I'm so sorry she's having complications.Many many prayers for both of you.I know how scary it can be,I wish I could say something to help you not to feel so alone.Hopefully you can feel our support and prayers.((((HUGS)))) to you both.Keep us posted...
Mary Grace

Hi Christie,

I'm sorry to hear about Amy's set back.  The good news is Stanford is on it. Amy is in the best possible place at the moment.  Stanford has isolated the problem and Dr. Steinberg will decide the next steps. The fact you are getting some response from Amy is, IMO, a positive sign.

I can relate to what you are going through and feeling at the moment.  My brother was in bad shape when I got him to Stanford. We are from Ohio and really didn't know anyone except Jill. Who was a great help and support to us. Also, our social worker, Michael was a great help as well.

My brother had gone 4 years misdiagnosed.  He had a hemorrhage while at the hospital and Stanford got on it so fast that I didn't know what had happened. Dr. Steinberg came immediately and it was snap, snap and I had never seen so many medical personnel moving so quickly and methodically. My brother  survived his set back and is doing very well today. One would be hard pressed to know that he had two strokes, a dissected right upper internal carotid artery and a hemorrhage. Today, he can speak, walk and talk and has regained his abstract thinking ability.

Everyone is different and may or may not experience a setback. Tthere can be many different factors depending on the individual's current condition and health status, age, and a number of other things. When my brother was in bad shape, I had to keep reminding myself that he had gone 4 years misdiagnosed and had suffered such trauma and that he was at Stanford for life saving treatment and if anyone could help him it would be Dr. Steinberg and Stanford. It helped me to keep things in perspective and to stay focused. Obviously, it had not been for Dr. Steinberg and Stanford, my brother would not be here today. My brother was fortunate to be treated by the best of the best and in the nick of time.

I hope this helps ease some of your anxiety. 

Like Mary Grace mentioned, you are not alone.  You have your MM family and we are here to support you and we are here for you.

Stay strong, keep the faith and keep us posted on Amy's progress.

You and Amy are in my thoughts and prayers.

Hugs,

Lore 

Oh I will def pray for her, I am sorry to hear this happened, But i will pray day and night until i hear she is doing good again

I am so sorry to hear about the set back Amy had.  I will pray for her and you.  My son is set for surgery at U of C in Chicago next week. 
I know you are in the best of hands from all I have read and experienced with Dr Stienberg ( he gave me a second opinion on my son) and they seemed to be so together.  Please keep us updated. God Bless you and Amy
Linda

  I'm so sorry...I will certainly keep you and your daughter in my prayers.My daughter had similar complications after her first surgery.She was in a very unstable condition when she had her first surgery because she had a small stroke the day before. 4 days after her first surgery she had a small stroke on the left side of her brain and a major stroke on the right side.She was like an infant and spent a month in a rehab hospitalTthe great news is they did the other surgery a week later and she's had no strokes ever since, it's been six years and she's been healthy and happy.She has also made an amazing recovery.She's walking talking reading and writing.YOu are in the best place you can be with your daughter and I'm sure she's getting the best care she can get.I'm just so sorry your alone and scared.If you would like someone to tlak with let me know and I can leave my # here.((((HUGS))))))
Mary Grace

Hi Christie,  you are in my prayers as well.

Hi Christie,

It appears Amy is making progress. Small steps, big strides. Her body needs to repair itself and it will take time. Remember, the body's first instinct is to survive.

I too have great hope that Amy will pull through this. Amy has a lot of positives on her side in that she is at the best possible place, with the best possible care, and she is young. I also believe she is a fighter. I also believe she knows something has happened to her but simply may not be able to respond as well as you would hope at the moment.

Although my brother could not speak, and couldn't tell me anything, and in fact, at one point, didn't even know who I was, I felt he could hear me and I felt certain he knew something occured but didn't know what it was. He told me later, after he reagined his speech, that he knew he wasn't right and he remembers hearing Dr. Steinberg tellling him he was there and he was going to do CT scans and he was there to help him and to basically work with him.  That is all he remembers but I think it was the one thing that kept him fighting to recover because he knew Dr. Steinberg was right there with him and that made him comfortable and then he doesn't remember anything else as he became unresponsive. In retrospect, to me, the shut down is the body placing itself in a healing mode.

I have to tell you that the entire MM Stanford team of doctors and nurses worked tirelessly to get my brother to the point I could fly him home and they did an excellent job. To this day, I am in awe of their compassion and their abilities when it comes to MM and the ups and downs. Medicine is not an exact science and therefore, not a perfect science.  For Stanford to have the success rate they do, is unheard of in medicine much less dealing with a rare disease like MM.

My brother soon learned to communicate by pointing and using a lot of hand language. It got to the point, I joked about my perfection at playing the game Charades. Like I mentioned earlier, he regained his speech with therapy. It was actually faster than I had expected or even imagined. but again, everyone is different. My brother was determined to survive and not let MM rule his life. He is much older than Amy as he was in his forties at the time. The point I'm trying to make is to be patient and let Amy heal and take it from there and remember, your MM family is here to support you through this. 

I know how rough this journey can be, and the many possible ups and downs, and it is easier said than done, but hang in there. Any improvement, no matter how small, is progress.

Stay positive and keep the faith and please keep us posted on Amy's progress.

Hugs,

Lore