Rudy had a BIG week this week participating in his very first Vacation Bible School! I felt very nostalgic (i.e. weepy) watching Rudy enjoy himself, Olivia creatively prepare for each night’s special theme and the big boys lead from up front on the drama and worship teams all the while remembering my own fun experiences as a child (only back then we called it Backyard Bible School…I still have the bible I earned for memorizing bible verses. ha). We were all touched that Rudy had an opportunity to join the family in this special tradition and that everyone was so accommodating and concerned for Rudy’s well being. He’s ending the week exhausted but it is energy well spent, for sure!!
Today marks the end of VBS as well as the end of summer school! Rudy’s summer school session flew by and he brought home a treasure trove of art projects documenting the fun he had. We appreciate the summer staff at Franklin School, the county staff and Rudy’s summer nurse so much…we consider Rudy’s opportunity to go to school a great gift and these folks make it possible! He’s going to miss the Bear Club classroom team these next few weeks.
* Rolf and Max took Rudy to UCLA on Monday for his appt. with Dr. Woo. Based on April’s sleep study results, Dr. Woo is ready to sign off on Rudy’s trach wean! I’ve talked with Dr. Shapiro (ENT) by phone and she has Rudy on standby with her scheduler. If it is determined during Rudy’s heart cath on August 1st that no intervention or procedure is needed in the next 6-9 months then Dr. Shapiro will get him on her OR calendar for a bronchoscopy and decannulation. If surgery is in Rudy’s near future, then it would be best to keep the trach. Either way changes are ahead and that’s exciting.
* Rudy has been doing a great job adjusting to and tolerating his foot braces (AFO’s) and he’ll start using them in therapy in a couple of weeks.
* Our lice infestation at home is under control but I’m totally living in a constant state of paranoia! When Rolf came home from work yesterday and found me wearing a hair net, he asked if I was going to stop wearing them by the time we take our family Christmas picture in November! Um, yeah, NO! Ha Ha ‘Praying we remain lice-free!!!!
A few folks have inquired if frequent flyer miles can be donated to Rudy’s wish trip to Florida specifically. I asked a representative from our nearest MaW office in Ventura who is handling this appeal and she said that miles can be donated “in honor of Rudy” and attributed toward the total number of miles needed for our family’s trip but the actual miles are put into a “mile bank”, so to speak, since miles are donated from a variety of different carriers and we’ll need a block of miles from one specific carrier for our family to travel together. Does that make sense? So, if you have some extra miles that you know you won’t use and you aren’t interested in trading them in for a magazine subscription, would you consider donating them to Make-a-Wish in honor of Rudy? Our trip to “Give Kids The World” is being planned for early 2013 so there’s plenty of time…you can contact Shanna Taylor at firstname.lastname@example.org for more information. The initial appeal that went out through Noozhawk (a local internet news publication) yielded over 120,000 miles! We are so happy to lend our story to this appeal and excited to learn more about this great organization as we travel this special “wish journey” with them! Thanks all!
I’m eager to get back to a normal routine next week…hopefully with less laundry and more summer fun. Blessings to you, dear friends. May you be encouraged and uplifted!