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Raising a 13Yr old daughter with Muscular Dystrophy

Posted by on Feb. 8, 2012 at 11:20 AM
  • 13 Replies

Hi Everyone,

I am new to this website and wanted to share our story.  My daughter was born with a rare form of Musculary Dystrophy which did not present itself until she was about 11 months old, when we realized that she was not able to pull up to standing.  We did not receive a complete diagnosis until many years later, but immediately started her with OT and PT, visits to the neurologist, orthopedist, etc. 

She is a very smart, articulate, funny and sarcastic young lady and the center of my world!  She got her first power wheelchair when she was 3.  Got a g-tube when she was 5 to supplement what she ate daily by mouth.  When she was 8 1/2, she was hospitalized with respiratory failure and had a tracheostomy tube placed, which, used together with a ventilator, enables her to breath normally. 

Through it all, our family has vowed to raise her (and her 7 yr old "normal" brother) in as normal an environment as possible.  She attends public school and has developed great relationships with a few good friends - 7th grade can be a real challenge! 

When she got her trach, it changed all of our lives.  Lots of medical equipment in our home, along with 20 hours per day of nursing!  Because of her ventilator and the necessity for moderate suctioning of her trach, she requries a day nurse to accompany her to school and a night nurse to stay in her room to monitor her while she sleeps.  This leaves us just 4 hours per day (from 6pm-10pm) where we can truly be a family without any "strangers" in our house.  My husband and I have also been trained to do everything for her, so in addition to me being a working Mom, you can add "Registered Nurse" to my title. 

Because Muscular Dystrophy is a degenerative disease, we are unsure of the future.  I do pray that with detailed medical care and a great outlook, her quality of life continues for many many years. 

Hope this finds you all well and please comment or ask any questions - if I can help someone going through something similar, I would certainly jump at the chance.

 

by on Feb. 8, 2012 at 11:20 AM
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Replies (1-10):
mandee1503
by Amanda on Feb. 8, 2012 at 11:23 AM

Welcome to the group. Sounds like you have had a long hard journey.

dawncs
by Dawn on Feb. 8, 2012 at 12:25 PM

Welcome to the group! You can find great conversations and support when you need it most in your life.

Dawn
Beautifully Talanted Autistic Social Story Author
Diagnosed Asperger Syndrome as an adult
Diagnosed Edema (since young)
Author Page: http://www.toyboxunlimited.com/ (has discounts)

lifeisajoy
by on Feb. 8, 2012 at 1:29 PM

Welcome!! So glad you are here--we have lots of health care in and out of our house-I am very grateful for the health care but I do like just the family time also--my son is 18 and has CP and is 24/7 care  --Great to get to know you--

Elyssa414
by Elyssa on Feb. 8, 2012 at 1:33 PM
Welcome to the group! Sounds like quite a ride you've been on! Is your daughter able to speak at all or does she use sign or a talking maching because of the trach?
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darbyakeep45
by Darby on Feb. 8, 2012 at 4:43 PM

Welcome to the group mama!  My cousin had MD, so I'm slightly familiar with it, but he didn't have a trach or a feeding tube.  He was able to talk, breathe on his own, eat, etc.  Sounds like you have a strong daughter!  I bet you're one proud mama!

CameronsMommy23
by on Feb. 8, 2012 at 5:55 PM
Welcome, we're happy to have you here!! Thank you for sharing her story as well!
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sayres
by on Feb. 8, 2012 at 6:03 PM
Welcome to the group!
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letstalk747
by Ruby Member on Feb. 8, 2012 at 6:04 PM

 welcome , glad you are here  ,

does she have a good aide in school ?

i.heart.myboys
by on Feb. 8, 2012 at 7:39 PM
Welcome to the group and glad you are here.
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sammygrl77
by on Feb. 9, 2012 at 10:02 AM

Welcome to the group!

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