New Updates! Please share what you can with Tammy Warner Cook and Miranda Cook! Lets at least take away the financial struggle that they face. Please share! Even gas or gift cards are helpful, Thanks everyone!
Update on Miranda: 7/21/19 Day #2 after surgery...
❤️❤️❤️❤️Update as of 11:28pm - in her words....I’m free - she has been given the all clear to go home!! ❤️❤️❤️❤️
She was pretty groggy at 7am this morning but since waking up around 10, she is feeling pretty good. Sitting in the chair and watching TV for the first time since surgery. Her voice is getting stronger and her strength. She has even asked to talk a walk and is doing that now.
Dr. Rasmussen ‘s team was in this morning around 6:30am. They took off her bandage. He said it’s reasonable she could go home today but also reasonable she could stay one more night. He’s going to “contact the boss” and let us know. If she does get discharged today, it will be late afternoon. They want her here the bulk of the day.
We are pleased with the incision and it’s smaller than we had thought, sometimes it’s an L shape.
We have tagged team staying with Miranda, so Miranda is never alone so we can all get our rest and stay strong for her. Thanks to her step-mom staying with her last night, I was able to get a good nights rest. I’m so thankful we were all able to be here with her.
We are so thankful for all of your continued prayers and support.
Update on Miranda...
We are blessed to have so many prayer warriors. You all are amazing! At our request you have prayed for housing, for travel, for miracles. While we were specific with our request, God knows better what we need. So our answer was so very different than we expected.
Some of you know we reached out to Cleveland Clinic at the same time as Stanford as we were very comfortable with both doctors. They are both leading clinics for moyamoya. Somehow Cleveland didn’t get all of the referral info and when we discovered it, the primary care sent it again but at that point things were in motion to Stanford. We don't know why or how but a Cleveland doctor on vacation, reviewed Miranda's tests and asked (with less than 24 hours notice), if we could have a video appointment - again while he was on vacation (we could hear kiddos playing in the background). Last Friday they said we would not be able to have a virtual appointment with him until July 25.
This doctor agrees with the doc in Stanford, which is very comforting. In fact at national conferences where there is a panel discussion on moyamoya both the Stanford and Cleveland docs sit on it. The Cleveland doc will do virtual appointments, the Stanford doc (at this point) will not. The surgeries could be a few days sooner in Cleveland. We are looking at July 19 and 26.
We have also been worried about the travel and how that will affect Miranda's healing. Cleveland is 3 1/2 hours away...she can heal at home and it also means if there are any issues in years to come, we can get there quickly and easily.
There are many, many more considerations but our miracle was an unexpected one - we are heading to Cleveland. Cleveland Clinic is currently ranked as the No. 2 hospital in the country by U.S. News & World Report (2018-2019).
You have to be an advocate for yourself and your family in healthcare and keep looking to find the best. We feel blessed to have found two very qualified doctors. If you keep asking questions, you’ll end up in the right place for yourself and your child. The right place for us is Cleveland Clinic.
Thank you! Keep praying - we need it!
As some of you know Miranda has been diagnosed with moyamoya. It is a rare brain disease and was discovered about 6 weeks ago when she had a stroke. She needs bi-lateral bypass surgery to bypass the closing arteries in her brain. Two long surgeries...scary stuff!
We have decided to travel to Stanford, CA for the surgeries. The surgeon there has done more than anyone else in the country and folks from other countries travel to him as well.
Surgeries are scheduled for July 23 and July 30. We don’t have exact travel dates yet as we are waiting to hear if they can use a test Sparrow did or if they have to re-do it. Likely we will be gone July 17/18 to August 7/8. It’s a long time to be away from home and work but Miranda should be able to make the start of her college career in August!
I am throwing this out to my tribe to see if you can help with accommodations. Ideally a 3-bedroom place (we could make a 2 bedroom work) near Stanford or Palo Alto. We are willing to pay but Airbnb and VRVO are all pricey and hotels are outrageous! Miranda will only be in the hospital two days for each surgery so we need a quiet place with no commotion for her to recover and therefore don’t want to stay with anyone....besides there are four of us.
Know of any vacant but furnished homes, condos, corporate apartments? Stanford/Palo Alto area approximately July 17-Aug 8.
Even if you don’t, we’d appreciate you keeping us in your prayers. It’s been a lot to take in since the beginning of June.