Saturday, January 14, 2012

Another week, a little more progress.

Wow, it has been a long week.  It was my first week back at work and Jacob's first week back to school.  Karlee now is pulling full weeks at the hospital with Claire and I'm handling the weekends - or at least one of the weekend days, depending on how Karlee is doing with the extended stay.

This week she had me only stay over at the hospital one night, tonight, so she could get some sleep in a normal bed and rest up for the upcoming week.  So, I find myself here at the hospital, unable to sleep.  What better time to blog, right?  :)

Like I said above, it has been a long week.  Going to work and listening to my customers who have had damages done to their homes and are needing help fixing the damages has been a little less than therapeutic.  Everything going on with Claire and the modifications I need to make to my own house makes everything else seem like it's much less important.  Now, I still feel sympathy for those people who are calling asking for help, and I do help them and get them through their insurance claim, but jeez would it be nice if I could claim my remodel through insurance and only have to pay a deductible!!  Oh well..  We need the income and I likely need the distraction to help keep me somewhat sane. 

Jacob has transitioned back to school nicely after the Christmas break and brought home his progress report.  He is earning a 3.1 GPA to this point of the year and doing very well at keeping up on his homework.  He is a fantastic young man.

Plenty of updates on Claire too.  She has been doing very well this week with her therapy.  I think that having Mom around with her the entire time helps her feel a little more settled and allows her to focus more on what she needs to get done here so we can all get back to being at home.  Day in and day out more and more seems to happen with Claire -in a good way- that gives us hope for a greater recovery than anyone anticipated.  She seems to be showing more movement, both involuntary (reflexes) and voluntary as the days go by.  She has, on command, been able to wiggle her toes and shake her legs, although slightly.  I haven't had time long enough with both Karlee and I here to get the videos she has on her phone loaded to the computer, but once I have the chance I will get that done and post one of the videos to the site so you can all see how Claire is currently able to make those movements.

Claire is also getting very good at handling her wheel chair and really understands how to move the wheels to get the chair to go where she wants it to.  I'm very impressed with how well she is doing with that, especially considering how difficult it was for her to grasp at the beginning.  Like I have said throughout the blog - she is a trooper!

As I mentioned in last week's post, we did have a meeting with all the doctors and therapists, two representatives from the Department of Developmental Disabilities (DDD), behavioral health representatives, and the teacher staffed here at the hospital on January 12th.  There were positives and negatives throughout the meeting, but essentially we discussed what insurance will be able to cover (wheelchair, hoyer lift, transition boards), what insurance is not able to cover (home modification, vehicle), what the DDD can assist us with (POSSIBLY home modification - but details on exactly what they are able to do are pending) and what they won't assist us with (vehicle), and the current prognosis on Claire from the doctor and therapists and how long they expect her to be here.

The hospital equipment person has placed the order for the hoyer lift to be delivered to our home - it is an hydraulic lift which helps us to move Claire from bed to chair and vise-versa, and also can help us to lift her to a standing position for therapy.  The wheel chair will be ordered after measurements are taken and closer to the time she is discharged. 

The DDD hinted at possible assistance for home modification but wouldn't commit to anything.  They said they were going to contact me to schedule someone to come by and look at the house.  They were quick to point out that whatever assistance they do offer would be limited to one (1) ramp into the home, and they would not assist with any exterior modifications (ie: changing our driveway from brick pavers to smooth concrete - another change we realized we will need to make).

We will see where this all goes.  We know that moving forward Claire will be in a wheel chair.  One of the doctors seems pretty optimistic that Claire will walk again, but that it's just a matter of time (time being anything from days to months to years) but not all of those involved are quite that optimistic.  Karlee and I are continuing to hope, but know that if no further progress is made by Claire we are still happy and proud of what she has been able to accomplish.

99 comments:

  1. One of my students has the use of only one hand, and is intellectually disabled. Once he got a wheelchair that was light enough, he learned how to manuver it through any obstacles. He is able to go up ramps, and all over campus now. The only help he needs is through doors, but is able to assist while going out a door. Amazing how they adapt so easily, when given a new situation, and manage to do problem solving at that level on their own. Keep up the good work, Claire! You are one determine woman!

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  2. Hi, Donna here from Minot ND, I heard about Claire from Becky's Blog and just wanted to say hello and let you know that you all will be in my thoughts and prayers. It is amazing how God works he gives you what you need just when you need it the most.

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  3. Stumbled here from Becky's blog as well. You may already know this, but you might be able to deduct a lot of your expenses for modifications from your taxes, both to your car and to your home. I also read that some states refund sales tax for items, like the lift, ramp and construction materials to make the improvements. It might be well worth it to find a good accountant and save all of your receipts! Here are the IRS guidelines for home improvements for medical reasons: http://www.irs.gov/publications/p502/ar02.html#en_US_publink1000178902

    Best wishes to you!

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  4. Such a brave and beautiful girl. Thinking of you all. :)

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  5. Amazing! Such a stunning strong girl! As much love and Light to you, as you bring to the world... So beautiful! I expect big things from claire!

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  6. Wow - I can't imagine going through what you are all going through but take heart! You will make it through and with your family, nevertheless. Be thankful for the things you do have (like your family) and just show love. Love will see you through.

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  7. The love, faith and hope in your family is so transparent and inspiring. Good vibes being sent to Claire, her doctors, DDD and especially the whole family! -- Emma

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  8. Hang in there! One day at a time. God bless you and your children.

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  9. I am sending you all my love!! Beautiful girl, & inspiring!

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  10. Praying for complete healing and peace for Claire! God makes all things work together for good (Romans 8:28), so I know that He will use this to impact the world somehow! Much love!

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  11. sending you all my love & prayers, Claire! keep shining on!

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  12. I believe in you, Claire! I believe in your strength, in your spirit, and in your beauty. Keep shining each and every day and keep making the best of life!

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  13. Hoping for you that Claire continues to recover and improve and that you're able to make all of the adjustments you need. Sending you peace and love!

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  14. Love and prayers and encouragement! You guys are such a kind and loving family, and I think God will really bless you for that! Here's to healing for Claire! God bless!!

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  15. I love your upbeat attitude! It must be hard some days but keeping positive is so vital. Your family is clearly a loving, supportive one that Claire is lucky to have -- and you are lucky to have Claire! She is beautiful! Know that you are all loved and being prayed for!

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  16. Stay positive and strong. Sending encouragment your way for Claire and the entire family. Claire is a strong girl, she gets that from her strong family, keep it up!

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  17. Lots of love being sent your way!

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  18. Sending much love and prayers to Claire and her family, for a quick recovery, and help with all the modifications you need to make.

    Love from Canada <3

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  19. I understand how hard it sometimes is to remain positive every minute and have hope. Thoughts are so important. Your story reminded me about what I read one time about a guy named Morris Goodman who they now call the miracle man. His book Count you Blessings might just help you because we all need some encouragement sometimes.
    http://www.themiracleman.org/read1.htm
    I know it's a little different as Claire has challenges, but maybe it might help.
    I'm sending you prayers of love.

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  20. Lots of love to your family. Keep strong & keep your hope & positive attitude! ♥ x

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  21. My heart goes out to you and your family and I hope she continues to improve. I have a brother who is "handicapable" (he doesn't like me calling him handicapped and I have had to find a hoyer life and a hospital bed for when he comes home on weekends. If you need any help or advice, please let me know. I'm part of the Love Bomb team and will be praying for you all.

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  22. I'll be thinking about Claire and your family as you make the transition home. You've obviously created a loving and caring family with tons of optimism. Keep it up and stay strong! Sending hugs your way!

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  23. Praying for things to come together smoothly as you ready your home for Claire. I can't imagine what you have been going through, but as a mama, my heart breaks for your childrens' struggles.

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  24. I'm astounded at what we have to deal with sometimes in our lives and it seems like it's just way to much. You need to know that there are people out here who may know know you, but understand how hard things are for you and your family. Take it day by day and sometimes it's hour by hour. Try to take care of you, this is really important. You and your wonderful family are in my thoughts and prayers. Never, ever give up.

    Love,

    Mark

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  25. Don't give up! Just when you think things won't get better they do. Thoughts from Arizona to you and your family!

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    1. Well after reading a bit more I see that we are neighbors so sending some love from Glendale seems more appropriate....PCH is a fabulous hospital, Claire will be getting great care there!!

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  26. Much love and prayers your way :)
    Don't ever give up! xxx

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  27. Your resilience is so inspiring. I don't know you, but I can tell that you and your family are amazing people. I have faith that things will only get better for you from here :) Keeping you in my thoughts and sending the happiest of vibes your way.

    so much love,

    Kindal

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  28. Keep going, your positive attitude is inspiring and I hope Claire continues to improve the way she is!

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  29. That's so exciting that she's making progress! You are clearly a very loving, supportive mom.

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  30. LoveBomb sent me: I am praying for you and your family but especially for CLaire's continued progress!

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  31. Great job, Mom and family:) Make sure you take time out to look after yourself. You are obviously doing a spectacular job with your family.
    Rach from the LoveBomb crew

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  32. an unbendable will has no limits and much like the snail at the door I am sure Claire will smile bright whenever she reaches another goal.

    The Snail at the door:
    A guy hears a knock at his door. When he answers it, there’s nobody there, but there’s a snail on the welcome mat. Frustrated, the guy picks up the snail and hurls it into the street.

    Five years go by, and there’s another knock at the door. The man answers it, and again there’s no one standing there, but there’s a snail on the welcome mat.

    The snail looks up and says, “What the hell was that all about?”

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  33. Sending lots of love-hugs for miss Claire. She IS a trooper, and so are you all.

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  34. Wow! Way To Go Claire and family. Everything you are doing to take care of each other is so full of love. I wish you all the best with Claire's recovery.

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  35. Your family is beautiful and the love you create, an inspiration. Thoughts and prayers, love and light to you all...

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  36. Claire and the rest of your family are an inspiration to us all. With the attitude you all have, miracles are in store for your family - you are giving Claire an amazing life! Keep it up!

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  37. Wow, I am very impressed by the progress Claire has made in a very short time; although, it may seem like forever! Her bright spirit is what will help her (and her family) through all of this. What courage all of you have shown. I send my love and prayer to all of you!
    Lu

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  38. I can't imagine how unbearably difficult this must be for you. Your family is beautiful and you are all in my thoughts. Much love to you all.

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  39. Hey, Claire. You are a light in the world--despite all that's happened to you, you're still smiling and positive, and that's amazing. With your courage, you could be walking again sometime soon. Anything is possible with a heart that's as open as yours. My thoughts and prayers are with you and your family. I will chant (that's how we Nichiren Buddhists pray) for you and your continued recovery. Much love, Erika

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  40. You guys are a truly amazing family! Prayers for a continued recovery for Claire and blessings for your family!
    <3

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  41. I am so happy to see your family doing well and making progress. Claire is a beautiful, strong-willed girl that I know will walk again one day. She can do it. She will do it.

    Best of luck to all of you.

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  42. May your entire family experience rest, renewal, strength and hope! My thoughts and prayers are with you!

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  43. Claire sounds like Wonder Woman and doesn't let anything keep her down. She has a positive attitude and it sounds like she gets that from you. With a positive attitude you can accomplish anything. I wish her well and will hold her and your entire family in my prayers.

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  44. Claire has such an amazing attitude! You are such a good Momma to have raised her so well. My prayer for you is that life grows easier and your strength and determination not waver. With Christ, all things are possible. Love and prayers from Green Bay, WI

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  45. You are incredibly brave and I am inspired by both yours and Claire's determination and enthusiasm for life. Thank you!

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  46. God Bless you and your family. Never lose your positive attitude! You are in the thoughts and prayers of many. :)

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  47. I'm sending lots of love and prayers your way. Be strong. xxxxx

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  48. Praying for strength and endurance for Claire and the family! It's the difficult things in life that make us stronger. God loves you and so do I :)

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  49. Sending you much love. You sound very positive and accepting of a very difficult situation, which is inspiring. You are in my thoughts.

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  50. Sending oodles of love and light to help Claire recover fully and fast, and to give Mom, Dad, and the rest of the family the strength and comfort needed right now. Be well, stay positive, and keep your focus on the most wonderful possible outcome for sweet Claire. xoxo, c

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  51. Sending prayers and thoughts your way. Blessings to you and your family.

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  52. Many blessings to you and your family.

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  53. Sending healing thoughts Claire's way! She is lucky to have such a wonderful family. I hope that you continue to find strength as well.
    Katherine from the Love Bomb team

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  54. Stay positive! Just take it one step at a time and soon you'll go so far:) Claire is so adorable and will do so much. Have such a good weekend together:)

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  55. Sending prayers for Claire's continued recovery. Wishing many blessings to your entire family, Deb from Colorado Springs

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  56. Lots of love to Claire and your beautiful family!

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  57. Beautiful Claire, I'm sending you and your family lots of love and blessings today. Get well soon, lovely girl. Wishing you a blessed and happy year x x x

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  58. Sending positivity and love your way! <3<3<3

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  59. Hello beautiful lady ; keep on being amazing and awesome:) Sending loving rays of sunshine to you and your beautiful family :3

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  60. Hey Claire Bear :) just thought I'd remind you of how amazing you are. Not like you'd forget, eh? Much love :)

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  61. Dear Claire, I think you and your family are doing a great job. Do not give up. I know it is a lot of work but it is worth. You will be in my prayers. Lots of hugs!
    Love from Mexico City

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  62. Wow. I just have to say what an amazing family you are. I am so impressed by all of you: how hopeful, how loving, how determined you all are. You have so much heartache and so much to cope with, but I can only think how lucky you all are to have each other. I'm thinking good thoughts for all of you.

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  63. Sending up a prayer for Claire's recovery. Thanking God that she is alive! :)

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  64. Sending hugs and prayers for Claire and her continuing progress. May your family always feel the blessing of His love and grace.

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  65. Claire and Family, Sending loads and loads of love your way. I am inspired by you all. ((((HUGS))))

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  66. Stay strong and stay positive! Lots of positive thoughts!

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  67. I'm sending so much love and good energy from Portland Oregon to your family. You all, and Claire (with her AWESOME hello kitty tee shirt!) especially.
    xx
    Jenn

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  68. Praying for Claire's continued healing!

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  70. Thank you for your inspiration. Your strength, honesty, and spirit remind us all to enjoy the present, for the gift it truly is. May each day begin to look even a little bit brighter for you.

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  71. Putting out positive thoughts for Claire and your entire family! You are amazing people.. remember to keep breathing and just take everything one moment at a time.

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  72. You are amazing and beautiful! Stay strong!

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  73. Praying that you find peace among your current storm. Bless you!

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  74. Thinking of you and sending love.

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  75. You are truly beautiful and I'm so proud that you can cope with your wheelchair. Thinking of you! <3

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  76. So pleased that progress is being made, and I really hope things continue in that way. Lots of love to your family x

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  77. Sending love and hope to you and your family!

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  78. Stay strong, I am thinking of you all with love from Celia in New Zealand

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  79. God gives people with the largest heart the hardest path to follow. Your heart is so large that while your family is going through a very low point you still are wanting to help others. Keep that in mind because with a strong, loving heart comes blessings that are unexpected. Stay positive, keep strong and I'm sure your family will make it through to see brighter days.

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  80. The passion and love you have for your daughter radiates from your words. Stay strong and realize that your thoughts will shape the reality you live in. I am sending love and hope your way because anything can be achieved as long as you believe it.

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  81. Sending prayers and encouragement for her continued recovery! Even though it may not always be easy, stay positive...Positive thoughts = Positive outcomes!

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  82. Claire truly is a trooper! And you guys all are too - your strength and courage are amazing! Thinking of you all,
    Meghan

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  83. The strength and love in your family shines through in this post! Wishing you lots of courage, love, and blessings as you navigate these difficult times.

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  84. hi claire, i just wanted to say that you are so beautiful, and that you are a true fighter and inspiration to everyone. i send you all the love in the world, and hope life sends you wonderful things from here on, keep positive and stay smiling.
    xoxoxoxoxoxo Rosie xoxoxoxoxoxoxoxoxo

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  85. What can't be done is not important. It is upon what can be done that the future is built. Focus on that, move forward with confidence and you'll be surprised where life will take you.
    Go on.
    Get going.

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  86. I just started reading your blog today.
    My daughter, Becky, was born with CP & uses an electric wheelchair to get around. She used to use a manual wheelchair even though she can really only use one hand/arm. It's just amazing how quickly these kids adapt and learn how to get around!
    I worked as an occupational therapist up until about 5 years ago and worked with many spinal cord patients. I know it does take a long time to see progress and you just can't give up...life can surprise you!
    Just a thought...you might try contacting some of your local car companies & ask them to keep their eyes open for converted vehicles with ramps/lifts. Another idea...put a "donate" button on your blog so people could donate toward a vehicle or other equipment Clair may need. Paypal has a charity feature that will allow people to donate without them taking a cut.

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  87. Just focus on the sunnyside of everything. I know she could able to walk. Just believe! It is really possible. Stay strong. Above all have faith in God.

    To Claire, I want her to know that she is so beautiful and amazing as well. Life is so wonderful no matter the situation is. Everything is okay :)

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  88. To Claire, you may not realize it but your situation is a blessing to so many ppl. I know you probably wish many days that you could trade places with other ppl, but you give so many ppl courage to continue to live on. Please smile as you read this, I don't personally know you but I love you. Take care.

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  89. Sending you love and positive, healing energy,to you and your family!!

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  90. Sending lots of love and prayer to you Claire! You are beautiful and strong.

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  91. you are beautiful, claire! sending love and prayers your way!!

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  92. sending so much love and support claire! you are doing so great, take everything one day at a time. You've accomplished so much so far and you'll only do even more as the days go by. Stay strong :)

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