A glimpse of a child's battle with a rare degenerative disease and the legacy he left behind
Fundraisers for Ry
Monday, June 25, 2012
Keeping Busy & having FuN!!
Ryder is having some pretty good days. He has only been in mild pain occasionally throughout the day, but nothing to bad and it doesn’t last long. He is up to 25ml/hr via GJ tube feeds and down to 20 TPN. The goal is 45ml/hr through GJ tube and no TPN. The fever has been gone for a few days now and Ryder is starting to have more and more tantrums when we tell him no—just like any normal 2 year old would;) He would just lay in bed feeling blah before, so we welcome the tantrums and the energy he is regaining!
John McDonald (D-Back shortstop) came to visit Ryder in the hospital. That really made his day! Ryder had the biggest smile on his face and really enjoyed hitting the balls that John pitched to him! He was a great guy and we really appreciate him taking the time to visit Ryder! We hear that there where many different requests to the D-Back’s team to do something special for Ryder, so thank you for making that happen for him We also have a friend working on getting him on the D-Back’s field and to a game once we are out of the hospital—how exciting!!!
More exciting news: The Copperstate Fourwheelers are hosting a benefit run (off-roading vehicles) for Ryder on Sept. 29th—so keep that day open—it will be tons of fun!!! I have gotten many questions about this event. Chad (the organizer) is still in the process of planning, but just wants everyone to keep that day open. If anyone would like to help him (w/silent auction items, water, advertisment:radio/news, entertainment for kids/those w/out off road vehicles like bouncehouses/petting zoo--any other ideas at all)-- please contact him via facebook at Copperstate Fourwheelers or get a hold of me and I’ll give you his number. We will keep you informed on this event!
We are so grateful for Ryder’s many loving supporters! We are blessed to have so many loving, caring people helping us out! Thanks to the Randall’s & my sister- we have a nice clean house! Thanks to the Clayton & York families for keeping Tyler and Noah entertained! Thanks to Erica and Lance Wills we have a wheelchair lift!
We have received so many visitors, toys/snacks/movies/books/messages/calls to keep us entertained at the hospital (we are going on 3+ weeks now for this stay--ugh)!. We are truly amazed and grateful for your thoughtfulness and kindness!
xoxo,
Denise
Staying busy:
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Cute pictures! I'm glad he is having some better days. I hope he just keeps getting better and that he can be home soon. Isn't it funny how we actually look forward to tantrums and "regular" 2 year old behavior.
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