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Penny Hauer Female El Cajon, CA United States: Favorite

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Living with Duchenne (ag…

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Tactile Sensitivities

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DUPLICATION in DMD

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panic attacks

Started this discussion. Last reply by Ginny Ward Feb 13, 2011. 5 Replies 0 Favorites

Caleb is 10 and has had a really hard time going to school his best friend moved this school year new AFOs and fallings all the time has caused him to not want to go to school he becomes fearful and…Continue

IEP

Started Aug 6, 2010 0 Replies 0 Favorites

my son just found out that his best friend is moving before school starts it was was his buddy at recess Caleb said I will never go outside again cause Diego helped him up when he fell. I have called…Continue

sinus

Started Jul 18, 2010 0 Replies 0 Favorites

Just wondering if anyone has problems with sinus Caleb has had 4 months of different meds each for 20 days he is now on zithomax this is the second time and he is still sick he doesnot run a temp…Continue

thank God I found you

Started this discussion. Last reply by Karen Barnett Jun 18, 2010. 2 Replies 0 Favorites

my Caleb has the sensory issues taste smell socks and all you have talked and everyone tells me it has nothing to do with dmd but not I know it may I thank Kohls for Tony Hawk clothes caues no tags…Continue

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About me:: Mother of 9 year duchenne child have had many problems with doctors with information what was not correct many things said in front of my child things we had worked thur all undone and not correct our ped. doc is much better to deal with not MDA

About my family:: Our son is adopted we knew he had duchennes as all the sisters in this family his grandma now mom has had boys with this disability. at age 9 things are getting very hard for him the tiredness and not wanting to get into the power chair for school our very big issuses do I make him or buy stock in the bandaid company? Im getting very sad at what to loving him is not enought as Im sure all of you parents knowhe is so looking forward to playing ru gby he may to weak I pray he is now so nice to talk to parents who know how hard this is

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

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

City:: El Cajon Ca

my family is now just the adopted children at home our older birth children have families of their own they all want what is best for Caleb but we have been told different things by different doctors W hat we need is just support for myself I know about down sym and cp. ducheenes is new to me and very hard watching my son go thur thr pain and falling and the fact that my grandsons can skateboard so now they skate and he does legos oe yes the vidos he does love and thank you Tony hawk clothes. I get them on sale at Kohls we have 18 kids at home now but Caleb is my baby and has a very special part of my heart my friend told me do not take a child with duchennes its much to painful to watch but i can not tell you how much love we have for him you all know how hard it is to watch the weakness take over and questions about death Caleb and I are going to meet at the pearly gate thats what we decited three days later he asked what the name of those gates were again. then at mda clinic the dr said that he must have becker cause he can still walk at age 9 undid all we talked about as Calebs uncle had just passed from duchennes as an older mom I pray that I will be here to help in his last days he loves holding my hand thats he comfort. thank you for letting me vent I know you all understand many do not Penny hoping to hear from many of you

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At 4:19pm on March 11, 2012, Ginny Ward said…: Penny, I will not be going to the conference. Too much going on here. My sister, PAt, died last week and I am not doing well.

Frisco is indeed a service dog. Got him from Canine Partners of the Rockies here in Colorado.

Ginny Ward

At 3:54pm on January 17, 2012, Shanna Salacup said…: Penny I lost your number. Please call me 619-823-2900

At 11:06pm on January 13, 2012, Lisa Jones said…: Hi Penny. Awhile back you asked me about my son's service dog journey. I came across this video on facebook this week and wanted to share this link to a film about Canine Assistants. http://www.pbs.org/dogs-eyes/film#

At 1:58pm on July 2, 2011, Shanna Salacup said…: Hi Penny! I am going to be able to make the conference after all! See you there!

At 2:54am on June 29, 2011, Shanna Salacup said…: Are you talking about the conference in Baltimore? That would be nice to go to but I can not afford it. I grew up in Rancho and graduated from Valhalla. My father still lives over there. Thank you for your kind and caring message...it has been very rough these past few weeks and would be nice to know some people going through the same things.

At 10:52pm on April 26, 2011, Lisa Jones said…: Hi Penny. We submitted an application for Bradley to get a service dog about 3 1/2 years before he actually got to go to a 2 week service dog camp but the time finally came around and we were able to attend in Sept. 2008. Canine Assistants in Alpharetta, GA covered all expenses involved with the trip including flight, hotel and food, not to mention getting the service dog and the costs of the two week training camp. It is a wonderful program and we are very happy to have Sky. She is a Golden Retriever. The hard part is getting home and continuing the training process. Sky is great in public places. We can go to a restaurant with her, have her go under the table and when we get up to leave people are just amazed when she comes out from under the table. This is because she is very well behaved. But more than anything she is a companion to Bradley which is very therapeutic for him. She goes with us to church when we attend about 3 times weekly but other than that, we don't take her out much. She even went to school with Bradley for awhile but after doing that for one year, the day before he started 7th grade, he decided he didn't want to take her to school anymore. I think he felt having her drew more attention with other students at school.

I believe Canine Assistants is a great place to apply for a service dog and I wish your son all the best if that is the journey he decides to take. We would do it all over again.

At 4:10pm on February 16, 2011, Brian Denger said…: Hi Penny,

Let me get some information and then get back to you.

Brian

At 11:08pm on January 27, 2011, Ginny Ward said…: Penny,

All but one child in my family is adopted and that includes John who I met when he was four. Although I tried to take John's feelings into account, I reserved the parental right to make decisions when they seemed necessary based upon input from his PT/MD/OT... And he loved red!

Ginny

At 8:59am on October 23, 2010, Jennifer Chalfan said…: Hey Penny I just read your comment on my discussion on depression.Cody seems to be doing better but goes through spurts where he seems depressed. He doesnt feel like he has a lot of friends either because most of the boys play sports.Cody loves sports especially football and wishes he could play so bad.He feels left out alot with the other kids and is having some issues with some of the kids telling him he is fat and lazy. Cody takes prednisone and has gained alot of weight and kids can be very mean.That is very painful to watch as a parent. But he just had his MDA clinic visit and all in all Cody is doing well. He will be 11 in Jan and is still getting around pretty well. He uses a wheelchair for long distances.I just keep praying that a cure will be found in time. But I just take it one day at time.

At 8:19pm on October 8, 2010, jenn said…: it is scary that he went under water and couldnt get out, austin has had a harder time in the water lately as well. swimming is so good for him that we have him get in the pool daily, but under very close adult supervision..they really do need to be watched carefully, as the disease progresses they may not know what they can do on their own, so injuries can happen.