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Ian!!
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Thread: Ian!!

  1. #1
    Senior Member
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    Amarillo TX
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    Ian!!

    Hello Everyone.

    I am NOT new here. But, because it has been such a long time, I am finding myself again drawn to my MPS family. Life has been such a whirl wind since I last visited the forum. I was married last time I frequented this forum, and between the doctor visits and regular life, I have been so overwhelmed that I had to just let go of alot of things and just go out and find things out on my own. I live in Colorado now with Ian, and my daughter lives in Texas with her father.

    For those of you who don't know us, Ian was diagnosed with Sanfilippo A in 2009, We did the UofM study, then Ian regressed alot, and I divorced.

    I first wanted to say thank you to the members who have sent private messages checking in on Ian and how he is doing, it is much appreciated. You have no idea how lonely it has gotten, and Hello Jessica Wellman!! I find myself missing my mps family because you all are truly the only people who could ever understand how it feels to live the kind of lives we do.

    Where are we now?
    We are doing okay considering the degeneration over the last couple of years. It has been disturbing how quickly things have gone downhill. I believe last time I logged in here Ian was getting a g-tube put in, and he did quite well with that. He is back up to weight now! It has taken this long to get him back up to weight, but the liquid diet has done it's job. He belly still works but is slow. His swallowing continues to regress, and he only takes thickened liquids by mouth. He can no longer tolerate walking for more than 20ft or so. His feet are clubbing and there is contracture in the wrists. He had his first true grand mal a few weeks ago where we had to use diastat. He has avascular necrosis of the hip, chronic pain, and is sleeping more. But all in all, over the last couple of years Ian has gone from my little boy to be engulfed with the symptoms of this horrible disease. I am hoping we plateau soon.
    married to Derrick
    Mom to
    Ian MPS 3A
    Tesla Unaffected

    Give it to God.

  2. #2
    Forum Helper - Moderator
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    April 14, 2009
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    Springfield, Illinois
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    Welcome back!! My eyes welled with tears hearing about your journey the past few years. Not just because of what Sanfilippo has done to Ian, but because it is great to hear from you. (((Hug)))

    Jake is 7 years old and is having some mobility issues. We are going to have a swallow study this fall due to some aspiration issues. He also had a tonic seizure this summer so we are in the process of starting him on a seizure medicine. This medicine of course interacts with one if his anxiety meds so we will have to wean him off of that in a few weeks so we are not looking forward to that. Basically all of these are expected issues, so we are just taking them as they come.

    Luckily we are able to still see our sweet boy shine through every day so we manage to laugh every day. Lord knows if we didn't laugh we would cry!

    So glad to hear from you. The forum is not as active as it once was. Not sure if you heard, Elizabeth, Daniel's mom, passed away earlier this year. So heartbreaking.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  3. #3
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    OMG I am so sad. I was hoping to see her here.
    What happened with her? I feel terrible now that I was not here.

    Is Daniel still with us?
    married to Derrick
    Mom to
    Ian MPS 3A
    Tesla Unaffected

    Give it to God.

  4. #4
    Senior Member
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    April 16, 2009
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    And I remember you Tara.
    This forum saved my life when Ian was first diagnosed....you guys at this forum were here when my family was not (partly why I am divorced now) It was one of the hardest times in my life, and I could never forget you all. I just had to break to get my life in order.
    married to Derrick
    Mom to
    Ian MPS 3A
    Tesla Unaffected

    Give it to God.

  5. #5
    Forum Helper - Moderator
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    In late 2012 Elizabeth was diagnosed with breast cancer. She went through treatment and was in remission I believe for awhile but cancer came back in another area. She passed away in May of this year. I believe Daniel is 23 this year. Elizabeth did her best in her last days to teach her husband Peter how to take care of Daniel with his meds and supplements. Patty is in contact with Peter when he has questions on Daniel's care.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

  6. #6
    Forum Helper - Moderator
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    March 26, 2004
    Location
    Near Trondheim, Norway
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    Welcome back!
    Vibeke
    I have MPS6 (Maroteaux Lamy syndrome), on ERT. I'm from Norway

    "Every dream is a vision of hope"

    http://www2.caringbridge.org/europe/vibeke/
    http://www.caringbridge.org/visit/bika

  7. #7
    Staff Advisor & Tech Support
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    February 15, 2004
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    Quote Originally Posted by Jake's Mom View Post
    Welcome back!! My eyes welled with tears hearing about your journey the past few years. Not just because of what Sanfilippo has done to Ian, but because it is great to hear from you. (((Hug)))
    Same here! It is so great to hear from you Shelly Belly

    And I agree, the forum is not the same without Elizabeth. After I stepped down she was the backbone that held us all together. She refused to let me close this place. The forum was her lifeline. We miss her horribly.

    I keep waiting for Brian to get another job in Colorado. I miss it so bad! I simply love the mountains. Photo shoot with Ian if he ever gets back!!!
    Leave room in your heart for Angels to dance.
    This forum is maintained in loving memory of our daughter
    Kaitlynn Marie Wellman - April 3, 1991~August 9, 2004

    Find me at: JWellman Designs
    or on Facebook at /jwellmandesigns

  8. #8
    Senior Member
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    !!! It is so glad to see your faces. (er kind of online lol)

    I am just in knots about elizabeth. I believe she was in remission when I had to take a reality check and focus on stuff. I have been on facebook, but have steered clear of that until recently. This last year or so.

    I really miss this place. And as said before, this place saved my life when Ian was diagnosed. I was soooo lost.

    But anyway, focusing on the happy!! Jess we would love to. And thanks for the welcome back!

    **I sstill perfer the privacy of this place more than I do facebook.
    married to Derrick
    Mom to
    Ian MPS 3A
    Tesla Unaffected

    Give it to God.

  9. #9
    Forum Committee - Moderator
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    October 4, 2004
    Location
    Upstate NY
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    4,496
    Welcome back, Shelly and Ian!!! I hear you on the regression . It's been a rough summer here, too.
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  10. #10
    Forum Helper - Moderator
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    Quote Originally Posted by Robin View Post
    Welcome back, Shelly and Ian!!! I hear you on the regression . It's been a rough summer here, too.
    Ditto here.

    Since Jake started school it seems like we are constantly getting calls or notes about falling. We are getting to a hard stage where he is still mobile but unsteady at times. I would really hate to see him in a chair right now because I don't think he would like that, but for safety that might be in his future. Ugh.
    Tara

    Mom to Hannah and Luke (9 - twins) unaffected and Jake (7) MPS IIIA

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