We are enjoying celebrating Christmas with each other and Oma visiting from Alabama. The past couple of weeks have been a string of fun-fueled, high octane days and now the hustle and bustle has subsided…we are blessed. We trust your holiday and Christmas celebrations were fun too and filled with things that bring you great joy. The past several days have been filled with things that remind me how very far we have come in our journey together and how much we have for which to be thankful…
…and helping his brothers sing “Run, Run Rudolph”…
We welcome a little down time the next couple of days before the start of the new year…time to rest, regroup, reflect and anticipate the blessings of 2016. Merry Christmas dear ones! We are grateful you are a part of our family’s story.
Rudy had two check-ins down at UCLA this past week. The first was at the dental clinic. I think we’ve mentioned here before that good dental hygiene and care is a surprisingly critical issue for heart transplant candidates. In order to keep on top of this he gets to travel all the way to LA for what usually amounts to a quick checkup–but this one had a little more excitement than usual. Some roughhousing recently led to Rudy losing a front tooth and left the one next to it pretty loose. Upon further inspection in the dentist’s chair (you see where this is going, right?) the second was pulled as well making Rudy the embodiment of a fine Christmas cliche.
Thursday, we had his six-month appointment with the transplant team. While Rudy isn’t listed as a transplant candidate, this serves as a means for the team to stay current on his condition. Trips like this to LA are significant not just because of the appointment itself, but all that comes with just being in that place again–the memories evoked by stepping over a familiar crack in the sidewalk, recalling a conversation had at a particular lunch table, the emotions that come from walking by a bench that you once tried to gather yourself on, and the likelihood of running into some of the incredible people that were such skillful and compassionate guides during Rudy’s fight there. Add to this the fact that Rudy was consistently emphatic about walking instead of riding in the wheelchair. Not sure how much he knew about where he was but it gave me a lump in my throat to see him stomp down hallways with his mix of determination and mischief.
He had an extensive echo done and then we met with Dr. Alejos. Nothing really significant to report in either direction there. Everyone is extremely impressed by Rudy’s weight gain and developmental growth–Dr. Alejos always comments on how much he likes to hear the racket of an impatient kid waiting in the exam room and welcomed Rudy’s rambunctious energy. He observed that no change is a good thing and didn’t see anything on the echo that would make him want to do a cath. Even though he wouldn’t consider Rudy a candidate for any surgical intervention at this point, he also doesn’t see any imminent need. We asked him if it surprised him that Rudy would be doing as well as he is and he answered, “If I was just looking at files and reports, I would envision a very different kid–but I know how Rudy fought his way through challenge after challenge here in the ICU. There’s some things we just can’t define in medical terms.”
After wrapping up at the clinic, we decided to pop up to the 5th floor. We weren’t going to bug people by ringing the bell to enter the ICU and only intended to take a lap around the hallways and let Rudy see the pictures of penguins and puffins we used to look at–until Dr. Andy popped out just as we were walking by and waved us in to say hi to the crew on duty. So great to see Dr. Andy M, Dr. Andy S, Dr. Myke, Dr. Julianne, Jennifer, Roger and several of the nurses still there. Rudy didn’t disappoint and strutted up and down the hallway, saying hi to everyone, wanting to play with their computers and machines and trying to run away from us. Hard to put into words what the feelings were to see our seven year old strutting past his old room–in the unit where he was the first patient–and rooms where other kids were now waging their own fights.
There were several times during the seven months he was in the CTICU when I wondered if Rudy would ever make it out of the unit. I don’t think I ever imagined I’d see him walking through it with his trademark giggle and chatter. A sacred moment caught us by surprise. So grateful for this place and the exceptional people there–and glad they could get a glimpse of the rich life the little baby boy they watched over seven years ago now has.
After our quick visit there, Dr. Rick left a meeting to greet us in the lobby and Dr. Dan (who had already read the echo report) and Dr. Greg came and met us on the sidewalk outside the lab. In both instances, they were visibly surprised when Rudy walked up to them and we enjoyed visiting in between taking turns running after him. All of them were so affirming of his progress and we were so grateful for the amazing people who have come along us in this journey and focus so much incredible expertise on Rudy. (In fact, we were so amazed, we forgot to take any pictures…boo!)
We have, however, captured some Christmas fun so far this month…
Trish, Max, Olivia and Rudy braved the frigid temps (of about 55 degrees) and helped officially usher in the holiday season in the annual Santa Barbara Holiday Parade.
Saturday included our family’s favorite Goleta tradition…Christmas at Stow House!!! Santa recognized Rudy and greeted him with outstretched arms & great enthusiasm as Rudy walked up to the man in red all on his own.
Anticipation for Christmas is growing! We have the SBRM staff celebration to look forward to this week and the arrival of both Oma and Wilson on Thursday. With the bulk of Rudy’s key doctor appointments behind us, we are ready for some more serious Christmas fun.