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Thread: Grant the champ's latest news.

  1. #1
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    Thumbs up Grant the champ's latest news.

    G'day neuro buddies old and new. :)

    Here is our family news.

    GRANT

    Grant remains in championship mode regarding the seizures. In fact he is again in record territory. It is sooo exciting. Very stable and no tonic/clonics whatsoever. Thank you Jesus.

    His weight is now stable, so we don't have to worry about any strange reasons for the initial weight gain.

    The one issue we have is his coughing and spluttering which is very frequent. Over the last year and a half his coughing and spluttering has increased. He needs frequent suctioning. We just don't get it. It may be, and this is a long shot that the two new drugs, Vimpat and Frizium ( which he started about 1 1/2 year ago), are causing the coughing and spluttering. Hey Rose :), what do you reckon? It may also be reflux.

    On Wednesday I took Grant to see a gastro doc at his new hospital. It took almost a year to see him! But, he seemed very pro-active, which is a good start. We both agreed that the only way to investigate all the coughing and spluttering is for Grant to have a scope to see if he has problems. I signed the form, but of course the joint medical guardian also has to sign the form. I have emailed her and am waiting a response. Let's hope she is happy with Grant having a scope done, as she is very protective of Grant regarding any medical procedures.

    The gastro doc also mentioned that perhaps there might be a need for another fundoplication being done as Grant's first one, done when he had the VNS implant, is a fizzer and is in-situa (is that the term), but doesn't work.

    The gastro doc also said that perhaps we could look as a drug to increase Grant's gastric motility, but that is something that I would be very wary about.

    I purchased an Ipad 3 for Grant and I am now in the process of finding suitable programs for him. The programs have to be 100% in your face and have extremely simply graphics. He can't manually do anything at all, but he can be helped. I also purchased a portable loud speaker and cable so that Grant can have a blast. I already have a couple of fantastic music synthesis programs, which he can use by just swiping the screen :) If you have an Ipad, I can tell you the name of the program. It is quite unreal.

    ALISON

    This term is the school drama production for years 7 and 8. Alison is the producer, director, set designer, clothing consultant, and overall manager! She has two other teachers working with her. The drama is part of the curriculum for the term and it is all go, non-stop stuff. This is always the busiest term for Alison.

    ME

    My knee has now recovered. All it needed was time to heal. My back is now much better, and again, all that was needed was time :)

    ALISON'S MUM

    As you know, Alison's mum aged 90 is now living with us for as long as needed. She is no problem to care for. The only thing we have to watch out for is to make sure that the doesn't fall. She has a walker. She is very bent over. We have a carer coming in twice a week to give her a shower. We would like the carer three times a week, but Alison's mum insists that twice a week is enough.

    Each morning I have her do some jigsaw puzzles on the Ipad. We started off with her being able to do only one. Now she can do a handful without many problems. However the interface is too complicated. I wonder if there are any simple, repeat simple programs for someone 90 years old, who has never used a computer or Ipad before. What do you reckon?

    Alison's sister, who is a librarian, has taken Wednesday afternoons off so that she can pick up Alison's mum and take her to see her hubby, who is in rehab with a corked thigh (footballer's thigh). The recovery of the injury is not very good. Alison's dad will now probably have to go to TCP (transitional care program). We have been taken Alison's mum once a week to see her hubby, but now we may alternate with Alison's sister, which will release us on a Saturday once a fortnight to do our own thing. Saturday is the only day of the week that we can leave Grant with a carer.

    We have Allison's parents booked in urgently to a facility, which is very posh. The facility does not have any vacancies at the moment. But that will be where they end up, if it is in six months time, or a year or whatever.

    BEK

    Hey a few of you know that dear Bek, aged 14, on Good Friday got a liver transplant. How unreal is that. She goes to Alison's school, and had been on the transplant list for 18 months. She was critically ill.

    For her Make a Wish, wish, she made a CD of 5 Christian songs. I am in the process of adding images to the songs and uploading the songs to youtube so that everyone can enjoy.

    Here are links to the two songs that I have uploaded so far. Make sure you have a listen and turn the volume up. http://www.youtube.com/watch?v=Z5yy5Z9Y2iA

    http://www.youtube.com/watch?v=6DcGg...feature=relmfu



    Bek came out of ICU two days ago. She is progressing well. The main concern is her breathing which is not crash hot. Her mum is a nurse and is keeping a close eye on her. In the state there have only been 3 liver transplants this year!

    So, there you go.

    With love to you all and hugs to all the precious kiddos out there.

    Paul, Alison extremely busy with the play, and Grant in championship mode but coughing and spluttering something awful!
    Foster parent, now medical guardian and administrator
    for Grant the champ aged 30, yes 30!

  2. #2
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    Sounds like a great update. Glad Grant is doing so well. Everyone is busy.
    Carrie mom to Amanda my new angel 12-29-07.NO LONGER DXD Multicystic Encephalomalcia, Acryptic CAH, Loved to watch mtv hits, wrestling, 3 stooges, Andy Griffith and Spongebob Square pants.

    And Josh 21 year old brain.

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Paul, Grant & Alison))))))

    It's good to hear from you, especially with good news about Grant.

    I'm not familiar with either Vimpat or Frisium, so I can't offer an opinion there, although it's possible they might contribute to excess secretions. One possible thought ~ how are Grant's gums and teeth? Dilantin wreaks havoc with gums and teeth. That has been a cause of excess oral secretions for my boys.

    Speaking of Dilantin, please be cautious about giving Grant any motility drugs, as they all interact with Dilantin. Reglan is particularly dangerous. Jon was given it twice in the hospital, against my requests, and it caused him to seize for 45 minutes requiring a lot of IV Ativan. Jon also has body movements now, which he didn't have before Reglan. Erythromyacin, which is an old time antibiotic, is also used for motility. It interacts with Dilantin.

    Any chance that Grant has thrush on his tongue? Does his tongue have a white coating? If so, he might need a probiotic to get rid of the yeast. That can also contribute to excess secretions (did/has for my boys).

    Jon gets excess secretions from fluid retention. His motility is poor now also, so we get residuals frequently at meal times.

    Grant's iPad sounds terrific, and I hope he truly enjoys it! Please be sure to report on that for us!

    Alison sure is busy, and you ~ I must have missed a post from you about your knee and back, but I'm glad that they are better now. I'm glad to hear that you and Alison will have opportunities to go out together. You need that break.

    I hope that your in-laws will be able to move into that posh facility and will receive excellent care there.

    Wonderful news that Bek is out of ICU and improving. My prayers for her complete healing continue. She has a lovely, sweet, innocent voice. Thank you for the videos.

    Keep the good news coming, Paul!

    Love & Light,

    Rose
    Mom to Jon, 49, (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. Our Angel Jon received his wings April 2019. Now, they watch over Jim and me.

  4. #4
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    Yay! Good news! Is it possible Grant is coughing from allergies? Just a thought. Ohh, lucky him! I want an ipad 3 now! Bek has a great voice.

  5. #5
    Distinguished Community Member andromeda31's Avatar
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    So glad things are going well! Hope the guardian gets back to you soon! :)

    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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