Day 9 HBOT New Battle...

I'm so happy I don't have to think up a blog title LOL....

So today Selah did something absolutely new.... When our nurse Aaron was working with her legs, she stuck out her tongue.  I know that doesn't sound like much BUT she did the same NEW type of movement repeatedly.   We were all shocked.  It was a specific movement that speech had wanted to see as it seems to indicate more control of the mouth.  Our nurse was really excited about it. 

So we will see what happens from here.....tomorrow is the half way point in her treatments....

She continues to tolerate the HBOT really good.  It doesn't stress her and she is swallowing enough to clear her ears, they continue to look fine.  I'm so glad she didn't have to get tubes for her ears to do this. 

This afternoon I met with a community leader who had met my husband at a function.  She read our story in the paper and wants to help do some fund raising for our family.  I'll let you know as things are set up.  It's encouraging when people want to help out.....

We still do not have an answer in regards to our nursing situation.  We hope to hear something tomorrow. 

 

Thought you'd get a kick out of what I saw when I went to the post office today....yep we live in the county...bunch of wild chickens right in town, living in the woods by the post office LOL

 

 

So my projects for this week, besides HBOT 2x a day for Selah....and regular life...is to get Steve enrolled in Driver's Ed....  And get the three little ones enrolled in school.  I'd been meaning to call about that for a few days but I spend basically 4 hours a day at therapy with Selah, plus I pick up Shad in between...and everything is such a drive for us. 

 

We have had such a FIGHT with the public school system to get Sam services from the time we moved here.  Everything came with a fight and I have so many stories....CRAZY things from a home bound administrator who was  a FAILED principal (her school had gotten F's for 6 years in a row and then they put her over homebound and vision services, she was a trip.  ....  Let's just say I was WAY TOO KIND "back in the day"     Then I had a teacher who would tie a rope around Sam's waist and lead him around our yard like a dog. The teacher said it was to train Sam to hold something in his hands, like "pre cane training"  Only thing is I didn't like it and I told him never to do it in public.  So we are at the school for a meeting, he offers to take Sam outside and he ties balloon string around his waist and leads him around the school like an animal... did I mention this school had floor to ceiling windows????   So all the children could see my son being led around like a dog. (btw, I checked with several blind organizations and that is NOT an acceptable or even heard of method to teach visional impaired kids how to use a cane....)     Yeah...I really am a better Christian than I think when I look back at the foolishness I put up with...  My crapometer is out of order now...LOL   I really can not believe how nice I was about it  I should have called CNN!!!!    Although it was not addressed as deeply as it should have been as it happened right before we left for Ukraine and the agreed on plan was that we would get a O & M (Orientation and Mobility)  teacher from the local blind services, Cause you do know that guy nor his supervisor will NEVER have anything to do with any of my children.  Of course by the time we got home from Ukraine, school was almost out...then we had summer and our trip to NY....then the accident.....  so we will see how things go now....

 

Last year Sam was "withdrawn" from school just DAYS ( just FIVE days to be exact!!!!  )   after the accident and the paperwork says he was being enrolled in another state.... WOW!  I can assure you that on August 20, 2012 I was NOT withdrawing my child from school.  At that point, we didn't even know if Selah would live ....  if she did live, they had hoped to have us home to Florida within a month.... so either way we assumed we'd be home before long.     We never requested for him to be withdrawn and we certainly never enrolled him nor planned on enrolling him in another state....  I believe he was "withdrawn" on purpose.  We had a teacher who was nice but let's say not very motivated to work.... with Sam withdrawn, that meant when we came back we 'd have to start all over again with and IEP and getting services together.  Therefore the teacher did not have to come to our house during all the time it took to reenroll him....slick huh?   Let's also say that teacher also will not be working with my family again.......she missed so many "sick days" anyhow that I was going to request another teacher...

 

 

 

 Last  school year, we turned in all the girls' paperwork and Sam's also.  We also scheduled the girls and had their evaluations done.  With all of the hospitalizations Selah had after we had gotten her home, I could not do much more....  And of course I had NO help from the school board although they had been contacted by the Rehab hospital regarding Selah but they did nothing to help me.  There is not even a record of Selah in the public school computer although they had been contacted by the rehab and things were supposed to be started.....in JAUNARY!    And of course we had the girls' evaluations done .....and all three's paperwork turned in.......

 

 

Believe me I get so tired of CRAP!  Over all I am not an angry person, I have lots of friends, most of my friends are old ones I've had since childhood or college.... I tend to keep people in my life.  We have had some great people work with Sam over the years who are like family to us and we stay in touch even tho they've moved or we have....We have a great therapist now and nurses for Selah that we all get along.....  BUT WHEN I COMES TO MY KIDS....  I get so angry when things are not done correctly and I have to deal with people who do not do their jobs.....  Things like this make me mad.  It seems like every time I turn around, I'm having to fight some battle to get my little ones some service or medical help they need. 

 

I run a tight ship when it comes to them.  With Sam, the things we have dealt with the most has been medical and educational.  When I deal with medical stuff, I look for the BEST doctor and that is the only one who I let touch my kids.  I won't put up with anything I think is unsafe or determinatal to them.  With Sam, unfortunately I had years of experience having to weed out bad doctors or nurses....  From the first doctor in the NICU who refused to believe something was wrong with Sam's eyes (btw he lost his medical license to practice because of coming to work DRUNK 3 years after Sam was born....no wonder I am like I am....) I have had to go with my gut and fight for him.  Then we had to fight to get Sam the services he needed...first in therapy and then in school....

 

Steve and Shad have always gone to private school (except for when I homeschooled them last year- and this year for Steve)  So 11 years in school for Steve plus 3 years of preschool and 4 years of school for Shad....NEVER ONCE in those years have I ever had to complain or have a meeting with anyone.... Steve started in a private preschool and went through 4th grade at one school before we moved here...and Shad has been at the same school since kindergarten.....  It amazes me, I have no complaints in all of those school years about a teacher or an administrator in two different private schools....  But yet with Sam's situation....it's been one big battle after another....and now adding the girls to the mix, Oh my....

 

I've learned a lot, and I was WAAAAAAAAAYYYYYYY too nice for too many years  (although I know there are folks who would disagree with that statement LOL) 

 

I have nothing NICE left in me for the record....really nothing nice..... 

 

I'm tired of fighting for my kids but I won't stop.  However from now on, gloves are completely off....    It's time for things to be done correctly. 

 

Day 8 HBOT and Timothy

Happy Labor Day!   Never have quite understood this holiday and it seems slightly Communistic but hey my hubby is home from work and no school:)  Didn't it used to be called Arbor day? 

Today I get to share with you about a special little boy.  His case file has just been approved for international adoption.  As far as I know, this is the first time he has been shared about publically.



Timothy is 12 years old and is blind and has cerebral palsy.  He is a dear child.  Someone who knows him well said

Timothy just turned 12 years old.  He was born without any eyes and has moderate cerebral palsy.  He is a loving affectionate boy.  His favorite thing is HUGS!  He has an excellent memory and enjoys singing and reciting.  Timothy loves interacting with people and is fluent in English.

 

 

I want to see Timothy in a family.  Look at this sweet smart boy....who knows what kind of wonderful possibilities are ahead for him?  He is fluent in English....isn't that amazing?  He knows 2 difficult and completely different languages.  Right now he is in a wonderful situation but he needs a forever family.  Please if you will pray and consider him for your family....   if you are unable to adopt, please pray for him to have a family come and adopt him.   Please repost this, put it on your FB page, your blogs where ever you can....This little guy wants a mom and dad....

 

the funny thing about his picture, is the file opened with the picture lying sideways.  I tried and tried to get it to save so it was an upright picture....I finally gave up and just went ahead and posted it and although it looked wrong in the place where I open pictures for the blog, it saved on here like this:)  I actually said a prayer for it to work....  first time prayer fixed my computer :)  (btw that was a very unprofessional way of explaining my computer use but it was the best I could muster lol)

 

If you are interested, please contact me at theclanton5@aol.com and I will put you in touch with someone who can give you more info.  If anyone steps forward, I will promise to help raise money for your adoption.....

 

 

Selah did fine in HBOT this morning with me.  Jon will take her this afternoon.  We have some family and friends coming for a cook out tonight...I love being with people who have known me forever....you don't have to explain much LOL. 

 

Thank you for praying for Selah and now please add Timothy to you list.....

 

 

 

 

Day 7 HBOT Tampa Trib articles

http://tbo.com/pasco-county/family-struck-by-tragedy-faces-another-fight-20130901/
this is the article about our insurance fight

And this one is a recap of our family's story.

http://tbo.com/pasco-county/zephyrhills-family-battling-back-from-stroller-tragedy-20130901/


I have to say we have had such compassionate news reporters interested in our case since the beginning.  So many times you hear about the news media almost like they are some enemy, but we have found it to be quite the opposite.  They all have shown compassion and care towards our family. 

Today I went with Selah to the AM session ( I got to miss church woohoo..... JUST KIDDENING!  It's just not often a pastor's wife misses church!!!  LOL)    I actually missed being there!

Then we went out to eat with our family and friends.  I ate fish, none of us were sure if fish were included on the Daniel fast but I don't' really like fish but it beat another salad LOL.  I didn't get the wonderful chicken noodle soup at SUNRISE Eatery so I felt like I was still sacrificing some. 

Jon and my brother in law took Selah and the nurse to the PM session.  That was a nice break so I could spend some time with my sister in law, Val and one of our good friends, Jackie.  It was great just sitting around talking with each other.  I tell you sometimes our souls just need that time with good friends!!!


We still aren't seeing any significant change in Selah but remain hopeful.  Thank you for your prayers for her and your positive messages to us!  We are blessed by you guys!

I have another prayer request for you all....
Our dear friends Dan and Charlene who live in the Rochester area have a prayer request.  Dan fell yesterday while hiking with some of their sons, at a state park near there yesterday.  he was transported to Strong's Hospital where Selah spent 4 months at.  Thank God nothing was broke BUT he is in awful pain.  He was released from the hospital today but is considering returning because of the pain.  He is a tough guy and if he is in that much pain, it must be just awful for him.  Please remember him and his family in prayer.  They have always been dear close friends since college to us and were there from Day 1 when Selah had the accident.  We love them all very much!!!!

Day 6 HBOT

I just love when I don't have to think of a name for my post.....LOL

Well another quiet day.....  Steve and I (along with the nurse) took Selah to HBOT this morning.  Then Steve and I went to the Health Food store and got like 8 containers of Hummus:)  They have the best, with no harmful oils in it.  YUM!  That is a great snack!

Jon and the nurse took Selah this afternoon.  Knowing our day is going to be different tomorrow with HBOT and church, I had given the little ones early baths.  Sarah can sit in the bath until she is withered  up!  When Selah got home, she got a bath too.  I feel like supermom LOL!  Even Shad has his shower and it's not even dark outside yet!

But I just remembered, that I didn't stop by the dry cleaners so I'll have to iron Jon's clothes for tomorrow!  CRAP!  I just lost the Supermom title......

Still feeling down, there has been no more of the "startle eye reflex" or whatever you want to call it since Thursday.  I do know skills come and go in kids who are brain damaged.  Sam has a little damage that shows up and he has learned and lost skills several times before he actually kept a specific skill. 


Eric Monier came by to get the last of the yard sale things for the Monier Family Yard sale next week and I was able to give him the check of $420 that you all gave so generously to.  That was NEAT to put it in his hand!  Praying that their yard sale next weekend will make them at least $1000 towards their adoption!

This has been such a crazy month, I started out with a really good blog about our children of the month, two little blind girls in India that Amanda and Chet are adopting.  I haven't pushed their adoption as much as I should have.....    http://myreallifebyyvonne.blogspot.com/2013/08/meet-holmes-family-and-their-new-twins.html     this tells their story.  So far this month we have only raised $200 towards their adoption.  Can we extend this another month?  Let's see if we can't raise some more money for these precious little girls!!!!

Adoption, special needs international adoption is very dear to my heart....  I wish I could have a houseful (well I do have a houseful LOL since our house is small)  But there are so many little ones waiting....they have no hope, I want to bring them hope!

So we are still doing the Daniel Fast but I gave in this morning....I had something sweet....  it was good but I felt guilty but my headache went away!  I'm glad God doesn't demand perfection! 

Please continue to pray for Selah, add her name to your church prayer lists if you have one....thank you all for not forgetting about her......

Day 5 HBOT

Well, a slow day today.  Selah doesn't seem as responsive as yesterday but we are only on day 5 so I'm trying not to be disappointed.  She did seem to watch the DVDs I had brought with us and I love to see that.   I want to see progress but I know we have a ways to go.

This morning Steve went with me and the nurse.  Then after she was put in the chamber we did some errands and went to a thrift store.   They were doing lunch for the community so Steve was happy as he is always hungry and there was even some thing he could eat, since he is doing the Daniel Fast too.

In the afternoon, Jon went with the nurse and I spent time with Sarah.  Just holding her and sitting with her on my bed.  I've felt like I've not spent enough time with her this week.  I think she needed some Mommy time and I needed some Sarah time.  Everything has been so rushed all week long. 

I'm feeling disappointed tonight, I'm so ready to see some major improvements....you can't help but get your hopes up, especially when you see her do something a little different like yesterday. 

Please keep Selah in your prayers...I'll update more tomorrow. 

Day 4 HBOT

Last night Selah did not sleep much and her heart rate was up some.  She does not seem sick at all.  I feel like she might have been awake because she was stimulated by the oxygen therapy.  We were told to expect changes in sleep patterns etc...  I take it as a good sign.

Well, it seems like Selah is having more of a blink response. We were taught at the rehab in Jacksonville to bring two fingers right up to her eye to see if she would blink. She rarely did- maybe once in four tries. Today, she has responded just about every time I've done it. A few blinks have seemed to be a little late but we were told by the rehab/hospital to count them if they happened within 3 seconds of the "threat". We are not trying to exaggerate anything, but it is interesting!!! It needs to stay consistent and become even more apparent to others before I get too excited but so far so good.....

Just before starting my blog, I went in her room and tried it again, she was almost asleep, eyes at half mast and she blinked...every time!!!!

That's new.....  That may not mean much to others but if your child is considered to be in a persistent vegative state, it is big.  I hope it continues. 

So just a quick update tonight, please keep her in your prayers.  Thank you!!!!

HBOT Day 3 and some answers to some questions, lots of pictures!

Another great crazy day....

Last night I went to bed early after eating a bunch of boiled peanuts...that I had boiled myself.  For all of you who don't live in the US south, you may not have eaten them, but they are peanuts in the shells that are boiled for hours after sitting in brine over night.  YUM!!!  (brine is a water/salt mixture)

 

Sam loved them

 

I got my  DUCK DYNASTY plastic cup!

 

Shad loved them too

 

 

Then after being so tired, I woke dead awake at 2 am.....oh dear Lord, I could have solved the world's problems at that time if I'd just wrote all my thoughts down LOL!  I stayed awake for hours.  That is so unlike me!

 

Then I got up extra early since the head of our nursing agency was coming to meet us.  We had a good meeting and it was nice to meet him face to face. 

 

Sarah decided to do some posing before we left LOL

 

Is she funny or what, this was her doing it on her own. 

 

 

 

 

 

 

 

 

she just cracked me up!!!!

 

 

 

Then we were off to HBOT for the morning session!

 

 

One thing I've noticed is that she is much more alert than usual.  And the funny thing is we have given her her dose of Valium daily since we were afraid she'd get stressed out.  Tomorrow we are going to do it without the Valium.   One thing that does seem different is she seems to be back to paying attention to her DVDs again like she was before we left Rochester NY! 

 

 

 

 

This is our home away from home for the next 17 days!

 

 

Then we went home to meet with the Speaker of the Florida House of Representatives, Will Weatherford and his aide Ralph.  They came to our house and met our family.    We were just blown away by Mr Weatherford!  I remembered his name from voting, he happens to be our country's representative.  When I voted for him, little did I know he'd end up in my house one day, helping our family out.  he is just a regular guy, who actually seems to care.  One interesting fact about him, is he was home schooled...I like that.  I would not be surprised to see him as Governor of Florida one day and I know he will have our family's support! 

 

 

 

 

He has been in contact with the Department of Management services in Tallahassee that denied Selah's Level II appeal for nursing care,  There is a review going on and we expect to hear good news soon.  Nothing is final, but I have a very good feeling about this:)

 

Thank God for politicians like him and Mike Fasano (Pasco Co Tax Collector) who care about helping their constitutes.   We are so grateful for both men's help!!!

 

 

 

 

 

Then a quick lunch and back to the HBOT clinic.....

 

 

I've gotten some questions about HBOT, maybe this can answer some of them....

http://www.hbot.com/faq  is where I got this info. 

 

 

  What is HBOT?

Hyperbaric oxygen therapy (HBOT) is a medical treatment which enhances the body's natural healing process by inhalation of 100% oxygen in a total body chamber, where atmospheric pressure is increased and controlled.  It is used for a wide variety of treatments usually as a part of an overall medical care plan.
Under normal circumstances, oxygen is transported throughout the body only by red blood cells. With HBOT, oxygen is dissolved into all of the body's fluids, the plasma, the central nervous system fluids, the lymph, and the bone and can be carried to areas where circulation is diminished or blocked.  In this way, extra oxygen can reach all of the damaged tissues and the body can support its own healing process.  The increased oxygen greatly enhances the ability of white blood cells to kill bacteria, reduces swelling and allows new blood vessels to grow more rapidly into the affected areas.  It is a simple, non-invasive and painless treatment.
  What are the benefits of HBOT?
It has long been known that healing many areas of the body cannot take place without appropriate oxygen levels in the tissue.  Most illnesses and injuries occur, and often linger, at the cellular or tissue level.  In many cases, such as: circulatory problems; non-healing wounds; and strokes, adequate oxygen cannot reach the damaged area and the body's natural healing ability is unable to function properly.  Hyperbaric oxygen therapy provides this extra oxygen naturally and with minimal side effects.
Hyperbaric oxygen therapy improves the quality of life of the patient in many areas when standard medicine is not working.  Many conditions such as stroke, cerebral palsy, head injuries, and chronic fatigue have responded favorably to HBOT.

  How does hyperbaric oxygen help brain injury or stroke?

When cells in the brain die, either from trauma or lack of oxygen, blood plasma leaks out into surrounding brain tissue causing swelling and reducing blood flow.  These otherwise normal cells go dormant because they can't function without the appropriate amount of oxygen.  HBOT dramatically increases the oxygen carried in the blood plasma, making oxygen available to heal damaged capillary walls, preventing plasma leakage and reducing swelling.  As the swelling decreases,  blood flow can be restored to the dormant tissue (neovascularization) and these cells then have the potential to function again.
  How does hyperbaric oxygen help a child with cerebral palsy (CP) or traumatic brain injury (TBI)?
In CP and TBI patients, some of the injured brain tissues may be "dormant" and non-functioning. HBOT can stimulate these "dormant" tissues and return them to more normal function.  In young children, cognitive function and spasticity can be improved.
Hyperbaric oxygen therapy, used in conjunction with other therapies, ensures the best recovery possible for children with cerebral palsy and traumatic brain injury.




I hope that answers some questions.  HBOT is either loved or hated by the medical community.  None of our doctors think it is worth the money to be honest.  BUT we also had that reaction when we had Sam's corneal implant done and we thank God we didn't pay attention to anyone  then who was negative! 

We do not know what will happen with Selah.  BUT we love her and want to give her the chance to see if this helps her or not.  Either way, I am glad we are doing it for her.  If we see no change, we can think "at least we tried it"...if we see some change, even small change, it will be worth it! 

I don't know where I stand with it.  I'm excited about it, and wanted to give it a chance.  I'm a VERY conservative mom and usually goes right along with my pediatrician.  My kids get every shot, they get the flu shot every year.... I believe in circumcision for boys.... hospital births ONLY,   LOL  I'm all about taking them to the doctor/dentist etc.....  BUT I also go with my gut feeling.   Since there is very little risk with HBOT, that is done in a established clinic,  (and this clinic is very safety conscious) I didn't feel we had anything to lose in trying it. 

I've read all kinds of testimonials and heard a lot of stories, but  remember I was raised  in a Pentecostal church where I heard all kinds of "healing stories" too so I take everything with a grain of salt LOL  BUT maybe there is some truth to these claims.  I've been interested in it for years.  I originally looked at HBOT for Sam but since he has eye implants, there were real concerns about the pressure on them. 

My thought is GOD made the Fish Oil that she is still on....( He made the fish...)  and He made the oxygen....and don't get me wrong, I do believe God can heal, I just don't believe He needs PR people (public relation people) who exaggerate things for Him  LOL  So I think combining the fish oil, pure oxygen and prayer....that is a good mix! 

In my heart of hearts, I believe we will see some significant change in Selah.  I maybe wrong and I'll admit it if I am...but I think there will be change!   I'm a bit like a "doubting Thomas" but I'm not disagreeable about it.  I'd LOVE to see it work for Selah! 

 

 

Thank you for continuing to pray for Selah!  I will let you know daily how it goes and any changes we see. 

 

In spite of things being so busy, we have done well on the Daniel Fast.  I know we have no done it perfectly but I've had no sweets or meat (well I did taste a piece of bacon that I cooked for Sarah- I'd had it in the freezer for awhile but I just took one bite!)   I do still drink tea and coffee with as little sugar as possible.  Like I said, Daniel had time to go pray...I have to be a busy mom to 5 kids!   I did have some Greek yogurt, not sure if that was approved or not.   Jon has done perfect as he basically eats like that most of the time anyhow!  Steve and Shad have done good so far too.