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Texas Families

Families, parents, & friends from the great state of Texas

Members: 48
Latest Activity: Oct 21, 2015

Discussions

Going from ECI to school district

Started by Veronica E. Feb 11, 2011. 0 Replies

Loophole into Medicaid

Started by Ana. Last reply by Athen's Page Nov 10, 2010. 4 Replies

Physical Therapist Question

Started by Trisha Stringham. Last reply by Laurie Paschal Aug 3, 2010. 1 Reply

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Comment by Laurie Paschal on November 20, 2008 at 2:41pm
How are all our Texas families doing? Y'all ready for Thanksgiving?
Comment by Veronica E. on September 29, 2008 at 2:45pm
Hi, Laurie! I'm class of '98, so we were here at the same time (whoop!). Thanks for sharing what you told your kiddos.

About a month ago, I told Holly that her brother has something called muscular dystophy, and it means his muscles might not work really well when he's older (although now I wish I had said his muscles would get tired -- that sounds so much better --ah, hindsight). I thought about not telling her anything, but she's a smart kid and while we shielded her from any crying and high drama those first tough weeks, I knew she was hearing snipits of conversation, calls from concerned family, etc. and I felt it was probably scarier to not know what was going on. I only wished I had thought about my wording more before I talked to her -- it was spur of the moment decision about a week after his diagnosis.

I had three uncles that had DMD -- my grandparents never talked about it AT ALL with their boys or other kids (what an elephant in the room, huh?) and even pretended their TV wasn't working during the Labor Day telethon. That seemed so dysfunctional to me that I want everything to be much more open then that. I'm just going to have to be very thoughtful with the timing of our discussions and only telling her what she needs to know and no more.

I'm glad I found this group!
Comment by Laurie Paschal on September 29, 2008 at 1:28pm
Hi Veronica. I'm sorry you've had to join us, but so glad you've found us. I'm not too far from y'all. I'm in Montgomery, about an hour away. I drive through on my way to my parents house. I'm also an Aggie ('97). My son was almost 3 when diagnosed and my daughter was 6. We've been fairly open with Abigail, but only giving her as much as we feel she can handle. At 9, she knows what it's called, and that, unless something changes, Sam will be in a wheelchair at some point. She doesn't know anything about life expectancy. Jake is Sam's fraternal twin. He and Sam know even less. They know Sam has Duchennes and that it makes his muscles tired. They still don't know that it will lead to a wheelchair. We just don't feel they're ready for more information at this point.
Comment by Veronica E. on September 29, 2008 at 12:57pm
Hey, guys. I'm Veronica from Aggieland. We found out a couple of months ago that our 5-month-old little boy Max has DMD (We tested him since I have a family history). I'm looking forward to chatting with parents who can relate to what we're going through! I'm also interested in how everyone communicates with their other children about a DMD diagnosis. Our little girl is three and a half and we've talked to her a little bit about Max's diagnosis since she's very smart and picks up on everything.
Comment by Jill Keenan on September 12, 2008 at 1:55pm
To all of you who might be affected by Ike--Good luck and God Bless!! Hope you and your families stay safe and dry! I am in the NW part of Houston, so am hoping we have minimal wind and water damage. Wishful thinking?? Probably=) And I probably shouldn't do this for all the world to see, but my cell is 281-748-1931, if you find yourself in a desparate situation!! Not that I could do much, but know others who are resourceful=)
Comment by Mary Alice King on September 10, 2008 at 2:40am
Hi everyone...My name is Mary Alice King... my husband Kevin and I have 3 children...Madison(b) 12, Tucker 10 and Emily 9. Both of our boys have DMD, which we found out about back in '99...We live in Colleyville (NE Tarrant County)...I am so happy this is here and to be a part of it!!
Comment by Ana on August 25, 2008 at 10:17pm
Hey everyone! Austin got his first chair today!!! It's a Permobile Stander Jr. OMG!! It's so cool!! We went over and showed two of his friends (not DMD) and they got to ride in it and they just loved it!! He is still concerned with taking it to school, so we'll probably give him a couple of weeks to get the hang of it first. I put some pics of it on soon.

Ana
Comment by Stefanie Killian on August 24, 2008 at 12:32pm
The Killian family lives in Rockwall. We are 30 miles east of Dallas. We have 4 kids - Abbie, Nick, Ben and Sam. Our youngest son, Sam, is almost 7 and was diagnosed with DMD at 3. It is great to see so many Texas families in contact.

We are having an event on October 25 in Dallas and would love to invite all of you to attend. It is called Sam's Family Fun Day. This event is to promote awareness and raise funds for DMD research. We would love to have other DMD boys and their familes attend. It is truly a fun day and I think it is also the last weekend of the state fair! For more info see samsdaytexas.org.

John and Stefanie Killian
Comment by Linda Creel on August 20, 2008 at 11:23am
Hi! My name is Linda and I live in Granbury, about 30 miles southwest of Fort Worth. I have a grandson who is 7 years old. He was diagnosed with DMD when he was two years old. We just moved back to Texas last year so we could be close to our son, daughter-in-law and grandson. I am so glad to know that there is a Texas group where I can learn more about DMD and what parents go through. I want to be as supportive to my family and grandson as much as I can.
Thank you all!
Linda
Comment by Ana on July 31, 2008 at 10:23pm
Hi Kristi! My dad lives down around Houston. I've been down once. It really is great hearing from others.
 

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