Ryan’s urine visually appears clear. It has for around 24 hours now.
I decided to keep Ryan in bed for the day yesterday. This is the first time since July (I believe) that we haven’t had him up. Anyhow, a day of no activity wouldn’t hurt. Everyone needs a day off.
We are still trying to get Ryan in for the 3T-MRI. We thought this was going to happen at Loudoun (last week), but they aren’t able to achieve the precision needed. It was two weeks of on-again, off-again. Ugh! To their credit, they really tried and we appreciate their commitment.
The plan now is to take Ryan to Johns Hopkins in Baltimore. We just need to get through the mountain of paperwork, pre-exams, and approvals. This has been one of the most frustrating experiences we have gone through is some time.
A question for all vegans who might be a reader… where can I get Nutritional Yeast? I believe the product usually comes in the form of flakes. I want to add it to Ryan’s diet since it has insane amounts of vitamin B-complex.
I’ve been getting a ton of requests to post a picture of me in my french braid. I do know Sue took one, but I’ll need to find it. I actually have a funnier picture of me in a wig and gown. The kids suckered me in to participating in a “Mr. Iberostar” contest when we were in the Dominican Republic on vacation a few years back. It was humiliating! But, they loved it!
You can get nutritional yeast at any grocery store that has an expanded organic section. Here in Morgantown Kroger carries it. You will find it under “Organic Baking Needs” in a yellow bottle that looks similar to parmesan cheese, usually on a bottom shelf. If you would like to share a “treat” with Ryan try sprinkling the yeast flakes on some plain, unsalted unbuttered popcorn for yourself. It is healthy and tastes great!
I knew that God would take care of Ryan and see that everything clears up! God Bless
Sounds like your proactive treatment cleared up any infection before it could get started. Good job!
Hi Ken 😀
You might want to try Amazon; I looked up Nutritional Yeast on Amazon and it was there. (Whole Foods, Vitamin Shoppe, etc mark up on all that health food is ridiculous IMHO). Wait, I bet you can get a superior brand at “Trader Joes”. I’ll check it out. Just some ideas. Bless You and Ryan and Your Family, may God continue to give you the strength each day to never quit or give up. –Patrice
Ken and Sue: I have been reading all your blogs for several weeks now. I think you are just wonderful with all you have been doing for your son. Our son is recovering from a brain injury sustained last March. He has made good progress. I was wondering if you have ever heard of Helen Hayes Hospital located in West Haverstraw, New York. Our son was there for three months and did very well. Best of luck to you all.
Hmm, Lady Gaga, you were ahead of your time. Hopefully you all had a restful day, it’s good to take a little break to re-energize. I hope the paperwork goes well and fast.
Take care.
Ken ,So glad Ryan’s urine has been clear and no bad infections ….praying all the (ugh!) paper work goes thru easily and you can get Ryan to Johns Hopkins very soon …and get the special MRI..Keep up all the good work you and Sue are doing to get the best for Ryan. I’m here and praying for all…Thinking of you all. gail
I buy nutritional yeast in the bulk section at my Whole Foods. I read your blog with such admiration. You and your family are truly remarkable.
I read your blog every day (in fact it is one of the first things I do each morning) and I think you are just the best dad. Ryan is so lucky to have you.
Ken,
I don’t personally use nutritional yeast but if you Google:
(Dr. Richard Schulze – Nutritional Yeast)
you should be able to find quite a bit of information that may be helpful to you.
Or just simply Google (Nutritional Yeast – suppliers) to get reviews and tons of info..
I hope this helps!
P.S. – Personally, I think Google is the best search online – all you ever need to type in are key words and even a simple question and the information will come right back to you!
Have a wonderful day!
Michele
Ken, hope your worries are over regarding Ryan’s suspected infection.
Nutritional yeast can be purchased at Wegman’s, Vitamin Shoppe, or any health food store. Walgreen’s also has it, hopefully in all stores (ask by phone) — likely at Walmart or other drug stores.
Hope you have a good day, still here.
You can buy nutritional yeast (flakes or powder) from different sellers online through Amazon.com.
Hello Ken, I’m sure the rest was good for Ryan. You’re right, we all need to have a day off from time to time. Gosh, I am so sorry about all that paperwork. How vexing. It’s a shame this process can’t be better streamlined. I pray the approvals will happen easily. I guess this is all necessary before the IBRF can start their program. I can only imagine the hundreds of hoops you’ve had to jump through in order to get the highest level of care for Ryan. I admire your tenacity and conviction to do right by your son. It’s paying off — he looks better than ever!! I really respect you, Ken, for everything you do. And Sue as well. Okay now Ken, you dressed up like a woman?? LOL, this is great, I’ve got to see it!! You know, your family has a great sense of humor!! Thanks for giving us laughter along with the serious end of things. It does take the edge off, and makes life’s trials a bit easier to bear. God bless you, Ken, and remember we’re all out here thinking about and praying for you and your fantastic family. Love & prayers, Paula
More specifically, they had me dress up as Whitney Houston. I then lip-synched and gyrated around the stage. In reality, I looked more like Lady Gaga…
I cannot wait to see these pictures!! Ken, you are a man of many wonderful talents!! ; )
Ken
I just have to tell you what a wonderful Father you are. You are going through the exact same thing my brother went through with my nephew. God Bless You. May you continue to be strong and you have dedicated your life to your son just as my brother did. You are such an inspiration to everyone reading this. I can’t tell you how much your son appreciates everything you and your family are doing for him.
Take care of yourself,
Bonnie