We also go to Seattle children's. I have been a mess since we found out that my son has DMD. He just turned a year old on the 9th. Did your son have a hard time sitting up? My boy is still not able to on his own. Hopefully PT can help with that.
I don't believe we have met yet, hopefully soon. My 4 year old son Gavin also has DMD. I have been talking with Char about the Comic Relief for DMD benefit. Anyway, I have done the A-team events with Kohls in the past for PPMD. I called the Kohl's in Redmond and spoke with Teresa, she told me they could help us. I emailed her some of the information about the event, but haven't heard anything since. I can call and follow-up and make sure we are on the calendar. My situation is I have 3 small kids at home and my baby is only 7 months old. I don't think this year is great for me to be a contact because I've got so much going on with the 3 of them. What an A-team event is that Kohl's automatically will give the 5013 (c) $500 and will send up to 5 of their employees to help with the fundraiser. They cannot sell anything, but they can seat people, run around, well anything that would help you with the event. They are volunteers, but they are so willing to help. I haven't personally met Theresa, I've only done an A-team event here in Covington where I live. Also, my friend Melissa did an A-team event with the Snohomish Kohl's. Anyway, I am willing to call and talk with them again to make sure everything is a go. What do you think about a contact, I want to help, but I don't really know all the details or what you have planned for the event or how they can help. Do you want to be the contact and speak with them? Her email is teresa.scott@kohl's.com. I did email her PPMD's non-profit form. Let me know. Tonya Carlone :-)
Thank you so much for caring. We took Gustin in to see the Dr. again last month. It was a very difficult day!!!! At first the Dr's thought was to immediately put in the feeding tube. However it would take IVs in intensive care for a few days to start getting some nutrition in to him and then follow up with the feeding tube.After he went to talk with the other dr's about it they all agreed that it would be a huge risk, even to puncture the skin to do the feeding tube is very risky. Gustin has always been involved in the decisions we have needed to make for the last few years. He absolutely did not want to do it. He didn't have it done and the dr thinks that Gustin's decision was the best one. The same kick in the stomach I got when we heard his diagnosis at age 5 I got again when we were told this news. It has been very hard on our family.When he was 5, 18 seemed like a long ways away, it's so hard to imagine 13 years have passed. He's happy and enjoying playing xbox online with his friends and quality time with all of us. Quality of life is so very, very important. Quality over quantity! Thanks again for asking! I'm so happy for you and your son for doing what makes him happy!!Congratulations to him!!!
Thank you for your message, and for starting this WA/OR group.
Seeing the pictures of your son graduating from UW (I think that's right- looks like my own cap and gown) is inspiring. It is overwhelming, but I am glad to be able to connect with some people that understand. Thank you!
Thank you for your concern! We are both doing well however he is still hanging around at that 80 lbs. He feels good but I still feel he should get the feeding tube. He is still against it. A sensitive issue with him just having to be different in one more way.
Nice to meet you Katherine. I really enjoyed your photos of the family and your son. Thank you for welcoming me, as I am very new to PPMD, although definetly not to DMD. God Bless and I look forward to staying connected with your family and many others!
When your son turned 18 and got on SSI was his FASA based on his income or yours? I don't check my PPMD site often so it is better for you to respond on my email..firstname.lastname@example.org.
Our son Jacob is 17 and heading into his Sr year and so we are getting geared up for college. He wants to go to a school 4-5 hr away. We have never had any "hired" help so setting it up appears to be a challange. Does your son live at home while he attends college? How has it gone and what have you set up for your son to make college a success?
hi katherine ,
havent been on this site for a while and was wondering how things are going the last time i had emailed your son was have an issue with bloating just wondering how things are going things are good here ttyl Diane