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Hospice Care for DMD?

Started this discussion. Last reply by vilma rodriguez Nov 20, 2009. 2 Replies

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Welcome To The Rice's Life!

Profile Information

About me:
I am a 40 year old mom of MANY-some not yet mentioned below. I am now a part time pediatric ER nurse, and full time mom, which is a huge switch for me. I have a great hubby who is in the military and is my back bone, and has been for almost 11 years.
About my family:
I am mom to a beautiful, temperamental, difficult teenage daughter named Raven who is amazingly witty, smart, and funny. I was also step-mom to a beautiful mischievous teenage son named Brandon who was also witty as he could be, as well as tender hearted, and kind. My children are my life. DISCLAIMER ****So not to step on anyone's toes, although I am only his step-mom, he felt like my own, I care for him as my own, I treat him as my own (and have for 11 years now) and so I refer to him as my son. Its not meant to take possession away from his natural mother, nor to dismiss her value in his life, although she would definitely disagree. Its because I think of him as my own and there are no "steps" in our family, only family members! Make no mistake, I am "only" his step-mom, but love him more than anyone could ever have imagined.****
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
El Paso TX

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MommaToo's Blog

Since he is gone...

Posted on May 1, 2012 at 12:30pm 9 Comments

My son passed on March 21st.  Although it was peaceful, it was the most heart wrenching thing I have ever been through.  I just wanted to stop everything, but couldn't.  It was so fast.  He was fine, then 3 days later, gone!  I am glad he didn't suffer, but just have so many regrets.  It hasn't got easier yet.  Lets pray a cure or at least a treatment can be found soon so no one ever has to go through this again.

Cardiac Issues

Posted on May 1, 2010 at 12:30am 2 Comments

Caring Bridge Link

Posted on January 11, 2009 at 3:00pm 0 Comments

Brandon's mom (Catriena Wheeler, also a member)) and I will be working on this together. Wish us luck and please leave lots of comments! Its our first attempt at trying to keep everyone near and far informed on Brandon.

Hits close to home.

Posted on January 10, 2009 at 7:30am 2 Comments

I am having a terrible time sleeping. After reading about the TWO 13 year old boys with Duchenne's who passed away already this year, I am just heart broken! I cant imagine what the parents must be feeling. Although you know that your child is expected to have a limited life expectancy, you sure don't expect it to be 13! I guess it hit pretty hard because we have a soon to be 14 year old. Although he is doing well over all, little things seem to be happening and sneaking up on him.

Brandon… Continue

Comment Wall (11 comments)

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At 8:38pm on June 14, 2010, Gloria Caballero Thompson said…
Hi, thanks! Photo of in hospital is in March 25th 2010 when dylan was there for "Scoliosis Surgery". He was well enough to go back to school in six weeks. It was hard and uncomfortable for him. But now we are past that. Thank God. He has titanium metals in in back now.
At 8:51pm on April 28, 2010, Dina said…
Thank you for the comment. I hope all is well.
At 12:31am on June 4, 2009, Rhiannon Traigle said…
Thanks so much! I took the one of Brandon looking away with the black jacket (with something red on the front). That is an awesome picture!!
At 12:03am on June 4, 2009, Rhiannon Traigle said…
Hi, I am writing to ask you if I may use a photo of Brandon for a slide show I am putting together. We are having a fundraiser for my son and for PPMD in July. I put together a slide show so that attendants may see the boys around the country they would be helping by donating. I would love to add a photo of Brandon if that is ok with you.
At 8:47pm on April 7, 2009, Ana said…
Hi MommaToo. I have applied for SSI for Austin and was denied due to my income. They told me that he could probably get medicaid. When I asked if we could get medicaid when we have insurance, they said well, probably not.

So, to answer your question, most of us make too much $$. Or already have insurance. I have applied for a couple of different services: DADS, and some others, I'll let you know once I find all of them again. Just so you know, there is help out there, but most of it you will not recieve until he is 18 yrs old, and not making his own income.

Sorry to tell you this, trust me, I know it sucks. It'skinda like we get punished for working..... No offense to anyone, but it seems like we qualify for nothing.

Another thing I can tell you..... Depending on where you live, try the St Jude's hospital. You will have to go through all of their Dr's and Specialists, so depending on how long you've had a diagnosis may help you decide if you want to do that. We've decided we didnt want to lose all the Dr's we already have.

I've only been in Texas for going on 5yrs, so, I dont know everything, but sine dealing w/DMD I have learned alot. Just hollar if you have questions or need to talk.

Sorry this is so long, it's in answer to the question you asked in Texas families. Welcome to Texas!!!
At 12:17pm on December 29, 2008, Danielle said…
ooh, I'm so glad my post was useful! If you need any tips just let me know. It's hard to know what's out there until you've heard it from other people. Frankie stuggled for ages with using a keyboard until someone showed us the onscreen keyboards, so sometimes there's a problem and you don't even know there's a solution! That's why these kind of pages are great. I loved looking at your pictures by the way! Brandon looks really cute! (I know parents aren't allowed to call their kids cute once they're in their teens) but he does! You can really see the love in your family too! Great electric chair he's got!
At 8:32am on December 10, 2008, Tanya Fleming said…
Thanks for your comment, it didn't sound strange at all. I actually have another twist to my life, my husband of 20 years can't cope with the way this life is going, he has been withdrawal for about 13 years now and now we are getting Divorced. But believe me when I say things are better when he is not around, I still love him, but he brings doom and gloom to the family, which is how he was raised, not me, you have to stay positive for the children you are caring for, it is not time to be selfish. I love your Pictures!
At 12:30pm on December 9, 2008, Susan Rathfelder said…
Thanks for your reply to my question, I appreciate your insight.

At 9:50am on July 23, 2008, alicia said…
How old was Brandon when he was diagnosed? Do you have any other children? Look forward to talking again soon.
At 9:15pm on July 21, 2008, alicia said…
How old is your son? I am fairly new to all of this, but have found a lot of info on here. Feel free to get a hold of me any time, I'm always willing to talk.

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