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Thread: update...

  1. #1
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    Default update...

    Kathleen is loving school as always. A little slow getting out of bed this morning but a big smile when she arrived at school. She has some wonderful caring people around her all day. She will start a reg. PE class this year. She signed up to play flag football in instead of walking the track(the other choice). I wasn't surprised she loves football and plays in a league for children with disabilities. So far I'm going in mid day to do her catheter until we go back to the urologist for the urodynamic testing. Then we'll figure out how often we need to cath during the day. If it needs to be done every day at school we'll get the nurse involved. I already spoke with herjust in case. I'm sending in some cooking supplies this year because OT wants to work on the kitchen skills and cooking. I have a bin full of gluten free stuff and bowls pans and utensils that they can use for her gluten free cooking. I'm very excited about this for her she loves cooking. I'm praying that this will be a very healthy year. Once we get past the urodynamic test and her MRI I think we will be able to rest easier. She also has a check-up on Monday with her primary care Dr. We don't actually see him very often, he just writes our referrals mostly and scripts.
    Mary G.

  2. #2
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Mary Grace & Kathleen))))))

    Football and cooking ~ quite the combination!

    I hope Kathleen can forego needing to be cathed at school. Is the urodynamic test scheduled?

    May every day be a healthy, happy day for Kathleen!

    Love & Light,

    Rose
    Mom to Jon, 47, (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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    Yes, football and cooking - similar interests to Nicholas! I am so happy that Kathleen is off to a great start to her school year. I hope she is healthy for the duration - wouldn't that be something? And I do hope that the nurse does the cath too - you need a break, Mary Grace! I send you both a hug and all best wishes for a wonderful year at school. xoxo Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  4. #4
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    Rose and Donna, Thank you both for your kind words. Kathleen loves school so much I hated to see her miss so much last year. She is getting to sleep earlier and getting up happy and ready to go so far. We will go to the high school football game this Thursday, I have to break the news to her that she is not playing though. She wants to be their quarterback. She will be playing for her team on Saturday though. Kathleen's MRI for her neck is this Thursday and her Urodynamic test is next Tuesday. Today she has an appointment with her PC mostly to do some yearly bloodwork and sign her school physical paper.
    Mary G.

  5. #5
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    ((((((Mary Grace & Kathleen))))))

    I hope Kathleen isn't too disappointed in not being able to quarterback for her high school team on Thursday. But her glory time on the field Saturday will make up for it. Bless her!

    How wonderful that she's falling asleep earlier and rising with eager happiness. This is quality of life. Those two procedures were such great decisions, and you, your husband, and Kathleen were so brave to go forward with them. And now, Kathleen has what we all have been praying for her to have. The life she loves.

    Prayers going up for good results from the neck MRI and the Urodynamic test.

    Keep the good news coming!

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  6. #6
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    Rose it is exactly what we've been praying for, thank you all for the powerful prayers. She is coming home from school tired BUT the difference this year is she's making it all day and she's not miserable tired when she gets home. Last year at this time she was not even getting out f bed some days. What a difference. It's been 3 long years of peeling away all the layers of health issues. Thursdays game was postponed because of bad storms to go to. It was rescheduled to Saturday but we had a family reunion. She did get to play on Saturday morning with her team and had a ball. Her blood work came back all good except for vitamin D so she's taking a supplement now. She had her MRI Thursday but I don't have the results yet. Tuesday is her urodynamic test, hopefully it won't be as traumatic as the last one since she has a stoma to cath now.
    Mary G.

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    Ohhh Mary Grace, it sounds like everything is going in the right direction FINALLY!!!!! I am so happy for you both. x Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  8. #8
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    ((((((Mary Grace & Kathleen))))))

    How wonderful it is to read of Kathleen's incredible improvements and well being! It is an honor to pray for you, and I give thanks for the answers you've received.

    Vitamin D is easy to remedy, and it may also give Kathleen more energy. It does boost the immune system, so that's a major benefit.

    So glad Kathleen was able to play in her game on Saturday. Plus a family reunion. Just great!

    Praying that all goes very well with the Urodynamic test on Tuesday, and that results from all tests are good!

    Love & Light,

    Rose
    Mom to Jon, 47, (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.

  9. #9
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Glad to hear Kathleen is having a great start to her school year! It is so nice that she has the stamina to make it through the whole day. Caitlin has been doing well that way also. Hasn't been slumped on the bus ride home yet! Hope she does well on her flag football team!!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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