Day 13 10/28/08
October 28th, 2008
Pretty much the same as yesterday. Therapy and more therapy. Found out I will be getting that seventh injection and only one more spinal! I told the doctors I would do whatever was necessary, but this is the way they want to go. The doctors examined me again today and said I’m making excellent progress. IV tomorrow, spinal Friday, and 3 more IVs after that. I’ve been doing PT once a week for a year and a half (all that insurance allows) but when I get back, I’m going to step it up to three times a week for the next three months. It’s very important to give the stems their marching orders early on.
We’re losing another couple and a mom and grandson from Nebraska tomorrow, drinks and appetizers tonight. A mom and her daughter(early 20′s) from New Zealand arrived yesterday. This girl was 21 years old when she died of a heart attack. They brought her back and she died three more times in the ambulance. Oxygen deprivation.
So people come and go, and one problem is more horrifying than the last. Makes you realize that your problems aren’t so bad. A lot of people are telling me how brave I am for coming here alone. I’m not brave. I’m just doing what I have to do. The brave ones are the 5 year olds with Cerebral Palsy and Optic Nerve Hypoplasia and autism and oxygen deprivation from drowning that are here, smiling despite their challenges. And their parents. That’s bravery. I’m not religious, but I thank God that my problem is not genetic. I don’t know if I could face that.
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9 Comments Add your own
1. Anahid | October 28th, 2008 at 10:35 pm
Hi Mike! I’ve caught up on your blogs — wow — so much. The climb up the spiral staircase w/special brown sauce at the top…the awful epidural….mcdonald’s…the superman pt pose…the clean patrol…the steps forward and back – and thru it all, such good spirits and courage – am so proud of you! I laughed at Aunt Sylvia’s nurse ratchet advice but she is so right — you must be your own advocate. Demand the care you need — and it sounds like you are too. Let that ugly american come out from under the rock if it gets you the care you need and protects you from any “care” you don’t.
(transporting you out of China) –> Last night was a Halloween party at the kids’ elementary school. Spencer & John were Dracula (I painted their faces all up and put capes on them), Kate was a princess (pink dress, pink eyeshadow + blush, eyelashes painted on and red spirals on her cheeks —her idea) and I was a witch (no stretch for me of course). Each teacher dressed up and handed out candy in front of their classrooms. One was the statue of liberty standing on a chair, another was a laundry basket of clothes. The older kids had turned the stage into a haunted house – cardboard boxes w/hanging plastic bats, werewolf hands poking thru black plastic to do high fives. Once we got out the kids got to vote on how many candy corns were in the jars (Kate said 20, Spencer said 100), who the best/funniest/scariest/prettiest teacher costumes were then go for a treats set out on a lunchroom table — cookies (ONLY 2 PER CHILD said the note), cups of water and pretzels. We got home after 7:30, I made pancakes for dinner and we all collapsed in bed after scrubbing faces. Spencer had a hint of blue around his eyes still this morning. Trick or treating is Friday,,we’ve decided not to hand out candy at all this year because going out with the kids is just too much fun.
I’ll close on that my dear cousin. Am thinking of you during this amazing time. The comment from Melissa about your wonderful writing got me thinking…how interesting it would be to get all the bloggs at the hospital printed in a book (names changed of course) which could begin/further the dialogue about the importance and NEED for stem cell treatment and research. Watching you go through this whole experience – and the tons of others at the hospital — has really opened my eyes to how critically important this technology is and how the treatments need to be more accessible to the masses that can benefit from it.
Best of luck with the upcoming days + treatments…and Less Corn.
unless it’s candy corn!
Love you Mike.
xoxoxox
Anahid
2. Haig | October 28th, 2008 at 11:18 pm
Hey Mike!
Sounds like you’re having quite an adventure over there. It also sounds like you’re making real progress. Great news all around.
Some Ann Arbor news briefs for your amusement:
Ema started her new job at the law firm in the Detroit area. So far so good. She enjoys the work and the people. Working in the Litigation area, specifically in the Probate area. May start to work in the Intellectual Property area soon.
All’s well at SHAR considering the economic hysteria. We’re a bit nervous about November & December, but hopefully the worst news is behind us and everyone will start to lighten up. I’m feeling good, playing tennis and a little golf when I can squeeze it in and it’s not too cold.
Lions are 0-7, and Michigan Football is a dismal 2-6. Tough times for football fans in Michigan! I still think the new Michigan Coach will be outstanding and will develop a consistent Top 10 program.
I’m hoping to go on a fishing trip Up North in Michigan for Steelhead. A couple 2nd-cousins on my mom’s side of the family have a lodge in Northern Michigan and they hunt and fish a lot up there. I’m not a hunter but fishing is fun. This is world-class fishing up there in october & November. We’re talking 20 pounders!
That’s all for now!
Best wishes from me and Ema.
3. Aunt Sandy | October 29th, 2008 at 12:23 am
Good goin’ – sounds like you’re on the right track and glad your spirits are lifted & the more of the game plan is laid out. I think knowing what’s ahead is a positive help – We’re doing good here at Mom’s – hoping to get more packing done and anything else I can help out with while I’m here. Did you carve that pumpkin I sent ????? Woops, Rigo calls I’d better take him o-u-t, with the rain we had all night and this morning he’s been a good boy waiting for a drier moment or two…….let me grab it before it rains again — OOOO’s, XXXXX’s Love ya, Aunt Sandy
4. Eleanor | October 29th, 2008 at 12:46 am
Hey Mike!
I have been reading your blog since you started, just haven’t commented yet…it is great to hear about everything that you are doing, people you meet…
I think what you are doing is amazing and definitely very brave. I have a friend with MS who is considering getting stem cell treatment. I will have to tell her about your experiences. She also says that the doctors here don’t think it is a good idea for her.
Nothing very new here in MI. I am busy with school and horses…just finished my midterms. I will start applying to universities in a little while…maybe out east? I am also continuing my search for answers to my leg problems. Definitely not as complex as your struggles, but I feel for you! I am hoping to be able to see a neurosurgeon at U of M in the peripheral nerve surgery department…maybe they can help me. It is getting cold around here, no snow yet though. Snow is, in my opinion, the only positive result of cold weather. Anyway, that’s about it. I will be voting next week for stem cell treatments in MI!
I know that some days must be harder than others, but I am sure that you are hanging in there just great. Don’t forget that no matter what, good day or bad, time will continue to pass just the same, and you will soon be back at home.
Good luck with everything, keep working hard…I look forward to reading your continuing blogs!
Sorry for the long comment:)
wishing you all the best,
Eleanor
5. melissa tantillo | October 29th, 2008 at 1:36 am
Greetings on this amazingly wet and yukky afternoon~
I’m beginning to think that you took the good weather with you to China! Better there than here. I have no idea what Optic Nerve Hypoplasia is, and not sure that I want to. I will say that I am overwhelmed at what parents will do (and more overwhelmed at what the HAVE to do) to help their children. Thank you God for all our healthy Goz/Tantillo kids! I don’t know how you are getting through seeing the sick kids, i guess you just do it. Like when CJ was in the NICU and everyone thought it was so awful to see all the other incubator babies. I guess you just put your mind to it and do it. Always knew you were strong, just didn’t know how strong.
On the food front, I really hate it that you have been so limited in your cuisine. Put your orders in now, because I’m cooking anything/everything your heart desires when you get back! It’s funny, but Joe Borchers was right~ you make food taste better!!! So, maybe we’ll all get our appetites back in a few weeks!
I have to remember to edit myself on this blog~I do tend to ramble. Enjoy your drinks and appetizers, at least it will be a break from dumplings and corn pizza!!
Sending billions of good thoughts through the universe~
Melissa
6. Deb | October 29th, 2008 at 2:23 am
Don’t even begin to think you’re not brave…what you’re doing & living with takes a tremendous amount of courage. And you may not be religious, but you are somewhat spiritual…which leads me to my favorite “12 step program” spiritual mantra…”God Grant me the Serenity to accept the things I can not change…the Courage to change the things I can…and the Wisdom to know the difference.” It seems to me that you are living this daily, in so many ways.
Mom is reading your blog, but she has WebTV and doesn’t think she has the ability to post comments, but she reads
it daily and is sending prayers and well wishes your way daily.
I notice Melissa said it was amazingly wet & yucky in NY today…same here in Cleveland and oh, so chilly cold !! Majorly windy. Hail storm yesterday. Makes me want to put up the Christmas tree ! Seems like yesterday was 4th of July…once that hit Labor Day came quickly…suddenly we’re planning Thanksgiving. Yikes, they just said on the radio we might see snow tonight.
Gotta get back to work…but many hugs being sent to you and all those happy little stem cells !!
xoxo Deb
7. Al Vergona | October 29th, 2008 at 3:57 am
Mike great blog, following it with a lot of interest. Couldn’t agree with you more about how lucky we are compared to some..especially the kids. Hope you are doing well, and I hope our paths cross next month.
8. Jeff Crowe | October 29th, 2008 at 7:13 am
Mike,
I had 2 more people contact me today that are considering China and stem cells. One has ataxia, the other has a nephew (or something) with brain damage from an automobile accident. I gave the guy with ataxia your blog site (along with other sites) so he may be writing you for some info.
As far as the therapy, you’re right. There’s no comparison to the Chinese methods vs. “our” methods. Strenuous doesn’t even begin to put it into words.
You’re right on another front, too. The ONH kids, the autistic kids, the brain damage kids, etc., and ALL of their parents are the brave ones. While I was there, we met 5 kids who had ONH. For those that don’t know, ONH is an optic nerve disease that usually causes one eye to be blind and the other to be sometimes as bad as 20/800 (compared to a normal 20/20). Along with the EXTREMELY poor vision out of the “good” eye, there is usually tunnel-vision associated with it. ARGH!!!
One last thing and I’ll stop rambling. Did I read your blog correctly when you said your disorder IS NOT genetic? I know I’ve probably asked before, but what is your exact diagnosis? The reason I ask is because of the similarity of our symptoms and the fact that mine IS (unfortunately) genetic.
Bye for now…
Jeff
9. Aunt Sandy | October 29th, 2008 at 9:02 am
Hello again Michael – had a busy day here with Mom, managed to pack up most of what was on the LR bookshelves. It was a good thing to do on this rainy miserable day. Went out for a bite earlier (nothing as delicious as pizza with corn) and now Mom’s off to choir rehearsal and I’m just kicking back since it’s raining and can’t take Riggo out for the evening walk. We’re all delighted things are moving in a postiive direction for you. I agree with Melissa, I knew you were strong but not how strong – I should have known better. Calling it a night for now and look forward to more good news from you in the morrow.
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