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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Luca Jets to The UK Nov 28^th, 2008 at 1:35pm Luca, Nicky and myself fly to the UK tomorrow for Prof Mendelow in Newcastle to do Luca's surgery. She will either be operated on next Wednesday or Friday. I can't believe this is finally happening. Any advice for the flight as she is too young to comminicate what she's feeling? Will keep you updated. Mark
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

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LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Luca Jets to The UK Reply #1 - Nov 28^th, 2008 at 3:32pm Mark~ I don't have any experience with babies or with flying-with-babies-with -moyamoya. But, Little Luca is adorable and I hope her flight and surgery go well. Sending warm, healing wishes to Luca and all of your family Linda (LA)
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hrsridermom

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mother of 19 yr old daughter
with MMD

Posts: 292
Tampa, USA, FL, Florida
Gender: female

Re: Luca Jets to The UK
Reply #2 - Nov 28^th, 2008 at 7:11pm

Mark, we will be thinking of all of you and keeping you in our prayers. Please keep us posted when you can. I'm glad you are able to get her the surgery. Does she still take a bottle? If she does I suggest trying to get her to drink from it on takeoff and landing...that will help her clear her ears. It can be painful when landing especially and the little ones don't know how to do it. As for the moyamoya part we are new to it as well. Destin's surgery is next month.

Donna

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Destin's mom

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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: Luca Jets to The UK Reply #3 - Nov 28^th, 2008 at 10:32pm Mark, I'm so glad you were able to work something out for Luca. My thoughts and prayers will be with you all as you go through this, and I'll be anxious to hear how everything went. Safe travels, and know that your MM family will be with you in spirit. Jill
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charl Junior Poster Offline Mother of a 18 year old with MoyaMoya! Posts: 58 potsdam, USA, usa, 473, 66, NY, New_York Gender:	Re: Luca Jets to The UK Reply #4 - Nov 29^th, 2008 at 7:26am prayers and best wishes, good luck, Amiee and Molly
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Little Luca

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Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female

Re: Luca Jets to The UK
Reply #5 - Nov 30^th, 2008 at 2:55pm

Hi Guys

Thanks for the thoughts and prayers. Well, we made it to Newcastle after 20 hours of travelling. Luca is fine, but, boy, did she let us know that she wasn't happy about all this travelling and changes of environment. She has been grumpy since we left Johannesburg last night, but after a nice bath this evening and a warm bottle she fell asleep very happy.

Now the fear for what's ahead is starting to set it. She is so beautiful and I look at her all the time and can't comprehend why this happening to her.

Here's an interesting story. Yesterday Nicky and I took Matthew (our 3 year old son) for lunch because we won't see him for a long time. We get seated at a table extremely close to another couple, so close that we are practically involved in each others conversations and it comes up that Nicky and I are going to Newcastle to see a neurosurgeon. The woman at the other table turns to us and asks us if we're going to see Dr Mendelow. Of course we reply that we are, very surprised by what she had asked. Well, it turns out that this woman is Dr Mendelows cousin. How's that for a coincidence?

Anyway, tomorrow should be interesting and I'll keep you all updated.

Mark

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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!

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mg12061 Old-Time Poster Offline Posts: 946 Albany, USA, usa, 492, 84, NY, New_York Gender:	Re: Luca Jets to The UK Reply #6 - Dec 1^st, 2008 at 9:04am I'm so glad you had a safe trip.Wow I think that was more than a coincidence!!! It gave me goose bumps when I read it.I will keep your family in my prayers.Thank you for the updates.(((HUGS)))) Mary Grace
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Little Luca Senior Poster Offline Whatever it takes Posts: 346 Somerset West, South Africa Gender:	Re: Luca Jets to The UK Reply #7 - Dec 2^nd, 2008 at 4:39pm Hi All Luca's surgery is tomorrow. Prof Mendelow is only talking about doing the left side at this time. Please, please, please let her get through this....
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

mg12061 Old-Time Poster Offline Posts: 946 Albany, USA, usa, 492, 84, NY, New_York Gender:	Re: Luca Jets to The UK Reply #8 - Dec 2^nd, 2008 at 5:17pm Many many prayers for you and your family tomorrow.We'll be waiting for a good report tomorrow....... Mary Grace
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mc823923 Junior Poster Offline My dauaghter Annamarie lives with mm Posts: 83 Baton Rouge, USA, usa, 345, 271, LA, Louisiana Gender:	Re: Luca Jets to The UK Reply #9 - Dec 2^nd, 2008 at 7:01pm So glad you made it safely. My thoughts and prayers will be with your family tomorrow. Just remember God will be with her in that operating room and he knows what is best. Good luck and keep us informed, Margaret
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gotchlorine

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Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: Luca Jets to The UK
Reply #10 - Dec 2^nd, 2008 at 7:34pm

We're with you, Nicky and Luca, Mark. Speaking from experience, the day will actually be much harder on you as parents. Luca is too young to be frightened, and we'll all be praying that she comes through with flying colors. Hopefully you'll be amazed at how strong little ones can be and how well they do with surgery. Please keep us posted as you are able.

Smiley

Jill

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Little Luca

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Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female

Re: Luca Jets to The UK
Reply #11 - Dec 3^rd, 2008 at 4:53pm

Hey All

She did it!

Luca came out of theater at about 4:30. She went straight to the paediatric ICU and shouted at us for about half an hour because they wouldn't allow us to give a bottle because she had vomitted up the bit of juice she had straight after theater. After much insisting from us that she's hungry, they finally capitulated and we fed her.

Immediately she stopped moaning and turned back into good old happy Luca, smiling, laughing and talking to us; you would never have believed she had come from surgery after a day of people tinkering inside her head.

The Profs and Drs came to see us and were absolutely amazed at her demeanor. Prof Mendelow explained to us that he had done the direct bypass on a 0.5mm thick vessel and also the EDAS procedure in case the bypass doesn't take due to the small size of the vessel. He did a flow test using something called a doppler machine which allows one to hear the flow of blood through a specific vessel. We could hear the blood flowing perfectly through the bypassed vessel.

Because he did both procedures at the same time, Luca has 5 holes in her skull underneath her flesh. The EDAS procedure entailed taking the muscle tissue from beneath the flesh, splitting it into two and feeding it into one of the holes and out a couple of the other holes. Nature takes it course and the vessels from the muscle tissue grow into the vessels on the brain.

Two procedures for the price of one!

She is such a trooper and did everyone proud. I am so happy right now.

I'll update again soon

Mark

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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!

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gotchlorine

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Our daughter, Tara, lives
with MM

Posts: 776
San Jose, USA, usa, 24, 158, CA, California
Gender: female

Re: Luca Jets to The UK
Reply #12 - Dec 3^rd, 2008 at 11:49pm

That's the best news I've had all day, Mark! I am just beyond happy for all of you, and so proud of the trooper Luca has been. If you and Nicky haven't cried a couple of oceans of tears by now, I'll be surprised. It's such a huge sense of relief to be to this point, and I'm sure you're exhausted.

Hopefully the coming days bring nothing but continued recovery for Luca. I'll keep the prayers and well wishes coming . . . please keep us posted.

Warmly,
Jill

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hrsridermom Senior Poster Offline mother of 19 yr old daughter with MMD Posts: 292 Tampa, USA, FL, Florida Gender:	Re: Luca Jets to The UK Reply #13 - Dec 4^th, 2008 at 10:02am Wow Mark...wonderful news!!!! Thaks for letting us know how Luca did. I am amazed they were able to do a direct. So now you can all relax a little more! Take care. Donna
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mc823923 Junior Poster Offline My dauaghter Annamarie lives with mm Posts: 83 Baton Rouge, USA, usa, 345, 271, LA, Louisiana Gender:	Re: Luca Jets to The UK Reply #14 - Dec 4^th, 2008 at 6:47pm That's wonderful news. The good thing is she will never remember anything she went through, although that doesn't help you. Now you can just concentrate on raising your daughter and loving her. Have a wonderful Christmas, you have so much to be thankful for. Love, Margaret
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mg12061 Old-Time Poster Offline Posts: 946 Albany, USA, usa, 492, 84, NY, New_York Gender:	Re: Luca Jets to The UK Reply #15 - Dec 5^th, 2008 at 8:55am Great news!!!! Praying for a continued uneventful recovery! Thanks for the update
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LA Senior Poster Offline Moyamoya survivor since 1999! Posts: 334 Kneeland, USA, 15, 113, C Gender:	Re: Luca Jets to The UK Reply #16 - Dec 7^th, 2008 at 4:10am I'm so happy for Little Luca and you all. I'm in tears of delight and joy thinking of your precious baby being such a trooper. Sending love and health, Linda (LA)
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Little Luca

Senior Poster

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Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female

Re: Luca Jets to The UK
Reply #17 - Dec 8^th, 2008 at 4:50pm

Luca continues to go from strength to strength. She was discharged from hospital today and we've moved into an apartment in Newcastle until Prof Mendelow believes she is fit to travel, probably about 10 days to 2 weeks. It looks like we'll be home in time to spend Christmas with Matthew, our 3 year old son.

Thanks everyone for the kind words and thoughts through this trying time, there truly are good people here. I will continue to update Luca's progress.

Best wishes to everyone

Mark

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« Last Edit: Dec 8^th, 2008 at 4:52pm by Little Luca »

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!

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Cherry (LuckyMe) Junior Poster Offline Get busy on living or get busy on dying? Posts: 91 Chicago, USA, IL, Illinois Gender:	Re: Luca Jets to The UK Reply #18 - Dec 23^rd, 2008 at 4:32pm hi Mark, I'm so glad that Luca is doing great. Wish you all for a very happy Christmas! LoveKeanu
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wyndilee New Poster Offline I Love MM.com! Posts: 5 Seattle	Re: Luca Jets to The UK Reply #19 - Dec 24^th, 2008 at 3:49am i hope your daughter is feeling strong and that your able to be home with your entire family for the holidays wyndi mom to izzy www.allthingsizzy.blogspot.com
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Little Luca

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Whatever it takes

Posts: 346
Somerset West, South Africa
Gender: female

Re: Luca Jets to The UK
Reply #20 - Dec 27^th, 2008 at 12:42pm

Hi All

Thanks for the wishes, and I hope you all had a festive Christmas.

We're still in Newcastle. Decided to fetch Matthew (our son) from South Africa so there would be no reason to rush back and Luca could make a good recovery before flying. It's great to have him here, although sometimes he's like a caged beast in the small apartment with freezing weather outside; not what he's used to at all.

Luca has had her ups and downs since my last post. The swelling got quite large to say the least and the Prof informed us it's something called a pseudomeningocoele. This when the cerebrospinal fluid escapes through the burr holes he made into the space between her skull and flesh. It apparently isn't that uncommon and sounds a lot more gruesome that it actually is; she wasn't in any discomfort. The first attempt at getting the swelling down was to just keep a bit of pressure on it with a light fabric skull cap and try let nature take it's course and her body would slowly absorb the excess fluid. After about a week and no result we decided to do a procedure whereby they did a lumbar punch, inserted a stent and a tube running under her skin from her spine to her stomach which is draining fluid into her tummy. This seems to be doing the trick and the swelling is going down. At no time through this was Luca disturbed or uncomfortable, she's actually been in very good spirits.

Only problem now is she's caught the cold/flu that has afflicted all of us, so she's been snotty and grumpy the last two days.

Our flight back to South Africa is booked for the 3rd of January. We've got an appointment with the Prof on Tuesday and hopefully he is happy that we catch that plane.

Thinking of all of you on here over this festive season, keep well

Mark.

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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!

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LA

Senior Poster

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Moyamoya survivor since
1999!

Posts: 334
Kneeland, USA, 15, 113, C
Gender: female

Re: Luca Jets to The UK
Reply #21 - Dec 27^th, 2008 at 2:01pm

Thanks for the recent post.

I'm glad that things are relatively well for Luca and your family.
Sorry about the cold/flu.
This mm experience can be scary, and I'm glad you're doing so well. I sense that Luca is a trooper! What a dalring smile!! Glad you all can be together.

Lots of LOVE,
Linda (LA) from Northern California, USA

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Linda (LA)

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