Wednesday, May 13, 2009

+1015 - A Positive Blog Post (kind of)

David came home on Monday. He's been doing well. He is very happy to be home.

Please pray for his skin condition. He is loosing the top layer of skin on his hands and feet. His skin is also itchy all over his body. He likes to keep his hands and feet wrapped because the peeling hurts.

We were told the skin peeling might be the after-effects of a staph infection, but that was never officially determined. We were also told it could be the GVHD. He has never had hand or feet involvement, so we just ask you to please pray that this is not the beginning of GVHD because he could very well loose the use of his hands.

Thank you for hanging in there with us.


helenandniall said...

Hi Aimee
I am glad to here David is home and I hope his skin improves soon. I had a patient at work recently who had an infection of undetermined cause that caused peeling of skin on the hands and feet(particulaly the toes)he got better and hasn't looked back and the doctors are unsure what caused it, hopefully it will be the same for David and we keep you all in our prayers.
I was disappointed to read about the negative blog comment. I have to say Aimee you and your blog have provided me with so much information, you have introduced me to others who have provided me with a wealth of information on WAS and I would have been lost without your help so thank you so much!!
I will say this, people do not understand WAS or its seriousness. They do not realise the difficulty that WAS imposes on normal family life. The simple everday family activities, normal childhood activities are all restricted, we have to think about trips to the playground, cycling a bike, going to school or daycare so carefully. We are constantly worrying about bumps, falls, bleeds and infections. My sister told me yesterday I am obsessed with WAS and I thought she understood my worries and anxieties.I am obsessed with keeping my son safe and that will continue no matter what.I will work hard for there to be some sort of normality in our family activities.
So Aimee keep up the good work you are an inspiration to all us WAS moms!
Best wishes
Helen M

Amy Schroeder said...

Negative? How about truthful as another word for it. Having a sick child is a drag and emotionally draining. You have been doing a great job trying to remember to enjoy the little things even though there is a giant, pink elephant in the room that just is a pain. OK, you get my point. If you need your blog to vent about frustration, use it that way.


Amy Schroeder said...

p.s. So glad that David is at home. SO sorry that his skin is pealing and causing him pain.

Unknown said...

Just a brief note, Aimee...

I follow your blog to keep up with the latest information about David.

I wanted you to know what an inspiration you have been and continue to be to so many, and that you and David are not alone in this journey.

We continue in prayer asking that God's mercy envelop David, you, and the family, bringing peace from such an exceptional trial.

Thank you for your example, Aimee, shown strong in times of this difficulty.

In our prayers always,


Joanne Klein said...

Hi Aimee
I am glad David is home. I hope that his skin conditions get better. I read your blog all the time because as you can imagine I do understand. I've met my share of people like the one you refer to in your previous entry. Hang in there. Those of us that have been there agree with you and know exactly how you feel. The important thing is not to worry about what others say or think that may be hurtful. The important thing is that you do your best (and I think you are doing that, you are one amazing mom).
mom of Baden