Well, Rolf’s doctor didn’t lie…his recovery from knee surgery on the 17th has been painful and is sloooooow going! The next several months will require large doses of patience as Rolf adjusts to being “differently abled” and we all adjust to dad being “out of commission”. Thankfully Wilson got his official drivers license last week and is now at our beck and call for important errands like getting Mom a diet coke from McDonalds or driving to dad’s office to retrieve important files, etc, etc. 😉
Ironically, as Rolf is forced to lay dormant for several weeks, Rudy is motivated more than ever to walk with the help of his walker and is quick to make his escape out of the cul-de-sac each time we saddle up for a walk in the neighborhood. It’s so inspiring to see his “can do” attitude in action and it’s getting me super excited for this year’s Heart Walk! Last year Rudy was able to take a handful of steps at the start of the event. With the support of his walker, he’ll have no problem walking a couple of blocks on his own this year and what a special victory that will be!!!
As has become our tradition, our family is looking forward to celebrating Rudy’s FIFTH birthday at the Heart Walk. “Team Rudy” has raised close to $30,000 for the American Heart Association in the three years we have participated in the SB Heart Walk and we hope to add to our tally again this year…money that will go to pediatric research specifically. Will you consider partnering with us? Click on the following link to read more about our motivation and to submit your donation on line…
Rolf and I sat behind the kids in church this morning and at one point I was overwhelmed by this fabulously normal image…the kids sitting together, messing around at times and having to be told to be quiet and focus (Rudy especially!). I admit I had a hard time focusing on the pulpit myself as I soaked in this moment. Rudy is becoming such a big boy…
I shared with you on June 1st that Rudy graduated from the Bear Club (his preschool class) on May 31st but he still had 4 weeks of summer school with teacher Dianne and friends to look forward to. Sadly, Friday was Rudy’s last day of summer school so we had to say our final goodbyes. When we think about where Rudy was at when he started school in October of 2011, it’s nothing short of a miracle to see how far he has come. Rudy’s teacher communicated with us earlier this spring that she felt Rudy had exhausted all they could offer him at the Bear Club and so we began a dialogue with the Goleta Unified School District about bringing him back to our district in the fall. You may recall that Rudy was sent to the Bear Club (a SB County special ed program) initially because our district wasn’t certified for non-ambulatory students at the preschool level. GUSD can, however, accommodate a child with Rudy’s needs at the primary level and so a switch to Goleta is the natural next step. The special ed classrooms scattered throughout our district will be seeing some changes next fall and so Rudy’s permanent placement won’t be determined this coming year…he’ll have a transitional year to give the new special ed classrooms and site changes a chance to establish themselves. Since Rudy will likely need two years of Kindergarten anyway, I’m okay with it and I’m hoping this transitional year will allow for a special request.
For many reasons, I’ve asked the district to allow Rudy the opportunity to go to our neighborhood school, La Patera, for his first year of Kindergarten. Olivia will be in 6th grade at La Patera this year and so she and Rudy have this one opportunity to overlap and have a shared school experience. Although La Patera doesn’t have a special ed program per se, it is a very familiar place for Rudy and he is well known there. I don’t expect La Patera would be a permanent placement for Rudy but I do think a year at La Patera would be GREAT for Rudy, for the typical kids that would be in his classroom and for his big sister who would be “over the moon” and so very proud to go to school with her little brother. As it stands now, the district has suggested (but not made any promises) a blended schedule where Rudy would be placed in a special ed classroom located at the district office campus and then possibly spend a couple of days each week at La Patera. I appreciate the district’s willingness to compromise but nothing is set in stone yet and decisions won’t be finalized until his annual IEP meeting in late September. Will you join me in praying that the details would work out for Rudy’s placement at La Patera? When you look at the big picture, no matter how you slice it, our family will need to be committed to supplementing Rudy’s education by creating an appropriate balance of mainstream experiences and special services to help him achieve his goals. Because the circumstances within our district this coming school year seem to put Rudy in a bit of educational limbo anyway, it just feels right to allow him and our family this opportunity to fully engage with the La Patera community of families and staff who we love so much. What a special chapter that would be for us all!!!
Rudy’s last week of summer school was also a full week for our family which included time with old friends Dave and Zane visiting from China…
And, the SBRM graduation dinners and celebration…always a special highlight for our family!
A not-so-fun summer detail is Rolf’s knee injury that occurred two weeks ago…the ER doc and ortho first diagnosed Rolf’s injury as a torn ACL but it was determined this past week through a MRI that it’s not the ACL…it’s potentially a torn tendon…not a good thing. The ortho ordered a second MRI on Friday and we’ll hopefully know for sure tomorrow. Surgery is tentatively scheduled for THIS Wednesday. Rolf has been a trooper but he’s in quite a bit of pain and is moving pretty slow. We sure would appreciate your prayers…for a successful repair, a full recovery (from what we’ve been told, it’s a 9-month recovery) and for GRACE as we adjust to having another “differently abled” member of the family…:)…once again, we’re needing to adjust!
Happy 4th of July everyone!!! We hope you had a fun day filled with memory making moments. Ours was rich as we celebrated at the annual Santa Barbara Rescue Mission 4th of July BBQ with good friends and our SBRM family. It was a day filled with great conversations and lots of laughs. It was particularly good to spend the day together as a family as it feels like everyone in our household has been going in different directions since Rolf and the big kids’ return from Boston.
Poor Rolfi suffered a bit of a hiccup Monday evening when he popped his knee while messing around in the pool…the ER doc thinks he tore his ACL likely requiring surgery but we’ll find out for sure tomorrow when he gets in to see the ortho. Yikes!…We’re praying that Rolf’s recovery will be a matter of weeks and not months.
Rudy had an appt with his cardiologist last week and his heart function remains the same. We talked a bit about our consultation with the heart transplant team but Dr. Harake would like to follow up with them himself. His main priority in having us start the transplant process with UCLA is for them to determine where Rudy falls in eligibility in regards to his other major organs and systems. Dr. Harake has a clear understanding of where we’re at with the heart but wants the comprehensive tests to assess the bigger bio picture. I’m assuming our next visit to the heart clinic at UCLA will be in August but we haven’t touched base with the pre-transplant coordinator since our consult in May so that’s not confirmed yet…we’ll see. I’m not feeling any major push to make it happen and, therefore, content to let the process simply unfold at this point. There was an article published in our local paper a couple of weeks ago that talked about a study they are conducting at the Mayo Clinic specifically for HLHS patients who have not had the Glenn surgery yet. It’s a treatment involving stem cells taken from the child’s umbilical cord at birth. Although Rudy is past the normal window for a pre-Glenn candidate, the article did get me thinking about the uniqueness of Rudy’s situation and whether or not donated stem cells could stimulate the same kind of growth and strength in the heart that they are seeing in some of their study participants. Dr. Harake agreed to look at the article and I’m hoping it’ll be worth it to connect with the Dr. heading up the Mayo Clinic study…it’s intriguing to me.
So, for now, we’ll concentrate on having some more summer fun and gear up for another round of doctor appts in August. There isn’t any plan to schedule a heart catheterization at this point and that’s fine with us. It just feels like until Rudy’s status changes, we would be wise to simply keep doing what we’ve been doing and not push too hard in any direction. We’ve been in “limbo” for so long now that it feels less like “waiting until we can DO something” and more like simply allowing Rudy the space to be who God intended him to be. 🙂 Praying for discernment and peace…always!