Friday, March 8, 2013

Day 124 Fish Oil Study

Thank God another peaceful day.  She was up in her chair for a few hours with her feet on a foot stool and she did good.  She is rather out of it with the drugs but peaceful.  I worry about her regressing but I think once she heals and the casts are off, being able to weight bear on her feet and all the wonderful things her therapists has for her will make up for the time she is losing this month. 

I love to take care of her.  It does bring me a sense of peace to meet her needs and love her in a tangible way.  Through the past 7 months,  I've had to share her care with so many others and even tho she needs alot of care, I'm happy to give that to her at night.  I'm so glad we stopped having night nursing LOL  Who'd ever thought I'd ask to lose night nursing after fighting so hard for it?  But it is easy enough, even on the more challenging nights to take care of her and just be a family. 

I love Selah so much, sometimes my heart just bursts inside of me.  I HATE that the accident happened and changed our lives but I will always love and care for her.  I think we are more committed to her than we were on the day we adopted her, if that makes any sense.   We almost gave her the middle name of Jewel and now I really wished we had!  She is like a jewel...before she was hidden away and no one knew about her.  She wasn't one of the "poster kids" no one had her picture but God never forgot her.  Now she is our daughter and we will always love and care for her.  We promised to give her a family "no matter what" and now we have faced the "no matter what" and we are committed to loving her and taking care of her.   We would have never ever chosen for this terrible accident to happen to her....but we will still give her a family and the best life possible.  We will never stop praying for her nor will we ever stop trying to find ways to help her medically!!!  I believe God gives doctors wisdom to treat people and just like with Sam there was ONE doctor who could help him....maybe there will be ONE doctor that can help Selah!  I will never stop trying.  We believe the fish oil has helped her and we are hopeful as we are right at the 4 month mark that after this month is done (with the casts) and we can back off the meds again that we will see some more cognitive and physical improvement. 

I really want to look into HBOT therapy but it is expensive.  We will see....right now I want to get her through this month.   I need to do some paperwork and enroll her in some different programs and school (home bound) then I'm going to look in earnest at HBOT therapy.  I'm pretty good at finding granst and things like that.  I don't think either of our insurances would pay for it.  I did fill out one grant already but haven't heard back from it....

 
Today we got a loaner wheelchair for Selah (although Sarah was trying it out and liked it)  There is a ministy here that helps adoptive and foster families and a friend had put me in contact with them.   This wheelchair is one I'd looked at before years ago for Sam but then we went with a really nice jogging stroller called a BOB.  BOBs are expensive but not as expensive and they are easier to fold up.  Our nurse thinks this will work better for Selah once she is up.  So we gave them our old  BOB since the company had been so kind as to send us a replacement double one after the accident and a new single one too.  (someone contacted them for us)  Right after the accident, I wouldn't even use a stroller and I'd carry Sarah everywhere (she doesn't walk at all)  and we made Sam walk more (which he hated)   But now I'm ok for the most part with it.  I've told myself that if you have a car accident, that doesn't mean you never ride in a car again....  We are just extremely safety conscious ...which we were always but in a way now that is probably bordering on neurotic, if you hadn't gone through what we have gone through.    
  Selah has been measured for a wheelchair but it is taking so long,   The nice thing was I had gone through all the girls and Sam's things and was able to give them a car load of things including some diapers that the kids had grown too big for that I had stored up.   I love cleaning out closets and drawers...I'm the exact opposite of a hoarder...but I do stock up on things if I have coupons.  BUT if it hasn't been used in 6 months (unless it is canned food) it is GONE! 


Please continue to keep Selah in your prayers that she will heal quickly and tolerate the casts. Thank you!


http://kacirek.blogspot.com/2013/03/i-waited-long-time-going-deeper.html  I want to leave you with this blog to read.  It is a family who is adopting two children that both were in the same institution as our girls.  The boy has major medical issues but is not as delayed as our girls are mentally.  He spent a lot of time with us when he was out of bed.  He would tell us "Good morning" in a very serious tone and you could tell by the look on his face that he wished he had a family there too!  Well now he does and this blog is written so beautifully.  Just makes me happy/sad...happy that he has a family...sad that he waited so many years but now he will never be alone again!    This mom also is the director of Grace Haven Ministies that has a grant in place for the sweet "Sally" http://myreallifebyyvonne.blogspot.com/2013/02/day-106-fos-sally-has-family.html  If you can give towards her adoption I would be happy happy happy!   (yes I love Duck Dynasty)   Sally has a family coming for her:)  I LOVE to see children being plucked out of the darkness and loneliness of a orphanage to be loved and in a family!!!!  And it is even more precious when I know the children myself! 

9 comments:

  1. Was Macarius
    http://reecesrainbow.org/46079/macarius
    in the same institution? He has captured my heart. I pray for him and donate what I can. He looks so much like my daughter! He has Cerebral Palsy, like her, but he can't walk (she does). His mind is untouched by the CP and he can talk (unlike her). They said he is a bright boy! I pray his family finds him, and soon!

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    Replies
    1. No it looks like hs is till in an orphange since he is only about 4.

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  2. Perhaps I missed it somewhere, but what is HBOT therapy? I suppose I could 'google' it, but it's too late! :)

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    Replies
    1. hyperbaric oxygen therapy (HBOT), is the medical use of oxygen at a level higher than atmospheric pressure. It's contravorsal about helping kids with brain damage.

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  3. Hi Yvonne, I saw your post mentioning HCOT and tried to research it. I found something I thought was interesting about Florida mandating insurance companies to cover it. I will post the quote. I am continually praying for you all. God Bless, Much love, Corey Dr. Richard Neubauer and Dr. Paul Harch are leading a loyal, growing, group of doctors and support personnel, dedicated to educating the public and especially the decision makers on the important benefits which are possible through the use of HBOT. Florida is the first state to mandate insurance companies to start paying for HBOT for select cases of cerebral palsy, near drowning and other traumatic brain injuries. Support for the International Hyperbaric Medical Association (IHMA) in which Dr. Harch is the president is essential to influence the decision makers of North America.

    HBOT is a therapy whose speed and outcomes cannot be precisely predicted. This situation is shared with most standard therapies for brain injury. The difference being, only hyperbaric oxygen can stimulate tissue to improve its function. HBOT used as an adjunct therapy with physical therapy, occupational therapy and speech therapy has given families one more tool to help give cerebral palsy victims the chance to achieve their full potential in life.

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    Replies
    1. hey where did you find that? I didn't think insurances paid at all!!!

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  4. Hi Yvonne, I am sending you many links. I hope you can copy and paste them. I also hope one or some of them are beneficial to you. I know some may not apply at all. I have not read them through completely as I am very ill, but researched as much as possible and found what I thought would most apply. Please feel free to write to me at corkysgirl@gmail.com to inquire about anything...or I can try to research more if you need. Corey Bean The link I found the
    quote about Florida and insurance paying, etc. is in a link I will attach first, but it is by a man/doctor I believe, out of California. He seems to be on many sites and has connections to Florida. Maybe you can contact him. . As I said, I did not read the complete info as I can't sit long at a time. This is the post I got it from......http://www.californiahyperbarics.com/cerebral14.html

    (These three links are doctors in Florida) http://www.sfcenterforhope.com/traumatic_brain_injury_treatment.html http://www.oxygenrescuecarecentersofamerica.com/conditions-a-diagnoses/90-near-drowning http://www.healing-arts.org/children/hyperbaricoxygentherapy_hbot.htm#Florida_HBOT

    Seems to be a good link in Florida. Not sure what's close to you. http://www.sfcenterforhope.com/

    http://www.netnet.net/mums/FreelsListserv.htm (Not sure about this but seems to be a blog related getting payment for HBOT....mostly medicaid. Not sure if this can apply or not to you)

    Not sure if this would help you at all but just happened upon it...home use for HBOT. http://quantum-healing-lasers.com/hyperbaric-oxygen-chamber.html

    This is related to insurance covering HBOT. http://www.florida-oxygen.com/blog/when-insurance-covers-hyperbaric-oxygen-therapy

    I found this link about a free grand 2 times yearly. Not sure if it covers Florida, or if it is recently given. http://www.daniellesfoundation.org/ (Also look under Free publication drop down...then free book. It speaks of navigating the Insurance system.)

    This link explains something about insurance covering the cost. http://www.hboinfo.com/tx_costs,_insurance.htm

    This doctor has a lot of info on the subject. http://www.hbot.com/about In search box of this site I searched for Florida

    I Also found a quote in a book called "Domain-Specific Modeling" A stroke victim speaking on how she/he fought back. It speaks of medicaid patients, but also a BCBS patient sued in Florida and was awarded full reimbursement
    plus additional treatments but had to be administered in hospital. Also speaks of a group www.groups.yahoo.com/group/medicaidforhbot related to the medicaid payment issue. Not sure if this applies to you.


    ReplyDelete

  5. Hi Yvonne, I am sending you many links. I hope you can copy and paste them. I also hope one or some of them are beneficial to you. I know some may not apply at all. I have not read them through completely as I am very ill,
    but researched as much as possible and found what I thought would most apply. Please feel free to write to me at corkysgirl@gmail.com to inquire about anything...or I can try to research more if you need. The link I found the
    quote about Florida and insurance paying, etc. is in a link I will attach first, but it is by a man/doctor I believe, out of California. He seems to be on many sites and has connections to Florida. Maybe you can contact him. . As I said, I did not read the complete info as I can't sit long at a time. This is the post I got it from......http://www.californiahyperbarics.com/cerebral14.html

    (These three links are doctors in Florida) http://www.sfcenterforhope.com/traumatic_brain_injury_treatment.html http://www.oxygenrescuecarecentersofamerica.com/conditions-a-diagnoses/90-near-drowning http://www.healing-arts.org/children/hyperbaricoxygentherapy_hbot.htm#Florida_HBOT

    Seems to be a good link in Florida. Not sure what's close to you. http://www.sfcenterforhope.com/

    http://www.netnet.net/mums/FreelsListserv.htm (Not sure about this but seems to be a blog related getting payment for HBOT....mostly medicaid. Not sure if this can apply or not to you)

    Not sure if this would help you at all but just happened upon it...home use for HBOT. http://quantum-healing-lasers.com/hyperbaric-oxygen-chamber.html

    This is related to insurance covering HBOT. http://www.florida-oxygen.com/blog/when-insurance-covers-hyperbaric-oxygen-therapy

    I found this link about a free grand 2 times yearly. Not sure if it covers Florida, or if it is recently given. http://www.daniellesfoundation.org/ (Also look under Free publication drop down...then free book. It speaks of navigating the Insurance system.)

    This link explains something about insurance covering the cost. http://www.hboinfo.com/tx_costs,_insurance.htm

    This doctor has a lot of info on the subject. http://www.hbot.com/about In search box of this site I searched for Florida

    I Also found a quote in a book called "Domain-Specific Modeling" A stroke victim speaking on how she/he fought back. It speaks of medicaid patients, but also a BCBS patient sued in Florida and was awarded full reimbursement
    plus additional treatments but had to be administered in hospital. Also speaks of a group www.groups.yahoo.com/group/medicaidforhbot related to the medicaid payment issue. Not sure if this applies to you.

    ReplyDelete
  6. Hi Yvonne, I'm not sure if you already got the post with all the links attached. I had a lot of trouble posting...kept saying box was "empty" If not can you contact me at corkysgirl@gmail.com Also, please don't post this. I also found this quote...below. Praying...always! Please let me know if you need anything! Corey

    I Also found a quote in a book called "Domain-Specific Modeling" A stroke victim speaking on how she/he fought back. It speaks of medicaid patients, but also a BCBS patient sued in Florida and was awarded full reimbursement
    plus additional treatments but had to be administered in hospital. Also speaks of a group www.groups.yahoo.com/group/medicaidforhbot related to the medicaid payment issue. Not sure if this applies to you.

    ReplyDelete