More Than Conquerors - My Moyamoya Journey

Sorry for not posting! We have been busy but so very blessed. SUNDAY On Sunday, we attended Bethany Lutheran Church with Aletha & Denis. It's a small congregation but so friendly. They have been praying for me and it was nice to get to fellowship with them. We hope to be able to attend service again after my surgery before heading home. After church, we met up with Jill & Campbell MacInnes for lunch. Jill was my very first contact at Stanford and she even came to meet me for my very first procedure 7 years ago. She was an angel. She and her family have supported so many of us in the Moyamoya community. Her daughter Tara is a phenomenal young woman and Moyamoya advocate. Campbell is also spearheading a Moyamoya patient get together at Stanford every month. We should be able to attend next Monday! It was a real blessing to be able to spend time with Jill & Campbell. We had so much fun that we forgot to get a photo! MONDAY We met with Dr. Steinberg this morning a...

Whew! It's been a busy couple of days. Bobby and I got to sleep in on Friday and then enjoyed a late breakfast at Cafe Borrone. It was yummy! Mexican Mocha  Savory waffles with ham & cheese inside Then I had neuropsych testing from 12:30 - 3:30!  If you ever want to feel like a dunce, do a neuropsych workup... Three hours of memory, vocabulary, math, fine motor, and screenings for anxiety, depression etc.... It was exhausting. But I am curious to see how I performed compared to the last time I was assessed in 2016.  One of the upsides is that I have a solid baseline established and we will be able to tell if this new issue has had any effect on my cognitive function...I don't think it has....but it will be really interesting to find out for sure! After testing we did some errands to Target, Dollar Tree and Costco. Then back to our home base for a delicious dinner cooked by Denis! Then I finally got to shower (I had to wait 24 hour...

Today was a LONG day, but a good one. Since my angiogram wasn't scheduled until 8:30, we didn't have to get up so early. When we got to Stanford, we had a bit of trouble finding the registration desk for the Cath-Angio Lab and Bobby stopped someone to ask directions. I immediately recognized him and asked if his name was Mark... It was and I reintroduced myself. Mark was my nurse for my very first angio at Stanford and for my second one as well. He's one of their nurse educators and just super nice! After checking in, a nurse came out to take me back and we got another great surprise. Leah used to live in Kakaako and was a nurse for 3 years at Queens! She and Mark ended up with me in both pre-op and recovery.  It was so nice to have them both taking care of me and talking story. It was a bit of a wait, as things were running a bit behind schedule, but time passed pretty quickly with my two awesome nurses. The angio itself went very well and I kind of napped through most...

After a late night In-n-Out feast last night, Bobby & I got to bed about 12:30. The man who checked us in advised that we leave an hour early to account for traffic, so it was an early morning for us. I had an MRI with Diamox, ultrasound and pre-op anesthesia consult. I have to say that all of my experiences here at Stanford have always been so amazing. Today was no different. I checked in and didn't even get to finish the paperwork before being taken back to change and prep for the MRI. Everyone indrroduces themself and is super friendly. Before an MRI the tech always checks to see if you are claustrophobic... I told him no and admitted that I have been known to nap during MRIs! This was a longer one...about 60 minutes... And included diamox and contrast and of course a nap! If you have never been in an MRI, it is a tube just wide enough for you to slide into and the scan is super loud full of banging and clicking. You have to wear ear plugs to protect your hearing. But as a...

I'm sitting here on a plane, halfway to California, missing my kids. Dropping James off wasn't too bad... We had Jakey with us and between him & the business of drop off, it was easy to put on a cheerful face, do a quick hug & kiss with a promise to FaceTime once we landed. Dropping Jakey off was another story...he doesn't really understand that we'll be gone for 3 weeks, but in the quiet as we walked back to the car, I couldn't help but cry. I haven't ever been away from the boys for longer than a few days. I think that's the hardest thing about all of this...being away from them and the uncertainty of what my recovery will look like.  Will it be smooth and quick like last time? Will I struggle with speech problems? Will I recover the same level of functioning I have right now? All of that is unknown... Well, unknown to me.... I have to keep reminding myself that God knows all of it. And His plans are always better than our own. Please pray that bo...

As Bobby and I prepare to fly to Stanford tomorrow, we are so so grateful to God for placing amazing friends and family in our lives who have just surrounded us with love and support.  I won't likely have the opportunity to write personal notes for a bit, but I did want to take a moment to say thank you here on the blog.  Mahalo to everyone who has been and continues to pray for us.  The power of prayer is profound and your support and love have kept us hopeful and focused on God and His plan for us rather than on the uncertainly and fear of the unknown.  Your emails, texts and cards are so appreciated! To my amazing friends who are like sisters to me...Jo & Stacie...you guys have always been there for me, and this time around is no different.  From working with Lori to set up a meal train and other ways for people to show their support, to talking with me on the phone, to straight up launching a full IG stories support campaign on my behalf, I will ne...

Wow... So you ever notice how just when you think you think you have a handle on things and your faith is REALLY strong  something will happen to test that? Just last Thursday, Bobby & I had an awesome meeting with our pediatrician (message me for a referral, because she really is AMAZING). We have always loved her for being an unapologetic straight shooter. But one who genuinely comes from a place of respect and care for her patients and families and who will freely admit where she herself has struggled. Anyway... She gave us some great advice on how to handle talking about this new health hurdle with the boys (James in particular). We learned that although we were using more kid friendly words, we were probably over sharing about the situation in ways that aren't developmentally appropriate. She really pushed us to consider how our own anxiety (mostly my anxiety about the boys) and worry might fuel our kid's anxiety. Then she reminded me that anxiety is fear and fear...

Wow...The last month has been a whirlwind.  My surgery date has been set for October 1 and Bobby & I fly up to Palo Alto on September 24 to begin pre-op procedures on September 25.  We will be there through October 15...a full THREE WEEKS away from my babies! Mom & dad will be home with the boys for a week before mom flies to San Francisco to take care of Lily while Sara & Ryan are out of town.   At times I have felt like wallowing in the unfairness of it all or caught up worrying about the boys and how all of this will affect them.  But then I get a reminder about what good God we serve. We prayed for an affordable place to stay and received an offer from my Aunty's friend to stay in their home while they are out of town.  And BONUS...they offered us the use of their car as well! We prayed to find good airfare for our trip and found two tickets that we were able to use miles to pay for! We prayed for insurance to pre-approve the surg...