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June 2009 Blog Posts (9)

Starting a Blog...What is Duchenne Muscular Dystrophy?



Hi...My name is Heather

I never thought I would start a blog (I am just not the type). I have always enjoyed my privacy. I have had quite a normal life, mostly followed the rules (except for a few wild times in school), finished college (Go Longhorns!), have great friends and family, married the man of my dreams (well..no one said my dream was perfect...just kidding), and moved to the Houston suburbs. Before I got pregnant, I had genetic… Continue

Added by Heather Meermann on June 30, 2009 at 5:30pm — 1 Comment

tough transitions...

austin said to me today" now im knowing what it's really like to not be able to walk anymore..." i am so heart broken when he says things like this. its true, today for some reason he hasn't been able to move very well. he's 10.5 and i knew he wouldn't be walking much longer, but somehow im still not ready yet. his power chair wont be here until august at the soonest, we don't have a lift on our van yet. we just finished handicap additions to the house, and the driveway still isn't level enough… Continue

Added by jenn on June 26, 2009 at 4:50pm — 4 Comments

MDA Camp

Damien my son went to his first MDA camp and he had a blast. He made best friends and everything. He loved it so much that he seems much happier.

Added by Amanda Trosper on June 16, 2009 at 9:47pm — 3 Comments

No more sleep studies in Wales

I am so angry!!

I met with the Welsh health minister Edwina Hart last year regarding the inadequate service provide to patients with Neuromuscular disease particulary Duchenne Muscular Dystrophy. At the time we were on a waiting list for a sleep study and had a delay of 18 months. She said that funding would be secured for an appropriately commissioned comprehensive sleep study. It's one year on and now I have found out that when our respiratory consultant leaves next month there will be… Continue

Added by Lynne Taylor on June 15, 2009 at 6:19pm — No Comments

Be prepared

I was a Boy Scout for a short time. I enjoyed the crafts, earning badges

and being with friends. I even liked camping, that is until a January

weekend in Maine where I nearly froze because of inadequate gear and

below zero temperatures led me to "reconsider my participation". The one

thing Scouting emphasized and is still part of the motto is "be

prepared".



In parenting and bringing up our sons, Alice and I have taken this same

approach. This philosophy… Continue

Added by Brian Denger on June 12, 2009 at 8:13pm — 2 Comments

June 2009 Update

6-11-2009

Bradley just completed his 6 month follow up appointments at Cincinnati Children's Hospital today. We saw Dr. Rybalsky instead of Dr. Wong in the Neuromuscular clinic.  There are so many DMD patients coming to Dr. Wong that she cannot see them all everytime. 



We spent most of today in Neurology. We talked about Bradley's heel cord contractures, and contractures in his fingers/wrists (digital flexors). We discussed doing serial casting again but the Physical…

Continue

Added by Lisa Jones on June 11, 2009 at 10:00am — No Comments

WHEN I GROW UP..............

I titled this post after a very negative employee's words at work. An employee of mine just found out we are doing a Make A Wish trip next week. Well, I thought I had told her. She was quite nuts about the entire thing, starting off by saying that she thought it was for very, very sick kids. I was ticked off at that point. I told her, well, it is for kids with many situations, of which DMD is still a fatal illness and technically, they like to work with kids who aren't in constant nursing or… Continue

Added by Kelvinsmom - Michelle on June 9, 2009 at 9:08pm — 10 Comments

Our Trip To Cincinnati

May 26th, 2009.



We were at the hosptial for a long time (noon to about 530)



We had appts with a nutritionalist, a physical therapist and the neurologist, Dr, Wong.



Got some general information about nutrition and some PT he can start now. The PT lady was more concerned about him getting PT for his walking delay, not for the issues associated with DMD. She said his motion is great, so the DMD not a factor yet. Great news. She said we should get him… Continue

Added by Wyatt's Mommy, Melissa on June 2, 2009 at 8:16pm — 2 Comments

Kidney Stones - Round 2

Yesterday Jonathan had his remaining kidney stones 'blasted' by lithotripsy. It was successful, the Dr. said the stone was 'blasted' to dust. He is having no trouble so far passing the broken up stone. We go for another x-ray and to see the urologist in 2 weeks. If everything is clear they will make the arrangements to remove the stent in his right ureter. I hope they can figure out what caused him to form these stones so we can prevent having to go through this again. Two of his seizure meds… Continue

Added by Susan Rathfelder on June 2, 2009 at 7:30pm — No Comments

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