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  1. I'm so so sorry for all the struggles you've had...

    I'm so so sorry for all the struggles you've had just getting appropriate care for your son. I think Rose said it all!! Your son really needs a Dr. who Is listening to your concerns and acting...
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    Kathleens update

    Thought I would update with a few pictures. Kathleen has enjoyed the summer and now its already fall. The weather is great warm some days crips some days. She's been very busy concerts (Goo goo...
  4. Thread: Jim's Journey

    by mg12061
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    Rose, always thinking about you and Jim and...

    Rose, always thinking about you and Jim and prayers for you both. I'm very impressed at your ipad usage! New technology can be so frustrating. I have a very old phone and I'm scared to get a new one...
  5. Hello and welcome to braintalk. I'm so sorry you...

    Hello and welcome to braintalk. I'm so sorry you are feeling so lost and dealing with so much. I'm glad you found the support here. I have a daughter who has Down syndrome and several other health...
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    This made my day! What a lovely picture of your...

    This made my day! What a lovely picture of your boys! I'm quite certain they're your angels watching over you and Jim. Can't believe it's been 5 months. Thanks for sharing with us.

    Mary Grace
  7. Thread: Jim's Journey

    by mg12061
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    Rose great idea with the witch hazel. That I...

    Rose great idea with the witch hazel. That I think she'll tolerate. I've put neosporin on it but she will not tolerate a bandaid.
    Mary Grace
  8. Thread: Jim's Journey

    by mg12061
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    Rose, So glad Jim's blood results were stable for...

    Rose, So glad Jim's blood results were stable for the most part.
    I don't know if it would be any easier but I make a really easy peanut butte cookie for Kathleen. I'm sure you could use any nut...
  9. Thread: Jim's Journey

    by mg12061
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    Rose, so glad that things seem stable health...

    Rose, so glad that things seem stable health wise. But sorry there continue to be things thrown at you. John is such a gift in your life and it's comforting to know you have someone you can count on....
  10. Thread: Jim's Journey

    by mg12061
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    Rose, So sorry there's one more battle... You're...

    Rose, So sorry there's one more battle... You're so right if people would "just do their job" and maybe do it with a little pride and respect it would make so many lives easier. We've had an issue...
  11. Thread: Jim's Journey

    by mg12061
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    Rose, So happy you got the ring and it fit. Happy...

    Rose, So happy you got the ring and it fit. Happy for the blood work results as well. Boy do I wish I could be there having a Stella! Love Stella! The pharmaceutical business is just that a big...
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    Rose, So glad you're safe. As soon as I heard...

    Rose, So glad you're safe. As soon as I heard about the quake I thought of you guys and prayed. I can't imagine how scary it must be.

    I agree about the fireworks. they should not be set off in...
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    Rose, It always brings a smile to my face to read...

    Rose, It always brings a smile to my face to read some positive news. I'm very sure that all you do is considered a huge gift! Every day that passes with comfort and peace is a gift as well. Many...
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    Rose, I love reading all your posts. I look...

    Rose, I love reading all your posts. I look forward to it with my morning coffee. It saddens me when the posts contain struggles and setbacks but those are the ones that truely show me your unending...
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    Funnylegs, It made me tear up when I was reading...

    Funnylegs, It made me tear up when I was reading Rose's post. I immediately thought it was BT friends,I don't know why but it just popped into my head as I read it. I remember Roses posts that ended...
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    Rose, What a beautiful post. I'm so glad your...

    Rose, What a beautiful post. I'm so glad your dream was clear to you and gave you the "energy" you need to move forward. You knew it would happen in good time and it did. What a beautiful and...
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    Rose, What a day! So much for your minds and your...

    Rose, What a day! So much for your minds and your bodies all in one day! So many positive things you've done such an amazing job! I'm so thankful that both of you were able to be at the appointment....
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    I follow the child neurology thread but saw the...

    I follow the child neurology thread but saw the mention of gluten here so I came to check it out. My daughter has celiac and has been eating GF for several years. Celiac itself is an autoimmune...
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    I pray that there continues to be good news. It...

    I pray that there continues to be good news. It was good to see even a little positive steps in the right direction. Positive thoughts and many prayers always headed your way.
    Mary Grace
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    Rose, Thank you for the update. I'm always happy...

    Rose, Thank you for the update. I'm always happy to see even a small positive part to your post. I'm very much a glass half full kind of gal. I suppose it's a bit of a coping mechanism. Sometimes I...
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    Rose, Thinking of you and Jim always and praying...

    Rose, Thinking of you and Jim always and praying for peace and healing of mind and body. It was good to read some positive news. So glad the bath worked out there's nothing like some hot water and...
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    Rose, I've been reading your updates often. I...

    Rose, I've been reading your updates often. I just don't always get time to respond. Please know that you are in my daily prayers. So glad Jim's temp was NOT 104 and no ER. If you do go to the ER do...
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    Rose, So glad things are looking a little better...

    Rose, So glad things are looking a little better for Jim. I love making " frozen banana ice cream" with other fresh berries for Kathleen is delicious. I mentioned in my other post about the awful...
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    Rose, I wish I could help you! I've read your...

    Rose, I wish I could help you! I've read your last 2 posts and first I have to weigh in about the awful treatment in the nursing home. My mom was in one for a month in February waiting to get...
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    Rose, keeping the prayers coming for you and Jim....

    Rose, keeping the prayers coming for you and Jim. Thank you for the update. I hope you got at least a little rest before heading back to the hospital.
    Mary Grace
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    Rose, I'm sorry to hear this. Sending powerful...

    Rose, I'm sorry to hear this. Sending powerful healing prayers your way.
    Mary Grace
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    OMG Rose I am just now seeing this! My chin about...

    OMG Rose I am just now seeing this! My chin about hit the floor, and then the tears! I just can't tell you how shocked and saddened I am to hear this. I feel like it's just a dream and I'll wake up....
  28. Thread: Jim's Update

    by mg12061
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    oh Rose I'm so sorry for this tun of events. I've...

    oh Rose I'm so sorry for this tun of events. I've been reading posts but haven't had time to respond. I will keep very strong prayers coming for your family. It must be so hard to be away from Jim...
  29. Thread: Jim's Update

    by mg12061
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    LOL Rose, I didn't need any breaks ! After that...

    LOL Rose, I didn't need any breaks ! After that first sentence I got up topped off my coffee and heated up my lavender neck wrap.
    But it does tire me just reading your post. So much to do but I...
  30. Thread: Jim's Update

    by mg12061
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    So glad that Jim is on board with the movement...

    So glad that Jim is on board with the movement plan. My daughter teaches Yoga and I've done some yoga classes. I keep saying I"m going to do this on a regular basis (since you can get classes...
  31. Thread: Jim's Update

    by mg12061
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    Rose your movement plan sounds wonderful. Sounds...

    Rose your movement plan sounds wonderful. Sounds relaxing yet productive. I hope it is helpful to you both.
    Mary Grace
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    Oh Donna just reading this! Wow what an ordeal!...

    Oh Donna just reading this! Wow what an ordeal! I'm so so sorry. Sending healing prayers for Nick.
    Mary Grace
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    Donna so sorry to hear this! Sending many prayers...

    Donna so sorry to hear this! Sending many prayers your way.

    Mary Grace
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    Rose, What beautiful words spreading such a...

    Rose, What beautiful words spreading such a wonderful story. Your devotion, love, compassion, faith, hope, and yes some medical knowledge thrown in there too has brought your family and of course all...
  35. Thread: Jim's Update

    by mg12061
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    OH Rose!! I am so happy to hear this! You must...

    OH Rose!! I am so happy to hear this! You must feel some relief. Given a renewed positive outlook will certainly help you all to continue with great hope and positive thinking. This gives energy and...
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    Donna, So sorry to hear this! I hope things are...

    Donna, So sorry to hear this! I hope things are looking better today! Praying this is easily fixed.
    I will probably rest Bohemian Rhapsody at some point... I saw a Star Is Born in the theater but...
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    Rose, So glad you were able to see both films. I...

    Rose, So glad you were able to see both films. I haven't seen Bohemian Rhapsody yet. I've seen a lot of clips and thank you for pointing out the really bad prosthetic teeth! Everyone seems to...
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    Funnylegs, That's exactly it "killjoy". I don't...

    Funnylegs, That's exactly it "killjoy". I don't like seeing "inspiration ****", and having participated in this event 2 years in a row it is not that at all. I know it's done with all good intentions...
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    Oh Rose that does sound painful! I pray that you...

    Oh Rose that does sound painful! I pray that you can coordinate everyone and get this under control and healed. I'm guessing that even if Jim wouldn't tell you any ill affects from his overdoing it...
  40. Thread: Jim's Update

    by mg12061
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    Rose, I totally understand your frustration with...

    Rose, I totally understand your frustration with the gown situation. You are right to have these concerns and address it. That said it's not easy to do that with those you love. But I'm certain they...
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    Thank you everyone! Kathleen LOVES a party of any...

    Thank you everyone! Kathleen LOVES a party of any kind. LOVES music of all kinds. Music has always been her therapy, it pushes her through difficult things and through pain. Her song request was...
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    Kathleen's Night To Shine!

    Kathleen attended the Tim Tebow Night To Shine Prom. It was an amazing night. Red Carpet, Dancing, dinner, Corsage, Limo Ride, pictures, and everyone is crowned King and Queen of the prom at the end...
  43. Thread: Jim's Update

    by mg12061
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    Rose, prayers as always for your family! I'm Jim...

    Rose, prayers as always for your family! I'm Jim is recovering but so sorry for all the discomfort and "damage" to the sight. So sorry they're just not checking the chart thoroughly! It's really...
  44. Thread: Jim's Update

    by mg12061
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    Rose, So many things to worry about! I wish I...

    Rose, So many things to worry about! I wish I could help or even give you a big hug! I hope you feel the prayers coming your way. I don't know much about a marrow test but I was with Kathleen when...
  45. Thread: Callyflower

    by mg12061
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    So glad you're healing well. I' sure your...

    So glad you're healing well. I' sure your competitive side is helping you along LOL. I have bunions but they're not yet painful. Just annoying when it comes to getting shoes. Kathleen does also hers...
  46. Thread: Callyflower

    by mg12061
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    cauliflower, What was your surgery for? That's...

    cauliflower, What was your surgery for? That's quite a lot of stitches! I hope the pain is managed well because it looks quite painful. So glad you have those beautiful cat taking care of you! They...
  47. Thread: Jim's Update

    by mg12061
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    Funnylegs, I don't know if it's typical to use...

    Funnylegs, I don't know if it's typical to use the Baclofen for stroke recovery. Kathleen was having awful leg cramps all night long when she laid down to try and sleep. She would just cry and her...
  48. Thread: Jim's Update

    by mg12061
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    funny legs, No one should be left to their own in...

    funny legs, No one should be left to their own in a hospital an advocate is needed. That's why I felt so awful for Rose trying to advocate from a distance!! ! In general Kathleen has gotten good care...
  49. Thread: Jim's Update

    by mg12061
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    Oh Rose just reading all of this is...

    Oh Rose just reading all of this is heartbreaking! I wish I could do something to take away some stress and allow some rest for you! Dealing with Hospital personal is just so exhausting. I think...
  50. Thread: 17 years!

    by mg12061
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    Funnylegs, I'll definitely check out both of...

    Funnylegs, I'll definitely check out both of those links! Thank you. I'd love to add a post about Kathleen's journey. We always take advantage of educating others about pediatric stroke and moyamoya....
  51. Thread: 17 years!

    by mg12061
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    A little update for Kathleen... We had a...

    A little update for Kathleen... We had a Shriner's appointment Thursday. We are really going to miss the care we've gotten there. She will age out in March when she turns 22. She had an electronic...
  52. Thread: Jim's Update

    by mg12061
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    Rose so glad this all resolved without extreme...

    Rose so glad this all resolved without extreme measures! I hear you about not wanting to act rashly. Also you've had so much experience and knew exactly what you needed to do first. It's experience...
  53. Thread: 17 years!

    by mg12061
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    17 years!

    Hard to believe yesterday January 18th marks 17 years since Kathleen's first stroke, she was almost 5 years old. Like most people I could not have conceived the idea that a young child could suffer a...
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    I didn't read the article But Kathleen got Botox...

    I didn't read the article But Kathleen got Botox for several years in her ankle for spasticity from stroke. It worked great for probably 4-5 years (upping the dose just once). Then it stopped working...
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    Glad to hear you've gotten some good input and...

    Glad to hear you've gotten some good input and more nursing support for the wounds. I'm not surprised that the wounds aren't as bad as they could have been, you do such an amazing job keeping...
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    Funnylegs, I will check with my son about cost of...

    Funnylegs, I will check with my son about cost of the VHS transfer thingy (like my tech language? LOL). I'm pretty sure he did a little research on it.
    Rose, I absolutely believe in the...
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    Funnylegs, So sorry I thought I had responded to...

    Funnylegs, So sorry I thought I had responded to this LOL. Funny you mention the ice pack that's exactly what she asked for to calm her raw nose. I think her sensation changes from time to time....
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    Wow so much for you to sort out daily! I wish I...

    Wow so much for you to sort out daily! I wish I could help or even had words to make it all easier for you. All I can do is send my warm hugs and prayers your way. I hope all goes smoothly with your...
  59. Thread: Jim's Update

    by mg12061
    Replies
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    109,216

    Rose, I'm so glad to hear some good news. Thank...

    Rose, I'm so glad to hear some good news. Thank you for the little reminder of what the past 2 years journey has been! Amazing what has been your reality for the past couple years on this cancer...
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    Update from Kathleen

    We had a wonderful Christmas. We had our usual dinner that somehow became our tradition, Eggs and bacon and hash brown potatoes. Xmas Dinner at my sisters house.
    The best thing of all is we finally...
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    Rose, So glad things have gone smoothly, busy but...

    Rose, So glad things have gone smoothly, busy but smoothly... Your Christmas dinner sounds wonderful and leftovers is the best part sometimes. I made a big lasagna to bring to my sisters and we've...
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    Rose thank you always for the healing prayers. I...

    Rose thank you always for the healing prayers. I love the Christmas season, but what I love has nothing to do with gifts or shopping. I love the sounds and sights, the music and beautiful lights and...
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    Rose what a wonderful update! I had to wait a bit...

    Rose what a wonderful update! I had to wait a bit for the tears to clear from my eyes before I wrote back. John sounds like a lovely blessing. I'm so glad he is in your life and cares so much for all...
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    Thank you Rose! I love hen we can be all...

    Thank you Rose! I love hen we can be all together!
    Kathleen seemed to be getting better but now I think it's getting worse again. If it doesn't seem better today I think I'll have to break down and...
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    Rose, What a rough patch your family has been...

    Rose, What a rough patch your family has been going through! I'm so so glad you have John to help out. He sounds like a real life saver. Praying that things take a better turn and you all get some...
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    Happy Thanksgiving! and update...

    I hope that everyone had a blessed and happy Thanksgiving. I am thankful for all the gifts my family has been blessed with. We had dinner at Patrick's new apartment with our family and his girl...
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    Rose I'm so so sorry for all this stress! YOu're...

    Rose I'm so so sorry for all this stress! YOu're exactly right something needs to go right!! I so wish I could help. Praying hard that this gets resolved without any added stress to your family!
    ...
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    Rose thanks for the update. I did grab my coffee,...

    Rose thanks for the update. I did grab my coffee, this is my alone quiet time early in the AM I get to actually sit and enjoy my coffee. It's a bit cold though so I use my heated neck wrap and feel...
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    Rose, I'm glad to hear you are not in danger in...

    Rose, I'm glad to hear you are not in danger in regards to the fires. I'm also aware how something of this magnitude affects the whole state. (and beyond). I feel awful for the families affected. It...
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    Funnylegs, Thank you for your sweet words! Thanks...

    Funnylegs, Thank you for your sweet words! Thanks also to your teacher for the reassuring information. She's a pretty strong young lady and had gained everything but her left hand and arm within a...
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    Rose, I'm glad things have settled down for Jon a...

    Rose, I'm glad things have settled down for Jon a little, and your family got some rest. You really are a well oiled machine! I can picture the whole process as I read it so you're also a great...
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    Rose I"m so sorry to hear this. Your family must...

    Rose I"m so sorry to hear this. Your family must be so exhausted. Sending prayers for healing and rest for your family.
    Mary Grace
  73. Thread: Jim's Update

    by mg12061
    Replies
    975
    Views
    109,216

    Rose, So glad things are going well. I love...

    Rose, So glad things are going well. I love reading these positive posts. You and your family are never far from my thoughts and always in my prayers.

    Mary Grace
  74. Thread: Jim's Update

    by mg12061
    Replies
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    109,216

    Rose, as always so much going on! And as always...

    Rose, as always so much going on! And as always I'm amazed! I read updates frequently but so sorry I don't always get round to writing. Your family is always in my prayers. I loved especially...
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    Gosh Rose I'm so sorry you have all this going...

    Gosh Rose I'm so sorry you have all this going on. I wish I could help I'm not a chef but I can cook LOL. I've been reading and praying for some relief I hope last night was better for everyone and...
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