Therapy

Our Pt decided to try Sarah on a regular walker...

 

 

she worked hard

 

 

 

 

she was very determined  See how she crosses her feet over each other?  That is what hangs her up from walking good.  No one knows why she does it or how to explain to her NOT to do it.  Sarah's receptive language skills (what she understands ) is probably about a 9 month old level. 

 

 

 

Go Sarah Go!

 

 

 

For some reason this picture just grabs my heart....

 

So the little ones had PT this morning and all did good.  Sarah really enjoys the new walker and looks so cute in it!!!

 

Selah is doing good, haven't seen the independent movement like we did yesterday.  Her PT thought Selah smiled at her! 

 

Late yesterday I finally spoke to the doctor who is over the HBOT center and he'd like to see Selah off the trach if possible before she starts HBOT.  So this morning I hunted down all kinds of leads and may have found someone at our local hospital that could work with her!  She was out today but should be in tomorrow to talk to us about it. 

 

I got tons of errands done today and am feeling quite productive....I had a long list and went right down it:)   This is unusual for me anymore!  Before the past year I was the energizer bunny but now I feel I've accomplished something if I get a shower and dry my hair.....  I don't like feeling like that but that is how I've felt, just absolutely overwhelmed.  Hopefully, with God's help, I am overcoming that heaviness and being able to get back to the REAL me!

 

Thank you for all your prayers for us!  We appreciate each and every one!

 

 

ps...I feel a blog coming on....I'm very concerned about the direction this country is hurling itself

 

 

Monday Madness

 

 

Starting this Monday and every Monday until this little girl comes home, I'm going to feature her!  This is Patricia who we met and fell in love with at the girls' institution.  We called her "Sally" in our minds.  The first time I saw her, I anxiously asked about her adoption status...was she available for international adoption?  We were registered for THREE kids (just in case) and I'd love to have added her to our family.  At the time there was some confusion about her status and things weren't clear until after we'd gone to court.  By that time, we couldn't start all over again.  We had hoped to go back for her but now that would be impossible.  A sweet family has stepped up for her and we are so very thankful!  This family may be going within the next two months and they really really need help in raising their support.  You can give to her grant at  http://gracehavenhome.com/?p=639  just go up to the GIVE section, click on there and give....in the section that asks what the gift is for, just write in Patricia.  I know I present many needs in my blogs BUT it gives YOU the opportunity to be involved with actually helping REAL orphans get REAL families!   If you can give, even if it's just a few dollars it will help her!  I'd love if you'd give in honor of Selah and Sarah.  Thank you!

Today was a banner day for Selah!!!!   She had PT and worked OUT, then her nurse worked with her for hours.  She actually was making some "purposeful movement" with her left hand/arm.  The nurse was so excited she came and got me so I could see.  It almost seemed like she did it on command.  We haven't seen this type of movement much at all and it was thrilling. 

On Saturday night she had to be suctioned (we thought ) several times.  She made a noise so we'd get up but as soon as we took her nose off (the cover of her trach) the noise would stop and there was nothing to suction.  The whole time her oxygen rate was 99-100% so we didn't have any concerns.  It was just odd.  Well when our nurse came in Sunday morning, he noticed her "nose" (the cover) was all gunked up and she was not getting any air through it.  That means she was having to breath through her mouth/nose which is great!  I felt really bad about not checking the "nose" but then I remembered both of the hospitals she was in each had a time when her trach was clogged up completely and they found her breathing through her mouth/nose on her own.  It is a REALLY good sign that her oxygen levels stayed normal and she was not straining or upset at all.  It shows again she is a great candidate to come off of the trach. 

Today I called several places to try and find a speech therapist who is qualified to bring her off of the trach.  It looks like we will have to drive her to Tampa to St Joe's for the therapy.  I'm thinking we'll do the HBOT (which we are still working on setting up) first since it is for 20 straight days 2x a day and then do the ST to work her off the trach.   Selah has lots of things in her future:)

One week from now the casts will be off!  she is to the point it doesn't seem to bother her much!  We hardly give her the Tylenol w/codeine but we are still giving her the Valium until next week then we will wean her off again.  I like her to be as free as possible from drugs. 

Thank you for your prayers for Selah.  I blog daily and mention all the things good and bad so I have a record of everything.  I'm very realistic about Selah's progress, I report what happens.  I don't get really excited until she has consistency, that is the KEY!   She has had two other times when she was doing some independent movement like this, that clearly was not "postering" So please keep praying for my sweet little girl! 

And I'm proud of myself, I finally got the girls' paperwork for school and for Children's Medical Services done.  I also had to reregister Sam in school also as they had unenrolled him.  He was on the home bound program.  I expect the girls will be on the home bound also.  I'm not a fan of public school espicially with children who can not tell me what is going on with them!  That mountain of paperwork was stressing me out!  So glad it is done!!

When the Roll is Called Up Yonder I'll be There!

http://kacirek.blogspot.com/2013/03/link-to-help-lucia.html  If you would like to help Lucia, the little girl that must fly home on 1st class due to her disability.  This is the link you can give to.  She is being adopted from the girls' institution and she is badly deformed from years of neglect but has a happy heart.   Some have asked how to give to her and now there is a link up.  You have to scroll down and click on it.  Then on the donation write the Kiack family!  Thank you!

Today we had a sweet service at our church.  Dr & Mrs Charles Estridege spoke.  They formerly were teachers at Southeastern where Jon and I graduated from.  They are now missionaries to Togo and are teaching at the Bible College there.  We'd always had loved them but hadn't seen them in many years.  When you are a minister and you have friends all over the globe that happens sometimes.  The times you are together are very poignant. 

Well this morning the a/c unit of our church wouldn't click on!  Early this morning I had my poor son go up in the attic to see if the switch had thrown, that has happened.  It had NOT so we have no idea what is going on...GULP!  So we had to open all the windows.  Yes we live in Florida and today is a balmy windy day.  It was nice:)  As a child I grew up going to "camp meeting" at open air tabernacles, I loved it back then even tho it was hot sometimes and sometimes there were bugs:)  But there is noting like belting out the old hymns under the ceiling fans!  So this morning reminded me of that time in my life.  Our music director sings a great mixture of new songs, old hymns and choruses from the 80's/90's, no one can say they didn't like some aspect of the worship.  So this morning we sang a "few oldies but goodies" and finished up with the song "When the Roll is Called up Yonder, I'll be there" 

When the trumpet of the Lord shall sound, and time shall be no more,
And the morning breaks, eternal, bright and fair;
When the saved of earth shall gather over on the other shore,
And the roll is called up yonder, I’ll be there.

Refrain

When the roll, is called up yonder,
When the roll, is called up yonder,
When the roll, is called up yonder,
When the roll is called up yonder I’ll be there.

 

On that bright and cloudless morning when the dead in Christ shall rise,
And the glory of His resurrection share;
When His chosen ones shall gather to their home beyond the skies,
And the roll is called up yonder, I’ll be there.

Refrain

Let us labor for the Master from the dawn till setting sun,
Let us talk of all His wondrous love and care;
Then when all of life is over, and our work on earth is done,
And the roll is called up yonder, I’ll be there.

Refrain

 

you can hear Twalia Paris singing it here.....

 

http://www.youtube.com/watch?v=3Bk3gwyw5ps


That song spoke to me, maybe because we had our former teacher speaking ( although they didn't call roll in college lol)  but just thinking of various friends all over the world who are fulfilling their destinies serving the Master till life is over.....and how we will all stand before the Master one day.....  I'm not a big emotional person but I cried throughout most of the service. NOT because I was sad, but heaven & eternity seemed so close and the need of this earth seemed so great.....  Do you have those moments when you feel like for a second or two you can grasp "eternity"...  I do have those times, when I get that glimpse  of eternity.  That really keep me going....  Thinking of the day when we stand before the King, and all is made right, the tears are wiped away forever, where there will be no more suffering, no pain, no death, no goodbyes....  On that day there will be no more orphans..... What a day that will be.....  But the song reminds of to labor for the Master until our life on earth is done....  I want to do that, I want  my life to be a life that is busy about the Father's business.   I feel I have had so many wasted opportunities ...I've wasted years of my life.  Years I can't ever get back. 

So that is what is in my heart tonight.  My heart is stirred, I'm thinking of various friends who labor for God throughout the world, some in countries I can't even mention, because their lives could be in danger.....

So on that day, when the Book is open, and my name is called....I will answer...I may be battered, bruised dirty but I will answer.  have you ever seen the movie "The Inn of the Sixth Happiness"?  It is a movie about a missionary to China, Gladys Aylward.    Here is a clip from the movie....one of the very last scenes is what just touches me as Gladys walks in with her band of dirty, tired orphans...she walks into safety from the Japanese, to the sounds of a cheering throng of folks who can hardly believe this white woman made it through all the hardships to safety for herself and the children.  The first time I watched this movie I sobbed like a baby at this point.  I can so relate to it.  I picture waling into heaven a bit like this scene.....  And I hope that is how I do walk into heaven, a bit torn, ragged and dirty with a band of folks with me....    http://www.youtube.com/watch?v=wHUSIJx3630


Often I write my blog more based on my life and based on the readers who would normally follow me , who may be believers.  If you are not, I would be remiss not to tell you how you to can have the faith that has sustained me.  Just reach out to God, confess your sin, and believe on Jesus.  Ask Him to lead you to a good church where you will get more teaching.  I can recommend one if you'd like to write me personally at theclanton5@aol.com    You won't regret giving your life to Christ, it won't just be empty words, He is a real and living God.  I KNOW because if I can feel His substaing power during the darkest times of my life, then it is real.....   Can't fake the presence of Jesus when you are walking through the valley of the shadow of death.  I didn't have anyone there preaching me a sermon, or singing some sweet song to me or even praying for me as I sat night after night by my daughters bed.  It wasn't emotions that brought me through that horrible time and that is still bringing me through.... emotions won't carry you but Jesus will.    I'm so very grateful to God for His help.  The bible says that "God is our refuge and God is our strength, a very present help in trouble"  and I can testify to you that He is all of that and more. 

Thank you for praying for Selah....today we had special prayer for her.  She sat through church.  She has been strangely relaxed although we have cut back on her pain meds.  In this Easter season, I can't have but renewed hope for Selah.  We have many things in the works for her therapy wise but I believe God can do in one minute what man can never do.  Please keep her in prayer!

Easter Egg Hunt- Lighthouse for the Blind- Lion's Club

http://www.baynews9.com/content/news/baynews9/video.html?clip=http://static.baynews9.com/newsvideo/bn9/web_video/Beeping_easter_eggs_032313.f4v  this is the video from the egg hunt



Here is the article:)
http://www.baynews9.com/content/news/baynews9/news/article.html/content/news/articles/bn9/2013/3/23/children_listen_clos.html

I got to share in both:)  And there is some cute video of Sam

We just love Lighthouse for the Blind!  Every state has some organization like Lighthouse but I think Florida's in really good.  They were there for us shortly after Sam was home from the hospital.  The teacher came every week and worked with him and ME!  I think I needed it the most.  Our first teacher was Nancy, and I think I cried on her shoulder every single week for the first few months!  I was terrified of raising a child who was Blind!  But really through their help and through God's, I learned that it was a gift not a curse....yes, it was a different sort of life but it was livable AND it was enjoyable!!!!  I can really not say enough good about Lighthouse!  They all have been such a blessing in our lives for many years. 

This year we had the egg hunt at the Cotee River Lion's Club of New Port Richey Florida.  It was beautiful out there.  they have a place on the Cotee River with a walkway over it.  They prepared lunch for us.  Sam was first in line and ate 2 hamburgers:)  The Lion's Club is important to our family also.  When Sam was first born, he had cornea transplants given by organ donors that gave him a small measure of sight.  The Lion's club does that service for the state of Florida.  We actually got on the elevator with the repersentive from the Lion's Club.  He was carrying a small cooler, and he gleefully told us that the cornea's were in there!  So we rode up to surgery with Sam's new corneas:)  Of course we are forever grateful to the families/individuals that gave the gift of sight to Sam.  Even though it only worked for Sam a few years until his body rejected the grafted corneas...it gave him some sight and most importantly it allowed his brain to make "pathways" from his eyes to his brain and that helped him be ready when he had the implants done to be able to see.  A person has to make those eye/brain connections as a child or they can never have sight!

 

Jon and me on the walkway

Jon in the background

I love the REAL Florida

the pavilion

 

Me

the gang

 

Here are some pictures of the real Florida, the Florida I love and grew up in.  Nothing relaxes me more than being out in nature. 

 

 

some of the kids and staff

Princess Sarah

&

King Sam

 

 

Shad enjoyed playing with a beeping ball.  The kids who were not blind had to wear blacked out glasses so they could experience blindness.  He had a blast and met some new friends

 

 

 

 

 

 

Egg Time!

 

 

Steve helped Sam!

 

 

 

 

Sam really enjoyed it but he thought he was supposed to sit down every time he got an egg.  It was hilarious:)

 

Shad participated by wearing the blacked out glasses too:)  He loves to be involved.  Look at his Duck Dynasty shirt....

 

Sarah's first egg hunt:)

 

 

 

 

 

 

She really enjoyed herself

 

 

 

 

 

 

 

 

 

 

 

Love this girl:)

 

We didn't bring Selah, it was an hour drive and we didn't think she'd enjoy herself very much.  Plus until we get a handicapped van we can't all go in the same car.  But she was happy when we got home and was just waking up from her nap.   I'm thankful for nurses I can trust to take care of her!

 

 

Only one more week till the casts come off!!!

 

she always responds to Jon, she is such a daddy's girl!!!

 

So everyone had a good day:)  When we got home, Steve put together all our new tv stuff.  Our old ( i think 11 year old pre-owned-thanks Jean)  big screen tv died last week so we moved into the HD age:)  We picked up the stand today and rearranged our living room.  Steve joyfully put it all together AND we got a Blu-Ray!  Wow we have moved into the 21st century LOL  ONLY because we have a teenager!  The boys are so excited, they got Lord Of The Rings on bluray and they are just certain it will be the best movie ever LOL  (they've seen it and have it on DVD but that movie and The Hobbit are their favorite...me not so much but whatever......)

 

Thank you all for your prayers!  Please keep praying for Selah.  I will post more info for the little girl I posted about yesterday when I get a reply from her mom. 

 

 

 

 

 

 

 

Rainy night ~ thoughts on an orphan girl

PLEASE read this and pass it on your FB, blog, email, church prayer line.........I believe I KNOW this child....this family is adopting two children a boy and a girl from my girls' former mental institution. I played with and spent quite a bit of time with the boy. The girl I ...believe we met one time....one weekend we were graciously allowed to go and visit our girls ( very unusual the favor we had) We were out on the "porch" area with the girls and this girl was out there lying in a travel crib! She is 16 yrs old, I'd never would have guessed that although I knew she was older. She would smile at us throughout our visit and honestly it made me uncomfortable. Why? Because we were loving on and playing with our girls and she had no one. I sat on the floor there and prayed in my heart that the girl would have a family come for her. I will admit, I had NO faith that if would happen, she was older and obviously very physically handicapped...but her smile...it haunted me. BUT GOD.....He had a plan for her!     PLEASE IF YOU HAVE ANY CONTACTS THAT CAN HELP THEM GET TICKETS IN 1ST CLASS FOR HER AND HER MOM OR THE NURSE WHO WILL BE FLYING HOME WITH THEM, PLEASE HELP US OUT!   She is unable to sit for more than a few minutes.  She must be able to recline.   

http://www.kacirek.blogspot.com/  here is the family's blog, it is beautifully written.....they've taken pictures of the child and it shows how awful her condition is.  She has CP and scoliosis  and her back is twisted.  There is no way she can sit up from Ukraine to America!

I tell you what, the fact this girl, has a family that have come to adopt her...it just blows me away.....totally blows me away.  God HEARS the prayers of these orphans.  One day when we stand before the King, He is going to require of us an accounting of how we have spent our lives...how we took care of "the least of these"  What will you say???  I know I will say I have NOT done enough!  I've wasted so many many years of my life not doing ALL I could for others.  Now our circumstances are not in a place where we could adopt again.  That grieves my heart.  I wish I had done more.....much much more.....

Here is a picture of Selah and me and their daughter ( I beleive) in the background.  She is cognitive as you can tell from her interchanges with the facilitator and her family in their blog.  I had wondered how they trusted a child outside like that by herself but now I understand.   Most of the children at the institution were very low cognitively. 

 

Selah had a good day, she had her OT evaluation and that will be starting soon.  I'm continuing to get everything ready for her to do the HBOT.  I was going to try and put a paypal button up on the side of my blog but I've decided not to do that.  If you'd like to give to her HBOT, please send a check to our church Grace Church 7060 Berry Rd, Zephyrhills Fl 33540.  attn Selah Clanton medical treatments.  You will get tax credit and the church will just issue one payment to the therapy office.  We have no doubt, that God will provide whatever she needs for her medical treatment.  It will cost about $4,400 for the first set of treatments, if there is any real change we will do a second set.  Our doctors are cautious and not too encouraging about the HBOT, and I respect that...however if I'd listen to the medical world about Sam's eye implants, my son would still have no sight.  It worked for him, for others the eye surgery did not (or they weren't eligible like Sarah)  So the HBOT might not work for Selah BUT we must try everything to see what can help her!  I wouldn't want to have that regret in the years to come.  It's best to do treatment as soon as possible after the accident to see the best results. 

 

Well my house is Spring Cleaned:)  I'm Happy Happy Happy about that:)  Tonight is a nice rainy night and Selah is calm and asleep, my other little ones will be soon....I feel a sense of contentment that I've not felt for some time. 

 

Thank you for your many prayers for our family and for the many other needs I bring to your attention.  Please pass this need on for this little girl and her family!  And please continue to pray for our precious jewel.....

Day 139 fish Oil study

Selah had another good day.  She was up alot and her numbers are great.  We are all excited and we have HOPE that this HBOT may help her some! I also am working on getting her into speech therapy with someone who is used to working children off traches.  I spoke to a nice lady today and she is setting some things in to motion.   Between prayer, fish oil, therapy and HBOT...we are ready to see some results!  I did alot of phone tag as we are setting up the HBOT and doing some other things too.  I also started crazy spring cleaning at my house:)  Actually all the bedrooms are completely cleaned!  My goal is to be done by lunch tomorrow. 

It's so great to feel some HOPE in my heart.  Selah was just so cute today and content...I just kept going in her room and telling her to rest up because we are ready to do some more fighting for her:)  She had finished tummy time and all her range of motion exercises with her nurse and was taking her afternoon nap.

 

Don't you love her custom made hospital gown?  BJ made her a bunch of gowns and I love her having them.  Usually we just use them at night but with her casts they are so much easier to put on! 

Although she is asleep, she is really holding her head up great with no pillows. Somedays she doesn't manage her head as well as others but today was a good day!  Look at her hands they are so relaxed.  I love that! 

I want to give honor tonight to a little girl who was adopted through the ministry of The Shepherd's Crook Ministry.  Shad was on TSC list, as they try to help place kids with special needs.  This sweet little girl was one of the first they had listed.  She spent her first 3 years in a crib in Bulgaria....then her family came and loved her with all their hearts.  A few days ago she got sick with a cold/flu and her heart got infected.  She was taken off life support today.  Please pray for this family.....and hold your family close tonight....  We never know what the future holds.....  http://us5.campaign-archive2.com/?u=f14884e6c88d4b68239654ec5&id=01307465f6&e=9c7b6bfa20 

Thank you for your prayers for Selah.  Tomorrow is a big day, she has physical therapy and her occupational therapy evaluation.  Hopefully we will have our phone interview with the doctor overseeing her HBOT therapy also.  Hopefully I will have lots of info to share tomorrow:)

HOPE...HBOT

This morning I was doing some errands and went down a street in town that I've not gone on in a long time and saw a new Hyperbaric Oxygen Therapy office!  I went in and got some info and we are excited.  We hadn't looked into it as much as we wanted to since we knew it would involved me driving her daily to either Tampa, Orlando or St Pete.  Usually a child is seen 2x a day for an hour at a time.  So I thought I would need to wait until things calmed down more.   It would have been hard to schedule it.  Then I see one just a few miles from my home! 

We already have begun the process to start her.  I'm getting together her medical records and a few things.  Of course it is not covered by insurance at this time.  There are some things that insurance will cover HBOT for but brain injury/near drowning is not one of those.  So....we will be doing some fund raising for this therapy.  It is not cheap nor does it come with any guarantees.  It is not FDA approved.  There have been studies done that indicates it helps brain damage but the jury is still out.  We don't know if it will help her, we just know we are going to try it....  I am looking at various ways to set up a site where folks who'd like to give could give towards her treatment.  Hopefully I will have something in place in the next few days.

We've always believed in researching and trying things to see if they'd work for our children.  We were told there was nothing that could be done for Sam and yet we found a doctor that was able to give him a measure of sight.  This may not "cure" Selah but maybe it will help her improve.  She is still on fish oil so maybe the two things together would be the thing that would help her the most.  One of the men who recovered completely from a brain injury and who is on the study Selah is on, also did HBOT.  And in my opinion, he has the fullest recovery of anyone that was on the study (that we've seen video of) 

So tonight I feel more hopeful for Selah to have some more recovery than I have in awhile.....I believe God gives doctors wisdom and knowledge in order to help others.  So I feel like seeing this office was an answer to prayer.  I actually passed it as I was on my way to the bank and then turned around and went back to it:)  Believe me, I was excited!!!!

Selah has had a really good day today.  It seems she has turned the corner and is not as bothered by her casts...Only one week and 5 days to go:) 

Our nurse told me that the PT had told her that Selah had really good skin, fat, and more muscle tone (in a good way) than any child she'd ever worked with that was in a near drowning accident.  That also encouraged me as the PT is not one to throw out compliments or anything false to get hopes up, she is pretty realistic.  Selah is so round, so normal looking in her limbs and body.  She looks very healthy.  I take that as a good sign.  I think kids who have these type of brain injuries often have their muscles atrophy and there is often other issues in which they don't thrive as well.  Selah has thrived to say the least, she is a Chub and looks adorable:)  We've been blessed not to have to deal with some things like that.  I take that as a good sign. 

We have a nice rainy night here in Florida, just what the garden needs, a long slow soak.  I hope it rains all night!

Here is an interesting article.  It is from Charisma magazine, a magazine I used to like but have grown tired of for the most part over the last few years.  This article however is really good and says what I was trying to say a few nights ago about WHY so many folks are excited about this new Pope.  We, in the charismatic/pentecostal movement are growing TIRED of silly celebrity preachers.... http://www.charismamag.com/blogs/fire-in-my-bones/17130-no-more-pentecostal-popemobiles   Anyhow I thought you might find this interesting. 

Thank you all as always for praying for Selah.  I appreciate it and probably none of us will truly know what the power of prayer really does this side of eternity...but I know God hears....I still am like the widow woman who Jesus talked about.  I pray most of my waking moments for Selah to be healed.  My husband has always called me a bulldog (as a compliment)  and I tell God that I have no one and nothing but Him and I'm not going to let go and I will not stop praying for a miracle for her.  I hope I "bother" God like the widow bothered the unjust judge....I tell God that He is a just Judge but I won't stop praying for my La-la. 

PRAYER REQUEST!
One of my BFFs will have TWO of her sons in surgery tomorrow!  They both are having their tonsils out and of course there are some concerns.  My friend was also given some hard news today about another one of her children, who was diagnosed with a learning disorder that is not something that will respond much to therapy....she has alot on her tonight.  Please pray for my dear friend who has been there for me so many many times....