"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Tuesday, August 27, 2013
Day 2 HBOT
My Facebook post...
Whew another long but good day.... Contacted BCBS fro an external review of our case, Selah had HBOT in the morning, then we came home and did a LONG interview with the Tampa Trib. They will be running a story on the insurance issue tomorrow and a feature story on Sunday. Then picked up Shad, took Selah back to Hbot and came home to cook supper...Left a glass dish on a burner...glass all over the kitchen....TOMORROW Will Weatherford the Florida Speaker of the House is coming by to meet us after the morning HBOT session. He and his aide are actually coming to our house. Lots of phone calls back and to, Tallahassee is reconsidering our case, still no final word.....
So that is my day in a nutshell....
I am so tired! I'm going full speed ahead from the time I get up till the time I go to bed. It has made the FAST easy LOL I don't have time to eat:)
Everything that is going on is exciting but my whole focus is on Selah right now. We are just praying that God will use this oxygen therapy combined with the fish oil she has been on for months now to help her brain begin healing.
We've talked with her nurses and her main therapist and we really feel like between all of us, we are realistic and we know Selah. If we see some change, that we all agree on, we will be thrilled! I am so hopeful!!
Our family is doing good on the Daniel Fast, as I said, I don't eat till supper anyhow with all the running around I do. And when I get busy I forget to eat anyhow..... Tomorrow is going to be a busy day also so this will be short as I tried to get everyone to bed early.... that is my goal at least:)
Thanks for your prayers for Selah!!!!!!
Monday, August 26, 2013
Great First Day of HBOT
Last night I could hardly sleep. I was up with Selah some but slept fitfully. I felt like a kid on Christmas morning, waiting to open presents. When I dreamed off & on, the dreams were all about Selah and in the dreams, she had recovered. In one dream, Jon and I were worried about her pulling out her trach and was going to call our Doctor W! They were real dreams in which we were thrilled and having to figure out how to deal with our recovered child till we could get her to the doctor and have the trach and gtube removed:) Good happy dreams:) She was herself...exactly who she was before the accident and this time, the dreams didn't make me sad.
So we got to the clinic early, filled out paperwork (that I had forgotten to bring with me) met with the news reporter from ABC Action news....all the while I had butterflies in my stomach. ONe thin we had to worry about was whether she could clear her ears in the chamber, if not she would be taken out and would have to have tubes put in. Thankfully Selah grimaces if she is in any pain. Plus they checked her ears to see how they looked before going in. She also had to have her blood sugar checked and she didn't appreciate that at all!
Selah getting her sugar checked
Jon speaking to the reporter
Selah right before she went in...
She's in!!
She had NO problems, her ears looked the same (no redness, swelling or bruising) when she came out and she was swallowing when they were taken the pressure down just like she needed to do! She didn't make any grimaces either! Good signs!
She did great, had no issue with needing to be suctioned, it went without a hitch! Thank God!
This morning before we left she had needed her blood pressure meds and her valium dose. She was very sleepy until she went in and then she was watching the TV, looking around , very aware!
So we did one session at 10:45am (we got a late start, I had to run home for her gtube extension) and then the second session is at 3:45 pm. They last 1.5 hours. So it takes the whole day, by the time I got her home from the first session , cooked for the kids, fed Sarah, picked up Shad from school, it was time to go back to the second session! It will be a long 3 weeks! But we are so glad to do it for Selah!
The news interview went good and I'll post it when it comes on line.
We have been so blessed with Mike Fasano and Will Weatherford help with our insurance issue. Mike got the ball rolling. He is now our newly appointed Tax Collector but was previously in the State House. Will Weatherford is our State Rep and I believe the leader of the House of Reps in Tallahassee. They are both working HARD to try and get our nursing situation fixed. Will Weatherford's office stated to the reporter that our case is being discussed now and looked into by the State. Blue Cross (although they are the first ones to deny us nursing,) are now putting the blame on the State for us losing our nursing.... Since Jon is a state worker and his insurance is through the State of Florida, they have the final say so in appeals. We continue to be grateful for the wonderful help our daughter has received by these men and we pray that there will be a final positive outcome for her!
We also pray that God will use the HBOT to heal her little brain, I'd be THRILLED if we had to give up nursing care because our daughter was healed!!!!!!!!!!!!!! That would be the best outcome ever!
So we began our fast today.....I feel like I'm preparing food for 3 different families.... one thing for Sam and Sarah, one thing for Shad and Steve and one thing for me and Jon. Surely Daniel had it easier as a single man LOL!!!
Thank you for your thoughts, prayers. comments, and emails. I'm hoping to go to bed early tonight (we have a nurse YEAH! Our dear Rose is back) and I'm going to sleep all night!! First full night sleep since Wednesday night for us.
Please think of and pray for Selah tomorrow!!
Sunday, August 25, 2013
Blessed be the name of the Lord
Another crazy start to the day. Last night Selah did great, didn't have to get up with her but once:) YEAH! Her secretions are less so I don't worry about the oxygen therapy tomorrow as much. She has to be in a chamber by herself. We can see her but the chamber is pressurized and she can't be brought up too quickly (or the pressure changed too quickly) she has to go 1.5 hours without having to be suctioned which is what she normally does..... It looks like she will do fine now!
Well I didn't get up till almost 10 am! Our church starts at 11 am but I have to get all the little ones up, fed and ready. Jon has a service at the prison every Sunday morning. I normally get up with him but I have just felt so tired... so once I was up, I was running as fast I could to have everyone ready!
Our worship leader had had a hard week at work and various things and his song selection really were songs about trusting God through hard times. All the make up I'd put on so quickly, was soon washed right off as I wept through the songs. We started out with
BLESSED BE THE NAME OF THE LORD
Blessed be Your name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in
Lord, still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the "world's all as it should be"
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
You give and take away
You give and take away
My heart will choose to say.
"Lord, blessed be Your name."
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name
Blessed be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed be Your name
Every blessing You pour out
I'll turn back to praise
When the darkness closes in
Lord, still I will say
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be Your name
When the sun's shining down on me
When the "world's all as it should be"
Blessed be Your name
Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name
You give and take away
You give and take away
My heart will choose to say.
"Lord, blessed be Your name."
This is a song comes from the book of Job. Job lost everything and yet he still praised the Lord. As a Christian this is how we should live. It's not easy, but I've seen folks who could stand at a funeral of a love one and still praise God, I've seen folks dying from a painful terminal illness who could still praise God, I've seen folks who have lost jobs, lost their homes and still they have chosen to praise and trust God. Speaking for myself, that is the type of Christian that I want to be. I don't want to blame God when life goes bad. I don't want to rail against heaven....I want to trust Him, not matter what is happening in my life.
This morning I remembered singing this is the Pentecostal Church in Torez Ukraine with brothers and sisters of like faith. Of course we didn't speak the language but we heard the tune and knew it and sang along with them. The folks in that church, many had lived through dark days of Communism. Many are unemployed and live in a country that doesn't have the "fall back plan " of welfare like the US has. But yet they sang with their whole hearts. I cried that morning in their church and I cried this morning in mine.....It's a deep song.......
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Then we ended with one of favorite hymns
TAKE YOUR BURDEN TO THE LORD AND LEAVE IT THERE
http://www.youtube.com/watch?v=HfNAxZV19Q4 (this is the best video I could find of this song. it's not quite how we sing it but it's nice)
If the world from you withhold of its silver and its gold,
And you have to get along with meager fare,
Just remember, in His Word, how He feeds the little bird;
Take your burden to the Lord and leave it there.
Leave it there, leave it there,
Take your burden to the Lord and leave it there.
If you trust and never doubt, He will surely bring you out.
Take your burden to the Lord and leave it there....
If your body suffers pain and your health you can't regain,
And your soul is almost sinking in despair,
Jesus knows the pain you feel, He can save and He can heal;
Take your burden to the Lord and leave it there.
When your enemies assail and your heart begins to fail,
Don't forget that God in Heaven answers prayer;
He will make a way for you and will lead you safely through.
Take your burden to the Lord and leave it there
When your youthful days are gone and old age is stealing on
And you have to get along with meager fare,
Just remember, in His Word, how He feeds the little bird;
Take your burden to the Lord and leave it there.
Leave it there, leave it there,
Take your burden to the Lord and leave it there.
If you trust and never doubt, He will surely bring you out.
Take your burden to the Lord and leave it there....
If your body suffers pain and your health you can't regain,
And your soul is almost sinking in despair,
Jesus knows the pain you feel, He can save and He can heal;
Take your burden to the Lord and leave it there.
When your enemies assail and your heart begins to fail,
Don't forget that God in Heaven answers prayer;
He will make a way for you and will lead you safely through.
Take your burden to the Lord and leave it there
When your youthful days are gone and old age is stealing on
And your body bends beneath the weight of care;
He will never leave you then, He'll go with you to the end.
Take your burden to the Lord and leave it there
He will never leave you then, He'll go with you to the end.
Take your burden to the Lord and leave it there
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The lines I highlighted seemed to speak to me regarding our situation with Selah both her health and the situation with the nursing. God has been faithful to us and I know He will continue to be faithful.
I've had moments when my heart has began to fail, scary moments when I couldn't see HOW we'd make it BUT God was there.....and I know He will continue to be there for us.
We are getting ready for tomorrow and for starting our Daniel's Fast. We are devoting the next 21 days to Selah. My days will be full with taking her twice a day for 1.5 hours of HBOT. Transporting Selah is so hard. We really need to get a wheelchair accessible van but you know right now I'm focused on Selah....I'd so much rather see her get better!
We feel that by giving her all we can medically, we should also give to her spiritually....and by fasting, we feel God will see our commitment, that is why we are asking others to join us. In whatever way you can, to pray and to fast for her. I understand there are folks who can not fast, so please don't feel like I'm trying to put something on you!!! But if you feel to do so, in any way, the full Daniel fast, a meal or even fast from soft drinks.....whatever and pray for Selah during that time. We would appreciate it so much!!!
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So today we went out to eat after church....I said it was our last meal:) We love to go out with folks from our church, it is our time to be able to sit and talk together.
We often go to Sunrise Eatery.
Doesn't it look like a HAPPY place?
It is! The owner John and his staff are the greatest:) They know you by name, know your family and really want to give you a great eating experience! The place is packed always...but they try and seat you as soon as possible. The food is great, good value for the money and varied. The wait staff is wonderful, always. I have never had a bad experience there and evidently no one else has either:)
One thing I love about them is they really help us get seated with the kids and get their drinks and orders right in. Sam doesn't have much patience so it helps to have his plate in front of him:) A lot of the staff come by our table just to speak to us, even if they aren't serving us. It's just always a good relaxing time with good food and good people!!!
So if you are ever in Zephyrhills Florida....go and eat at Sunrise Eatery on 301....you might even see us there:)
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Can you see them? They are both in camouflage ....LOL
Thanks for your prayers! Think about Selah tomorrow at 10:45 and again at 3:45.... thank you!!!!!!
Saturday, August 24, 2013
Yard work and a snake!
Last night we were up with Selah a lot, suctioning her. Thankfully she is no worse but we usually only have to suction her once a night. I'm not even sure how many times we suctioned her last night. It was a long night. Remarkably I went ahead and got up early and got some work done. Jon had to be at the prison for some new state wide initiative involving inmate's children early this morning. He had to wear a suit, lots of big wigs there. We don't have a night nurse tonight either but our day nurse does stay late and she always has Selah settled before she leaves. I think Jon and I will be crashing this afternoon!
Thankfully Selah is back on the Tobymixion . I called the HBOT clinic today and they are ok with her coming on Monday as long as she doesn't get any worse.
Today I'm going to go and buy groceries for our Daniel Fast. The boys want to join it. I'm interested to see how THAT will go. Steve & Shad are not quite veggie eaters LOL! But I love their heart for their sister!
Steve has worked for 2 days to clean out my garden. Once I harvested most of the summer plants, I sort of let it go. We've had so much rain, our yard is like a jungle this year. This was a huge job and I actually paid him to do it LOL I don't believe in paying kids for chores...usually...but this job made me want to CRY! It's still not completely done as I need to put down mulch but I'm not afraid of getting bitten by a snake now LOL!
he found this worm on a weed....
Early this morning!
Still got some work to do but the worst of it is done:)
Our next door neighbor came and mowed our lawn and the church, worked on our weed whacker and gave us several dozen fresh eggs from his hens! What a blessing! Our lawn mower is getting serviced and it's taking forever to get it back! Our yard was looking like a jungle for real. If you knew us back two years ago, we had a gang who lived next door. They had an underground bunker and were growing pot. Then they had a shoot out with the cops, robbed a bank and got caught in Colorado....it was interesting. I'd knew them all since they were kids and they weren't "bad" kids just a mess.... We LOVE our neighbors now:) There's only 4 families right near each other and we all keep an eye out for each other. Someone asked me if I worried if someone would break into our house while we were in NY for all those months and I said "NO we have 3 sets of neighbors who have been dying to shoot someone LOL"
Here is Steve with a dead snake he had found a few days ago. He had put it by the door of the church LOL I never noticed it. Last night I actually thought something trying to run over my foot when I locked it up in the dark last night. But I didn't worry about it. Shad saw the snake today and then I thought I'd stepped on it and killed it. Actually looking at the snake, I think it is a rattler! It's head and tail are gone but the marking look more like a rattler than a garden snake.
Please remember Selah in your prayers. Put her on your church's prayer list if you have one. Thank you so much!
Friday, August 23, 2013
Whew What a Day!
Last night we did not have a nurse so we were up with Selah some. we fell asleep at 4am....and slept till 9 am! Great right? NO! Someone was supposed to take Shad to school at 8 am!!!!! So thus we began our day.....
Then we rushed to get up, get him ready...Jon goes out the door with him as I'm trying to get ready to meet a friend in Lakeland....They get to school....and Shad realizes he left his books at home....turned around came home, by that time it was 10 am.... we then had to get the little ones up and Steve had committed to work on my garden ( I am so ashamed of it-overgrown with weeds) So at this point I just said for Shad to do his work at home. At his school, kids work on an individual pace anyhow so he could do everything at home.
I left to drive to Lakelend and got a call from CBS news, they wanted to do a story on our situation with Selah's insurance. So I agreed to meet them at 2pm at home. In the meanwhile I called home and made sure everyone picked up at home!!!
On the way home got a call from the writer who wrote the story on us in the Tampa Bay Times, I find out the former state rep Mike Fasano who is newly appointed as the Pasco Co Tax Collector has really taken our story to heart and is contacting the state about us and encouraging all our elected officials to help us out! We do not know this man and yet he is stepping out to help us! I'll never complain about taxes again:) We hope to thank him personally at some point!!!
One of the points Mike Fasano made is that we might be forced to put Selah in a nursing home. That is a scary thought. Although we are eligible for Medicaid this month, we are so on the edge that any small change can make us ineligible for Medicaid so it does not good for us to even think about depending on Medicaid to pay for nursing. In October Steve turns 18 years old and then we have one less dependant....at that point, we very well could lose our eligibility for Selah's Medicaid, if that happened...we'd be out of nursing altogether! We are middle class enough, that we barely qualify for Medicaid for our children who are handicapped. At one point Sam lost it as his secondary insurance for over 3 years, due to a small raise in my husband's pay. We have been grateful for the help we have received that has helped us with some co-pays but we depend on Blue Cross as our primary insurance and will continue to depend on it.
SO if we were to lose our coverage with Blue Cross, then we lose our secondary with Medicaid which is based on income/dependents...then we'd have NO nursing and how would I cope with three handicapped children? It could really compromise Selah's safety. What if Sam had a appointment? Would I try and bundle up all the kids and all of Selah's equipment and take her? I couldn't leave her with Steve....I can not imagine the logistics of our life if we did not have nursing care. I run all day as it is, and I'm glad to do so BUT I'm only one person!!! I have NO one to help me during the day when Jon is at work and guess what he has to work and be on the grounds of the prison 40 hours a week.
Obviously when we adopted the girls, we realized where they were and the kind of care they needed. We could supply that care. In the months from May-August when the accident happened, I never once even had a baby sitter for the little kids...if I went somewhere, they went with me, pretty much all of them unless Jon was home! It was great...but back then, Selah could walk some and had no extra equipment....Life is so different now!
I had someone say "well you signed on for this" After I finished pounding their head into the ground.....Oh just kidding..... I said "you can never "sign on" for tragedies" The life we expected, changed.... and now our needs have changed with it.
I so feel our situation with this insurance denial is very much aligned with the Department of Justice's lawsuit against the State of Florida and its' care for its most needy children.
Here is the news article .... http://www.tampabay.com/news/health/pasco-tax-collector-mike-fasano-steps-into-the-fight-between-state-agency/2138002
Girl who nearly drowned in Erie Canal gets help from Mike Fasano by Lisa Buie
Then we rushed to get up, get him ready...Jon goes out the door with him as I'm trying to get ready to meet a friend in Lakeland....They get to school....and Shad realizes he left his books at home....turned around came home, by that time it was 10 am.... we then had to get the little ones up and Steve had committed to work on my garden ( I am so ashamed of it-overgrown with weeds) So at this point I just said for Shad to do his work at home. At his school, kids work on an individual pace anyhow so he could do everything at home.
I left to drive to Lakelend and got a call from CBS news, they wanted to do a story on our situation with Selah's insurance. So I agreed to meet them at 2pm at home. In the meanwhile I called home and made sure everyone picked up at home!!!
On the way home got a call from the writer who wrote the story on us in the Tampa Bay Times, I find out the former state rep Mike Fasano who is newly appointed as the Pasco Co Tax Collector has really taken our story to heart and is contacting the state about us and encouraging all our elected officials to help us out! We do not know this man and yet he is stepping out to help us! I'll never complain about taxes again:) We hope to thank him personally at some point!!!
One of the points Mike Fasano made is that we might be forced to put Selah in a nursing home. That is a scary thought. Although we are eligible for Medicaid this month, we are so on the edge that any small change can make us ineligible for Medicaid so it does not good for us to even think about depending on Medicaid to pay for nursing. In October Steve turns 18 years old and then we have one less dependant....at that point, we very well could lose our eligibility for Selah's Medicaid, if that happened...we'd be out of nursing altogether! We are middle class enough, that we barely qualify for Medicaid for our children who are handicapped. At one point Sam lost it as his secondary insurance for over 3 years, due to a small raise in my husband's pay. We have been grateful for the help we have received that has helped us with some co-pays but we depend on Blue Cross as our primary insurance and will continue to depend on it.
SO if we were to lose our coverage with Blue Cross, then we lose our secondary with Medicaid which is based on income/dependents...then we'd have NO nursing and how would I cope with three handicapped children? It could really compromise Selah's safety. What if Sam had a appointment? Would I try and bundle up all the kids and all of Selah's equipment and take her? I couldn't leave her with Steve....I can not imagine the logistics of our life if we did not have nursing care. I run all day as it is, and I'm glad to do so BUT I'm only one person!!! I have NO one to help me during the day when Jon is at work and guess what he has to work and be on the grounds of the prison 40 hours a week.
Obviously when we adopted the girls, we realized where they were and the kind of care they needed. We could supply that care. In the months from May-August when the accident happened, I never once even had a baby sitter for the little kids...if I went somewhere, they went with me, pretty much all of them unless Jon was home! It was great...but back then, Selah could walk some and had no extra equipment....Life is so different now!
I had someone say "well you signed on for this" After I finished pounding their head into the ground.....Oh just kidding..... I said "you can never "sign on" for tragedies" The life we expected, changed.... and now our needs have changed with it.
I so feel our situation with this insurance denial is very much aligned with the Department of Justice's lawsuit against the State of Florida and its' care for its most needy children.
Here is the news article .... http://www.tampabay.com/news/health/pasco-tax-collector-mike-fasano-steps-into-the-fight-between-state-agency/2138002
Girl who nearly drowned in Erie Canal gets help from Mike Fasano by Lisa Buie
ZEPHYRHILLS — Mike Fasano might have stepped out of the Legislature and into the Pasco Tax Collector's Office, but he's still willing to spar with Florida agencies for Pasco residents.
The former lawmaker has taken up the cause of Selah Clanton, a developmentally delayed 9-year-old who was left severely brain damaged last year when her stroller rolled into the Erie Canal. Florida Blue, her family's health insurance company, recently notified her parents that it would no longer pay for 24-hour nursing care in their home.
Jon and Yvonne Clanton appealed. Jon Clanton is a chaplain at Zephyrhills Correctional Institution, so the agency that oversees state employees' benefits reviewed the case.
On Wednesday, the Division of State Group Insurance upheld Florida Blue. The Clantons vowed to appeal further.
The state's decision drew outrage from Fasano.
"What they want to do is force this girl into a nursing home, and that is a disgrace," said Fasano, who sent emails to state Sens. John Legg, R-Trinity, and Wilton Simpson, R-Trilby; state Rep. Richard Corcoran, R-Land O'Lakes; and House Speaker Will Weatherford, R-Wesley Chapel.
"I strongly encourage you and the other members of the Pasco County Legislative Delegation to come to the support of Selah Clanton and ask the Division to reconsider its ruling and allow the in-home care to continue."
Fasano's letter comes a month after the U.S. Department of Justice sued the state, alleging that it violates the Americans With Disabilities Act in its administration of its service system for children with significant medical needs. It said nearly 200 children were unnecessarily segregated in nursing facilities when they could be served in their family homes or other community-based settings.
"To think he would take the time to help someone he doesn't even know is amazing," Yvonne Clanton said Friday.
Fasano, 55, a New Port Richey Republican, was recently appointed as Pasco County's tax collector after incumbent Mike Olson died in June. He served in the House for eight years and the Senate for a decade before again winning a House seat last year.
Lisa Buie can be reached at (813) 909-4604.
Is that an amazing story or what????????
The former lawmaker has taken up the cause of Selah Clanton, a developmentally delayed 9-year-old who was left severely brain damaged last year when her stroller rolled into the Erie Canal. Florida Blue, her family's health insurance company, recently notified her parents that it would no longer pay for 24-hour nursing care in their home.
Jon and Yvonne Clanton appealed. Jon Clanton is a chaplain at Zephyrhills Correctional Institution, so the agency that oversees state employees' benefits reviewed the case.
On Wednesday, the Division of State Group Insurance upheld Florida Blue. The Clantons vowed to appeal further.
The state's decision drew outrage from Fasano.
"What they want to do is force this girl into a nursing home, and that is a disgrace," said Fasano, who sent emails to state Sens. John Legg, R-Trinity, and Wilton Simpson, R-Trilby; state Rep. Richard Corcoran, R-Land O'Lakes; and House Speaker Will Weatherford, R-Wesley Chapel.
"I strongly encourage you and the other members of the Pasco County Legislative Delegation to come to the support of Selah Clanton and ask the Division to reconsider its ruling and allow the in-home care to continue."
Fasano's letter comes a month after the U.S. Department of Justice sued the state, alleging that it violates the Americans With Disabilities Act in its administration of its service system for children with significant medical needs. It said nearly 200 children were unnecessarily segregated in nursing facilities when they could be served in their family homes or other community-based settings.
"To think he would take the time to help someone he doesn't even know is amazing," Yvonne Clanton said Friday.
Fasano, 55, a New Port Richey Republican, was recently appointed as Pasco County's tax collector after incumbent Mike Olson died in June. He served in the House for eight years and the Senate for a decade before again winning a House seat last year.
Lisa Buie can be reached at (813) 909-4604.
Is that an amazing story or what????????
Had a great lunch with a new friend and then rushed home to find the news crew already at my house. (this is why you NEVER leave your house messy LOL) We did an interview that went great. We did not get to see it at 5:30 tonight because we had a huge rainstorm and it knocked out our TV.
http://www.wtsp.com/video/default.aspx?bctid=2625329964001&odyssey=mod|newswell|text|FRONTPAGE|featured And our story is here... hope you can see it. I can not get my computer to play it..... The joy of living in the country...all our electronics is on satellite so if it is bad weather, everything goes down!
As soon as the news folks leave....Selah takes a turn for the worse. She had been having some extra secretions but we weren't worried...until her heart rate started soaring. She came close to having a storm but thankfully her nurse was able to give her the meds she needed to calm her down. I called the doctor and she put Selah back on the antibodic inhaled med! We were very afraid we would have to take her to the hospital as she got sick so quickly BUT having a nurse here, we were able to deal with the issues, and she is still at home (fingers crossed that tonight will be a good night!!)
At the same time our Occupational Therapist is here for Sam and Sarah (and they both did a good job working on feeding themselves!)
We then had to drive to Brandon in a monsoon to pick it up since that is the only pharmacy where we can get this amazing medicine from. Hopefully that will do the trick for her. If not she won't be able to start the Oxygen Therapy on Monday. PLEASE pray for her!!!!!!!!!
Sam on his truck!!!!
Shad and Sam playing
These sweet pictures are from last night. The boys must have played for 30 minutes in there. If you look in some of the pictures, you can see Selah's room and bed...even tho she can't play like she used to, it's so good to have her near her whole family.
Today has been a crazy busy day.....I'm amazed daily at the turns my life takes. I sometimes feel I'm on a roller coaster and can't get off...just got to go with the ride....LOL That was what today felt like to me!
Thursday, August 22, 2013
Long Day-Short Post
Long busy day with dentist/ortho appointments and lots of calls to various elected officials. The ball is rolling..... I also got an email from Tampa Trib and we will be doing an interview with them on Tuesday morning. We'll do an interview on Monday morning with ABC Action News.... Both Bay News 9 and the Tampa Bay Times are doing updates on our situation. I am so appreciative for the attention our situation is getting!!!!
If you can help in anyway. please let me know!
Getting excited about Monday, can't wait to get Selah started in the HBOT! Yesterday I went through her closet and got all her outfits ready, then I find out she has to wear a certain medical outfit like scrubs LOL. I'm not scheduling anything during that time except for her treatments. It will make for long days as we do not have a handicapped accessible van and it is hard to transport her but I'm so glad to be doing it for her. It will be worth the inconvenience to be able to do this for her. I hope she feels that same, she tends to get upset but we'll see how things go....
https://www.facebook.com/selahclanton is the Facebook page for updates on fasting and praying for Selah during treatment. Thank you all who have responded!!!! I'm getting nervous now about the fasting (on my part) I did go and buy some veggie stuff today. It will be challenging for me. Thanks to all who plan to participate in various ways....!!!!!
Thought I'd leave you with some Sarah pictures. Look how she is sitting, crisscross applesauce:) it's good for her to sit like this and not in a W shape with her legs to the side. We are working with her to remind her to sit this way. It will help her balance to improve.
If you can help in anyway. please let me know!
Getting excited about Monday, can't wait to get Selah started in the HBOT! Yesterday I went through her closet and got all her outfits ready, then I find out she has to wear a certain medical outfit like scrubs LOL. I'm not scheduling anything during that time except for her treatments. It will make for long days as we do not have a handicapped accessible van and it is hard to transport her but I'm so glad to be doing it for her. It will be worth the inconvenience to be able to do this for her. I hope she feels that same, she tends to get upset but we'll see how things go....
https://www.facebook.com/selahclanton is the Facebook page for updates on fasting and praying for Selah during treatment. Thank you all who have responded!!!! I'm getting nervous now about the fasting (on my part) I did go and buy some veggie stuff today. It will be challenging for me. Thanks to all who plan to participate in various ways....!!!!!
Thought I'd leave you with some Sarah pictures. Look how she is sitting, crisscross applesauce:) it's good for her to sit like this and not in a W shape with her legs to the side. We are working with her to remind her to sit this way. It will help her balance to improve.
Look at Smiley country girl. I love this outfit that a friend gave her.
Sarah has had quite a bit of a cold lately and that has made her grumpy which only means for her, she is not as giggly...even being sick, she is still so happy. I've never seen such a happy girl.
Wednesday, August 21, 2013
Denail Letter
We got a certified letter from the Florida Department of Management Services State Group Insurance denying our Level II appeal on Blue Cross's denial of Selah's nursing. since my husband works for the state, the appeal went to the FDMSSGI for the appeal. The reason they cite "is because the care Selah gets at home, can be performed by family members and is not medically necessary to have a licensed nursing professional to care for her."
Again we are appalled....even tho every doctor involved in her care wrote letters stating the great need for nursing care for this child, some NON medical person makes a decision that she does not need nursing..... However the interesting thing is Medicaid has approved her for 24/7 nursing care.... so one state agency says she needs NO nursing care and another one says she needs 24/7 care BASED on the doctors orders.
We strongly believe that Blue Cross/Blue Shield is aware we qualify for Medicaid and they rather that Medicaid pick up the cost of her nursing care. We believe this is fraud. Obviously the Florida Dept of Management Services that oversees the State Workers would tend to also go with Blue Cross's decision as it is cheaper to have Medicaid pay for her nursing than to have BC do it.
The Department of Justice has filed a lawsuit against the state of Florida for not having home health care available so children can stay in their homes and not go to a nursing home. You can read about it here.... http://www.justice.gov/opa/pr/2013/July/13-crt-823.html or here... http://www.tampabay.com/news/courts/justice-department-files-lawsuit-against-florida-over-medical-care-for/2132566
Our situation is not quite the same but I feel that our private insurance -which is STILL a state insurance (since Jon is a state worker) is trying to push Selah's care over onto Medicaid.
I have contacted the Department of Justice, and will contact both the Governor's office and the Insurance Commissioner tomorrow. I have also contacted some friends in the media and we will be really pushing this publically. If you have any contacts with any news organizations, please contact them for us, tell them our story and this new struggle and ask them to contact us. ABC Action News will be doing a story on this on Monday. I've contacted a friend at FOX Tampa Bay and will be contacting the other local folks tomorrow.
We now will file a petition for a formal hearing. I have 21 days from today to file it. In the mean while I will be contacting everyone who could help us on this. If you can help in any way, please let me know.
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This afternoon our new friends from the Bahamas came for lunch and a playdate:) We had three little kids with Peter's Anomaly in the house! Our friends have taken their son all over the world for various treatments and it was just amazing to see how well he does. We had a good time, lots of laughs, we "spoke the same language" They understand many of the things we have been through because they also have gone through it with their child. It was a blessing to be able to spend some time with them!!!! We are so encouraged by the help he has received at the HBOT (Hypobaric Oxygen Therapy).
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https://www.facebook.com/selahclanton here is the Facebook link for Selah. Please join and pray and fast something for her while she is in treatment next week. I am so encouraged by all the messages I've gotten from folks who are going to be involved in some way. If you can't do a Daniel Fast, or a regular fast, even fasting a soda or something you crave and saying a prayer for Selah would be a blessing. I've never done a Daniel Fast and I hope I am not so grumpy that I invalidate the whole prayer and fasting LOL That is why I'm still going to drink tea and coffee:) You know I'd love for her just to be healed and NOT need nursing care at all anymore!!!! That would be the biggest blessing!!!!
Thank you all for all you do, you all have prayed many prayers for Selah and have never forgotten her or our family! Thank you for that!!!!
Again we are appalled....even tho every doctor involved in her care wrote letters stating the great need for nursing care for this child, some NON medical person makes a decision that she does not need nursing..... However the interesting thing is Medicaid has approved her for 24/7 nursing care.... so one state agency says she needs NO nursing care and another one says she needs 24/7 care BASED on the doctors orders.
We strongly believe that Blue Cross/Blue Shield is aware we qualify for Medicaid and they rather that Medicaid pick up the cost of her nursing care. We believe this is fraud. Obviously the Florida Dept of Management Services that oversees the State Workers would tend to also go with Blue Cross's decision as it is cheaper to have Medicaid pay for her nursing than to have BC do it.
The Department of Justice has filed a lawsuit against the state of Florida for not having home health care available so children can stay in their homes and not go to a nursing home. You can read about it here.... http://www.justice.gov/opa/pr/2013/July/13-crt-823.html or here... http://www.tampabay.com/news/courts/justice-department-files-lawsuit-against-florida-over-medical-care-for/2132566
Our situation is not quite the same but I feel that our private insurance -which is STILL a state insurance (since Jon is a state worker) is trying to push Selah's care over onto Medicaid.
I have contacted the Department of Justice, and will contact both the Governor's office and the Insurance Commissioner tomorrow. I have also contacted some friends in the media and we will be really pushing this publically. If you have any contacts with any news organizations, please contact them for us, tell them our story and this new struggle and ask them to contact us. ABC Action News will be doing a story on this on Monday. I've contacted a friend at FOX Tampa Bay and will be contacting the other local folks tomorrow.
We now will file a petition for a formal hearing. I have 21 days from today to file it. In the mean while I will be contacting everyone who could help us on this. If you can help in any way, please let me know.
--------------------------------------------------------------------------------------------------------------------------
This afternoon our new friends from the Bahamas came for lunch and a playdate:) We had three little kids with Peter's Anomaly in the house! Our friends have taken their son all over the world for various treatments and it was just amazing to see how well he does. We had a good time, lots of laughs, we "spoke the same language" They understand many of the things we have been through because they also have gone through it with their child. It was a blessing to be able to spend some time with them!!!! We are so encouraged by the help he has received at the HBOT (Hypobaric Oxygen Therapy).
__________________________________________________________________________________
https://www.facebook.com/selahclanton here is the Facebook link for Selah. Please join and pray and fast something for her while she is in treatment next week. I am so encouraged by all the messages I've gotten from folks who are going to be involved in some way. If you can't do a Daniel Fast, or a regular fast, even fasting a soda or something you crave and saying a prayer for Selah would be a blessing. I've never done a Daniel Fast and I hope I am not so grumpy that I invalidate the whole prayer and fasting LOL That is why I'm still going to drink tea and coffee:) You know I'd love for her just to be healed and NOT need nursing care at all anymore!!!! That would be the biggest blessing!!!!
Thank you all for all you do, you all have prayed many prayers for Selah and have never forgotten her or our family! Thank you for that!!!!
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