It’s the start of another week and the start of another week of STAR testing for the big kids. STAR testing is staggered between their three schools so after two weeks Wilson is done, Max has another week left and Olivia is just starting. 🙂 And if our calculation is right, we are down to 28 school days left before summer vacation!!! Happy times…
Speaking of the school year coming to a close, we had so much fun with the kids’ teachers last week…there was so much fun to be had and so many teachers and guests this year that we had to spread the celebrations over two evenings! ha ha As always it was just such a great opportunity to honor and thank the kids’ teachers for a great school year as well as celebrate community! The inclusion of Rudy’s teachers this year was particularly special as I’m still blown away by the fact that Rudy is in school!! He ultimately transitioned well to his long bus ride and to being in his wonderful classroom and we couldn’t be more pleased with his experience. When we stop and think about the number of people it takes to educate our son from his classroom teachers, to his therapists, to his traveling nurse and to the folks at the county office that coordinate it all, we are humbled and deeply grateful.
I’m so bummed because I meant to get a picture of everyone and I forgot!!!! 😦
In addition to all the fun of last week, we also had some medical stuff to take care of. We had our first visit with the urologist on Thursday and were relieved that no action is necessary on Rudy’s bit and pieces at this point. Dr. Cumes would like to keep an eye on him but doesn’t feel there is a need to intervene now so we can check that off the list as we continue to wait for the sleep study results and confirmation of the heart cath date in July.
Ironically, I was wondering just last week if maybe we could talk to Rudy’s neurologist about starting to wean Rudy off his seizure medication since he hadn’t had a seizure since his onset last May. He did, however, seizure on Friday night so this could be an indication that he’s growing out of his current dose. Once again it was Wilson who identified something was wrong…good job Wil! Thankfully the seizure was mild and only lasted for about 40 seconds so we didn’t take him to the ER but I’ll need to follow up with Dr. Corazza today and figure out what our next step should be.
So there are a few things to follow up on this week including a blood draw I’m seriously delayed in getting done….yikes!
Oh, by the way, I’m hosting my “Silver By Trish” Spring Event this Friday and Saturday just in time for Mother’s Day and upcoming graduations. If you are local, you’re welcome to drop by our home Friday May 4th from 5-7pm or Saturday May 5th from 2-6pm and take a peek at a variety of great gifts. It has been a few years since I’ve managed to get this spring event on the calendar so I’m looking forward to it. ‘Hope you can join us. 🙂
Okay, we’ll be in touch…thank you for your continued prayers…we’re so grateful for our “Rudy’s Beat Community”!!!
Rudy saw Dr. Harake (SB cardiologist) yesterday and he would like to get Rudy’s next heart cath on the calendar for sometime in July. Right now the available dates are possibly July 18th but it will most likely be scheduled for July 31st or August 1st. He hopes to go in and devote the whole time to coiling collateral veins so it could be another long session in the cath lab for all involved. For some reason, I had it in my head that we would pursue the next cath in the fall so I was a little surprised by the summer target date…it doesn’t really matter when we do it but this will be a helpful date to solidify as I work to chart out our summer schedule. We don’t have any big travel plans but between Wilson’s summer school classes at SB City College, Max’s desire to participate in a theater camp and Livy’s plan to live in the water, the summer is already starting to fill up! Ha Ha
We’ll also need to look closely at any plans we may have to wean Rudy off the trach if he passes the sleep study. It’s so much easier to anesthetize and vent Rudy during surgical procedures when he’s trached so it could be wise to hold off on weaning him with a procedure coming up. There are a ton of “what ifs” in that scenario and may even be a moot point if he doesn’t pass the sleep study so we won’t worry about it now but, I admit, the thought of delaying decannulation is disappointing. We’ll see…
Rudy sees the urologist tomorrow so we’ll have more to report then…in the meantime, have a happy day!
As suspected it took me a few days to recover from last Monday’s trip to Los Angeles and short night’s sleep…Rudy didn’t seem to skip a beat! Ha Ha It’s kind of sad when your son with half a heart has more energy than you do. 🙂 Needless to say, I’ve had a quieter week trying to catch up on life here at home. We typically don’t get the sleep study results for a few weeks so we need to wait a bit but I’m so relieved they were able to get a good stretch of data during the study that I can live with whatever the outcome may be. I did, however, buy this floatie swimsuit for Rudy at WalMart on our way home from the hospital in faith that he’ll be able to swim in our pool this summer!!
Speaking of the pool, yesterday was the official opening of the 2012 swim season here at the Geylings! The water is FREEZING but that didn’t stop the big kids from spending the afternoon engaged in swimming and pool-related activities!! Even Rudy took a spin on the stand-up paddle (SUP) board…
This next week is a full one with our monthly visit to the cardiologist and our consult with a urologist in town to discuss Rudy’s, shall we say, lopsided bits and pieces. His undescended testie may require surgical intervention but we’re praying the “ball will drop” as our friend Kim so eloquently put it and all will be well down under for the sweet boy. We’re looking forward to our annual tradition of hosting the kids’ teachers for dinner (we get to include Rudy’s teachers this year!!) and a dear friend’s wedding here in town. I love weeks that are loaded with things to celebrate!!! Thank you again, friends, for sharing in the celebrations and concerns of this journey with us. We’ll update as soon as we hear anything about the sleep study results. Blessings…
We are done and the best news is Rudy settled down enough for the techs to get good data!!!! He can’t tell me anything specific but he said Rudy cooperated well!! Thank you Jesus! Now we wait to hear the results from Dr Wii…oops, iPhone typo…I mean “Woo”. :). Okay, we’ll head for home pretty soon after a stop for breakfast.
Rudy has been awake since 5am this morning…these last 20 minutes are the hardest as we wait for the sleep lab to call for us!!! Hopefully his day of no naps will work in our favor tonight. We’ll emerge from the lab tomorrow morning at 5am…thanks for your prayers today!!
Grandma Jo headed back home to Kansas yesterday and I have today (Sunday) to catch up on some paperwork and pack for Rudy’s and my trip to L.A. bright and early tomorrow. Rudy has an appointment with pulmonology at UCLA tomorrow morning and then his sleep study at CHLA Monday night so we plan to make a day of it and hang out with some friends in between! 🙂 It will be a long day but my goal is to keep Rudy up and active ALL DAY so he’ll be too exhausted to fight the sleep study. I don’t know, though, we may be fighting the grumpies with Rudy all week even without the sleep study since he’ll be going through “grandparent withdrawal”! With Oma & Opa and Grandma’s visits happening back-to-back, Rudy has had the luxury of non-stop grandparent attention for the last few weeks! This won’t be an easy week for him going cold-turkey and all. 🙂 To add insult to injury, our poor little guy gets to add another specialist to his long list…Rudy’s pediatrician feels there may be a little problem (nothing serious but could require surgery) with his bits and pieces and wants us to take him to see a urologist. I’ll call to get that appointment on the books when we return from Los Angeles…for now, our focus is Rudy’s third attempt at the sleep study. Please pray he’ll cooperate tomorrow night and the findings will be clear. Our hope is that the sleep study results will show he is not dependent on his trach and therefore ready to wean off of it. It seems to us that this is the case but there was some question last time as to whether or not Rudy was expelling enough carbon dioxide so we hope these intricate measurements are able to be captured and we’re left with no questions. We’ll keep you posted and we thank you for your continued prayers for these tedious details. Continuing on in this journey…one day at a time.
Here we are at the start of another week and it is a particularly bright Monday as we celebrate Wilson’s 15th Birthday!!! Happy Birthday Big Boy!!
We didn’t have much to report this past week on the Rudy front as he continued to recuperate at home with a modified schedule. He has just one day left on his antibiotic and his foot wound, though severe, is definitely on the mend. Rudy has been keeping busy with Grandma Jo since her arrival on Tuesday and is amazing her with his energy level. 🙂 Spring finally sprung in Santa Barbara…just in time for Easter! After several weekends of wet, gloomy weather, the sun broke through this week and Rudy enjoyed a bunch of outdoor time on his trike. He was able to return to school on Wednesday but didn’t go back to therapy so this week will be his first full week back in his normal schedule. Unfortunately he’ll have to miss another couple of days next week due to his scheduled overnight sleep study down at CHLA on the 16th but that shouldn’t require any recuperation time once we get home. 🙂
Even though our schedule was a little quirky last week, we were able to enjoy some special holy week events that culminated in a wonderful Easter celebration yesterday. The highlight of the week was Olivia’s baptism at our church’s sunrise service! A cherished time, indeed. It’s hard to believe Easter is now behind us and summer break is less than two months away…the official countdown to summer is on! Ha Ha
We are grateful to be past this latest heart cath and settling back into that stretch of time between caths that feels a bit more “normal”. We were saddened on Friday to hear that our little friend Daisy is battling another cancerous tumor…her third in three years. So, as we wait in quiet limbo with Rudy, we ask that you add Daisy to your prayer list as she gears up for another surgery this week and treatment yet to be determined. Her joyful faith has encouraged us in our walk with Rudy and we pray for God’s continued healing and comfort for Daisy and her family.
Here’s a little recap of last week’s goings-on:
I actually have a few more pics I’d like to share but our internet connection is SO BAD I seriously can’t muster up any more patience to download any more pics!!!! We’ll be changing our service on Friday so be ready for some speedy posts real soon! Ha Ha Bless you all and thank you for your friendship and encouragement. Please don’t forget to pray for Daisy! 🙂