Daisylover...thinking of Travis...

Discussion in 'The Watercooler' started by KTMom91, May 1, 2008.

  1. KTMom91

    KTMom91 Well-Known Member

    His appointment is tomorrow afternoon, right? Crossing fingers, saying prayers, and rattling beads that everything will be fine.
  2. Hound dog

    Hound dog Nana's are Beautiful

    Thank you for thinking of us.

    Yes, his appointment is tomorrow afternoon. I'm finding it difficult to sleep tonight. My stomach is in knots.

    easy child and I were discussing him this afternoon while on a shopping trip. We both feel he's had another stroke. He's having memory issues, slurred speech, and more facial droop. So I'll be making an appointment with his neurologist as well. By the time getting this stuff in motion is done I probably won't have any of my loan refund left for the necessary things I'd had planned for it. But I don't feel like we can hold off.

    It's nice to have someone as familiar with Travis as I am who is knowledgable in medicine to discuss things with. But with her confirming my own worries.....Well, I'm not sure how that makes me feel. There is a part of me that wants to believe I'm just being a worry wart parent. If you know what I mean.

    sister in law is taking Travis paint balling along with his friends on sunday. sister in law is great about trying hard to include Travis in "guy stuff" whenever he can. But was worried that maybe he shouldn't given the current situation. (they're going out of town) But we told him this sort of thing is a major event for a boy who rarely gets to socialize, and unless the doctor says something that would indicate he shouldn't go, we feel he needs this outing.

    easy child is upset she has to work and can't be at the appointment. husband has no choice but to work. This is the first time I'll be taking Travis to a doctor appointment alone. A bit daunting for me since I've had a overwhelming feeling of dread hanging over me of late.

    Keep those prayers coming. This kid needs all the help he can get.

  3. Wiped Out

    Wiped Out Well-Known Member Staff Member

    Will be saying double prayers for Travis today!
  4. nvts

    nvts Active Member

    I'll be riding shotgun on your shoulder! I've had him (as well as you) on my mind, but I thought the appointment. was yesterday! I was hoping for some good news.

    Let us know how things go and if you need anything!

    Good luck (and I hope he has a GREAT time at paint ball)!

    (could the face droop be Bells Palsy? Sometimes that just "shows up" out of the blue).

    Thinking and praying for all of you!

  5. flutterbee

    flutterbee Guest

    Adding my prayers......

    Keep us posted.

  6. SearchingForRainbows

    SearchingForRainbows Active Member


    I'm thinking of you, Travis, and the rest of your family too... I'm keeping all of you in my thoughts and prayers...

    Please update when you can. WFEN
  7. everywoman

    everywoman Active Member

    Thinking and praying for you and Travis today.
  8. trinityroyal

    trinityroyal Well-Known Member

    Adding my thoughts and prayers for you and Travis.
  9. Marcie Mac

    Marcie Mac Just Plain Ole Tired

    Keeping finger crossed for Travis..

    Lisa, is there no way you can get him on SSI or Disability - with as many problems as this poor boy has, you would think it would be a slam dunk for him to qualify.

    Will be thinking of him today..
  10. Hound dog

    Hound dog Nana's are Beautiful

    nvts Travis has had facial droop since his last stroke at 18 which had us determined to find out the "why" of it that led to discovering the polycythemia. Neuro was certain it was stroke related. No MRI can really confirm it due to the stroke and brain damage he suffered at birth. This droop is now more profound, and easy child has noticed him dragging his left leg a bit which is new, plus we're seeing it in his motor skills. Neuro's theory for a lifetime of neuro regression after long periods of progression or "normalcy" was that unknown to us Travis has had a series of strokes throughout his childhood. The brain damage already present made it hard to spot.

    Marcie I've been putting off getting him on disability due to Travis' pride. I raised the boy to be proud, regardless of his dxes and disabilities. I think I did too well a job. But in the past couple of weeks he's been asking about it. So I think he's having such a hard time right now he is open to the idea. This also tells me something of his condition.

    The guilt is getting to me this morning. I know I can't change the past. Maybe it's that I'm going to have to explain to the oncologist why Travis hasn't been in treatment for the past 3 yrs. Not that I didn't try, but now I don't feel like I pushed him hard enough, or made it clear enough as to the seriousness of the polycythemia. But then I did the same with the neuro he also hasn't seen in 3 yrs, and couldn't get him to go even though he's has alot of trouble with the seizures. I think Travis had reached the point that he was sick of docs, sick of testing, sick of treatment. And when he decides to be stubborn it's impossible to get him to budge.

    But I'm the one who is always "on top of things" with Travis because there has never been a period in his life where it wasn't necessary. I dropped that ball. I'm trained as an LPN. It's not like I don't know what to look for. I know this child better than anyone. I always pick up on even the littlest changes even when others don't. And yet since last winter I didn't see what was going on right in front of me. The long severe illnesses with a boy who doesn't get sick, the utter exhaustion with a boy who has always had too much energy and trouble sleeping, the severe headaches, the weight loss...... I could go on. And while I noticed it, it didn't seem to register. Only when I saw the blood pooling in his hands and feet did the red flags go up and all the symptoms started screaming at me.

    I know I'm also dealing with school and Nichole and mother in law. I know easy child a trained RN also missed it. I know that in my head. I do, really. But in my heart I dropped the ball in the worst way. I know with the nature of this disease, and with Travis' symptoms that it is very possible it has progressed into leukemia. I feel like I let him down when he needed me most to be paying attention.

    And for me, that is unforgivable.

    Thank you for the good thoughts, prayers, and support. We so need it. I'll post as soon as we get back from the doctor. I know blood tests will be done, but I don't know how long we'll have to wait for the results. If she stats the order we could know right away. I hope she stats it. If I have to wait, it's going to eat at me until they're in.

  11. busywend

    busywend Well-Known Member Staff Member

    Well, I do not know about you, but I would have eased up on the diligence of watching for these changes since he can tell you things have changed. He is an adult now. He knows what is going on, right? It is not solely up to you to notice his changes.

    As far the the SSI - I am willing to bet if you explained the costs of his care to him he would not want you to suffer the effect of not having SSI. Get the application, today.
  12. witzend

    witzend Well-Known Member

    I hope it goes well, Lisa.

    As someone who is on disability, I hope that you will revisit the issue of Travis' pride. We are what we are. What we shouldn't be is an unnecessary burden to our families. Not to say that we aren't sometimes or even often a burden. But, there are coping systems available to us out there that can open doors of opportunity for us, and help out caregivers financially and with aids.

    I find new things that I can't do every few weeks or months now. Not to say that I'm ok with it. But, I know these things are going to happen. It's good to know that this is who I am, and that it's not something that needs to be hidden or denied. And if there's assistance out there for me, all the better.
  13. TerryJ2

    TerryJ2 Well-Known Member

    I feel like I let him down when he needed me most to be paying attention.

    And for me, that is unforgivable.

    Lisa, Lisa, Lisa, don't be so hard on yourself! Living with-someone on a daily basis is not the same as having a patient walk into your medical office and boom! instant diagnosis. Example: look at the neighbors' kids that you haven't seen for a month, and think, whoah, when did he grow? But you don't notice it as much with-your own, right? That is perfectly normal.
    You love him. That's what counts.