Nov 5, 2004

Jenny is now finally tube free! Initially, they were going to sedate Jenny and put a scope down her throat to see what type of feeding tube was placed there. Prior to our first attempt on Monday, we had prayed for a successful removal without complications and felt good about it. Since they could not insert an IV, her initial tube removal date was postponed. It was confusing to have felt good about there not being any complications, but then have complications that prevented the removal. However, it appears that things worked out better off. Since they did not want to stick her 100 times looking for an IV, they contacted the hospital who inserted the tube and asked what type it was, so all they had to do at that point was skillfully pull it out in a proceedure that took a couple minutes. It makes a person wonder why they did not make the call to begin with if it could have been this nonevasive to begin with. I now realize that our prayer to avoid complications was most likely answered in the form of eliminating unnecessary proceedures that would have been performed the first time we went in.

Jenny is doing better each day still- just tiny bits at a time though. She is back to her old love of journaling again. She just does it on the computer now. Her entries are short, blunt, and filled with strong emotions. It appears to be really therapeutic for her. Jenny was able to vote this week and do a bunch more things that she has not done in a while. Outpatient therapy is wonderful for her. Her speach therapist is too much like Jenny (even the same anti-bean eating beliefs). Jenny is rapidly making improvments with her tongue, mouth, and voice through newer and inventive therapies. I really can see her speeking some day, even though she has not made any recognizable words or sounds yet.

Jenny is in her new room with her roll-in shower. It is wonderful and there is a bigger bed so I can take over more of the caregiving at night. I was initially worried that taking care of her from 7 am to 11 pm, plus get up every couple hours at night to reposition her would be too much, but as I have taken a few more nights from the night nursing aide, it does not seem to be all that taxing. I still have a nurse who relieves me 1-2 days per week so I can do a few errands or work things. I will most likely still have a nurse come in a couple night just to make sure I sleep enough. My biggest worry is what would happen if I become ill for even a short period. Jenny is still reluctant to have others do much for her besides myself (and the nurse on occassion).


  1. We look every day to read your news. We are SO HAPPY to read of each step forward. What a relief it must be for you, Jenny, to be able to use the computer to express yourself. And the experience of having the tube removed, not when or how you’d planned, but in a better situation is so typical of our lives, isn’t it? If we could just see things from the way we’ll view them in the end…..
    We LOVED your photos. Thanks so much for posting them. It was so fun to see a bit of your life – especially the kids enjoying all the
    ‘toys’ they have that most kids never get to see or be involved with.
    We love you guys. Keep tough! Uncle Dee and Aunt Lois Ann

  2. HOW EXCITING!!!!!!!!!!!!!
    You have so much great news. I think tube free is GREAT!
    I am happy that your room is done. I think that will help everyone alot.
    Mark, you sound liek you are doing well. I am so glas to hear it. I hink you are the best! My husband went on the web site the other day and he is in awe of your never ending suppot and your lov efor your family is unbeleivable.
    I think you guys are doing good.
    God Bless
    In Love and Faith

  3. Jenny, how wonderful to hear of your great progress! Email and scrapbooking are two essentials in my life too. We certainly miss you and your wonderful insights and ideas on the primusic list. Please know that there are lots of people who don’t know you at all that have been blessed by you. It is great to hear that things are going so well.
    (primusic list owner)

  4. Wow!!!! What great news that you can move more freely without something in the way. I can see so much more progress happening. Journal writing is the cure for our feelings and now that Jenny can do that she must feel great!! Mark I think that worrying about being sick and not being able to take care of things is a parents worst nightmare. Heavenly Father takes care of us so that we can take care of others. I just wanted to remind you that we have all pretty much felt the same feelings about our families also. You do a great job taking care of everything. I see and feel everything that you write about. I know that you are doing great and are working great things for your family and yourself. I see the strength and desires that you have. I know that you have had a family unity that has helped you to be able to do what needs to be done. Lots of Love to your Family. Have a wonderful Day. Rita

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