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Thread: Kathleen update....

  1. #11
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    thanks funny legs, Yes I'm glad they did a new brace! We've had other places try to fix and adjust so much it just gets worse.

    Rose, thank you Kathleen improved each day. It was up and down for. a couple of days but much better by Thursday. She willed herself to be good by Friday. She hates missing school on her favorite day. They do cooking on Friday. She had a great day. Her TA said she was "full of it" We will most likely lay low over the weekend. I do have to get her out to buy a birthday gift for her dad. Dad turns 58 tomorrow! She loves a party so we'll celebrate small scale. His favorite dinner is chicken parm. I may have to make that.
    Praying everyone here is healthy and enjoys the weekend!
    Mary Grace

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  3. #12
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    ((((((Mary Grace)))))) ~

    Wonderful news that Kathleen is feeling so much better, even well enough to return to school for Friday cooking class!

    HAPPY BIRTHDAY DAD! Still a youngster, by my standards, anyway!

    Hope you have a great time celebrating ~

    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 has finished her antibiotic and feeling good. Today is her appointment with the GI Dr. She has been taking Omeprazole for a couple months. It seemed to help for a few weeks but her symptoms are coming back. Especially the difficulty swallowing. I say difficult but I don't actually know if she has trouble it sounds like she's swallowing "hard" like she took a huge gulp of something. She has huge burps but not as often. Her belly has lots of grumbly sounds she complains about. So we'll see what he thinks about it all. he's really great and has always been our go to for a lot of issues.
    Her foot is looking much better. We will get hr new AFO in a few weeks. She's walking great. She had her last bowling on Sunday and she got a 122 and a 99!!! She beat the other two girls on her team (they weren't happy) Kathleen on the other hand is quite happy with ever single throw! Especially if she can manage to get it to jump lanes! Yes at least once a game she get's it into another lane. Once she actually got 8 pins down on the other lane. It's pretty hillariouse. She cracks up! My son and his girl friend took her to a local farm to see the baby animals and she had a blast. When I get the pictures from the I'll post some. The weather for the past 4 days was beautiful! Kathleen loves this spring weather not too hot or too cold. Great for getting in some bike rides.
    Keeping all of the brain talk family in my prayers!!!
    ************************************************** ************************************************** *****************
    Saw the GI Dr. Kathleen needs a colonoscopy (will need one every 2 years now that she's 21 for the Crohn's). So he will also order an endoscopy at the same time. Not sure what day yet but most likely within a couple weeks. Since we do a cecostomy flush with golytely daily she will just do a clear fluid day and 2 flushes the day before the colonoscopy. Also go off aspirin for a few days prior (probably in case they biopsy anything).
    Mary Grace
    Last edited by mg12061; 04-25-2018 at 03:44 PM.

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

    Great news about Kathleen's foot and new AFO! I'm grateful that the antibiotics were effective.

    Always love to see photos of Kathleen and your family. I'm so happy for her that she has bowling and baby farm animals and gorgeous Spring weather to enjoy.

    Will Kathleen have anesthesia for the colonoscopy and endoscopy?

    Please let us know the date of the tests, so I can focus my prayers for her and you that day.

    Meanwhile, I will pray that Kathleen's discomfort subsides.

    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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  9. #15
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    Quote Originally Posted by mg12061 View Post
    This quote is hidden because you are ignoring this member. Show Quote
    Kathleen has finished her antibiotic and feeling good. Today is her appointment with the GI Dr. She has been taking Omeprazole for a couple months. It seemed to help for a few weeks but her symptoms are coming back. Especially the difficulty swallowing. I say difficult but I don't actually know if she has trouble it sounds like she's swallowing "hard" like she took a huge gulp of something. She has huge burps but not as often. Her belly has lots of grumbly sounds she complains about. So we'll see what he thinks about it all. he's really great and has always been our go to for a lot of issues.
    Her foot is looking much better. We will get hr new AFO in a few weeks. She's walking great. She had her last bowling on Sunday and she got a 122 and a 99!!! She beat the other two girls on her team (they weren't happy) Kathleen on the other hand is quite happy with ever single throw! Especially if she can manage to get it to jump lanes! Yes at least once a game she get's it into another lane. Once she actually got 8 pins down on the other lane. It's pretty hillariouse. She cracks up! My son and his girl friend took her to a local farm to see the baby animals and she had a blast. When I get the pictures from the I'll post some. The weather for the past 4 days was beautiful! Kathleen loves this spring weather not too hot or too cold. Great for getting in some bike rides.
    Keeping all of the brain talk family in my prayers!!!
    ************************************************** ************************************************** *****************
    Saw the GI Dr. Kathleen needs a colonoscopy (will need one every 2 years now that she's 21 for the Crohn's). So he will also order an endoscopy at the same time. Not sure what day yet but most likely within a couple weeks. Since we do a cecostomy flush with golytely daily she will just do a clear fluid day and 2 flushes the day before the colonoscopy. Also go off aspirin for a few days prior (probably in case they biopsy anything).
    Mary Grace
    As Rose said I'm so glad to hear about the AFO. Hmmm...I wonder if since the stroke Kathleen "thinks" about swallowing or if she has spasticity in her throat muscle leading to bigger muscle movements/sounds? I have no swallowing issues but have throat muscles that seem a bit big and I think its the CP.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/astrokeofendurance.php

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  11. #16
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    Kathleen's endoscopy and colonoscopy will be Tuesday 5/8. She will have anesthesia for the tests. Her prep will be all liquid diet Monday and we'll do 2 cecostomy flush instead of one. This replaces the typical colonoscopy prep. She also saw her urologist on Wednesday. Her ultrasound showed fluid backed up into her right kidney. This is indicative of a possible change in pressure in her bladder. Something we need to keep a close eye on so she'll go back in 6 months for retesting instead of the usual 1 year. If it's any worse she will need a urodynamic study.
    Funnylegs, It makes sense that there could be spasticity in any muscle. The GI Dr. mentioned issues with her gastric muscles since she has issues with her intestinal mobility. So getting the endoscopy is the first step. If this shows no issues then she may need an esophageal manometry which will show how the muscles are working... Thanks for all your good thoughts. I'll keep you posted if I know anything from the test on the day of. Sometimes they have answers right away with this.
    Mary Grace

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

    Oh my! That sounds like a lot to go through in one day! I will pray that you get the results you need for a simple resolution.

    What are the possible causes of pressure change in the bladder?

    I'll be thinking of you and Kathleen on 5/8 and sending healing, comforting thoughts.

    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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    Very long 2 days! Yesterday no solid food all day and then 2 cecostomy flushes. The hardest was this morning she wanted breakfast sooooo bad. She even said she would eat jello which I know she was very tired of eating. We were scheduled to arrive at 10 for 11:00 procedure. They were over an hour behind. She had nothing to drink till after 2 and solid food after 3. She's doing much better now. Dr. said the scopes both looked good. He did a lot of biopsies so we wait for the results. Probably about a week.

    Rose the pressure changes in her bladder are because she has neurogenic bladder. Her bladder doesn't contract and then relax the way it should and sometimes if the pressure is high and it's not relaxing it backs up into the kidneys. Her bladder hod urine like a reservoir, and when she does go it doesn't empty. This is why we Cath. her. So we're just going to keep a close eye on this and make sure it doesn't continue to get worse.
    Mary Grace

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  17. #19
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    ((((((Mary Grace & Kathleen)))))) ~

    That's so hard to go through hunger before tests, and the waiting makes it worse. I'm so glad that Kathleen is feeling better now, and I hope she's enjoying all of her favorite foods. It can't be very comfortable to be prodded from both ends. Bless you, Kathleen ~ you are amazing!

    That's positive news that everything looks good! I will pray that all of the biopsies are clear.

    Thank you for explaining neurogenic bladder to me. You explained it so clearly, and I've never really understood it before. I've often wondered if Jon has neurogenic bladder, but no doctor has ever given him that diagnosis.

    Isn't it incredible that our children can go through so much, and still smile, find joy and love life?

    I hope you get the results soon. Meanwhile, here's to lovely Spring weather and days outside!

    Healing prayers always on the way ~

    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's GI Dr. called and all her bloodwowrk was good and her biopsies were good. Good news. But still not sure what's going on with her swallowing so he is ordering a fluoroscopy. Hopefully it will get done quickly because he will be out for a few months having heart surgery.

    I'm going to include a few pictures of Kathleen with her brother Patrick at the animal farm he brought her to a few weeks ago. Patrick will be moving out into his own apartment next weekend. Kathleen( and of course myself) will miss him so much. He won't be too far but still will miss him daily. I told her a couple times he's moving and her response was " I don't think so". LOL He has been her favorite person since she was born. He challenges her, teases her (and she him),and adores her! V__EC62.jpg

    V__10DE.jpg

    V__EDAF.jpg

    Mary Grace
    Last edited by mg12061; 05-20-2018 at 03:37 AM.

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