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Mom's Cafe

A group for Mom's who like to vent and talk about life with DMD kids

Website: http://health.groups.yahoo.com/group/MomsCafe/
Members: 124
Latest Activity: May 31, 2016

WELCOME!

WELCOME!!! If you are a mom with a DMD/BMD kid (of all ages), you are more than welcome to join us and enjoy the fellowship, the friendship, the love, the support that each mom deserves.

Discussions

Facebook Parents of DMD Support Group

Started by Jessica Argueta Tucker Mar 14, 2012. 0 Replies

Our other children

Started by Geraldine Coolidge. Last reply by Grace Marks Mar 7, 2012. 4 Replies

Muscle Clinic

Started by Geraldine Coolidge. Last reply by Trinh Nguyen Feb 20, 2012. 4 Replies

Comment Wall

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Comment by Andrea Cleary on April 4, 2016 at 7:58am

I'll send you a private message Jessica.

Comment by Jessica Stevens on April 3, 2016 at 10:50pm

Andrea, I can't get that Facebook link to work can you re-post it, thanks!

Comment by Jessica Stevens on April 3, 2016 at 10:49pm

Thank you Andrea, we were planning on building before we found out about Jacob, and we still are but now I am going to change the house plans that we have, he will need a bigger bathroom among other things. Thank you for your feedback. 

Comment by Andrea Cleary on April 3, 2016 at 6:04pm

I don't know about building from scratch. My son is still ambulatory, we moved to a split-level and had a platform lift (elevator) installed. Roll-in shower for sure, with lots of open room for a helper or two in the bathroom. I'd consult an occupational therapist for suggestions, as well as accessible plans. I personally would not bother with adapting the kitchen. A ranch style house with absolutely no stairs would be ideal. We also had wider doors/halls made and extra electric outlets, as Carol said. We had outside steps/curbs replaces with a ramp made of pavers, so it doesn't even look like a "ramp", and can be used as extra parking too. 

You can join this Facebook page: https://www.facebook.com/groups/525393987484929/   to ask others their opinions. Good luck :)

Comment by Carol Keskeny on April 2, 2016 at 1:42am

PS to Jessica, build a roll in shower now, things will be so much easier in the future for you.  

Comment by Carol Keskeny on April 2, 2016 at 1:41am

Dear Jessica, I built a house for my son too and am so thankful I did.  I would do the wider doors, ramps, I even put in extra outlets in his bedroom for various medical equipment.  My email is ckeskeny@gmail.com if you want more information. As you build look at accessible floor plans so you can add as you need too.  There are so many more advancements in finding a cure you may not need everything I did.  but I'm very thankful I have it all.  I even installed an intercom system.  If you can have his bedroom on the main floor you may like that better in the future.  Take care, Carol

Comment by Jessica Stevens on April 1, 2016 at 5:31pm

Thank you Carol & Andrea. I have a few questions for you parents, we were planning on building a house for the past couple months, and the doctors said there was a possibility that my Jacob had Duchenne, so I had my in my plans 3' foot doors for wheel chair access. I really didn't do much else to the plan. We still plan on building this summer, what should I have added into my house plan for Jacob in the future, he is 4.5 now. Do they prefer bath and/or showers, lift for the stairs, ramps? I really don't know what I will need. Thank you! 

Comment by Carol Keskeny on March 31, 2016 at 6:58pm

Yes, Jessica, the news is devastating and it takes a long time to adjust.  Just know we are a community that will always be here for you.  My son is now 29 years old, they said he would die by 15, but that is not true.  He is an angel and I have learned so very much being his mom.  There are days I am totally exhausted but that's true with all kids.  Hang in there and always know we are here for you too.  Take care of yourself.  Carol

Comment by Andrea Cleary on March 31, 2016 at 3:08pm

Hi Jessica Stevens, We are able to keep going because it is our kids who are amazing. It's tough because you just found out. Have patience for yourself, and some time to catch your breath. It's not an easy road to travel, but we are on it together.

 

Comment by Jessica Stevens on March 30, 2016 at 11:59pm

I just found out this week that my 4.5 year old son has DMD, I am really having a hard time, all of you parents are amazing, how do you keep going? 

 

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