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Thread: August update!

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    I don't think your plate is full. I think your BANQUET TABLE is full! Wow!

    I'm so sorry that you dad is dealing with heart issues, and I hope that putting him off for 6 months is safe. Maybe he could get a second opinion, when he gets on Medicare? And, yeah, stop cutting down trees, Dad!

    Prayers going up that none of your children have inherited this, nor you, and I think you should be tested, regardless of the outcome of your children's tests. Just to be informed and have a baseline.

    Great idea to write down your questions for Brian, and I'm sure that your sister will have wisdom to guide you. Your questions should help Brian sort out what is likely jumbled and running around in his head.

    YAY! for school starting, and I pray that all goes well for all four of your darling kiddos this year.

    And Caitlin's photo ~ oh my goodness ~ she is absolutely stunning. That blouse is lovely on her, and her hair is so sweet, and that smile and those eyes! Just beautiful!!! Perfect!!!

    Sending lots of prayers and healing energy to you and your family ~

    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.

  2. #12

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    Really sorry to hear about all that has happened. I hope you are able to catch a break soon and that Brian is able to get on a better path, without any severe consequences for you and the kids!
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

  3. #13
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    Oh Lisa, I can't imagine how much stress you must be under. I get a knot in my stomach just imagining it all. I send you a very gentle hug and the picture I have in my head is of us here at CN standing shoulder to shoulder with you.
    Men can be bull headed especially about their health - they love being in denial. Your Dad is an adult and there's not a lot you can do about your Dad cutting trees. What did your Mom say? She must have been angry! Maybe someone can suggest that it's just as much fun hiring someone to do it and then ordering them around the whole time. The photo of Caitlin is gorgeous! (But I still love the one of her pouting - it's my personal favourite) :) Good luck with your note to Brian - hopefully it will open up a healing, honest discussion. Sending love and prayers for you and your whole family, Donna x
    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. #14
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    The 4.5 means they are watching for the aneurism to get large enough to deal with surgically. I've read a lot about it on one of my many aortic dissection sites. Have no idea why doctors wait until some magic number to intervene, but they must have their reasons. There are genetic reasons for why this happens. Marfans is a big one. Because of my dissection, we were told to have everyone directly related to me be tested. My sister and brother and oldest daughter were clear, but my son and youngest daughter (Tyler's mom) refuse to have the testing done. They are both very fatalistic. They don't seem to understand that if they test positive, their children need to be tested as well. An echo cardiogram and CT scan will let you know if you are at risk. Hope all goes well with your dad.
    grandmother of Tyler (22): Ohtahara Syndrome/SCN2a gene mutation, cortically visually impaired, quadriplegic, severely developmentally delayed, no speech, severe intractable seizures, frontal and temporal lobe atrophy, progressive scoliosis/kyphosis, chronic kidney stones & UTI's, gastroparesis, 100% tube fed, autonomic dysreflexia, but what a precious gift from God. "Lord, grant me the serenity to accept the things I cannot change."

  5. #15
    Distinguished Community Member andromeda31's Avatar
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    Thanks for the good thoughts everyone! Yes, my Mom is a little crabby about it...mostly complaining they were going on a trip and they canceled it since they didn't know if there was going to be surgery or not. I think that is her way to vent about it though. I think I would just be paranoid if it were me knowing there was a bulge in that major vessel. My Grandma (Dad's mom) died pretty young, a stroke and she was only like 64-65ish...had the stroke and was gone the week after. When I was reading about this, things said a lot of times, even if one doesn't have the valve defect, other things happen at a higher percentage which makes Grandma's death look like maybe this is something hereditary. The Marfans thing is significant for us since I guess at one time doctors thought Brian might have that. When we took C to a genetic counselor when she was a baby, the doctor was more interested in Brian since he had a 'high palate' and had had surgery as a teen for pectus carinatum which are signs of that. She said he should get a scan of his aorta since people with marfan's can have issues with that...he did and he passed it ok. I am glad there is a non-invasive way to check this out and hope they do scan the kids for my peace of mind. :) I am trying to only worry about one thing at a time though for now...tomorrow is lawyer appointment. Anyway, kids are home from school! Here is a first day picture:

    Lisa O.20140902_18b.jpg20140902_49b.jpg
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  6. #16
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    ((((((Lisa)))))) ~

    Your children are growing up so fast!! I'm comparing your signature photo with today's photo, and wow, how they've grown! And they are all just so doggone cute! Looks like it was a gorgeous morning in your neighborhood; everything looks so clean and fresh.

    So, how did the first day go? Were they all happy when they came home?

    Tackling one thing at a time is a great plan, and there will be time in the future for you to address testing you and your children for this heart issue. It's probably difficult for your dad to accept that he can't do the same physical activities he has always done. But I think an aneurism should be fairly compelling to slow down. It's unfortunate they cancelled their vacation, but why not plan another one and take it sometime during the next 6 months? It will be off season, so rates might be good. Maybe just take a few days to be by one of your many magnificent lakes, fishing, relaxing. It would probably be very good for both of them to do that. For many reasons.

    I'll be thinking of you and Brian tomorrow as you meet with the lawyer. I pray that it goes well, and that you have a great lawyer, who has compassion and understanding.

    Like Donna said, just picture all of your CN sister-friends standing beside you, hugging you, holding your hand, praying for you.

    Take some time to take care of yourself ~



    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.

  7. #17
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    It was a beautiful day here....it did get too hot though. I walked the dog yesterday around noon and when we were almost home and walking past a big tree, he sat in the shade and wouldn't move! I kept saying c'mon let's go and I saw my mom pull into my driveway and get out. She didn't hear me yelling to her though...finally he did move but I made her jump when I walked up to my front door behind her! Their first day went great, good reports from all (well Logan said he was a little naughty, but I kindof expect that from him-not listening a few times I guess). The only bad thing was....I sent the boys to the wrong bus stop! LOL! In that picture I had of Brian walking the boys to the corner...for probably 7 years now that has been their stop but after the boys told me their driver said they were in the wrong spot (she did still pick them up at least!), I looked at the postcard...oops! My bad! I only looked at the times and not the location of the stop! They have to walk in the opposite direction now to the other corner. It isn't a big deal and we actually like that better as there is less traffic around the new bus stop and more kids. I feel better when they are in a big group waiting. And actually they will now wait in front of the principal's house with her kids so hopefully there will be good behavior!

    We had our lawyer meeting today, it went well. Wrote out the check....I made Brian hand it over though...like symbolically having him give away the 'land savings'. Hopefully he will do a good job. I have never done anything in court ever before so this is all new to me. I sure hope it is the last time too!! He will have his first AA meeting tonight. Of course, I found out that I have a sunday school teacher meeting too, but there is only a 30 min overlap so I will have Brandon babysit. He works cheap, lol (I only pay him a dollar an hour).

    Nothing else too exciting here, I did call and make Caitlin's neurosurgeon appointment yesterday. We have actually not been seen by him for 2 years now! Unreal! I got a message in her mychart to make an appointment and when I called they were like 'wow you haven't been here in awhile!'. We used to be on first name basis with them at one point in time. I do have a few questions for the doctor, mostly wondering if we need to worry about her growing taller in regards to the length of the tube that goes from the shunt valve to the heart (VA-shunt)....but I am kindof looking forward to going and having them see how good she has been doing! Hard to believe we have gone the full 2 years! :)

    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!!

  8. #18
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    Hi Lisa! It was a gorgeous day here too - we have summer FINALLY! I'm glad the kids got off to school OK in spite of the bus stop mixup. And glad that Caitlin finally her neuro appt! I have never thought about growth and shunts, excellent question tho! Glad too that you got the lawyer over with. I hope tonight goes OK too. I'm sending love and a hug from sunny Ottawa. PS: had a nice visit with Nick this afternoon in his garden patio and I cut the grass at home. Still feels like summer. xo 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


  9. #19
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    ((((((Lisa)))))) ~

    With all that you've had going on, I think not noticing that the bus stop had changed location is completely understandable. The new bus stop sounds so much better, especially since the Principal lives across the street!

    Cute story about startling your mom. I hope you both had a good laugh.

    Two years without a visit to the neurosurgeon is awesome! And I agree with you and Donna that your question about growth is excellent. So your timing for this visit is likely perfect. And how wonderful for Caitlin to show off how well she is to her neurosurgeon. It's so nice to see a doctor to touch base, and not because there is some urgent issue.

    And I just want to give Logan his props for owning up to being "a little naughty." That was so honest.

    I'm glad that your meeting with the lawyer went well, and you were astute to have Brian hand over the check. I hope all worked out this evening, and that Brandon did a good job as the babysitter.

    Hugging you close and keep you all in my prayers ~

    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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