Sadly, our wonderful time away is coming to a close. We fly home to California tomorrow (Friday) and I’m happy to say we’re not leaving with any regrets…we knew we couldn’t see or do it all so we enjoyed what we did do and packed in quite a few new and different experiences in our 8 days in Florida! We’re tired but we’re still laughing (not a whole lot of exhausted bickering going on thankfully) and we’re all leaving with full and happy hearts. Reality will probably hit us hard on Monday morning when we return to the school/work/housework routine but I’m grateful we’ll have the weekend to get settled a bit before we have to run too fast. 🙂 So, here’s our last “sneak peek” post…thanks for all the sweet comments this past week. It has been so much fun sharing this experience with you all…thank you for sharing in our joy!
We’ll want to write a lengthy wrap-up post once we get home to document all the exciting and tender moments we’re experiencing on this trip but we also can’t wait to share some of our favorite pics so here’s a sneak peak – page 1:
Sadly, our wifi access is spotty here and I (Trish) haven’t been able to get online the past two days to share all the amazing details of our trip so far (it’s kinda hard to write posts on an IPhone)! So, for now, I just wanted to report that we made it safely to Give Kids The World and the attention paid to the kids here is beyond description…it’s simply beautiful…it brings me to tears and I can’t wait to share more! Thank you for your prayers for safety…
We made it safely to FL and from the get-go we’re amazed at all the special things people do for wish kids. The pilot insisted Rudy come in and look over the cockpit. Livy squeezed in cuz she’s cute too. As cute as I made myself for the picture I never got a turn in the seat.
Almost too much happening to take pictures or blog, but so overwhelmed by God’s goodness to Rudy and our family. On with the fun!
Rudy had his Make-a-Wish “send off” party yesterday evening. Wish granter Anne and her trainee Joseph came to the house with pizza, salad and cupcakes to present Rudy and our family with the official packet of information for our trip! It was a fun evening that helped build our anticipation and excitement! It’s sinking in that we’re actually going on this amazing adventure and we are all so grateful! Honestly, this is something we have joyfully (and tearfully-I can’t read about a Make-a-Wish trip without crying) watched other heart families do over the years since Rudy was born but I just never imagined we’d get to experience it…I’m nervous about all the traveling and getting from point A to point B but I’m also anticipating special experiences that will lighten the heart of our family. We have a VERY early 3am departure time out of Santa Barbara on Thursday morning which means in less than 48 hours, we’ll be en route to Florida!!!! Yikes/Yeay!!!!
It just so happens that one of my wishes is coming true too…We discovered in the planning of this trip that airlines do not allow oxygen tanks on board so we needed to arrange to travel with an oxygen concentrator (a machine that converts room air into oxygen). I’ve actually been working to acquire a portable oxygen concentrator for Rudy for over a year (since he started school) with no luck through our insurance and medical supply company. Because the purchase price of these units can easily run in the thousands of dollars, it has been beyond our reach. Inogen is a Nationwide Accredited Homecare provider that specializes in oxygen therapy and just happens to be headquartered here in Goleta. Make-a-Wish gave them a call and they agreed to lend us their “top of the line” unit for the trip!!! I still hope to purchase one at some point soon but the use of one for Rudy’s trip will completely transform the experience for all of us! We picked it up yesterday and Rudy adjusted to it perfectly (It’s a little different in that it doesn’t give Rudy a continuous flow of oxygen like a tank or our home concentrator but instead is triggered to give him oxygen when he takes a breath). Thank you Inogen!!!
Thank you all for your prayers and for sharing in our excitement! We are so humbled and grateful. Stay tuned for some fun pics..:)
We’re in a bit of a frenzy in these parts with the typical need to get a lot of things done before one heads out for a vacation. Between school, work, household and activities it does feel like all of us will have very full schedules up until departure next Thursday. We’re excited. Some of us are packing. Some of us were packed three weeks ago (guess who–also the same sick person who has the Valentines ready to go). Some of us have yet to pack (and won’t until after sundown Wednesday). Lots of ground to cover between now and then but that makes the prospect of settling into an airplane seat and breathing a sigh of relief seem all the more exciting.
In the meantime, there’s still the occasional impromptu moment where the kids are goofing around after dinner. I hear there’s pretty good entertainment in Orlando, but I’m not sure if they can top this:
There’s so much in store for us in the weeks ahead, but more important than all the cool attractions is the fact that we get to experience them as a family. Rudy is one of those kids that can’t actually articulate his own wish so when the Make-A-Wish granters interviewed us, we both felt clearly that his would involve the siblings he loves so deeply. There’s nothing like watching him light up even for the silly Chubby routine. Here’s looking forward to a week’s worth of golden moments!
I’m not even sure what direction to take this post as life feels layered and scattered at the moment but the obscure list of “to dos” on this week’s list will culminate into something pretty special next week so we’re all just trying to ride the ride that is our life right now. Sadly, Christmas is now all packed up and put away. The big kids headed back to school today (Monday) and the big boys are preparing for their semester finals next week! Rudy starts back to school tomorrow with a new schedule that has him departing on the bus at 7:40am! I spent the day today running errands, communicating with the kids’ schools and Rudy’s doctors in preparation for our trip to Florida next week (!) and getting the last of the big sibs in for the flu shot. Although my day was very productive, I’m ending the day feeling like the list of “things to do” is only getting longer as our departure for “Give Kids The World” gets closer. Make-A-Wish does such an amazing job taking care of all the logistics on a trip like this but the reality is that there are always details that have to wait until the last minute and we’re down to that exciting final countdown. As Olivia and Max headed out the door to go to school this morning, Olivia turned to me and said “I have a saying to keep me motivated for school this week Mom. It’s ‘One more day at school means one more day closer to Florida.'”. I like it…I think I’ll adopt a similar saying…:)
We’ve done a pretty good job of holding Rudy’s Wish Trip loosely and not getting too excited about it in case something happened to postpone or cancel it. It’s so close now, though, it’s hard not to be totally giddy so I’m praying hard for health, safety and good weather for Rudy’s comfort and our family’s maximum enjoyment. What an absolute gift this trip is and we are so grateful.
Rudy saw Dr. Harake a week and a half ago…his routine echo showed the valve leakage is unchanged (mild to moderate) and his half heart is getting larger (big sigh – not the direction we want it to go but what is to be expected). Dr. Harake is not one to talk about big picture “what ifs” or hypotheticals so discussions about longterm options are pretty rare but it has become increasingly important for me to know whether or not he feels Rudy would ever be considered for a heart transplant. It’s not that there would be comfort for us in knowing that it would be an option as the decision to pursue a heart transplant would be a difficult road to walk but it is something that occupies my mind quite a bit and if it’s clear Rudy would never be a heart transplant candidate then I could let that go. Currently our understanding is that Rudy would not be considered for a transplant because of his pulmonary hypertension but what if that were to change? If his lungs healed, are there other concerns that would keep him off the list? The answer is unclear but I did appreciate Dr. Harake’s willingness to engage in the conversation with me and affirm the value of the question. He said he’d discuss it with the team at UCLA the next time Rudy’s case comes up in their group meeting. We’ll touch base again in February.
Rudy had a short seizure on Friday…it was contained to his face and only lasted a couple of minutes so I didn’t feel the need to take him to the ER. He was pretty wiped out after it happened and fell fast asleep so I let him sleep but kept a close eye on him the rest of the day. I’m praying it was just a little blip and not an indication to increase his anti-seizure med yet again.
Speaking of Friday, one of the last big events of 2012 happened Friday afternoon when Wilson passed his written permit test at the DMV! Yea…he is one step closer to getting behind the wheel – consider yourself warned. Rudy is a big fan of the DMV…never short of a captive audience to woo and charm.
2013 started out right with a trip down to L.A. for Rolf, Max and Olivia to see Stanford play in the Rose Bowl (Wilson opted to hang with me and Rudy). Not only was it a great game but we also got to visit with Bobby and Marilyn Clinton. Bobby, a former professor at Fuller Seminary and author of several books on leadership development, has had a significant impact on Rolf’s life as a mentor and friend and we were blessed to have a chance to reconnect and give him and Marilyn a big hug! 🙂
After Stanford’s win Rolf predicted 2013 is going to be a great year! If only it were that easy but, okay, I’ll claim it!! Happy New Year dear friends…may 2013 be rich in joy, grace, healing, peace and fun opportunities for growth (emphasis on fun!). 🙂