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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: 125
Latest Activity: Oct 23, 2017

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 Isabel Cubas on October 14, 2013 at 10:09pm

Hi to all of you!

I would like to know what kind of adjustable beds you recommend for young men with DMD. My son is 12 - he has been in his power chair for 4 years now. I am not looking necessarily for a hospital bed,  but it has to be an adjustable adult size bed with a good mattress. Any suggestions? Well appreciated. Thanks.

Comment by CHRISTINA RODRIGUEZ on February 6, 2013 at 1:01pm

Hello, I have a question about schooling after a surgery. My son, Bryan is going to have a spinal fussion surgery in a couple of weeks. Since he is not going to attend school for awhile, I talked to the school about sending a teacher to our house a couple times a week. The school wants to just email his homework once a week, instead. Can anyone please let me know their experiance with schooling after a surgery.   

Comment by Jessica Argueta Tucker on March 14, 2012 at 12:10pm

It has been just over a month since my baby boy was diagnosed with DMD. I can honestly already think of one good thing that has come from this so far...we are forced to live in the moment and treasure every single smile, wiggle, and hug from each other. 

Comment by Andrea Cleary on December 23, 2011 at 10:27am

Hi Sharon,

I'm undergoing shoulder pain treatments right now also. Did they tell you what's wrong, or have you not gotten that far yet? Did you have an ultrasound or other imaging to check that you don't have a torn tendon or ligament? Because that might require surgery to get better.

Tendonitis and pinched nerves doesn't need surgery, but is very painful. You need ice and rest now to get any inflammation down. Treat the pain, then physio.You don't want a painful, frozen shoulder that never works properly again.

My doctor gave me a shot of Lidocaine in 3 different places on my shoulder. It took 3 or 4 days before it took effect, but then it helped for 3 weeks or so, enough time to start physio without too much pain. I've had that twice now. For me it's a matter of avoiding strain and relearning good posture.

Your boys are still little, so you have to think ahead as they grow, you will not be able to lift them yourself, all the time. Think about getting a stair lift (chair on a rail that goes up along the stairs). Check with your occupational therapist for government funding. Let them know you have been hurt. We are supposed to be getting an elevator put in the house by February, but a chair lift might be a first step that could suit your needs for quite a few years. It might be hard to have 2 boys waiting for each other all the time to use it though.

In the mean time, and I don't know how well they are functioning, how about if you take them by the hand for support or in case they fall. Go slow, and support yourself too on the handrail. The idea of camping out downstairs sounds like a good temporary measure to give your shoulder some rest.

I wish you all the best in trying to find an answer to your situation and easing your pain, physical and emotional.

Try to notice and enjoy the little moments over the holidays with your family. Your photos are adorable.

Andrea from Montreal

Comment by Carol Keskeny on December 22, 2011 at 9:03pm

Sharon, I'm not sure if your boys need hospital beds yet or what their needs are right now, but when I felt sick and couldn't lift my son I tried to make believe things with him.  Like maybe make beds on the floor downstairs and play "camp-out". Anything to get you through so that your poor shoulder can heal, and still get them to sleep.  I'm so sorry you are having this pain, it's just too hard. Please remember to try to take care of yourself too, believe me, I know that's hard and much, much easier said than done.  I hope you feel better soon. 

Comment by Sharon Kippers on December 22, 2011 at 8:47pm

I don't mean to vent. I have injured my shoulder from picking up my boys. I canNot carry them up the stairs it hurts so bad. Where can I get help with this issue.

Comment by Sharon Kippers on December 15, 2011 at 5:03pm

Thanks Penny. It has been a rough year for our family. I have just gone through a week of appointments for my boys. It's hard to not think about it when every appointment  is regarding dmd this week. I am just glad that it is done.

Comment by Penny Hauer on December 11, 2011 at 10:46am
Sharon please live only for today one hour at a time maybe one minute at a time forget tommorow cause that way only today matters my son is 11 and sometimes I think oh no not another birthday getting closer then I do that I dont get to enjoy him and I do not want to miss a single minute with him. I think the holidays are just tough altogeter It early and Im miss spelling everthing so I will stop hope I helped alittle
Comment by Sharon Kippers on December 11, 2011 at 9:58am

Hello

It has been a while. I am finding the holiday season is a very emotional one. I have three wonderful children 2 that have dmd. Finding it hard to deal with the fact that both my boys have dmd.

Sharon

Comment by Annie on December 10, 2011 at 3:48am

Hi

Our son has just recently been dx with md - not duchenne awaiting further results form the biopsy but probably outliers/severe BMD.

So needed to find a site like this

 

 

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