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.

Hey Entesar

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

Mark (Luca's Dad)

Hi all 
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.   

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)

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  

Hi Entesar,

Joad is in our prayers. She will be fine.

All the best for your family,

Paula

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 all 
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 

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!

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

Hi all 
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.   

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.

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

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