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Thread: Spring break!

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    Default Spring break!

    Spring break is coming to an end and finally the weather is now feeling like spring. Kathleen and I had a great vacation! She was feeling pretty good and we got a lot of things accomplished. Together we took a walk with our dog and a bike ride on Monday when it was really nice out. When the weather wasn't so nice we did "work sheets" Kathleen has always loved doing "school work" in workbooks that I buy. Of course she always needs carrots and hummus while working LOL. She did a lot of word searches also. We went to the mall one day and found a dress for the dinner we're going to for her sister next Friday. We went to Build a Bear, and she picked a Teenage Mutant Ninja Turtle to make. We even added music to it!. Friday she decided she wanted steak for dinner. I'm not a vegetarian, I do eat a little bit of chicken (less and less) and fish. But I never eat red meat, I've never really liked it. So once in a while she, Patrick or her dad decide they need red meat. So we went to the market and picked out a steak and a marinade and some other things she wanted to eat. It made for a great "lesson" in looking at the labels for gluten free. (I should take her dad out for a lesson on this lol). Yesterday she was a little off, complaining about her left leg tight itchy and cold. Today is bowling and the weather is supposed to be perfect so maybe a walk or bike ride too. Tomorrow is urology and Tuesday is Shriner's. I'll update about both.
    Mary Grace

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    Oh I completely forgot to add the things I accomplished on my own too! Cleaning Kathleen's room. I don't know how we collect so much stuff. Cleaning my laundry room and a couple of closets. I'm thinking today I may need to dig out some short sleeve shirts for the upcoming week. It'll be warming up into the 60's!
    Mary Grace

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    ((((((Mary Grace)))))) ~

    Thank you for sharing your Spring Break with Kathleen. Sounds like you two have been having a great time together. Carrots and hummus ~ yummy! Delicious and nutritious! Hope you had fun bowling today.

    Happy to hear that your weather is warming up to the 60s. Previous forecasts for us with 90 degree weather by the weekend have been revised to mid-80s. We are in the midst of a terrible drought, so that is bad news.

    Congratulations on your Spring Cleaning! It feels good, doesn't it?

    I'll be thinking of you and Kathleen tomorrow and Tuesday and looking forward to your updates.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Thanks Rose, The sun feels so good it's been really nice out. I'm trying to enjoy it before it gets to be 90. We need to put a new liner in our pool this year so I'm hoping it won't take too long to get it opened.
    Kathleen's Urology appointment went great on Monday. She doesn't have to go back for a year! It's wonderful to hear those words. I can check one off our list for a while.

    Kathleen had her appointment at Shriner's yesterday. We were very happy how the appointment went. We've been there before and it was well worth the trip for us. The Surgeon didn't think we needed to rush to surgery to stabilize her neck. We need to be careful nothing that would jostle her neck, and watch it closely. Another MRI in August. We talked about her left leg issues from the strokes and he will do a Gait Analysis the end of July. We need to wait for the last Botox to wear off completely to get a baseline. Then he may be able to do a heel cord lengthening which would get her back into her KAFO. The Botox isn't working anymore and only about a month after the last injections she's already complaining about it being tight. He may also be able to work on her foot and help with the "rolling' ankle. So I guess I have some homework to do on the surgeries he's thinking about...
    Mary Grace

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    ((((((Mary Grace)))))) ~

    So glad that Kathleen's urology appointment went well, and that her catheter is working for her. What a relief!

    Sounds like she received a thorough exam from Shriner's. I hope that Kathleen won't require surgery, but if she does, then I'm glad you have a surgeon you like and trust.

    Does Kathleen use your pool? I'm wondering whether that would be good exercise for her legs.

    Hope you can enjoy your lovely weather longer than usual after the brutal winter that attacked the East Coast.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Just catching up on here... Kathleen does use our pool a bit but in general he water isn't warm enough for her. I'd love to have a heater for it,maybe someday, or a hot tub. We did pool therapy for a while and it's really awesome for her when the water is a theraputic temperature.It loosens her muscles and really helped with balance. The place we went to is closed now and I haven't found a place close enough. It got pretty cold again even had snow flurries a coup-le days last week. Hoping for a warm up this week!
    Mary Grace

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