https://www.facebook.com/video/embed?video_id=10201745605832222
Not sure if you can see this, if you can't I'll try and repost tomorrow but Selah is busy lifting her head/shoulders....we are all ecstatic! She did this a little bit but just today she is doing it over and over again.....and her heart rate is low, she is not upset and almost seems like she is doing it on command..... we are blown away..... hope you can see this!!!!
https://www.facebook.com/video/embed?video_id=10201745616352485
here is a 2nd one!
"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!
Thursday, September 5, 2013
Day 11 LOTS OF AMAZING NEWS~
Today has been an amazing day:)
Started off this morning, I couldn't find my IPhone anywhere.... my son found it in the fridge....I swear that phone is possessed! I know I did not put it in there.... ummm I HOPE I did not put it there!)
Anyhow I'd missed a call from the Mr Weatherford, the Florida Speaker of the House. I called his office back and one of his assistants asked when would be a good time for him to call to share some good news....I said "Anytime!" So in a few minutes I get a call but it is from a staffer in the Governor's office! He asked if I'd be available to speak to Governor Rick Scott in about 5 minutes? I squeaked out a "YES!" I got off the phone, and my hands started sweating LOL. In just a couple of minutes the Governor called. "Hello this is Rick Scott" He went on to speak about our family and was very kind. He told me a wavier had been signed so that Selah could continue having 24/7 nursing care. He said I would be getting some calls later to go over everything and he even gave me a number to his direct line in case there were any problems. I thanked him for everything and for taking the time to call us.
We are just amazed that the Governor would take the time to call us personally. We have no big connections to anyone, can't really help out anyone's campaign much, give no bid donations....and yet he took the time to call us personally. That was just incredible to us! Thank you Mr Scott!
Then Rep. Will Weatherford called and we talked for a little bit. I was able to thank him for all of his work on behalf of our girl. He is a great guy, very approachable and very kind.
We've not yet gotten the opportunity to thank Mr Mike Fasano (Pasco Co Tax Collector) yet but he is the one who really got the ball rolling for us!
We are so grateful to everyone involved, all of the media who were so kind to share our situation and get the word out and we are grateful to God for this answer to prayer! Just last night I woke up and worried about this whole thing for an hour or so:) So glad I won't have to do that tonight ( I'll find something new to worry about tonight LOL)
Now some news on Selah..... she is MOVING more than ever. She has always been able to lift her shoulders/head off the bed for a few seconds and would occasionally do it (like once every couple of days) . Now she is doing it several times an hour. She is also moving just her left arm at times. This is good because it seems when a person has brain damage like she has, they tend to move both arms together. She is also moving her mouth, sticking her tongue out and she seems to have more control over her mouth movement. This is brand new to her, just started yesterday. In a ten minute time frame we counted her sticking her tongue out 11 times:) She may be telling us what she thinks about everything LOL but it is good because this is something that is tangible, something we can see that she did not do at all before. It looks like the kind of movement a baby makes.... this is a good thing!!
We did an interview with CBS at our home and then I did an interview with Bay News 9 at the HBOT clinic. What a wild day this has been!!!!!
Please continue to pray for Selah! We would LOVE not to need any nursing care at all for her. I miss my little funny girl. Pray that God will use this HBOT to bring her back to us.....
http://www.tampabay.com/news/humaninterest/clanton-family-of-zephryhills-wins-fight-with-state-to-continue-nursing/2140142
Started off this morning, I couldn't find my IPhone anywhere.... my son found it in the fridge....I swear that phone is possessed! I know I did not put it in there.... ummm I HOPE I did not put it there!)
Anyhow I'd missed a call from the Mr Weatherford, the Florida Speaker of the House. I called his office back and one of his assistants asked when would be a good time for him to call to share some good news....I said "Anytime!" So in a few minutes I get a call but it is from a staffer in the Governor's office! He asked if I'd be available to speak to Governor Rick Scott in about 5 minutes? I squeaked out a "YES!" I got off the phone, and my hands started sweating LOL. In just a couple of minutes the Governor called. "Hello this is Rick Scott" He went on to speak about our family and was very kind. He told me a wavier had been signed so that Selah could continue having 24/7 nursing care. He said I would be getting some calls later to go over everything and he even gave me a number to his direct line in case there were any problems. I thanked him for everything and for taking the time to call us.
We are just amazed that the Governor would take the time to call us personally. We have no big connections to anyone, can't really help out anyone's campaign much, give no bid donations....and yet he took the time to call us personally. That was just incredible to us! Thank you Mr Scott!
Then Rep. Will Weatherford called and we talked for a little bit. I was able to thank him for all of his work on behalf of our girl. He is a great guy, very approachable and very kind.
We've not yet gotten the opportunity to thank Mr Mike Fasano (Pasco Co Tax Collector) yet but he is the one who really got the ball rolling for us!
We are so grateful to everyone involved, all of the media who were so kind to share our situation and get the word out and we are grateful to God for this answer to prayer! Just last night I woke up and worried about this whole thing for an hour or so:) So glad I won't have to do that tonight ( I'll find something new to worry about tonight LOL)
Now some news on Selah..... she is MOVING more than ever. She has always been able to lift her shoulders/head off the bed for a few seconds and would occasionally do it (like once every couple of days) . Now she is doing it several times an hour. She is also moving just her left arm at times. This is good because it seems when a person has brain damage like she has, they tend to move both arms together. She is also moving her mouth, sticking her tongue out and she seems to have more control over her mouth movement. This is brand new to her, just started yesterday. In a ten minute time frame we counted her sticking her tongue out 11 times:) She may be telling us what she thinks about everything LOL but it is good because this is something that is tangible, something we can see that she did not do at all before. It looks like the kind of movement a baby makes.... this is a good thing!!
We did an interview with CBS at our home and then I did an interview with Bay News 9 at the HBOT clinic. What a wild day this has been!!!!!
Please continue to pray for Selah! We would LOVE not to need any nursing care at all for her. I miss my little funny girl. Pray that God will use this HBOT to bring her back to us.....
http://www.tampabay.com/news/humaninterest/clanton-family-of-zephryhills-wins-fight-with-state-to-continue-nursing/2140142
Wednesday, September 4, 2013
Day 10 HBOT Half way mark
Today is our half way mark on the HBOT. Our nurse took Selah today. I have not felt well and had a lot of paperwork to do for various things...school stuff for all the kids including Steve, church work and even some personal work to do....
Selah is doing good. Sometimes I do forget to be thankful. I've followed 3 other families who had children in near drownings around the same time as Selah....one little girl recently past away, one little guy had to go back on a vent, and the other little girl has had pneumonia..... Selah has been so stable ....and I am thankful for her being stable and my prayers are with the other families......
So today is short and sweet..... everything is good...we're still praying for Selah and I'm thankful to know you are too!
We've done great on the fast except for Sunday& Monday & Tuesday....just fell off a little (me and the boys- Jon has gone strong!) But we are back on it good and made sure we don't have anything in the house to tempt us!
Selah is doing good. Sometimes I do forget to be thankful. I've followed 3 other families who had children in near drownings around the same time as Selah....one little girl recently past away, one little guy had to go back on a vent, and the other little girl has had pneumonia..... Selah has been so stable ....and I am thankful for her being stable and my prayers are with the other families......
So today is short and sweet..... everything is good...we're still praying for Selah and I'm thankful to know you are too!
We've done great on the fast except for Sunday& Monday & Tuesday....just fell off a little (me and the boys- Jon has gone strong!) But we are back on it good and made sure we don't have anything in the house to tempt us!
Tuesday, September 3, 2013
Timothy and some eye questions....
I felt Timothy needed his own post....
Someone asked me about Timothy and why are kids born without eyes....so in case anyone else was wondering.....
Here are some answers thanks to Wikipedia!
Anophthalmia, (Greek: ανόφθαλμος, "without eye"), is the medical term for the absence of one or both eyes. Both the globe (human eye) and the ocular tissue are missing from the orbit.[1] The absence of the eye will cause a small bony orbit, a constricted mucosal socket, short eyelids, reduced palpebral fissure and malar prominence.[2] Genetic mutations, chromosomal abnormalities, and prenatal environment can all cause anophthalmia. Anophthalmia is an extremely rare disease and is mostly rooted in genetic abnormalities. It can also be associated with other syndromes
Epidemiology
Anophthalmia has been reported to be present in 3 out of every 100,000 births.[3] Many instances of anophthalmia also occur with microphthalmia. A recent study in England indicated that anophthalmia and microphthalmia had a combined average of 1 in every 10,000 births.[1] The annual rate of occurrence of anophthalmia/microphthalmia in the United States is about 780 children born/year.[4] Parents that already have a child who suffers from anophthalmia has a 1 in 8 chance of having another child with anophthalmia.[5] Approximately 2/3 of all cases of anophthalmia are determined to be of genetic basis. Anophthalmia is one of the leading causes of congenital blindness and accounts for 3-11% of blindness in children.[6] Anophthalmia and microphthalmia together make up 1.7-1.8% of reconstructive surgical cases in laboratory of plastic surgery and ocular prostheses.[7]Causes
Sox2 gene
The most genetic based cause for anophthalmia is caused by the SOX2 gene. Sox2 anophthalmia syndrome is caused by a mutation in the Sox2 gene that does not allow it to produce the Sox2 protein that regulates the activity of other genes by binding to certain regions of DNA. Without this Sox2 protein, the activity of genes that is important for the development of the eye is disrupted. Sox2 anophthalmia syndrome is an autosomal dominant inheritance, but the majority of patients who suffer from Sox2 anophthalmia are the first in their family history to have this mutation. In certain cases, one parent will possess the mutated gene only in their egg or sperm cell and the offspring will inherit it through that. This is called germline mosaicism.[8] There are at least 33 mutations in the Sox2 gene that have been known to cause anophthalmia. Some of these gene mutations will cause the Sox2 protein not to be formed, while other mutations will yield a non-functional version of this protein.Other influential genes
Sox2 is not the only gene that can cause anophthalmia. Other important genes include OTX2, CHX10 and RAX. Each of these genes are an important in retinal expression. Mutations in these genes can cause a failure of retinal differentiation.[3] OTX2 is dominantly inherited. Mutation effects vary in severity, and can include microphthalmia. BMP4 is also linked to anophthalmia, as well as causing myopia and microphthalmia. It dominantly inherited. BMP4 interacts with the Sonic Hedgehog pathway and can cause anophthalmia.[9]Environmental influence
Many environmental conditions have also been known to cause anophthalmia. The strongest support for environmental causes has been studies where children have had gestational-acquired infections. These infections are typically viral. A few known viruses that can cause anophthalmia are toxoplasmosis, rubella, and certain strands of the influenza virus.[10] Other known environmental conditions that have led to anophthalmia are maternal vitamin A deficiency, exposure to X-rays during gestation, solvent abuse, and exposure to thalidomideChromosome 14
An interstitial deletion of chromosome 14 has been known to occasionally be the source of anophthalmia. The deletion of this region of chromosome has also been associated with patients having a small tongue, and high arched palate, developmental and growth retardation, undescended testes with a micropenis, and hypothyroidism. The region that has been deleted is region q22.1-q22.3. This confirms that region 22 on chromosome 14 influences the development of the eye.[11]Classifications
There are three classifications for this condition:- Primary anophthalmia is a complete absence of eye tissue due to a failure of the part of the brain that forms the eye.
- Secondary anophthalmia the eye starts to develop and for some reason stops, leaving the infant with only residual eye tissue or extremely small eyes which can only be seen under close examination.
- Degenerative anophthalmia the eye started to form and, for some reason, degenerated. One reason for this occurring could be a lack of blood supply to the eye
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Timothy has no mental delays, he speaks English and Chinese fluently....that is more that I can do!!!!!!!
He does have some CP.
Sarah only had one eye that developed.....
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Both Sam and Sarah have Peter's Anomaly and that is why their eyes were affected....
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I'm praying to get an email from someone who is looking for a wonderful son......Timothy needs a family.....please pray!!!
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.
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.
Monday, September 2, 2013
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
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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.
.JPG)
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.....
Sunday, September 1, 2013
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!!!!
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!!!!
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