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. 

Day 96 Fish OIl Study ~ First Doctor's appointment

Well we had a busy day today!   We started with Sam, Sarah and Selah having their Physical Therapy and Speech Evaluations this morning at home.  They had all had evaluations in July with this therapy group but since it was more than 6 months we had to redo them.  Sam has learned  new skills, he can walk up stairs and climb into his car seat:)  Sarah's legs/feet are in a much better position than they were before.  Her feet tended to point inward and she'd step on her feet if we tried to walk her.  She does that less now.  She got to walk in the gait trainer and had a good time.  She also responded well to the speech therapist and would indicate by clapping her hands that she wanted to continue playing! 

Miss Selah did really good!  She was evaluated from head to toe by the physical therapist.  The PT was able to get full range of motion in her arms/elbows/hands and wrists.  One shoulder was slightly tighter than the other.  We woke Selah up and without even the benefit of being up and letting gravity help her knees to bend, the PT was easily able to bend her knees and get 40% range of motion.  She also was able to get some range of motion in her ankles.  If she had had the evaluation in the afternoon, we are sure her ROM would have been higher but that is higher than anyone has gotten since NY (I"m not even sure that they got that kind of ROM in NY.  It will be interesting to read the report as I was in and out with all the little ones. 

We had ordered a wheelchair but the company never sent it so we cancelled the order and will do one with the therapist's help so we can get exactly the one she needs.  We are using a loaner one and it is not very comfy for her nor does it give her the right kind of head control.

Then it was off for another ambulance ride.  Her nurse and I both went.  We had the nicest EMTs again.  We seem to get lucky with really sweet folks.  When we got to the gastro's office we were told it would be over an hour wait!  She was on a stretcher, then the EMTs weren't allowed to stay that long so we were sitting in a hall with her because we were afraid to go in the waiting room, afraid she'd get sick.  The nurse and I both were getting a little ticked off, usually according to the nurse and the EMTs most doctors will take into account the child's situation and the the fact they are there on an ambulance...  Finally we went in and I have to say we both liked the doctor.  He had some great ideas and spent some time with us.  We were thinking they were going to make us wait for a 5 minute appointment but it wasn't like that. 

Selah has gained 13 pounds since the accident.  That is alot of weight in less than 6 months.  While we are glad she has had NO issues with her feeding....but she can't continue to gain at that pace!  The doctor was able to give us some samples of a formula that is more plant based with veggies being a big part of it.  He also is one of the few doctors who are all for the family blending their own food and giving it to the child.  She'd have to have a much bigger gtube button as she is on the smallest one and that would involve a small surgery but it is probably something we'll do in the next few months.  So we liked his innovative ideas alot and it was worth the wait.  Next time tho' they will schedule us first thing or right after lunch so there won't be any waiting.

Over the years we've been so blessed to have special folks who worked with Sam.  He had the best ever speech teacher that we all loved.  I prayed that Selah would be surrounded by folks who just adored her like that and I have to say our 4 regular nurses do, especially the one who works most day shifts.  She is so into Selah and wanting to meet her needs and help her to reach her full potential.  It means so very much to us!  You have no idea what a blessing this lady is!  I thank God for her and for all of them!!

So a long day for all of us...

Then I came home and cooked a Mexican pot pie:)  It was so good and easy!

a pound of meat ( I used low fat turkey- 1 gram of fat)
a can of Ro-tel tomatoes with chiles
package of Taco seasoning

brown the meat and add the seasoning and tomatoes, cook well

Line a casserole dish with the big pastry sheets (i used the pepperidge farms sheets or you can use a pie shell)
Put the cooked mixture on the sheet, sprinkle a handful of Mexican cheese on it and cover with the other pastry sheet ( or 2nd pie shell)
Cook on 400 degrees for 20-30 minutes or until light brown on top...

serve with Yellow rice and salsa and corn

You can put corn or black beans in the mix but some of my kids wouldn't eat that....

I served it with angel food cake ( from Publix lol) and fresh strawberries and felt like Martha Stewart!!!!

Very productive day!  Even for Steve:)

 

Steve  got his school books yesterday and got started on his schoolwork.  He will be working weekends and through the summer.  This is not even all of his books, some were left out and we are waiting for them.  Shad's books came into their school and we'll pick them up on Monday.