Pat Furlong wrote a wonderful blog posting of which I whole-heartily agree! http://community.parentprojectmd.org/profiles/blogs/words-mean-something DMD/BMD may break our hearts and make us feel like we are suffering, but our sons do not have to be labeled as dying or suffering - none of us are promised tomorrow anyway! So how do we treat our sons, talk to our sons, talk to family and friends, or even strangers who may notice or ask questions. What would I say? How would I react?
Added by Liisa Underwood on April 27, 2009 at 7:25pm —
Christians co2 levels have begun to rise. We are anxiously awaiting his sleep study to see if he needs bipap or something at night.
Added by Danielle L Shoupe on April 27, 2009 at 6:34pm —
This morning on my blackberry I had two Google Alerts. Not that it is unusual for sure, but today, these alerts pushed all of my buttons simply because of the language. They used words like "sufferers of Duchenne muscular dystrophy" and “genetic killer of kids”. We have to stop saying this. Our sons are not 'sufferers', in fact, they smile and their smile radiates and touches everyone in range. They are not 'suffering' as in pain and suffering. And, for the most part, I don’t see them suffering… Continue
Added by Pat Furlong on April 27, 2009 at 4:34pm —
Excellent news in our ongoing battle that I have been following quite closely...
World Community Grid and researchers supported by Decrypthon, a partnership between AFM (French Muscular Dystrophy Association), CNRS (French National Center for Scientific Research) and IBM are investigating protein-protein interactions for 40,000 proteins whose structures are known, with particular focus on those proteins that play a role in neuromuscular diseases. The database of information produced… Continue
Added by Douglas Sanchez on April 27, 2009 at 11:30am —
1. Jon cooking dinner for me on the days I work in Buffalo.
2. Mike grocery shopping and make sure the fridge is always stocked so Jon can create his dishes.
3. Kat's funny stories are like a stand-up comedy routine that make me laugh out loud.
4. Kat and Jon hanging out and watching movies together when she is home from college.
5. Mike, Jon and I watching natures beauty like 65,000 bats going on their nightly feed.
6. Jon telling me being a human lab rat is not so… Continue
Added by Christine Piacentino on April 25, 2009 at 8:50am —
You know I love the use of steroids. But heads up they really weaken the bones. My son is 16 and up until tues night was still walking.He slipped in dog water and fractured his left hip. Went through a rather huge surgery on thur. And now is back home. We only wonder if he will be up and walking again. Just wondering if anyone has gone through this and what we can expect. Terri
Added by Terri Poh Pardun on April 21, 2009 at 4:19pm —
My son is almost 4 1/2 and is not talking. He has some words, but it is hard to understand him. He has speech therapy 3 times a week and all the Dr's say he will talk. Has any other DMD mom or dad experianced this? He understands almost everything. This is my first blog. I hope someone can help. Thank all of you......SINDY
Added by Sindy Boldizar on April 21, 2009 at 1:51pm —
Curtis passed into the care of our Lord on April 18th at 530 am with all his family present. He was at peace and comforted by his faith in God. There is no further need for mobility devices, breathing apparatus and no more challenges from his neuro-muscular disorder. His care staff and family took pride in being able to be there for him until the very last beat of his heart. He was so loved! and will never be forgotten- we are all better individuals having had Curtis in our lives for 32… Continue
Added by Robyn Hoffman on April 20, 2009 at 2:30pm —
so, it seems we, as a DMD family have reached another milestone. on our recent trip to cinci dr. cripe discovered that both boys have new heart issues, austin has scar tissue, and max has one enlarged ventricle ( i hope i have that right...) so they are both on ace inhibitors. that was no surprise really, i knew it was coming, i was aware of the drugs, but it still made my heart drop when i heard. during my meeting with dr. wong we discussed the other milestones of the year, it was so like… Continue
Added by jenn on April 20, 2009 at 9:00am —
Our 5th child weighing 8 pounds 7 ounces entered the world, in not the typical way. After 40 minutes of labor that came on without ANY warning, Wyatt was delivered on our dining room floor by local paramedics. His first 5 months went by so fast. Typical baby stuff sleeping, eating, you get the picture.
Then at a 5 month check up our doctor suggested we could to Children’s Seattle to find out why he wasn’t putting on weight. (At that point he was 12 pounds 7… Continue
Added by Wyatt's Mommy, Melissa on April 20, 2009 at 1:00am —
I don't know if it is me or just a fact that life is full of whiners. People, especially family members are so involved with their problems and issues and make the HUGE mistake of whining to me about it that I have to swallow my disgust and carry on with compassion. It is getting much worse to swallow probably because eventually most people go back to their normal and begin to whine again about their problems. The thing is I don't ever whine (except now on this board) since my son's diagnosis.… Continue
Added by MarcosDad on April 19, 2009 at 11:30pm —
As Parent Project Muscular Dystrophy turns 15 this month, we reflect on what the world knew of Duchenne when we started, and what is being done to end Duchenne today. And although we are extremely proud of and thankful for the advances that have been made in the Duchenne community over the past 15 years, we also recognize there is much more work still to be done.
It is also a time for us to think about the blessings in our lives. I think I can assume for all of us, that our family is… Continue
Added by Pat Furlong on April 16, 2009 at 5:08pm —
i hate when people treat my child like he is handicapped. well, technically he is, but thats not the only trait he has. im tired of people always assuming that duchenne md is all there is to him, or even worse, that because he doesn't walk, his eyes, ears and mind is also in some way compromised. im sick of people asking me "what does he want to eat?" i dont know ASK HIM. or some people do decide to talk directly to him, they raise their voice a few octives and decibles and slow it down as if… Continue
Added by jenn on April 7, 2009 at 9:25am —
I raise orchids but I am not a serious gardener, nor do I have a green thumb. Nothing of the sort. I am a rookie when it comes to gardening, maybe not even that. I raise orchids for one simple reason. I need to wake up and see flowers blooming. It makes the day start off right. And with orchids, if you play your cards right and have a few varieties, you will find something in bloom every day of the year. There is something special about seeing a flower the moment you open your eyes, even when… Continue
Added by Pat Furlong on April 6, 2009 at 11:56am —
Our second house in Maine was an old Victorian parsonage. Built in 1865 the place suffered from neglect, yet had many redeeming qualities. Alice loved the main staircase, this house had two. From the front entry the stairs curved around one wall to the second floor landing and framed with a handsome banister and railings. The back stairs were in the kitchen and were so steep they more resembled a bookshelf. Alice loved both, so we bought the house. Continue
At the time my hobby was house…
Added by Brian Denger on April 6, 2009 at 8:30am —
we had our first power chair evaluation for austin today. can i just say YUCK! it is such a daunting task, we tried the new permobil, that tilts and raises and lowers to the floor, great features but we cant navigate it throught the house without smashing into corners. the other chair was mid wheel drive, and had trouble getting around the vermont landscape. the PT was working hard, but austin was frustrated trying to learn the joystick, its so different from the scooter controls, and was i was… Continue
Added by jenn on April 1, 2009 at 9:21am —