Mom's Cafe

Comment

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

 

Comment by vilma rodriguez on July 24, 2011 at 3:52pm

Angie: Those are very wise words because we need to understand everyone deals differently with DMD. Sometimes people are scared to what tomorrow will bring, but your boy is going to be your best encouragement because their inner strength will carry you thru. Enjoy the precious moments to the fullest and do not loose hope. Put God first and He will carry you thru.

Comment by Angie Doub on July 14, 2011 at 7:57am

We have been living with DMD 16 years now.  When we found out that Austin had DMD it was horrible.  My husband could not deal with it.  All I wanted to do was know everything I could about DMD.  My husband on the other hand wanted to know nothing about it.  I turned to family and friends and of course my church family.  It took my husband several years to come to terms with this monster of a diease.  It takes men a little longer to deal with things.  Remember we are made of steele (moms).  Men can not handle things like we can.  Yes, we hurt very deeply.  These are our sons!  Dads cant deal with the pain after all this is their son as well.  They want them to be strong, ball players, race car drivers, and all the things they think a boy should be.  We want that as well but we know how to accept our sons just the way they are.  My son has played baseball, raced his wheelchair, and is very, very, very strong (it may not be physical strenth) but he is the strongest person I know.  My husband is a good dad to Austin and our daughter Casie.  We have been together 23 years now (yes there have been ups and downs) I am so thankful that I gave him time to deal with this monster because I think that Austin would have missed out not having dad around all the time.  Give the men in your life a little time to deal with things and maybe things will work out.  I know from alot of my friends living with DMD that sometimes it is best to just walk away (and sometimes that is all we can do) but please give everyone in your life time to deal.  We all do it differently and at different paces.  I know that I have said alot but I hope it will help one of you out there.  Love your sons with all your heart and soul because life is very short for all of us.

• ‹ Previous
• 1
• 2
• 3
• …
• 13
• Next ›
• Page