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....

The Call

A year ago today I got "the Call"...a real literal call telling me our lives were about to change.  Not everyone gets such a call. 

Our paperwork had been in country for two months as we waited through all the Ukraine shut downs for Christmas, various holidays, the change over at the adoption office...finally some families started getting their calls telling them they had a date to meet with the DAP to get their child's referral...I was JEALOUS when I heard others got their dates, I was ready!  So that fateful Monday morning I had really just about given up hope.  Many times the call came early (like 6 am early)  so by the time it was 9 am, almost all hope was gone.  I was still sitting on the couch with my home phone and cell beside me and on the computer looking to see if anyone else in our group got their call when the phone rang....  OMGosh....it was our stateside helper telling me we had a date to meet the DAP at 10 am on April 2 .....WOOHOO!!!  I cried and screamed and the poor lady hung up to call others, with her ears ringing:) 

I called Jon and then set about booking our tickets immediately.  We were leaving on March 30th to meet our girls......

Knowing that the call was coming, I was trying to pack our bags but not being able to get too far with them.  The call did not help, it made things even crazier:)  I HATE to fly and so now I had that to dread too but we were going...Someone in the goverment of Ukraine was kind enough to see our paperwork and give us a date.  I was excited/scared/terrified/ and kinda was thinking we'd lost our ever living minds:)

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So that begins my first blog about our one year anniversary.....I plan on blogging about it since I didn't when we were in Ukraine for the most part.  I have some great pictures to share.  Thankfully I saved my pictures by the dates so I will know the corresponding dates/posts.... 

Selah had PT this morning and that seems to just center her for the day.  Her nurse took her outside for awhile also.  She is relaxed and we have only one week and six days till the casts come off!  WE gave her a real bath today and then I blowdried her hair.  She looks so good and clean.  It takes me and the nurse and Steve to get her in and out even with the bath chair but once she is in the tub, the bath chair is the BOMB:)  I got her squeaky clean today:)

Finally I started back walking.  Before we left for Ukraine I walked just about every day for 3-5 miles a day for years.  Once we came home I walked some but it was challenging to get the three little ones up, breakfasted, and ready to meet my friends.  I only went a few times and then I had a horrible issue with my foot that ended up requiring several surgeries.  Then NY happened....so anyhow I am back, full speed ahead.  We did three miles this morning on the Mountain:)  Our hospital has a cardiac 1/2 mile track that will kick a Florida's girl's butt!  It has real hills built in.   So this morning we did it 6 times around.  It felt great, love the burn and the sweat:) Even got to go out with my friend to eat breakfast since she had some unexpected free time!   Came home and finished the garden, put in two box gardens of potatoes and one with carrots.  Then I ran to the store, and got "The Hobbit" my kids have been dying to see it.  They saw it when it came out in theaters but was ready for it to come to the Clanton Theater.  I also found Duck Dynasty season 1 and 2!  HAPPY HAPPY HAPPY:)    Yes we like DD.  When I first started seeing folks post about it I thought it sounded crazy...yep that's about right, crazy like I grew up.  I know so many good old boys like those guys, they just make me smile:)

It felt good to go and do something like walking and eating out with a friend.  Most of what I do right now revolves around Selah, which is necessary and which I want to do, but I know I need time to see that the world does gone on.  It's so easy to get focused on your problems and sorrows. 

After my scare the other night, I've resolved to be healthier.  (we actually have been researching some things)    We've always eaten healthy (except for my Pepsi addiction and love of fried chicken)  I'd been reading a book called "The Great Cholesterol Myth"  We've always eaten low fat due to my husband's family history of heart disease.  BUT after reading this book it makes us wonder....my family was a country family, they cooked everything with LARD!  Lots of things were fried, but most home grown.  We used REAL butter....no one in my family died of heart disease.  In fact most died of old age OR lung cancer ( as most of the men smoked BUT the men were all in their 70's when they got the cancer)  Most everyone lived to their 80's or even 90's....    According to this book they ate more natural foods and nothing or very little processed foods so that is the best for the body and the heart overall.   Jon did take a statin drug but he had heard about this book some months ago, and the risks of statins and decided to come off them.  I was not happy with him but agreed to it if he'd take fish oil.  Well with the past few months, everything has been out of wack but now we are going to really focus on healthier eating (but no I can't bring myself to use Lard!  Just Olive Oil)   I'm going to set up appointments for us to get all our bloodwork checked and just to watch things on him.   You might find this book interesting.  I'm actually going to buy it so I can really mark it up.  I even bought real organic butter the other day....NEVER had before in my life!  We are still researching but one thing the book is big about is lowering the sugar in your diet.  I don't really like sweets but I do love Pepsi but I have gone off it completely.....I'm drinking tea and coffee now which both have good things in them, I do sweeten them but less than before.  Tea has so many good things in it.  My family drank tea by the gallons....maybe that is why they all lived so long and were pretty healthy.  I add lemon to my tea, really squeeze it in to give an additional boost of Vitamin C and it is supposed to clean the liver out too.   I'm not having any soda in the house so my kids are not happy but they will live....  We are taking Vitamin C, Fish oil ( Dr Sear's Brand http://www.zonehealth.com/theclantonfamily  the same pure type that Selah takes but in capsule form for us)  CoQ12, and a baby asprine a day. 

Thank you all for your very sweet and supportive posts and emails about my blog on the anxiety attack.  I almost had another one last night but I took a pill and walked outside for a little bit and then sat on my swing and made myself breath deep for a few minutes.  I often quote scriptures to myself , so I can focus on that rather than the problems at hand.  Scripture comforts me and I'm thankful for all the memorization I did growing up.  I wasn't so happy about it at the time but now I know it gets in your heart and stays there! 

There is nothing else in this world that is firm and unchanging but God.  Kingdoms rise and fall, people come and go, circumstances changes, finances change but God is forever faithful and is the solid rock that I stand on.  "On Christ the solid rock I stand, all other ground is sinking sand"   I'm thankful for that real solid Rock to stand on......

Thank you for all your prayers for Selah and for us!  I do not take them for granted! 

Aniety attack...

Last night after feeling so sad all day, I thought I had sorted through my feelings and had had a good cry.  So I was sitting half skimming a book ( on WWII and the Holocaust- I know not light reading) and half watching the movie "the Bible" and out of no where I am slammed with chest pain and my heart beating so fast and hard.  I didn't want to tell anyone what was going on so I got up and went to my room and took a few aspirin.  I sat there for about 30 minutes trying to be calm but shaking.  ( I tend to shake when I am upset)  Jon came looking for me and I decided to go to the hospital.  After being checked out, the doctor said I'd had a panic attack.  It was NO fun let me tell you.  I've had twinges before in my chest and had had some testing just to find out it was a muscle condition in my ribcage and this seemed to tie in with that also.  So I was given a prescription for an anti anxiety med that is really light and non addictive.  I am not one to take meds and they usually adversely affect me but it seems to have helped some.  I still find it hard to catch a deep breath but I'm trying to relax.  today I took the kids to run errands, it's just good to be out together.

I am somewhat embarrassed by this reaction.  I was offered some meds when this all first happened and I declined them.  But after all these months, it felt good to have the edge taken off.  I am not sure that I will stay on this prescription, right now it is only to be used as needed.  Since I call this blog "My Real Life" I thought I'd be real and share this with you all.  Last night I had the nicest doctor and nurse at Zephyrhills Hospital.  They were kind and understanding.  He was also concerned with my neck and said he could feel tightness half way down my back.   I was treated fast but with enough tests that it relieved my mind, for the most part.  You do know I"m a closet hypochondriac.  I do NOT read anything medical on the web.  I know moms who can rattled off all kinds of medical stuff, no, not me!  I stay as far away as I can or it just totally freaks me out!  I really fight it, mostly by ignoring it LOL...

So after all of that, Selah had a great night with Jon LOL  He got a good night's sleep.  She has had a good day and did great during PT.  Our nurse had her up most of the morning and early afternoon and she is sleeping so nicely and peacefully already.  Two weeks from today the casts will be off:)

Here are some pictures of Sarah walking by pushing a chair in front of her.  She seems to do better with leaning forward and walking although you can see she still puts her feet down oddly.  The PT is puzzled by her.  Sarah has the ability muscle wise to walk it would seem.  She is quite fearLESS so it's not that either.  She wants to and likes movement, she is never still.  But yet she is not walking yet.  I'm glad she is finally in therapy and hopefully she will start walking soon.  I love one thing the PT said "If Sarah had been yours from the beginning she would be walking"  how nice of a compliment  that was to me.  I am very commited to see her achieve that:) 

 

 

So please pray for Selah and for me too.  I am so thankful for all the messages and emails I get from so many saying they are praying!  It really means so much to my heart:)

Looking Back....

http://myreallifebyyvonne.blogspot.com/2012/03/introducing-selah-johannah.html

A year ago today I introduced Selah to my blog.....it just rocked me to think it's been a year today since the first post about her....

Some Sunday family pictures

I did take some pictures of the kids today that I wanted to share.  I love these pictures. 


This is before church.  I tried on this dress I bought sometime last year at a thrift store for $1...it fit perfectly and she is just so beautiful in it.  I need to crop out my bed and just have her  in these....

 

 

she is regal:)

 

 

 

 

 

 

 

 

 

 

 

 

 

Is this perfect or what except for my crazy quilt background.  Sarah is so sweet. 

 

 

 

 

the boys:)

Sarah is fascinated with Shad right now.  She always wants to sit by him and gets right up in his face (we think to see him better)  it is so cute to watch them. 

 

 

Selah getting ready to go night night

 Purple casts

She's a little more alert

 

 

I'm thankful for and love all of my children.  I feel extremely blessed to be their mom. 

My thoughts ....

Selah is doing fine, had a good night.  She doesn't like being out of bed much with the casts on.  She only tolerates about an hour before she gets her sad face and tears.  But we are turning her and doing lots of range of motion even while she is in bed.  Two weeks and one day till these blasted casts come off!  I got the most sleep last night that I've gotten since the surgery. 

Today as we fast approach the one year anniversary of our trip to go get the girls, I am so sad inside.  I look at Sarah and see how far she has come and then I look at Selah and see what she has lost.  This afternoon I went out on my swing and looked up at the sky and just begged God to send Selah back to us....I don't want her any different than who she was before the accident.  I just want her back....  I look at the sky, the trees, the grass and I know God made them all...I believe He is the creator of Life and this world....

I had a dream right after the accident that Selah "came back" cognitively but she couldn't walk....it was so real and we were at home in the dream.  I've never claimed that was a dream from God, I sure hope it was but I don't know.  Every dream I've had about her since the accident involved her being healed.  Again I don't know if that is God or if it is just my own thoughts and hopes....

I read other families blogs or facebook pages if they are sent to me.  Reading over some of them would make me think I'm not very spiritual, I'm not claiming anything or speaking anything over Selah.  I'm also not exaggerating anything either.  I think I go the opposite extreme and down play stuff because I don't want to act like everything is just fine and she is healed....It's not and she's not....  That is the truth.  Some of the pages make me sad for the child and family as they are obviously projecting onto the child's situation what they want to see.  Let me tell you I'm not projecting, I'm telling you how it is and how I feel. 

But...I still know there is a God who loves us.  You may not understand that.  You may think that God should be required to step in and "do something"  But that is not God, that is not his word.  He could magically make everything perfect this very second but that is not what He has promised.  He has promised to walk with us "through the valley of the shadow of death"  He has kept that promise to me.  He is still keeping that promise, even as my tears fall like rain as I type this. 

I've experienced God's strength and grace in a way I have never known before in my life.  I am so thankful for that Grace and Strength.  I'm not shouting and dancing with joy right now.  I'm crying and feeling despair but I still will trust Him.  When I look ahead in the future, it does not seem very bright to me.  It's scary, not just because of the unknown things ahead but because of the known things that lie ahead. 

But I cling tight to Him....to the One who knew what was ahead for us and sent that lady to speak a word to me in the Mall....  I don't know why all this happened, why God didn't prevent it from happening...but I don't blame God either....  I don't understand things but I know God sent that lady to speak to me and to tell me "Something Big was ahead for our family, many would see and Do NOT be afraid"  She claimed that word came from God and I could tell she was a christian from how she spoke.  She wasn't some kind of new age psychic...

As we have walked through this God has provided everything we have needed.  EVERYTHING!  Jon was without a paycheck for months and we really didn't even notice it.  We didn't think about our needs as we were so focused on Selah and yet God met them.  I'm thankful for that testimony.  I know God will provide us a van that will fit her wheelchair and even a house that is fitted for her....but honestly I pray that we do not need that!   We had so many offers in the beginning of help that we turned down because we could not focus on anything but Selah.  I asked folks to give us time to see what we actually needed and what we were going to do.  I had hoped that Selah would receive a miracle and we'd just go back to our little house....  I'm still praying that we will not need anything else for her because she will be healed.  I'm quite the fund raiser/grant finder but every time I think to do something, I just can't do it.  So I figure God knows what we need, when we need it and He'll take care of it when we need it IF we need it.

But I'm sad, not alot of fun to be around right now.  I force myself to focus on other things with my family as I know my kids need me too.  My heart is so heavy some days still it feels like it will break.  How can a little girl that I only knew for a few months break my heart like this?  It's because she is my daughter and I can not stand to see her like this.  I miss the funny little girl she was so much that it takes my breath away literally......

Right now we have her on several meds to dull the pain, take away her anxiety...which takes her even further away from us.  It is so hard......I will be glad when she gets through the next two weeks but it's not like she is going to just become normal again, even after she is off the meds...outside of a miracle. 

Please pray for Selah, pray that God will give us a miracle.  I just want my little girl back, I feel like we've missed so much with her.  I know I'm not the first mom to be in this situation and I surely am not the most spiritual or the best, I'm not asking for God to heal her based on my merits...but on His grace and mercy. 

Exhausted

I had planned on staying up till midnight last night and giving Selah all her meds.  Then Jon was going to do the 2 am and 6 am meds...THEN....her feeding pump did something and pumped out her feeds on the bed and her so we were up cleaning ...I think I went to bed at 4 or so...not even sure but I did sleep till Noon:)

I am exhausted tonight....I'm usually a person who goes to bed around 10 or 11 pm and gets up at 6 or 7 am and feels great.  these past few weeks have kicked my butt!  I keep telling myself "only two more weeks till the casts are off" she will be back to her regular schedule then and hopefully back to peaceful nights!   We had stopped having a night nurse for several reasons and had had no issues until now!  I've asked for one a couple of nights a week so we can plan some things with our family, so we'll see.  I'm picky about nurses and now know what to look for and what to avoid! 

Selah had a peaceful day with her Franciscan Monk, who is quite happy with the new pope:)

So today I went through my husband's closet.  As a chaplain and department head, he has a dress requirement.  Sometimes it is not enforced and sometimes it is...we are in the sometimes it is right now....So I gave his closet a good cleaning out (he tends to hoard old things lol)  I ironed and put together about 2 weeks of clothes so I don't have to bother later.  He will actually be wearing a tie....   Ironing is strangely soothing to me...  so I watched the news and ironed for a couple of hours...  Also the kids will have ironed clothes for church tomorrow:)  Remember I have a psychology minor....I totally get myself LOLOL  Ironing is safe and doesn't take any thought effort, it's soothing:)

Please pray for our Thursday nurse, they released her from the hospital but her 14 yr old daughter was having surgery at another hospital today due to the injuries she received in the head on collision.   Please pray for both of them!   Please continue to pray for Selah!  Please pray that we get a good night sleep tonight.  I am so tired! 

Cast change ~ good news

We got up really early this morning after being up off and on all night to ensure Selah had all her meds.  Selah had her casts changed.  Before the procedure I talked to our Doctor about how uncomfortable she has been and was a bit discouraged.  He thought she might be having such muscle cramps that her legs/feet will go right back to the state they were in before the surgery.  However after he came out he was pleased with her response.  He said that things were really good and he didn't see any muscle spasms.  Her legs/ankles/feet had really good range of motion.  She was healed up and her skin was great under the casts!   Of course she was under anesthesia so she was not fighting him any but things could have been alot worse.  She was fitted for AFOs, soft braces to wear during the day and a pair to wear at night.  She won't be required to wear them 24 hours a day but probably at least 20 hours a day to keep things nice and in place.  I saw the casts for the AFOs and it looked like casts of a "normal" foot/leg:)   She will get her casts off for good on April 1st!!!  I can NOT wait!  I'm sure she will be glad too!  The new casts are PURPLE!  They have to match her Easter dress:)

The doctor suggested going up on the Valium for the next two weeks to help keep her calm.  She has been calm today despite the early morning trip to Tampa and all she has gone through. 

I have to say I really like St Joe's, it's a good hospital and we have been treated very well there.  I'm glad we made the choice to keep all her specialists there at St Joe's rather than All Children's.   Every time we are there, some staff just seems to go out of their way to express kindness to us.  I really appreciate that.  Today several staff members were just so helpful and kind.  The nurse who checked us out, found a box that I could put under Selah's feet in the car to keep her more comfy:) 

We have decided that we are going to start looking for a handicapped van, one of the bigger kinds with a lift.  It is so hard to get her into a car seat and so upsetting for her.  Please pray that I'll be able to find some organization that helps with things like that!  I'm also going to research more in to HBOT, (thanks for all the info that was in some remarks back a few posts!  I'm using all that info!  Thanks!)  Those are the two things I'm going to look into for her. 

Thanks for your prayers today, things couldn't have gone any more smoother!  Please pray that she will be comfy tonight so I can get some sleep.  I am exhausted!!!!  This afternoon I went outside to read wile sitting on our outdoor swing...next thing I knew I was sleeping on it!  We had beautiful weather today and it was nice to sleep outside!

  Also please pray for one of our day nurses, I was told she had a car accident today.  She is only here once a week but we like her so much. 

Surgery tomorrow! Thoughts on the new Pope

Selah had a better day today.  I set my clock and got up and keep the pain meds going even when she was pain free to stay on top of the pain/discomfort.  I am tired but she did much better today.  She sat up for about 4 hours and that was good for her:)   We kept the meds going every four hours and she never got uncomfortable. 

We are going to have a short night between the meds and getting to St Joe's early in the morning!  She will have her casts removed and replaced.  She had bleeding in one foot so that one needs to be changed out and this way they can eyeball her leg/feet and make sure everything is ok.  She seems to have a lot of discomfort.

We finished up the garden today ....just in time for FROST in the morning!  In Florida?  In March?  Geez!  I had to cover all the plants up, not too worried about the seeds, they will stay warm in the raised beds but some of the plants can't handle cold too well. 

I cooked a pot roast in the crock pot today and made biscuits from Red Lobster:)  A friend had gotten me a box from Sam's Club to make and they were good.  I got the little ones their baths, and everyone is in a food induced coma so we're all going to bed early tonight!  Ok that concludes my day.....

So a quick thought on the new Pope...maybe I've become more  ecumenical  over the years but I am very excited about this new Pope.  A man who lives a humble life...reaches out to the poor and needy....  and I see my excitement echoed by so many, Catholic or not.  Why?  I believe it is because the world is yearning for REAL people, people who are authentic and really live the life they talk about.   We are tired of hearing about the gold toilets and the private jets of many of the world religious leaders.  We are looking for someone who is down to earth.   This man brings that hope that there are still good people in the world today who want to SERVE and not be served.....  I hear stories of missionaries who have their own maids....it's laughable....I LOVe hearing about a man who takes a bus to work....  He was the one of the  leaders of the Catholic Church for Latin America yet he didn't need an entourage....  I've met pastors of relatively small churches , just a few hundred people who had to have "armor bearers" to help them out LOLOL  If you've read my blog very long at all you know stuff like that makes me SICK!   He has shown a good example for ministers of every denomination to follow....Live simply, focus on the needs of others.....    Why do we, as ministers, feel we have to look successful?  I know ministers who get into debt buying a certain type of car so they "won't bring reproach on the name of Jesus"  Ummmm REALLY??????   It is laughable IF it weren't so sad and sick.....  Things like that don't matter in the least bit to me.  As long as a car has A/C I'm good:)  (well I do live in Florida)  Someone gave us a brand new van last year and don't get me wrong, I have enjoyed the heck out of it....BUT that was not something we were even thinking about, much less praying about....it just happened and we were blessed but we weren't striving for that and were perfectly content with our 2000 Dodge Caravan....  When you think about how short this life is, and what really matters, then all that other stuff should just fall by the wayside as we serve God by serving others. 

I read a cute joke about a rich man who begged God that when he died he wanted to take some of his wealth with him.  So he died and God let him take a suitcase full of wealth with him.  When he got to the Pearly Gates, St Peter had him open it.  St Peter was so confused and asked the man WHY he had brought part of the street with him....  (he brought a suitcase full of gold...but in heaven the streets are gold so it would be like me taking some asphalt along with me and thinking it was just wonderful.  )  Gold is nothing in heaven, we'll walk on it, that's how "rare" God sees it.....not rare at all. 

We should remind ourselves not to think too highly of ourselves and even more so if we are ministry!

Ok that is my thought for tonight.....

Please keep praying for Selah, especially tomorrow morning.  She will have to go under anesthesia for the casts to be redone but it will be quick.  Thanks for your prayers.

Day 129 FOS ~Rough Day~ Garden pictures

Selah has had a rough day.  She woke up about 5:30 am, I gave her her pain meds and changed a poopy diaper.  Then she was calm and went back to sleep.  Jon got up a little later and she was fine.  But by the time the nurse got her, she was in pain again (I had just given her Motrin as we don't want to give her too much Tylenol with codeine.)  Her blood pressure was high.  She responded to the meds, but was upset off and on all day.  She didn't want to sit up in her chair at all.  THEN her gtube came out again!!!!!!  The balloon had burst, the balloon holds the tubing in.  Thankfully we still had the old smaller one....tomorrow we are getting TWO!  We think that we have just gotten some bad ones.   So tonight we are keeping her on a strict pain management schedule.  She is going to get the meds, even if she seems calm, otherwise it just sneaks up on her!  She will have her casts removed on Friday and changed so we'll see if there is anything going on that is covered by the casts.  She hasn't ran a fever but I just feel so bad for her. 

The boys and I did finish more of the beds in the garden today.

 

Here's me in my happy place:)  The two beds behind me I put in onion bulbs.  And the one on the right side back has potatoes in it  I have 15 square foot gardens.  Each are 4 feet by 4 feet and so easy to maintain.  I also have about 20 strawberries hanging up and 2 handing tomatoes plants and herbs in containers. 

 

Sitting on the swing with the ONE remaining cat I can pet, Henry.  I have Lavender in both of the pots beside the swing and that is a honeysuckle vine behind me. 

 

 

 

 

 I could look across the yard to where the boys were watering the plantings:)  I'm a good supervisor. 

 

Really liked the news about the new Pope.  He sounds like a very humble man.  I love what I read about him "As archbishop of Buenos Aires, he reportedly rode the bus to work, did his own cooking and visited the poor in Argentine slums. Instead of living in an archbishop's palace, he chose to live in a small room in a downtown Buenos Aires home. "   Also "The name Francis is a clear indication of his desire to focus on the poor."  He is very conservative as well as pastoral.   We need ministerial leaders who are humble.....  Like the name he took, Francis, no one is sure why he chose that name exactly but one of Selah's nurses is a Franciscan Monk although we don't know alot about the different orders in the Catholic Church, we know some and like the sacrificial lifestyle embraced by that order. 

 

http://natepyle.com/confronting-the-lie-god-wont-give-you-more-than-you-can-handle/  This is a blog written by a pastor.  A friend sent it to me knowing how much I HATE when someone tells me "God won't give you more than you can bear"   Since that is NO wheres in scripture, it drives me BATTY!  This is such a honest, good post....I've subscribed to this pastor's blogs, I love honesty and sincerity and I see it in his writings. 

 

One more thought before I close....

 

http://everlastingmomentum.blogspot.com/2013/03/our-jonathan-is-arms-of-god.html  This family was just a few weeks from traveling to adopt their son.....he passed away....never having known the love of a family....please pray for their hearts right now....I was so afraid of this happening to Sarah, since she was so obviously weak and frail....I can imagine some of their pain as I too got a phone call telling us the little boy we'd loved had been adopted by another family.  We grieved....but we knew he was going to be loved...of course this little guy is in heaven and has the love of God with him now but it still must hurt this family so much.   Please keep this sweet family in prayer!

 

Please pray that Selah will have a good night tonight!  Thank you for all your prayers for us and for others!!!!!

Day 128 FOS

This is feeling alot like Ground Hog day the movie.  While Selah is in the casts our days/nights are filled with keeping her comfy.  She had PT today but had a tiny bruise by her gtube with a tiny cut in there.  Maybe she did too much yesterday in PT although she didn't seem stressed by it.  I did buy her a manual BP machine that is made for children.  I actually learned how to work it:)  I swear I'm going to be a nurse before this is all done

Some friends called me this morning and invited me to  breakfast...that was nice and a mood lifter even if I did cry some....I've turned into Ms Waterworks now.  My emotions are just so raw right now. 




Shad and Steve cleaning out my square foot garden beds

 

my giant collard greens!  Despite little care they are still huge!  I cut some of the others down yesterday and cooked them

 

 

 Look in the very middle of the picture that is an asparagus coming up out of the ground that took 2 years to grow!

 

Steve and Shad hard at work

 

 

The boys helped me by finsihing cleaning out the garden for me.  I bought a few more plants and some bulbs (potatoes and onions)  Today was a great day for the garden rainy and overcast.  Perfect for the plants I got in yesterday.  Wish I could have gotten more plants in but had to get some more garden dirt for the garden.  I really love having a garden!  I can't explain why but it is just fun and relaxing to me.   Square foot garden or box gardening is so easy.  I also do the container gardens too and lots of hanging up plants. 

Please keep praying for Selah!  She will probably have her casts changed this Friday I hope it won't be too hard on her.  Lookiing forward to the casts coming off for good...3 more weeks!

Day 127 FOS ~ What happened to my mind??

Selah had a good night and has had a really good day today.  Maybe she is in less pain or is getting used to the casts.  She had PT this morning and had no issues.  The therapist was even able to get her on her tummy with the help of some pillows.  She seems really relaxed.  Her nurse took her outside for awhile this morning also.

Sam and Sarah also had therapy, which they both loved.  You could work with them all day they'd be happy.

Shad and Steve had a Science project, called...cleaning the garden:)  Oh I love homeschool:) LOL  I really think they learn alot in doing work in the garden.  They learn character traits as well as actual real stuff that they can use all their lives.  I'm all about being as self sufficient as possible.  I think everyone should have some sort of garden.  It's a great thing to walk out your door and gather veggies and herbs for dinner!  We still have lots of work to do to get the garden back and ready for spring.  Believe it or not I have collard plants from last summer still growing.  I cut them down and cooked two big pots of collard greens.  Also after TWO years I actually have some asparagus growing!!!  The plant takes two years before it produces.  I can't believe it actually has some growing when you factor in how long we were gone last year and the garden didn't get alot of attention.  I LOVE gardening!!!!!  (btw, do NOT worry- the boys have REAL curriculum that they follow!  I'm not unschooling them, not at all!!)

So a good productive day.  I even cooked the filling for my Italian Pie just got to put it in the pie shell and pop it in the oven for supper.  I'm still so far behind on things I need to do, I had my current ADD way of doing things....I'm all about doing something, then a new thing pops and I'm focused on that for the moment and forget about the first task!  I'm driving myself BATTY!   I have no idea how to even focus at this point in my life...I often wonder am I the same person who got a dossier together in just a few days?  REALLY?  Who took over my brain?  I have a GIANT bag of paperwork to work on....I have a file cabinet to work on....oh my gosh there is so much to do....Each step requires a hundred little steps and that is what stops me.  I can never get through all the steps.  When I say I have NEVER been like this.....I have never been like this!  Right before we left for Ukraine last year, I got a big "brain freeze" I couldn't pack or do the day to day stuff I needed to do.  I thought that was bad and unlike me, THIS is one hundred times worse.....  I have no idea what is going to happen to get me through this.  It's like being paralyzed.  I'm trying to do some of the "outer edge" stuff like work on my garden, clean out the bathroom shelves ( I told you I have a real problem)  so maybe I'll feel like something is in order, so I can move on to real stuff that needs to be done.....  I don't know.....  Again that minor in Psychology /Pastoral Counseling comes in again.  I'm really good at diagnosing myself, wish I could bill my insurance LOL

Please continue to pray for Selah.  I was giving her kisses today and she turned her head towards me:)  I don't think we're going to see alot of new things till she is off the extra meds and her casts are off but I'm ready for some things!