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Thread: Kathleen update....

  1. #21
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    ((((((Mary Grace & Kathleen)))))) ~

    Excellent news about Kathleen's test results. I hope the fluoroscopy will give you more insight. Scary that your doctor has to have heart surgery. May all go well for him.

    What precious photos of Kathleen and Patrick. Their love for each other is quite evident. It must be joyful and sad for Patrick to strike out on his own. I hope that he visits often.

    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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    Kathleen and I went to a concert of one of her favorite bands Journey! We also saw Def Leppard. Journey was great and played all her favorites. Def Lepard was REALLY loud she loved it and the light show was spectacular! So glad she loves to ROCK!
    Mary Grace

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  5. #23
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    ((((((Mary Grace)))))) ~

    What a great photo of you and Kathleen! Her smile is brighter than the stage lights!

    I like Journey also. And their new lead singer is an excellent replication of Steve Perry's voice. I watched a documentary on Journey, I think on Netflix. Jon has a concert video of journey with the lead singer before this current one, who also did a great job. They were recently inducted (last couple of years) in the Rock and Roll Hall of Fame. You might be able to find their HoF performance on YouTube.

    Def Leppard is a band I can take in small doses. Of course, the drummer is incredible. John gave Jon a Def Leppard concert CD, which Jon enjoys. Reminds me of the 80s and MTV, which was on ALL of the time in our house.

    Oh how I miss the days, when I took my boys to concerts (mostly Doobie Brothers ~ I knew their stage manager, who got us back stage passes, and at one concert, we were ON THE STAGE!).

    What a memorable night for you and Kathleen!

    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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  7. #24
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    Kathleen only had 2 more days of school! This year went crazy fast.
    She's been getting some bike rides in when the weather permits. We opened our pool finally but the water is very cold still. Kelly (Kathleen's sister) will turn 31 tomorrow so we went out shopping today for her birthday. She also picked out a little something for herself. Pajamas, Angler fish ones since the angler fish is her favorite fish.
    I've been reading a cookbook with some healthy whole food recipes and starting to get some of the ingredients to make some different things to freeze, mostly for Kathleen but trying to eat a little healthier as well. we do pretty well but there's room for improvement. I just bought Garbonzo bean flour so I'm anziouse to see how it bakes muffins and breads.
    Kathleen had her fluoroscopy. I'm so proud of her she did great!I was so proud of her eating and drinking things with barium! The tech told her the drink was like apple juice. She drank 3 different thickness without batting an eye. BUT after the test on the way out she said "I'm not a fan of that apple juice" LOL.
    We should be getting back to the gym since we just broke down and bought a second car. First one has been payed for but without Patrick and Kelly here we have only one car all the time. I have to say Patrick is so thoughtful generous and caring and I owe him so much. For Mother's Day he gave me 1,000$ cash to put towards our car!!! That's one amazing kid!! I cried, and tried to give it back but he's have not such thing. He's all moved out and doing well. He stops by a lot for lunch since he works close by.
    My family here are always in my thoughts and prayers for health and happiness!
    Mary Grace

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  9. #25
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    ((((((Mary Grace)))))) ~

    I'm glad everything went well with Kathleen's fluoroscopy. She is surely a trooper! She deserves those angler jammies after drinking that "apple juice." Do you have any idea when you get the results?

    The summer is probably going to be hot, so enjoy the cool weather while it's here. This weekend is the Belmont Stakes, and I always think of you now when the Crown season starts. I think Justify has a good chance of taking the Crown. I had a feeling about him before the Derby, and here he is, the only contender. Hope you have nice weather for the weekend.

    How wonderful of Patrick to give you money for a car. You have three truly remarkable children, Mary, and I know why they turned out that way.

    Good for you for creating new, healthy meals. I hope that the garbonzo bean flour works well. If you're looking for interesting and delicious veggie and fruit recipes, Forks Over Knives has many offerings.

    John's brother-in-law and Jon's nurse's son-in-law, who is a doctor, both had heart attacks recently. The doctor was in denial, until his wife got him to the ER, where he had a stent placed immediately and 90% blockage. And he's a doctor! Both of these men are now vegetarians and are eating a diet based on Forks Over Knives.

    I feel strongly that one of the reasons why Jim is doing so well, and why his heart is as healthy as it is, is because we've been vegetarians for over 20 years. Both John's BIL and the nurse's SIL were meat eaters and loved dairy (especially butter).

    Hope you and your family have a lovely weekend!

    Love & Light,



    Rose
    Last edited by Earth Mother 2 Angels; 06-07-2018 at 04:28 PM.
    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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  11. #26
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    Kathleen is doing well! We had our Wildwood NJ vacation and it was wonderful as usual! Kathleen had a marvelous time with all our friends. We enjoyed our 6am breakfast pool side with a couple of the early risers in the group. She swam played games and went on some rides with her brother and a friend. We also went to the Zoo. Not usually a fan of zoos and seeing all the enclosed animals but it was very clean and very natural looking.
    Now that we're settled and no school and no kids here to babysit (I only babysit teachers kids). I've gotten Kathleen back to the gym. Bike rides and walks when it's not 100 degrees outside (it has been close to that a lot this summer). working still on cleaning up our diets the biggest problem for Kathleen is what she drinks. She really likes water less and less. She always wants juice. I get low sugar but I will never buy sugar free because of the fake sweetener. So I'm looking at labels trying to find the lowest sugar drinks and hopefully likes. She has to stay hydrated because of her risk of strokes from the moyamoya.
    I've included a few pictures.
    36278644_10215659175654370_1755966742967877632_n.jpg36280137_10215659172694296_7952579140538859520_n.jpg36302487_10100510319073633_869490612674494464_n.jpg36337828_10100510884161193_4708048278342598656_o.jpgWP_20180627_003.jpgV__4E34.jpgWP_20180627_003.jpg
    WP_20180626_011.jpgWP_20180627_004.jpg
    Mary Grace

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  13. #27
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    ((((((Mary Grace)))))) ~

    Great photos! Looks like so much fun!!

    When I realized that Jon and Michael weren't getting enough water, because I was giving them juice, I decided to give them 1/2 water and 1/2 juice. They accepted that. Would Kathleen be okay with diluted juice?

    Or how about home made juice? You buy the fruit and make the juice with no sugar added, plus some water? Would Kathleen be interested in trying different fruits? Pomegranate? Plum? Papaya?

    Just trying to come up with some options here, because I know how important water is to our bodies. And how awful dehydration is.

    Smoothies, with more water than usual?

    i'll keep thinking. Meanwhile, enjoy your summer and thank you for sharing your vacation photos! Love them! Look at Kathleen's smile! She is Joy!

    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.

  14. #28
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    Quote Originally Posted by mg12061 View Post
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    Kathleen is doing well! We had our Wildwood NJ vacation and it was wonderful as usual! Kathleen had a marvelous time with all our friends. We enjoyed our 6am breakfast pool side with a couple of the early risers in the group. She swam played games and went on some rides with her brother and a friend. We also went to the Zoo. Not usually a fan of zoos and seeing all the enclosed animals but it was very clean and very natural looking.
    Now that we're settled and no school and no kids here to babysit (I only babysit teachers kids). I've gotten Kathleen back to the gym. Bike rides and walks when it's not 100 degrees outside (it has been close to that a lot this summer). working still on cleaning up our diets the biggest problem for Kathleen is what she drinks. She really likes water less and less. She always wants juice. I get low sugar but I will never buy sugar free because of the fake sweetener. So I'm looking at labels trying to find the lowest sugar drinks and hopefully likes. She has to stay hydrated because of her risk of strokes from the moyamoya.
    I've included a few pictures.
    36278644_10215659175654370_1755966742967877632_n.jpg36280137_10215659172694296_7952579140538859520_n.jpg36302487_10100510319073633_869490612674494464_n.jpg36337828_10100510884161193_4708048278342598656_o.jpgWP_20180627_003.jpgV__4E34.jpgWP_20180627_003.jpg
    WP_20180626_011.jpgWP_20180627_004.jpg
    Mary Grace
    Great photos! I second all of Rose's drink suggestions. When I was picky about water as a kid it also helped to just change the temp of the water i.e I could not stand room temp water so my family would give me hot or cold water instead and I would drink it. Is dehydration a risk in general for people who have had strokes? Or just the moyamoya stroke??
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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    Rose thanks for the great ideas! I forgot about adding more water to smoothies! Also trying new fruits, she loves fruit and eats quite a bit but adding more is a good idea.

    Funnylegs, I'm positive but I would imagine dehydration could be a stroke risk for anyone who is at a higher risk since it changes blood pressure and changes the blood vessels in the brain. Both are very important things to regulate in moaymoya. The moyamoya vessels are very tiny to begin with so any constriction of these can cause a stroke.
    Mary Grace

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  17. #30
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    ((((((Mary Grace)))))) ~

    You're so welcome! Papaya and plum are good fruits to keep the bowels moving well. You might be surprised how easily Kathleen accepts watered down juices. And it's really easy to add water to smoothies.

    Do you have the fluoroscopy results yet?

    When is Summer over for you? Is Kathleen returning to school?

    Enjoy the summer days that are left!

    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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