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kotipup

Experienced Poster

Offline

My daughter, Daphne, has
Moyamoya

Posts: 247
Landenberg, USA, PA, Pennsylvania
Gender: female

Daphne Follow Up Tests
Sep 8^th, 2005 at 1:05am

We are just so excited -- I had to share. Daphne had her angiogram at Stanford yesterday, and her revascularization looks excellent. Dr. Steinberg told us that it was one of the best he'd ever seen -- much better than he expected. ; Grin

;

Today, we looked at the "before and after" angiogram films, and - boy - was it a huge difference. Simply amazing. Almost her entire brain blood supply is now going through the surgically-implanted grafts. Shocked

Tomorrow and Friday she has her SPECTs, but - so far, we have been really happy with the news. We are so proud of our resiliant little girl who - just seven months ago - was expected to die, and so grateful for Dr. Steinberg and everyone at Stanford.

Jenny (mom to Daphne. 23 months old, today)

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Chelsie Experienced Poster Offline Posts: 127 Columbus, USA, usa, 418, 135, OH, Ohio Gender:	Re: Daphne Follow Up Tests Reply #1 - Sep 8^th, 2005 at 8:39am Jenny- What wonderful news! I am thrilled to hear those results! Thanks so much for sharing...that made my day! Hugs, Chelsie
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STrantas MM.com Benefactor Offline MoyaMoya Survivor Since 2003 Posts: 1154 Philadelphia, USA, usa, 490, 122, PA, Pennsylvania Gender:	Re: Daphne Follow Up Tests Reply #2 - Sep 8^th, 2005 at 9:04am Jenny - That is awesome news! Thanks for sharing! Please give Daphne a big hug for me! Keep up the good work, Daphne! -Shari
Back to top	A smile is contagious...start an epidemic! Dr. Scott did my surgeries - 12/29/03 and 1/5/04 IP Logged

Lore

MM.com Benefactor

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My brother Kevin (Cubbie)
has Moyamoya

Posts: 819
Delaware, USA, usa, 419, 133, OH, Ohio
Gender: female

Re: Daphne Follow Up Tests
Reply #3 - Sep 8^th, 2005 at 9:55am

Jenny,

I could feel the excitment and relief in your words. Celebrate!!! Celebrate!!! Dance to the music!! (I'm dancing now for Daphne and you). Smiley

This is such great news for you and Daphne. It still amazes me how resiliant children are when it comes to some of the most horrific medical conditions. The fact that her blood supply is almost 100% is just incredible. Smiley

Of course I'm predjudice when it comes to Stanford and Dr. Steinberg but I can really relate to how grateful you are because I too am grateful for them and what they did for Kevin. Smiley

It's true, it's true! that Dr. Steinberg and Stanford do such extraordinary things for MM patients. Smiley

I'm so elated you and Daphne have such great news! Simply savor it. Give that little Daphne a great big hug and kiss for me. Smiley

Hugs and God bless,

Lore

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"What lies behind us and what lies before us are tiny matters compared to what lies within us." - Ralph Waldo Emerson

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CarasMOM

Old-Time Poster

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My 11 year old Cara has
MM.

Posts: 525
Sedalia, Missouri
Gender: female

Re: Daphne Follow Up Tests
Reply #4 - Sep 8^th, 2005 at 10:54am

Jenny....how exciting...thats wonderful news. Daphne will just keep on growing, healing, getting stronger. ; Grin

Cara had her MRI and MRA last Friday and we found out the both bypasses were flowing well, too. Dr Bernes is just her neurologist in Phx. They decided not to do the angiogram yet...shes doing equally great too. Dr. Bernes says that her surgeries were indeed successful too. We're sending Dr. Meyers a CD of the tests and will get more feedback from him eventually.

Tight HUGS, Carol

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Warm Hugs and Prayers, CarasMOM (Carol)

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Seachelles Old-Time Poster Offline God never gives us more than we can handle. Posts: 681 Fredericksburg, USA, usa, 474, 157, VA, Virginia Gender:	Re: Daphne Follow Up Tests Reply #5 - Sep 8^th, 2005 at 2:56pm Carol and Jenny, Such great news to hear about Cara and Daphne! How absolutely amazing! Please give Daphne and Cara big hugs and kisses for me! Michelle
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gotchlorine Old-Time Poster Offline Our daughter, Tara, lives with MM Posts: 776 San Jose, USA, usa, 24, 158, CA, California Gender:	Re: Daphne Follow Up Tests Reply #6 - Sep 8^th, 2005 at 3:39pm Ditto to what Michelle (and everyone else) said, Jenny and Carol! I love to hear success stories, and am truly thrilled for both of your families! Lots of love, Jill [smiley=sayyes.gif] [smiley=sayyes.gif] [smiley=sayyes.gif] [smiley=sayyes.gif] [smiley=sayyes.gif] [smiley=sayyes.gif] [smiley=sayyes.gif]
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Shan Old-Time Poster Offline MM Survivor ~ May 27, 2005 Posts: 849 Honolulu, USA, usa, 376, 346, HI, Hawaii Gender:	Re: Daphne Follow Up Tests Reply #7 - Sep 8^th, 2005 at 5:00pm Jenny & Carol, Amen!...to the wonderful news!!! What a blessing! Take care, Shan p.s. Please also keep us updated on Daphne's Story on the Discovery Channel. I can't wait to see her!
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babyblue Senior Poster Offline Diagnosed 2003 Posts: 306 kennesaw, USA, usa, 417, 219, GA, Georgia Gender:	Re: Daphne Follow Up Tests Reply #8 - Sep 9^th, 2005 at 9:32am Jenny- Way to go Daphne!!! I love hearing good stories to start my day. Thank you for sharing the great news. Christy
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Dewski Junior Poster Offline Married. Son has MM. He is 17. Posts: 70 Syracuse, USA, usa, 479, 86, NY, New_York Gender:	Re: Daphne Follow Up Tests Reply #9 - Sep 15^th, 2005 at 1:27pm Jenny, AWESOME AWESOME NEWS!! WTG DAPHNE!! -= Dewski =-
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Greg-NJ1 Experienced Poster Offline Mis-diagnosed with MM in 2005, arterial restricion Posts: 248 Teaneck, NJ Gender:	Re: Daphne Follow Up Tests Reply #10 - Sep 19^th, 2005 at 8:05pm Wow, great news. I love hearing the wonderful success stories, as it makes things a little easier as I await my full diagnosis. Congrats again, Greg
Back to top	I was misdiagnosed with MM in March of 2005. In January 2006, I was told it is not MM, but rather a massive restriction in the MC1 segment of my left carotid artery. IP Logged

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