We came to Ronald McDonald's house yesterday.  I don't think we are having the second surgery for a few months, we'll know more on Wed after her post-op appointment.  She is doing well, but she says when she walks she hears noises in her forehead.  It's hard for her to explain because she has down syndrome.  I will ask Dr Steinberg about it on Wed.  Has anyone else experienced this?  She really hasn't had mush pain, only in the morning when she wakes up.  Tylenol seems to take care of it though.  I really wasn't as bad as I expected, bad enough though.

Margaret

Hi Margaret,

Glad to hear Annamarie is out of the hospital and having little pain. That's good news.

I can't explain the noise in the forehead that Annamarie refers to but maybe it's the blood flow or maybe it is more of a thumping that she hears and refers to it as a noise.  I don't know but maybe Mary Grace can help since her daughter Kathleen also has down syndrome.

Sounds like Annamarie is doing well for just having major surgery. The MM children seem to fare better than most adults with this surgery and I hope that holds true for Annamarie and that she continues to progress smoothly.

Keep us posted on Annamarie after you see Dr. Steinberg on Wednesday.

Hang in there.

Hugs,

Lore  

Margaret, I'm so glad to hear that the surgery went well.I wish I could help you with the "noise" your daughter is hearing......My daughter ahs Down syndrome also and I think the hardest thing throughout all this is not knowing if she's communicating everything she should to me. The fact that she's telling you something is different even if she may not know exactly how to word it is good though and at least you can let the Dr. 's know soemthing is different for her.They may be able to help her to verbalise it better by asking her some questions.I realy count on hearing about other individuals experiences from this site so much.Kathleen never has and still doesn't complain,even if she's crying like she's in pain I'll ask her what's wrong and she jsut say's "I'm fine".She has some good days and some not so good ones, but it seems her energy level is what effects this most.One thing I do know is she' gets exhausted very easily.Since 6 years ago after her wose stroke she was like an infant I'de say she's done miraculously well since ehr surgeries.She's walking talking and doing great in a reg. classroom with a 1-1 teaching assistant.Please keep us posted after your appointment.Continued prayers for a speedy recovery.
Mary Grace

Hi,

Annamarie is now home and returning to school tomorrow, just two weeks post surgery.  She has no restrictions and is doing wonderfully.  Thank God for Dr Steinberg and the MM Team at Stanford.  We will need to return in 6 months for follow-up and she does have to have the other side done, but for now we are just watching.  She only has a 50% loss of blood flow on the left side so we know we have to do that side but we don't know when.  We're just thankful for what we have.  The noise in her head was the blood flow that she was hearing.  I'm told that is common, weird though.  Thanks for all the prayers, I know they helped.

All my love,
Margaret

Margaret That's wonderful news!! I'm so glad that everything went so well and she's bak to school already.Thanks for keeping us updated.
Mary Grace