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April Mischke Female Bigfork, Mt. United States: Favorite

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Early Years (diagnois-ag…

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Shoes

Started this discussion. Last reply by April Mischke Feb 7, 2012. 2 Replies 0 Favorites

Heel cord surgery

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Bladder

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Name(s) of child(ren)/individual(s) with Duchenne:: Tyler Mischke

Age(s) of child(ren)/individual(s) with Duchenne:: 7-12

City:: Bigfork, Montana

We are the Mischke's. A family of 5. 6 if you count our dog bear. We live in a small town outside of Kalispell called Bigfork, Montana. Our lives changed in the month of July 2008, when we decided our son Tyler (who is 5) wasn't where he should be physically, compared to other childeren. He wasn't running, unable to cimb stairs or ride a bike, and got off the floor really slow. We took him to his pediatrician and didn't agree with him needing an mri for his brain waves. So we had a second opinion at an orthopedic clinic that was offering a free evaluation. They sponsored Tyler to Shriners Hospital in Spokane, WA. That is where we learned he has DMD. Since than we have been researching, crying, and asking why. Now we don't worry about the why, just the how. How can we make him more comfortable? How can we keep him happy, healthy, and mobile?

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At 3:53pm on November 19, 2010, alma reyes said…: Hello!
My son Eric has Duchenne he is 14 years old He got this surgery done at 11. It's painful they need to be in cast after surgery about 6 weeks.You will need support from friends and family. Eric was not mobile when he had surgery. It would help your son becouse it would make it easy to put on shoes and he would have more balance.

At 3:17pm on November 6, 2008, Brenna said…: I have been in touch with the schools. Sawyer is currently in the 4-kindergarten program at his daycare, it's like preschool. He has no needs right now. He doesn't get bused there we bring him and then pick him up. The school and I are planning on meeting late summer to drum up his IEP. I hear you, when you say over protective -- I'm glad I'm not the only one.
-Brenna

At 12:01pm on November 6, 2008, Brenna said…: I read your story and feel as though I'm looking into a mirror. We received Sawyer's dx on Oct. 20th (he is 4 1/2).
-Brenna

At 3:27pm on October 24, 2008, Char Burke said…: April - Me again - you have the strength....it's within you! All parents struggle...it's part of the grieving process. But, like I said - you are strong too....Hang in there and call me or email me.
Char Burke

At 3:24pm on October 24, 2008, Char Burke said…: Hi April ~ I am at work right now but I think you left me a comment. My husband's family is from Butte - but no Joey. Dan is my husband and his subblings are: Bill, Bernadette, Kathy,Marcella (deceased), Pat, Maurice, Denis,
Kevin, Clarita, Maureen and Martin. The family moved to Missoula in the early 1970's..so your sister in law may not know them.
If you just found out - in July - I am really, really sorry. It takes time to adapt to the DMD. I would be glad to share all the things we do for Will. My home email is charlatte2@comcast.net and cell is 206-953-2243. I work from M-F leaving at 7am and not back until 6pm with commute. You can call in evenings after Will has gone to bed at 8:30 west coast time.
Hang in there....I would take another person to your apts. for your son and they can take him out of them and you can stay and talk with doctor. We decided to go with deflazacort (steroid) to buy him more time. It's not supposed to have as many side effects as Prednisone. I think Children's in Seattle prescribes it now. We live right down the street from them. Will actually goes to Dr. Wong in Cincinnati b/c we feel they are more progressive. Anyway, I am glad you found PPMD.....I will leave you with this - there are alot of things in the pipeline now - exon skipping, uptropin upregulation, mini dystrophin transfers, etc. Bottomline - have faith and hope.

Char
To be continued,
Char

At 2:55pm on September 10, 2008, Rodney Foster - Sam's Dad said…: Welcome. I still rember how devestating it was when we learned our son has DMD. He was diagnossed two months before his third birthday and is now almost six.The first few months were an emotional nightmare but time helps with all things and gradually we realized to be thankful that we have a wonderful son and to be honoured to be able to share lifes journey with him. Sam is still fairly strong (for a boy having DMD) and not yet on steroids. I have been told that the way the condition progresses can vary between children a fair bit. Our goal is to give him lot's of love and the best quality life possible. We have started addressing his spiritual needs as well as his physical needs as we know one day he will ask difficult questions and strong faith will be essential for our family. We are all lucky to have the support of other families facing similar challenges.

At 12:12pm on September 6, 2008, Char Burke said…: I forgot to mention that Will also takes a multi vitamin and I try and get him to take some other amino acids - L-arginene and a couple other things. Char

At 12:10pm on September 6, 2008, Char Burke said…: Hi April - We live in Seattle, WA but went to Gonzaga Uni. in Spokane. We go to Dr. Wong in Cincinnati in Ohio. Our son, Will, was diagnosed about 3 years ago - he is 6 now. He is on deflazacort which is a type of steroid that we get over the internet from England - it has less side affects than the Prednisone steroid...specifically weight gain. We also have him on supplements: Protandim, Vitamin D 2000 IU, calcium chews and Co-Q 10 200 mgs. In addition to the above we do daily stretches and he wears night boots.
I am not aware of any groups in MT. but maybe MDA would have something you could join...maybe ask the Missoula office. Also try and use this web site and there is another web site called Trail Serve.org that has good info. Our home email is charlatte2@comcast.net and I can email you my home phone if you want to talk. Keep the faith....we are here for one another. Char

At 10:24am on September 6, 2008, Char Burke said…: Come and join the WA families Group which we are changing to the NW families. Char Burke - Seattle

At 1:38pm on July 29, 2008, Jennifer Collier said…: Hi April,

Welcome to PPMD. I hope you find as much comfort from the people here as I have. My son Ryan was diagnosed on May 29, 2008. I know where you are, as I am still there. Just know that there are people here to support you, that have been there also. Feel free to contact me if you want to chat.
-Jennifer