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NEME

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I Love MM.com!

Posts: 10

Our 4 year old Baby Girl.
May 24^th, 2009 at 3:55pm

This website is great! We found out that Neome (we call her Neme) has moymoya on May 13th 2009 here is Dallas TX. The same day we got on the internet and tried to find out some information about the disase.
When we found this website we posted a message and Mar email and everything we read on this website helped us make the decesion to call Stanford, Dr. Steinberg's office. I thought I will be transfered from one phone call after another, but we were soo suprized. Jill picked up the phone and she already new about us. She was amazing. We overnighted Neme's MRI to Dr. Steinberg office and Neme's surgeries are already scheduled for June 25th and June 30th.

This is very devastating to us as parents and we are very scared, but having people like Mar and Jill and so many others on this website helped us so much. We started a website for Neme where you can follow her and our journey.

www.caringbridge.org/visit/holdren

Please sign her guestbook if you like. We appriciate all the prayers and support.

Thank you all again. Tunde (Mom) Jim (Dad) Nicole (big sister)

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Lmom Junior Poster Offline I Love MM.com! Posts: 53	Re: Our 4 year old Baby Girl. Reply #1 - May 24^th, 2009 at 5:58pm Hi So sorry you have to go through this! We live in Kansas but were sent to Texas Children's for Lina's surgery with Dr Dauser. Lina has had great success so far! I hope your daughter Neme has good results. We used to live in Plano! Jody
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NEME New Poster Offline I Love MM.com! Posts: 10	Re: Our 4 year old Baby Girl. Reply #2 - May 24^th, 2009 at 8:06pm Thank you Jody. I a glad to hear also that the surgery went well and Lina is doing good. We leave in Prosper only about 15 minutes from Plano. Thank you for your email. And keep us posted on Lina's recovery. Tunde
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Islandentity

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My son Robert has MM

Posts: 151
Drummond Island, USA, usa, 387, 60, MI, Michigan
Gender: male

Re: Our 4 year old Baby Girl.
Reply #3 - May 25^th, 2009 at 7:43am

Tunde,
Sorry you had to find this web site, but so glad your here, Our thoughts and Prayers are with you and your family for a speedy recovery and a queit month leading up to surgery,

Please know that this site and the people on it kept me form losing my mind during Roberts dx and surgeries (also at Stanford 10/06 11/06)

If you have questions you may ask them here, It may not be medical advice you get back but real life experience on dealing with issues

If you can I (and others I would imagine) would like to hear more on Leme's symtoms and diagnois , Only if your comfortable doing that.

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BEER Is proof that God Loves us, and wants us to be happy - Benjamin Franklin

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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: Our 4 year old Baby Girl. Reply #4 - May 25^th, 2009 at 8:03am Hey Tunde Welcome to the moyamoya family. I'll be thinking of you guys and sending lots of positive thoughts. I had a look at Neme website. She is beautiful, well done. Stay strong Mark (Luca's Dad)
Back to top	1st stroke in September 2008, age 10 months Bi-lateral mm diagnosis 2nd stroke in November 2008, age 1 year old Left side surgery in December 2008 13 years on now Doing just great! IP Logged

PaulaMart

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I Love MM.com!

Posts: 84
Spain
Gender: female

Re: Our 4 year old Baby Girl.
Reply #5 - May 25^th, 2009 at 9:45am

Hi Tunde,

I have also a daughter of 4 years old who has been operated one month ago. Please think that you are not alone and that you will find here a lot of people who can help you and share with you all your doubts and preoccupations. I understand perfectly what’s your feeling now but please try to be optimistic and think that everything will pass …. The fear to the unknown is normal, but Neme will be fine, sure!!

All the best for your family.

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NEME

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Re: Our 4 year old Baby Girl.
Reply #6 - May 25^th, 2009 at 6:04pm

Hi Everyone,

I'm Jim, Neme's Dad & Tunde's Hubby. Last nite we had a very rough nite. Neme went over to a very good friend of ours w/ kids & kittens & lots of stuff to do. She had a great time but when we got home she was 'crankier' than usual. We tried to give her a quick bath but that erupted into a very unpleasant experinace for all...she wanted to go to sleep & started throwing a fit w/ crying, etc. which isn't like her. We wisked her from the bathtub, dried her off & took her to bed w/ Tunde & I. Tunde was calming her down w/ a "story" & Neme looked over & said she couldn't touch her stomach w/ her right arm. Tunde yelled & at me & I went racing upstairs. She had good movement w/ her rt arm to her head but said she couldn't touch her shirt. W/o saying, we went into panic mode. We started asking her what was wrong & she replied something about "roly polies in her hand & she needed to let them go..." For those of you unfamilian w/ roly polies, they are little slug-like insects that are harmless & curls up into a ball whenever they are disturbed & Neme loves them. We immediately started talking about rushing her to the hospital but there are no Moyamoya experts in the Dallas area that we have found, especially at 11pm on a Sunday before Mem. Day. Finally she became relatively coherant again & Tunde continued to calm her down w/ the story & she regained her mobility again. She fell right asleep (quite exhausted I'm sure from a full PM of play). Tunde & I were up most of the night talking about the what ifs & should we rush her to Children's Hosp. in Dallas (about 45 minutes from us). But we decided that she was finally resting so peacefully & if we woke her up to go to the hosp. it would prob. add to her trauma & may spur on a full-fledged stroke.

Did she have a TIA? What do we do next time this happens? This is absolutely unbearable...we don't leave for Stanford until June 17. SUGGESTIONS/ADVICE PLZ???!!! These are the longest days on my life & don't know how we can make it another 3 weeks of not knowing before 'real long road' begins. Thanks in advance for your thoughts....& thx everything so far.
Jim

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Reagan

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Posts: 75
Lee's summit, USA, usa, 302, 159, MO, Missouri
Gender: female

Re: Our 4 year old Baby Girl.
Reply #7 - May 25^th, 2009 at 8:08pm

Jim and Tunde,

I like the others are sorry that you are having to stumble across this site, however I am glad you are here. Welcome to the Moyamoya family. Here you will find so much support in the upcoming days, months and years. The feelings you are experiencing are feelings many others have experienced. While I do not have experience with having a child with moyamoya, I live with MMD myself. I still live in a fear, but it gets better with time. The waiting between now and surgery day is the hardest. Once you're in Stanford it is almost like a weight is lifted off your shoulders because you know you are in good hands. Keep us posted on Neme's progress. You and your family are in my thoughts and prayers.

Reagan

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Becky

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Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Our 4 year old Baby Girl.
Reply #8 - May 26^th, 2009 at 12:29pm

Jim and Tunde,
Welcome to the MM family. I am sorry to hear Neme is having a hard time. I have never has a TIA so I can not answer that question. It sounds like a stroke eather way. My sugestion is to write all of this down for Dr. Stineberg and call his team. See if he thinks the June 17th date for Neme's surgery is okay and what should you do untill then. I will pray for Neme to have no further incidences and for a safe surgery and a speedy recovery. Jim and Tunde I will also pray for you to find strenght to get through this difficult time. Jim and Tunde MM effects every one differently the reasons are still unclear of why. You are in the best hands with Dr. Stineberg!! His team will ensure the best results. Please keep us posted on any updates.
Hugs,
Becky

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What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

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cass/kate

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Daughter Kate has moyamoya.

Posts: 247
Dallas, USA, usa, 270, 251, TX, Texas
Gender: female

Re: Our 4 year old Baby Girl.
Reply #9 - May 26^th, 2009 at 6:03pm

Tunde and Jim -

Just saw your e-mail. Am so glad you are taking Neme to Stanford to Dr. Steinberg. Three and a half years ago we got the diagnosis re: our 20 year old daughter Kate. There was no one in this area the seemed to know anything about MM and we found Dr. S on this website. Then we found Jill, went to Stanford, and the rest is history. Kate just had her three-year check-up and everything is wonderful! She just graduated from college and her health is excellent! We are so blessed.

By the way, we live in Dallas!! Please feel free to call me anytime and/ or e-mail me here. My cell phone is: 214-500-1739; home phone is 214-553-0331 and e-mail: mamacass11@msn.com. Hope to hear from you soon and y'all will be on my heart and in my prayers. Hugs,

Cass Rinehart PS CALL ME SOON AND ANYTIME!

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« Last Edit: May 26^th, 2009 at 6:09pm by cass/kate »

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NEME New Poster Offline I Love MM.com! Posts: 10	Re: Our 4 year old Baby Girl. Reply #10 - May 28^th, 2009 at 12:22am Thank you all so much again for all the support. I am sooo glad I found this website, it helps sooo much. Cass, Oh I am so glad you wrote us. Can we meet for lunch or dinner? JIm's cell# is 469.951.1216 and my cell# is 469.233.1823. We will call you tomorrow. Thanks again everyone. Tunde and Jim
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russan1959

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I love YaBB 1G - SP1!

Posts: 55
Palatine, USA, IL, Illinois
Gender: male

Re: Our 4 year old Baby Girl.
Reply #11 - May 28^th, 2009 at 11:02am

Hello, It is my personal experience and it has been reported by others that a specific symptom of MM is temporary paralysis following hyperventilation. As a child I would become temporarily paralyzed on the left side of my body following a crying spell. Blowing up a balloon would result in the same. A surgeon told me that in Japan, children sucking up noodles would have this experience. I hope this helps to know and that all goes well for you and your child.

Russ

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