Hi all,
I just thought I can post some updates about my lovely little niece Joad.
After waiting for Boston for 12 weeks we decided to change direction and we contacted Stanford University. The medical team is amazing, they are so efficient and helpful and everything was sorted in no time.
Thank God. Joad is at Stanford at the moment doing her tests and getting ready for surgeries. She had her MRI and her angiogram last night.
Unfortunately her case progressed a bit since her last MRI and the moyamoya vessels are spread on her neck.
She is supposed to see Dr. Steinberg next week to decide which type of surgery is best for her.
Your prayers are important to us
I am happy to answer any questions.

:)

Hello~

Am sorry your niece had moyamoya.

Stanford is a great place, with a responsive and excellent staff.  I had my surgery there in 2000.

Hope your niece does well.

I wish you and your family the best,

Linda

Hey Entesar

Best of luck for Little Joad. I'll be thinking of her and keep us posted.

Mark (Luca's Dad)

Entesar,
you have made the best choice with Dr. Stineberg. I am glad things are going well. Please keep up the posting of progress.
Becky

Hi all  [smiley=hiya.gif]
Yay Joad has finished all the required tests. Brave little girl  :)
She had MRI, angiogram and Brain Spect Study – Nuclear Medicine part I and II.
She did break the rules though, she was supposed to be fasting for her brain study but she took a sip of her father’s coffee when he wasn’t paying attention. Everything was pushed back few hours, Thank God. But she got it done on the same day. My sister told me she was under 4 times this week but she did not cry or complain.
My sister is very impressed with the people at Stanford, everyone is so lovely. They make sure that Joad has everything she needs.
She will be seeing Dr. Steinberg on Monday afternoon and her first surgery is scheduled for Tuesday 28th. He will look at all the tests results and discuss them with my sister and brother in law and decide on what type of surgery is best for Joad.
Joad has another rare condition known as neurofibromatosis 1. But the doctors said it is very common with MM and it should not cause any troubles when operating.
Cheers you guy for stopping and reading and most of all for the support and prayers.   [smiley=dankk2.gif]

Hello!  My daugther, Emily, 14 had her surgeries one year ago and also has NF1. There are a few kids on here with NF as well.  Everything was handled very nicely there.  I hope everything goes as well for your niece as it did for my daughter!!  If you have any questions or anything my email is:  audge67@sbcglobal.net

My daughter just had her pial synangiosis surgery on Friday 7/24 in Boston and she is doing wonderful.  These kids are so strong and bounce back so quick you just can't believe it.  I will be praying for Joad, especially on Tuesday.  

Demian

(Abby's Dad)

Big day for Little Joad today. Best of luck to her and her surgeons.

Mark (Luca's Dad)

Hi all,
I did not get to speak to my sister yesterday because of the time difference but I have received few text messages from her. So here is my little update.

Joad got to see Dr. Steinberg and Dr. Khan yesterday at about 3 pm. My sister said they were very nice and they explained everything to them in a very non-scary way. Since Joad right side is in a very bad condition and has severely progressed in the last 6 months, Dr. Steinberg told my sister he wants to do a direct bypass (I was hoping he would say that, Yay  :)). This will guarantee immediate blood flow. They were surprised how the disease progressed so fast.

Dr. Steinberg told her not to stop the aspirin because it is too risky, she only will have to stop it today (the day of the surgery). The surgery is scheduled today at 2 pm (Pacific time). Joad has to be fasting today she is only allowed to drink water until 11, Poor Joad. The surgery normally takes 5-6 hours. Poor Joad she knows she will have a surgery today but she doesn’t know what does this mean. I bet she will tomorrow though.

He told my sister he is seeing 4 other moyamoya patients this week, 2 adults and 2 paediatrics. It seems moyamoya is not that rare anymore. I wish all 5 people the best of luck.

I have watched Dr. Steinberg presentation again yesterday from the ‘moyamoya symposium’, he said the procedure is easy as most of the residence know I kept listening to him say it over and over and over. I am extremely nervous. I think I will be up all night. I hope things go well for Joad today and all other moyamoya patients.

Thank you all for stopping and reading. Please be there for my niece today, this experience has been really tough on all of us.
Thanks all and specially Mark  :)

Entesar,

I wish your neice and entire family the best today and over the following weeks.  Joad and your family will be in my prayers throughout.  Just remeber that she is in the best hands at Stanford with both Dr. Steinberg and Dr. Nadia Khan.  She took care of me when I had my surgeries back in April.  She is wonderful.  I will be praying all day for her surgery to go as successfully and swiftly as possible.  I have heard that waiting is the worst.
I pray the her wait is minimal and goes by quickly for her.  

Tracie

Hi Entesar,

Joad is in our prayers. She will be fine.

All the best for your family,

Paula

Thank you guys,
I just feel really nervous and a little bit shaky. I am at work now but I feel like I can’t do anything.
The surgery is not for another few hours. You are absolutely right waiting is the hardest.

I am thinking of you today , and thanks for the updates , we find out tomorrow when Josh will have his surgery , his will also be direct and the MM is just on the right side , i guess thats how you explain or say it m still trying to wrap my head around all this , he also has NF1 , which is another rare genetic condition but has been ok with all taht , just a lot of visits to drs for check ups , i know i will not be able to sleep tonight also , just waiting on a date is rough , i can  only imagine what it will be like on surgery day ....

Hi Entesar,
Joad will be in my prayers today as will you and the rest of her family. I can only imagine how difficult it must be to be so far from her and waiting to hear that she is through it and on her way to recovering. Take heart, she's getting the best possible care. It's amazing how quickly the kids recover.
Kim

Hi all  [smiley=hiya.gif]
Thank you for all your prayer
Joad had her first surgery and she is doing well now. :)
There was a small change of plans, she had her left side done first because it was quite bad and Dr. Steinberg did not feel comfortable leaving it to next week. The surgery started at 4.45 pm (Pasific time) and was finished by 10.30. Dr. Khan also spent few minutes talking to my sister and brother in-law and kept reassuring them before the surgery. She is very nice.
My sister told me that the anaesthesia specialist kept going in and out of the operating room just to fill them in on how things were going and he helped translating few things to my sister.
She told me Dr. Steinberg spoke to them after the surgery and told them that Joad did very well and Dr. Khan was finishing off and she should be out soon. Thank God she did not have a stroke during the surgery. The blood flow is 10 times more than it used to be. She will spend the night at the ICU. But the doctor told my sister she should be awake in about an hour. Unfortunately cell phones are not allowed in the ICU.
The only thing upsetting my sister now is Dr. Steinberg told her that Joad will never gain control of her right arm again and she will have some memory issues. The only thing that might help is going to specialists. She can’t do it in America because there will be a language barrier and it is obviously away from home (Kuwait). My sister knows already she won’t find any specialists in Kuwait.
For now, we are all so happy Joad had her first surgery, getting the treatment was like a dream for us that is now coming true.
Thank you all for stopping and reading and praying for our little angel  [smiley=sayyes.gif]

Thanks you for your update , it is 530 here in Canada and  once again i can not sleep , came on to check on any new messages on here and i am very happy to read your update , i am praying they finally have a date for us figured out for Joshs surgery , cause i think i am gonna go crazy soon if not , take care and wishing for a speedy recovery for your niece

Brilliant, brilliant, brilliant.......

Well done Joad
Well done Dr Steinberg
Well done Dr Khan

We were told Luca would not see again and she proved them all wrong. Keep the faith with Joad, she will use her right arm and with the correct rehab won't suffer any major memory issues.

Right, where's that bottle of champagne?.......

Mark (Luca's Dad)

Hey Mich: Good morning. Bright and early for you then. Hang in there, the waiting is difficult but before you know it you too will be posting about Josh's succesfull surgery..... and I'll have to drink more champagne!

I am so happy everthing went well for Joad.  :)  Thanks for updating for us.   :)

That is great news. I knew little Joad would do just fine. I am so happy for you and your family. She is so lucky to have you in her life. I hope you can rest a little easier now. We will pray for a speedy recovery. Lots of love. Mike & Danielle

I am so happy for you and your family..this is another great news in moyamoya family...Thank you God for amazing surgeons that deal with this disease..Joad wishing you speedy recovery..

Hi all  [smiley=hiya.gif]
It is time for another update, I had to call my sister at 2 am (UK time) to talk to her because mobile phones are not allowed in the ICU.

Joad is doing well, Thank God. She spent the night in the ICU and the nurses were checking on her all the time. My sister and brother in law were allowed to stay with her but they were not allowed to sleep in the room. It was a bit tough on both of them especially with no sleep. At least they were allowed to stay in the same room and keep an eye on her.
The night went good no crying or complaining Joad was asleep most of it. When she woke up the first thing she said ‘I am hungry, I want some cornflakes’ so we knew she was back to normal. She loves cornflakes.  :)

She threw up 3 times yesterday, but then she ate her cornflakes and had some water. She is back on Aspirin, Tegretol and folic acid, same amount as before. She got up went for a small walk, was able to walk to the toilet and talk a bit but she was tired and said all she wants to do is sleep. Dr. Steinberg said if she had eaten and walked then she is fine, the need sleep is completely normal. He thinks she will be discharged on Friday. He was quite pleased with everything.

My sister sent me few pictures, her face is a bit swallow, which is normal. She couldn’t open her right eye. But I am sure she will be maybe today. Her incision is covered but the doctor said he will remove the bandage today and let it air a bit.

My sister emailed me later, Joad is complaining of some headache and stomach ache now she is taking Dexamethasone 4 times a day and Ranitidine 3 time a day. She should be out of the ICU soon as soon as a room is available for her.

My sister speaks highly of everyone at Stanford and Lucile Packard. She said people kept popping in and checking on Joad all the time. She told me she can’t remember how many people (staff) she has met in ICU. She said I am getting old I can’t remember all their names.   [smiley=laugh.gif]

Will be in touch later when I get some more information.
Thank you guys for the support, love you all.
Mark, Luca is the prettiest girl I have ever seen. :)

This is great, Entesar. Everything she's experiencing is pretty normal. Nothing to worry about. Unfortunately I think the swelling will be even worse today and tomorrow, after which it will start to subside.

Mark (Luca's Dad)

Entesar, WOW! Everything sounds great. The vomiting that first day is very hard to watch. Your family is very strong. My husband and I took turns in the ICU so one of us could sleep. We both felt guilty when we left to get rest. It is interesting to read how people felt after the surgery my daughter was so young she couldn't tell us how she felt. I was thrilled to read she ate and took a short walk. What a tough little girl. She looks so happy in her picture. Can't wait to hear more. Danielle

Hello

Glad things are going well for Joad.
My husband and I have been following her 'adventure' and wish the best for you all.

Let us know if we can be of any support, we're close by.

I had my surgery with Dr. Steinberg in 2000!

We wish you the best!

Linda and Jack

This is wonderful news. Thanks for keeping us all posted on her progress!!!  :)

Hi all  [smiley=hiya.gif]
Yesterday I got to speak to my sister via msn. She needed to buy a top up for her mobile phone but she did not want to leave Joad alone.

Mark you are right her face looks more swollen than it looked on Wednesday, but the doctors said it is completely normal. But not sure how long it will take for it to go back the way it looked before. It is quite a big incision, I was scared when I saw it. My brother in law take a pretty close picture of it.  :(

My sister said she was in a very bad mood and a little bit upset yesterday because she doesn’t like the needle in her arm. She had a visit from the physiotherapist, but she did not want to do it because of the needle. Her right arm is still very week and she can’t use it as much as she wants to. The therapist wasn’t sure if the therapy will actually help Joad because physiotherapy takes time and Joad won’t be staying in CA long. But my sister thinks if the therapist can teach her what to do and how to do it she will try to do the same thing in Kuwait.

This morning my brother in law sent some new pictures of Joad, she is back  :)
She was drawing and colouring and playing football with one of the nurses at least she was smiling. Dr. Khan paid her a visit yesterday and told her she will be realised today and she will have to come back next Tuesday for her second surgery. Poor thing, she will have to go through it all again. Not sure what type of surgery it is going to be but I assume direct bypass again.

My sister and brother in law are exhausted but my sister is very happy that Joad had her first surgery. The nurses and the lady in the international office want her to go to the zoo this weekend, they have printed a map for my sister. They are all the best.

Now I know how parents and relatives of moyamoya patients feel, I mean Joad can talk and complain if something is bothering her. My heart goes out to the little ones who can’t say a word. The are very lucky to be diagnosed and get the treatment.

Take care and have a good weekend every one. [smiley=dankk2.gif]

Fantastic news!!  Thanks for the update.  Although she has to go through another surgery Tues...she will at least know what to expect.

She will continue to be in our prayers!!!

:)

Hello~

Great news!

Glad things are going well.

Jack and I send lots of LOVE to you all,

Linda

This is good news.  I hope they have as pleasant a weekend as possible. This is exactly how it went for my daughter.  Soon it will all be over and seem like a dream.  That's how I feel sometimes.  Then I see the pictures. Kids are amazing though, aren't they??  :)

I think your sisters idea about the therapy is a good one. The therapist in the hospital taught me basic stretches to do with my daughter. We are still doing them everyday with her. Now a year and a half later she has grown to like them. We do them at night and it helps her relax before bed. I think she even looks forward to them. Also a year ago she could not move her right arm at all. Now she uses it very well. Therapy has helped my daughter a ton. Danielle

Hi  [smiley=hiya.gif]
I hope everyone is having a nice relaxing weekend.
Joad was released from the hospital yesterday Yay  :)

She is back at the hotel, I spoke to her briefly on the phone because I wasn’t sure if it was a good idea to let her use the mobile phone. Maybe I am paranoid, I do not know.

She is doing fine my sister said she is not complaining from any pain, Thank God. But they gave her some medicine in case she complains from any. She sounded very happy on the phone.

My sister was a little bit worried because Dr. Steinberg told her there is a 5 % chance she might have a stroke in the future. She is an accountant so numbers mean so much to her. But it is only 5 %, I tried to make her focus on the 95 %, I hope you guys say something positive to her.

She said the incision looks big and painful, you know mothers they worry so much (I bet most of you know what I am talking about).  My sister is already worried about her going to school, I mean school will start in 6 weeks. I hope people who had a similar experience tell us what did they do? Did they let their kids back to school immediately? Did they go back part time? My sister worried too much but any advice will be great.  :question

It was quite difficult for Joad to play with the other kids because of the language barrier.

My brother in law was downloading some of her pictures on the computer, she looked at the picture and said ‘who is this?’ she did not recognised her face because it was so swollen plus she is not allowed to wear her glasses and she can’t see much without them, Bless. :)

Danielle what you said is really encouraging thank you, did you have to do any type of speech therapy? Joad refuses to use her right hand to eat or write. I sent your post to my sister I am sure this will left her spirit.

Thank you all

Entesar~

Sending love to you all.

Getting more blood flow is INCREDIBLE.
I wish the best for Tuesdays surgery.

I suspect that as time goes by the need for various therapies will be evident. The use of her hand/arm also might change. And getting back to school will also depend on how she's doing. I suspect that some of the parents on this board will relate 'going back to school' experiences. It's really too soon to say what she'll be capable of doing, but there will be more blood flow and that is so wonderful.

Jack and I send LOVE

Linda

If school starts in six weeks she will feel so much better by then!  I bet your sister will be amazed at her progress by the time school starts.  My daughter's second surgery was June 8 and she went to summer school starting on June 22!  Granted it was only half day and she couldn't really do anything at recess, but she LOVED being with the other kids even doing math and reading.  We didn't do much after school the first couple of weeks, but now she's acting very much like her normal self. I still limit  her activities somewhat - like no sliding, monkey bars or anything that might cause her to hit her head though.

Good luck!

Hi Entesar

One down, one to go. It sounds like Joad is recovering perfectly.

Your sister can definately learn some physio excersises and apply them herself when they get back to Kuwait. Are there no physio's in Kuwait?

As for the school, take it easy. Joad still has another surgery and six weeks of recovery to go before your sister needs to make that decision. In the meantime she can start drawing up an action plan to give the school. Something that gives a brief, understandable explanation of moyamoya, and, more importantly, what to do if Joad has an episode like a TIA or a stroke.

Tracie (disneygirl) and Kim (Ktiller) have both recently spoken about post-surgery tiredness. Don't underestimate the impact of brain surgery. Kids tend to bounce back from these things much quicker, but don't rush her.

I continue to keep Joad in my thoughts, especially tomorrow.

Mark (Luca's Dad)

Hi all  [smiley=hiya.gif]
Thank you for your input.
I have noticed from what I read in the board that adults have hard time getting back to their normal lives compared to kids.

My sister is very pleased with the surgery results, she told me Joad complained from pain two days after the surgery it was on and off pain and thats it. She is doing great  :)

She noticed that she is doing a lot better than before, she is more awake it is really amazing  :)

The staff at the hospital are doing all they can to provide a physiotherapist for Joad so she can start and my sister can learn as well. She is just worried about the speech therapy as we have limited resources in Kuwait.

Lmom how much time does your daughter put into summer school? My sister is a bit nervous about Joad going to school, she thinks other kids might pick on her or something because of the scars.

Joad went sightseeing on the weekend and learned a lot in the discovery museum.

As Mark said ‘one down and one to go’, Today at about 7.45 (Pacific Time) Joad is scheduled for her second surgery. Please keep that in your minds and pray for my little niece.

Has anyone heard from joshandmom9770? Just wondering if everything was sorted for Joash. :question

Thank you all and have a good day
[smiley=dankk2.gif]

HI Summer school was 9:00-noon, then I would pick her up and take her to work with me for the afternoons.  (summer school just ended last week).  I had her wear a hat for being outside, but we had her hair cut so that most of the scars were covered so no one really made fun of her.

Yes... you've just reminded me about the jump in energy levels. Luca was also very noticeably energised right after surgery. I remember remarking on it to Dr Mendelow and he said it's a good sign that the direct bypass is working because Luca is getting more oxygenated blood to the brain.

Awaiting positive news about todays surgery

Mark (Luca's Dad)

Hiiiiiiiii  :)
Just got off the phone with my sister

Dr. Steinberg told my sister that the surgery went very well and Joad should be out any minute.

Yay, she finished her second surgery.

Thank you for your prayers and support
When I know more I will write more
Love you all

Fantastic news, Entesar!  I'm sorry to not have been more active in communicating, but I've followed your updates closely.  What a trouper Joad has been - I'm so proud of her, not to mention very happy for her parents, who have probably dissolved into tears of relief about now!  It must be hard for you to be so far away, but thank goodness for technology, right?  

Big hugs and many continued prayers and well wishes,
Jill

That is wonderful news!!!  :)  I'm so glad everything went really well.  -Audrey

Hiiii

My sister told me she was in a very good mood prior the surgery. She was giving everyone at the hospital a hug. She remembered them all and how nice they were to her.

Sorry I do not have much to say, Joad is in the ICU and phones are not allowed.

She is doing well, she is a bit upset because she is hungry. She did not eat anything for almost 24 hours now.

Dr. Steinberg paid her a visit last night, she was awake and she said few things. I guess she will be out of bed today to do some walking and therapy.

Guess who also visited her????

Linda and Jack (LA)  :)

My sister is over the moon, she is so happy about your wonderful surprised visit. You really made her and Mohammad happy. Thanks for the support and sorry if Joad was a bit cranky.
You guys are amazing.

Thank you all for your support.

Love you and will be back to write some more (very busy day at work)
:)

P.S. No need to apologise Jill  :)

Great. I'm really happy for you all. Well done to Joad, Dr Steinberg and Dr Khan again.

Joad's perfectly entitled to feel grumpy.

It's celibratory drinks tonight......

Mark (Luca's Dad)

Great!! it's wonderful to read these news ... anybody knows something about Aneta? Her daughter Nicole was going to be operated by Dr. Smith more than a week ago …

All the best,

Paula

Hi all,
Joad is doing Great  :)

She was able to walk, talk and eat last night. She was driving her mum crazy because she was so hungry and was asking for food all the time.

My sister said she is feeling well. She had 4 IVs, 3 in her right arm and 1 in her left. They removed the ones in her right arm and today at some point they will do the same to the last one. She was complaining about that too. I guess she got that from me  :)

She had an MRI scan the following morning, not sure why??? Actually I am a little confused by that. Because the Dr. Told my sister she should have had one after the first surgery and another one after her second one but then someone told me she should have it next week (a week after surgery 2) not the following day. Does it make any difference? Did others have done at different times?
When is the right time to do it?  :question

She will be out of the ICU today and discharged tomorrow.

Also, she will be starting some physiotherapy and speech therapy soon, my sister will have to learn all these things as well.

Teresa stopped by yesterday and had a brief conversation with my sister, she said she will have to tell them what to expect and how to deal with Joad’s moyamoya in the long term.

Thank you for all the support and I hope I get to hear more about your post-surgery experiences.

My sister was happy to meet Linda and Jack and to hear about it in person.  She was extremely happy when she couldn’t find Linda’s scar from the surgeries.

Thanks you and love you all  :)

Hey , havent been on much but i am happy to see all is going well with your niece , we still do not have a surgery date and i am getting a lil upset , the waiting is horrible, we are going away tomorrow for a week of camping we did get the all clear from the doc , so i am praying when we return next weekend they finally have a date for us , Josh has been feeling great no headaches at all which is a change since he started on the aspirin therapy , he doesnt have as much energy as normal but the doc said while we are away if he is tired to take a nap and mama bear has told him if he dont like the nap thing we come home , just dont want him to over do it but this holiday is much needed , since we have found out that he has mm it has been a whirl wind of tests and scans and drs ......the good thing is he is lucky to not have had any signs of a stroke and the head aches have decreased just the waiting of the surgery day is bothering both of us , i will message when i return and saying a prayer for your niece , take care ...Michele and Josh

Hi all,
I hope you all doing great, I must say when I logged in I was happy to share some good news about Joad but now I am so broken hearted  to read that Heather’s daughter Emily has passed away 5 days ago  :(
My condolences to you and your family, I hope we can be of any sort of support to you during this time.
Joad is still in CA but she said goodbye to the amazing team at Stanford for being so kind and nice to here. She saw Dr. Steinberg and Dr. Khan for the last time and they were happy to tell her parents she is ready to go back to Kuwait. She should continue physical therapy in Kuwait and do some exercises at home at least 3 times a day. My sister learned a lot from the therapist, and she will be continuing therapy at home in Kuwait.
She had one speech therapy session but the therapist wasn’t sure if it was going to do any difference because English isn’t her mother tongue. So no more speech therapy in CA just one more physical therapy session and she will be coming home
Teresa told my sister to be careful for a month after the surgeries, no stress of any source. After the month she can go back to her normal life before all the strokes and the mess.
She has a follow up visit in June 2010 to do some tests at Stanford, just routine tests.
She is doing great, my sister noticed immediate change in her behaviour. She is more active and has more energy.
Thank you so much for all the support
Take care,
Entesar
:)

What great news Joad did great with both surgeries. Now the road to recovery. She will do just fine. She is so strong. She sounds just wonderful to be around. I have been so busy I did not have time to respond before about the speech therapy. Adriana just had a speech evaluation last week. We are going to start having speech once a week. They are even going to work on some feeding with Adriana. Joad is older than my daughter so her speech therapy could be totally different. I can't wait to hear more about Joads future. Are you feeling better now that the surgeries are done? Danielle

Hiya,
Joad is ready to go home; she will be leaving the United States Tomorrow.
Just want to thank you all for being so wonderful and supportive  :)

My sister makes sure Joad does all the exercises the therapist recommended but Joad is not happy about it, I guess it is difficult to make her use her right hand since she has been ignoring it for 8 months.
I have a question and I hope all of you contribute, it helps a lot to hear different opinions from different cases.

Joad will have here first follow up visit in June 2010. Does anyone know how often will she have these follow up visits? Is it once a year? Or is it just this one visit?
Is she going to have all these tests (MRI, angiogram ...) regularly?
My sister told me there is a 12 year old boy who had some complications during his MM surgery and he is in the ICU now, I hope you all can pray for him to get better.
Danielle, How old is Adriana?

Thank you all

Adriana is only 2 years old. She also has right sided weakness. She always let me stretch her and work with her until about 2 weeks ago now she is fighting all of use when we do therapy. We are trying new and fun things during therapy. This week they had us take a break from therapy because of her behavior lately. It was the first week I have not one appointment since her surgery a year and a half ago. From what I understand most kids no matter the age have trouble with therapy. It is hard work for them. I wish I had more advise. Will Joad have therapists in Kwait? If so I'm sure they will know how to motivate her. So glad Joad is going home. She will rest much better there. Danielle