June 3, 2004

Jenny had her first Dr appt away from home today. The idea was to go to the ENT who saw her at the hospital and get the trache removed. For a while, Jenny has been doing everything that seems to be recomended prior to decannualtion (trache removal). As for our experinece, the Dr said that she was not going to remove the trache, despite the fact that Jenny is doing what she needs to do, and the Dr did not even look at Jenny before she said this. In her mind, a person with a stroke like Jenny’s has a time limit to fullfill. Trache removal is a huge step for Jenny. It is a major moral boost. It is something that assures she is getting better. It is one less open wound or source of infection. The trache is a major source that requires frequent care. It gets bumped frequently, which is painful, and its placement hinds head movement to her right side without causing discomfort. Any pain or discomfort is what throws Jenny into a cycle of painful spasms.

I want to feel that this Dr has some credibility and that in some way Jenny is being spared from possible harm, but the whole experience with setting dates of 6-12 months and stating Jenny is not ready prior to examination tells me she is not the type of person Jenny needs. Jenny more than agrees. If anything, Jenny is so set on working harder than ever before to prove everyone wrong who said she could not do- well, anthing. She is going to everything she use to do and there is no stopping her now. I’m not sure if I liked the old Jenny who fought rehab therapy and wanted to lay in bed, or the new one who demands constant therapy. I think the new one is pretty good.

The trip to Jenny’s appt did demonstrate her ability to go places. Jenny should be returning to church soon, which has been something she really wanted. She is reluctant to go into public, such as places like the malls and stores.

The whole med concern with Jenny’s involantary muscle movements that cause pain seem to be coming under control. Her doctor changed the meds to address neurological pain again. Jenny initially stated pain was not an issue, but I don’t think she realized the neurological pain was causing most of her discomfort.


  1. HURRAY!! So glad you’re able to get out into the world again Jenny! It will be soooooooooooooo great to see you at church again! So sorry that the doctor was not willing to even consider removing the trach…I’m sure that would be a great step forward. Sounds like this episode did cause Jenny to decide to prove all the doctors wrong and do therapy non-stop!! Best wishes and good luck trying to keep up with her! I truly feel she WILL be able to do everything she once did; she is incredible!! I am off to Utah tomorrow for ten days to visit my Rachel & Regan and their families 🙂 so of course I’ll keep up through e-mail with your progress. I love you all, always! Tami

  2. Jenny…I am so excited to hear that you will be returning to church soon. I think that you will enjoy it. I am sure that you will be making such strides in your therapy and the tubes will come out soon enough. I hope for you sooner rather than later. I keep hoping to hear when tht happens. I think you will continue to make strides. You are so strong.
    Mark…keep up the good work. You are truly a blessing and so are the childeren (and Jenny too of course)!!!!!!!!!!!!!
    God Bless You All!!!!!!!!
    In love and faith

  3. Jenny!
    We just wanted to let you know how much we love you and how proud we are of you! You are doing so well and we can’t wait to see you. You are our Super Hero!

    Cousin Mickey and John

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