Hi all 
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.

Hello~

Great news!

Glad things are going well.

Jack and I send lots of LOVE to you all,

Linda

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

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

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 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.

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

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

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)

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? 

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 

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

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