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October 19, 2000

More Progress with a Small Setback

From: "Smith, Dianne" < dianne.smith@mpls.frb.org >
Date: Thu, 19 Oct 2000 15:40:18 -0500

 Jenny's neurological function is improving daily. We couldn't be happier.
 She can now do so many things for herself: getting dressed, moving from
 one room to another, initiating conversation, getting into and out of a
 car, going to the bathroom on her own, putting her dishes in the
 dishwasher, answering the phone, etc. It is almost amazing! She has
 even spent a few hours away from Steve and I, just cutting coupons out of
 the newspaper, in the porch - by herself. (In the past 16 months, one of
 us has been right by her side at every moment.) It has been an adjustment
 for us to just stand back and watch her become somewhat independent again.
  
 Jenny's balance, coordination, vision and muscle strength are still huge
 concerns for us. We believe that progress will be made in these areas
 with time, as well. These 4 issues are somewhat intertwined. As Jenny
 gets stronger; we might see improvements in her balance and coordination,
 for instance. Jenny is still taking steroids which make her very weak,
 but we are tapering off and plan to be finished with them by year's end.
 At that point, we will try physical/occupational therapy again. 
 
 The CMV was inactive in both eyes on October 5, but the Retinologist was
 still unable to her middle eye in the right eye, it is too swollen. He is
 quite concerned because she is still at 2/200 (she sees at 2 feet what she
 should see at 200 feet) in that eye. The left eye is still 20/80. We
 were disappointed with the results of that visit, we didn't see the
 improvements that we had hoped to see. But Dr. Davies says there can
 still be healing for another 1 - 2 months.
 
 Unfortunately, we just found out that Jenny's CMV has flared up again. We
 are still administering gancyclovir daily, so we didn't expect this. FUMC
 is culturing some of her blood to determine if Jenny's immune system is
 resistant to the gancyclovir; if it is we have to switch to foscarnet. We
 have used it on Jenny for CMV in the past and it did a good job. It is
 hard on her ionized calcium, magnesium and phosphorus; so Jenny may have
 to stay in the hospital for a few days while the doses are tweaked. We
 will do whatever it takes...CMV is deadly.
 
 Wow, Jenny is making platelets by the thousands! She hasn't had a
 platelet transfusion since October 5 and she is still holding at 57,000.
 First the new bone marrow makes red cells and white cells; finally
 platelets are the last to come in. We are in shock ... it took so long,
 even Dr. Davies is beside herself with joy. Jenny said, "I made Dr.
 Davies dance today, didn't I Mom?" We are all dancing! 
 
 Thank you to all of the wonderful staff at American Red Cross for their
 help with our directed donors and the many apheresis units we needed over
 this past 16 months! We have heard that Jenny's Updates are posted on the
 wall in the donation center and everyone there has been following her
 progress through the good times and the bad times. You are all wonderful
 people. 
 
 Also, thank you to our directed donors: our nephew, Jeff Withers; Steve's
 brother, Dan Smith; Steve's co-worker, Gary Wilder; Steve's co-worker,
 Joeleen Famoso and Dianne's former co-worker, Kevin Bellin. You all
 helped us through a very difficult time. You all made huge sacrifices to
 donate on a regular basis, whenever we needed it; sometimes twice in the
 same week. We couldn't have done this without any one of you. Thank you
 from the bottom of our hearts! 
 
 Jenny spoke to her donor, Todd Bobeda, for the first time last Saturday.
 When she hung up, she was ecstatic, she said, "Having Todd for my donor is
 like getting a new favorite cousin. He is so nice." We hope to meet Todd
 and Ryann in Florida in February. Jenny should be stronger by then. We
 have made some additions to the introduction to Jenny's webpage, to
 include information about Todd, at www.mannosidosis.org/intro.htm  . 
 
 I will say goodbye on that happy note. Please continue to pray for
 Jenny's complete recovery.
 
 Love,
 Steve, Dianne, Jenny and Jason

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