blood in her stomach from the xray.  Several of you made the same comment I did about the brown gritty looking puke....the doctor told us that after two xrays everything looked fine and there are times when someone throws up so much they get that kind of gunk coming out.  She is in a regular room and as soon as she got in there her heart rate went from the 150s to the 120s and now they've given her all her meds too so hopefully it will all come down to normal.    I talked to the gastro and begged her to put in her normal gtube and she did since we had a new one there.  Jon said Selah didn't grimace when it was changed out so that relieved me some.  She will let you know if something hurts or if she doesn't like something.  They are probably going to try and start her feeds tonight and we'll see how things go.

Tomorrow Sarah has an emergency dental appointment right by St Joe's and I'll pick up Jon after the appointment and he may go to work tomorrow.  Who knows Selah might come home.

 yes we got him a cake....NO he does not eat cake!  IN fact Sam does not eat anything sweet at all except for oranges, grapes and bananas!   acts like cake or ice cream is poison...but we helped him out!

 Sam loves to get things out of bags!

 He's going for it!!!

 Pure JOY!

He got it:)

Today was Sam's 9th birthday...hard to believe that little guy that has so changed my life is 9 years old..... I adore him with all of my heart and today I was so very very thankful to be able to celebrate his 9th birthday!  Thank God for preserving his life yet again for us!  We got pizza for lunch and he was very happy.

I read an article on line today about a woman who recently found out that her 33 week old fetus had some sort of abnormality.  She and her husband decided to abort the child.  Because of the abortion, something happened and the woman died last week.  There was an obituary for her and the child.   The posts following the article were interesting.  Evidently this woman had a gift registry for the child, a little girl and a book that we have "I"ll love you forever" had already been purchased by someone for this child.  I couldn't help but think, I guess the "I'll love you forever " part was only good IF the child was perfect....  OH my God.....it just makes me sick to think of a 33 week old fetus being killed!  Sam was born at 32 weeks!!!!!   Our world is crazy, this woman was a "person of faith" according to the obit....   I can't help but wonder, who counseled this woman....  who had she let speak into her life?  We as Christians should have a high standard of respect for life!  We should share that standard AND when and if the time ever comes, we should walk out that standard in our own lives!

I think of a friend, another pastor's wife, a friend....she and her husband found out their greatly wanted, cherished little girl had very little of her brain formed....  They stood strong and with great love and respect, carried little Molly to term, loving her every second of her life and holding her as she took her last breath....  She surprised everyone and lived a few hours, every minute of that life was lived surrounded by love.  Was it hard for my friends?  YES but when they are reunited with their little Molly, what a day of pure rejoicing that will be. I don't know how heaven is going to be and what age we all will be...but I know the bible says in 1 Corinthians 13 that "we shall know as we are also known"  which gives the idea that we will know people when we get to heaven.  But when they are reunited with Molly, there will be no regrets...what a testimony.


So that article made me start thinking.....about Sam and how his little life led us to adopt Shad, Sarah and Selah.  Sam changed my life completely!  Some years before I had Sam, I was so depressed and driving on my way to work and not in a good place spiritually at all...but yet my heart cried out to God...not for a child but just for HELP!  And I heard God's voice!  I don't mean I specifically heard an audible voice...but God spoke to my heart - maybe it was audible  I was alone in the car....and He said "You will have a son named Samuel and he will change your life"  Well I was NOT looking to have a child but I kept that in my heart so a few years later when I got pregnant, I knew it would be my Samuel....and it was!  And boy did he change my life:)

Would I have chosen for my son to be blind and have mental delays??  Of course NOT, I wanted my life easy, I wanted his life easy....but...it happened....  I, of course believe that things just happen and God is there to walk us through those things if we chose to let Him.  I don't think He causes bad things to happen nor do I think the devil is working hard against us (boy if I believe that...I'd think I was #1 on the devil's hit list!!)   I think we live in a fallen world and things happen.  I also do not think God is a heavenly Genie that will make life suddenly become what we want it to be....  But I do know the bible says God will cause ALL things to work for our good.    

So as I'm "preaching" to you tonight...I'm also preaching to myself.  I'm at the point with Selah's situation that I am overwhelmed and my heart is so heavy.  I do not know how we are going to live the rest of our lives like this.  I don't want this for her or for me!  But I've been at this point before in my life.  And that situation did not change BUT I changed.

I can remember just crying so many times in those first few months thinking "My God how will we make it????" "How will we raise a blind child?"  At that point we didn't even know about his mental delays and I was overwhelmed.  I was so scared BUT just like now, I loved him so much.  I didn't know HOW we were going to do it and the future looked so bleak and dark.....  But we put one foot in front of the other, and we loved him with everything within us and we made it.

Now there are still times when the responsibility of raising a "forever child" floods over me...now times THREE (even before the accident) but there is a peace.  Of course the accident changed things so much and took everything up about a million notches!!

So I find myself in that same place  as I was when Sam was little.  Today I had to go inside the bank.  I had gone there so many times while we were in the process of adopting and had taken the girls in to meet the ladies who had helped me so many times...  This was the first time I had been back in since the accident.  Everyone came and spoke to me and I held the tears in till I was going out the door.  An older man was coming in and he probably wondered why I came out of the bank crying.... but I thought my heart would just break into.  I keep thinking back to this time of year... we found out about Selah on February 13th, just two days away from a year ago....  We were anxiously awaiting the travel date and our hearts were filled with anticipation .  It was the exact same kind of weather as it is now... everything brings me back to that time and how special it was.  I could not believe I was going to be the mom of two little girls!  After all these years with just boys....now those memories just break my heart into hundreds of pieces.

So I don't know how we are going to walk out the rest of our lives or even the next few months.  It feels the same as when we had Sam.  But we love Selah and are just as committed to her as we were to Sam.  We were scared but we were going to do whatever we had to do to take care of him.  We feel the same about Selah... But I don't know how we are going to do it, just like I didn't know how we were going to do it with Sam but we did.   Things are harder, life is much more complicated but I have learned to trust God in difficult times much more than I knew then.

So back to Sam, the little tiny boy who changed my life forever....I thank God for him!  I love my funny little one of a kind boy so much.  I feel so blessed to have him as my son!  His birth nine years ago turned our world upside down and right side up....

This picture is of us on Easter '04, Sam was about 2 months old, probably not even to his due date yet and Steve was 8.5 yrs old.  (and that is still one of my favorite dresses LOL)

So we ask for prayer for Selah.  Prayer that she will recover quickly from whatever is going on (we still have no answers)   Prayer that God will be gracious and merciful and do a healing to bring her back to where she was cognitively.  Prayer that God will give us the strength and the fortitude to do all we need to take care of all of our children. I think we all need some fortitude in our lives to do the right things.... I also ask for prayer for the Wiley family as our friend Ray is laid to rest tomorrow.....

Thank you for all your prayers and sweet comments, they really do mean so much to me!

Selah update

Selah is in the ICU.  She is stable now.  they did xrays and she did not aspirate into her lungs which is a miracle with all the throwing up she did!    Still no answer to what caused all the throwing up.  They ran a bunch of tests and we ae still waiting to hear what they think is going on.

She is on IVs and has had a wet diaper so that is good.  Jon said she slept with one eye opened last night LOL  THAT is Selah!  She did that whenever she was in a new circumstance:)  She did it the first night with us.  To me that shows the spark of Selah:)

Her oxygen level is good but her heart rate is still high.  She has not had all her meds which is bothering me.  Jon is with her and he is asking for the doctor now to get that all figured out.

On top of everything last night some guy comes up to our fence and started yelling. He seemed to be asking how far to town.  We have a BIG dog so the guy wouldn't come in the fence We live out in the country.  I have no idea what was going on with him but I called the cops (and several neighbors- they all like to target practice around here!!)  .  And I got out my trusty pistol!  Made me feel alot better.  I'll tell you a secret I'm an absolute fraidy cat at night if I'm by myself!  I think it's because I'm such a sound sleeper and I have this fear of waking up with someone in the house.  I'm so brave when I'm up  but not at night.  So this is the first time I've been the only adult in my house at night. It helps that Steve is bigger than me LOL  This was one night I let them stay up and play video games LOL 

I'm so glad for my husband going over with her.  I feel at the end of myself and just didn't think I could handle being at the hospital with her without someone going to jail....   I hate to say it but I knew that it would be like this....a bunch of different doctors saying different things. not continuity of care...so very different than Strongs.  I'm a Southerner but I can tell you that health care in Florida is not the same kind of health care you will get up north (for the most part)   I'm not saying there are not bad situations other places but Florida is not a place you want to be sick in.  We learned that with Sam.  Now we have doctors we trust here but once you go to the hospital, who knows what will happen.  We saw such difference in NY and that's why we made the sacrifice to go up to NY for all of Sam's follow up care for his eyes, there was such a difference over all.  Not just is our doctor amazing but the whole team approach was so good and reassuring.  Just talking to my husband on the phone made me angry that they hadn't yet addressed her high heart rate issue.  The nurse said that her meds can't be given through the gtube with her being sick....DUH!  But I said they needed to call pharmacy and get the same type of meds (different names) that can be given in the IV....not rocket science......  She said the doctor didn't want to change the meds she has been given.....I have a call into him right now.   She was on meds after the accident (before the gtube) for these issues and I know that she can be given them by IV.  So annoying.....  Health care needs to be about the patient and meeting the patent's needs and dealing with the underlying issues.  I'm worried that Selah will start storming like she did last night. 

Please keep Selah in your prayers.  She has been so stable, I really feel this all has to do with the whole gtube issue from last week.  She may have a little bug none of us are sick, she hasn't been around anyone other than we went to the doctor's office but we stayed in a hallway with her and she stayed on her gurney or wheelchair.  They didn't even move her onto their gurney in the exam room.  I don't even think a child passed by her and certainly no one touched or.  So since she has had little exposure to anyone, I think it comes back to the gtube......which makes me upset that she had to endure anything else! 

Please pray for Selah she is very sick!

Selah is very sick ~ had to call the ambulance. She couldn't keep any of her meds down and then had dark gritty stuff coming out of her mouth maybe her trach too...her oxygen stats are down and her heart rate is high. Jon went with her to St Joe's in Tampa Please pray!!! As they left they asked about a DNR order!!!! scared the crap out of me!

Please pray for her, I think it is either a bug or there is an issue with the gtube.  When it was replaced with the other tubing, the doctor put it in deep.  When we saw gastro on Friday that doctor pulled some of it out.  Every doctor it seems tries to cut down the last one and say how that one did someonthing wrong...who knows.   Since then we've had issues with a bit of a spit up and today it has progressively gotten worse. 
I'm scared and angry that someone messed up something in her gtube.....

The EMTs were ones who had come on time for Sam and on the way out of town, they picked up a guy from our church who is an EMT.  That was reassuring!!!

Day 97 Fish Oil Study

Selah had a good day again.  Starting last night, she has seemed more active.  "She is moving her head around more and seeming to pay attention more.  Our Sat/Sun nurse hadn't seen her since last weekend and he immediately commented on the change!  YEAH!  I love to hear things like that!    At the same time she seems a bit more agitated.  But that is not a bad thing in reading over coma recovery.  Her heart rate has just stayed up a little higher than normal. 

He suggested getting her a mobile (like you put over a crib) I went and got one but it won't fit the railing on the hospital bed.  I also got a "princess" chair for her that gives her back support but makes her hold her head up more.  I'll take pictures tomorrow. 

I went for a massage today and to the library (my favorite place in the world!)  I love libraries.  For me a Nook or a Kindle will NEVER be the same as a book.  I have no desire for any of those new fangled things LOL  Give me a good book and leave me alone and I"m happy!

So a quick update tonight, more tomorrow and hopefully some more pictures!

Please keep praying for Selah, we feel like we are seeing glimpses of SELAH again.  That was gone during the time we were at the rehab.  She went back inside herself but now she is home, there are so many little changes.  She has remained flexible although tonight she is tighter and seems mad but it is in her arms which have had full range of motion so I'm not too worried, I think she is just upset some. 

The lady who did my massage is coming next week to do one for Selah if it is ok with the doctor.  I think that will be good for her.