My son Baylor is 12 1/2 now. He weighs 82 lbs. and has used a power chair since 8 1/2. His aide is no longer able to lift him on the toilet. She assists him with a urinal that we created ourselves, as a regular urinal didn't…"
"My son and I just came back from CCI as part of November 2012 graduating class. We live in California, attended the facility in Santa Rosa. This experience was some of the best days of my life of 42 years.
We received a great Lab/Golden Cross named…"
Funny you should ask. We just got our service dog in June. She is a 1 yo female golden retriever. Our dog is trained in mainly picking up items, and bringing them back. She can "hug" Ian when/if he needs…"
Thank you so much for responding! Your reply has helped me to make the decision to apply for a service dog for Baylor. Everything you described about Lulu and Matthew is what I had hoped Baylor would have with a service dog if…"
My son Matthew is about to turn 10 and he just recently, February of this year, received a service dog from Canine Companions for Independence. I like you tossed this idea around for a while and finally decided to do because he wanted…"
Hi! My name is Marla Swope and I live in a small rural town in Idaho just over the Utah border. I work full time, and take care of 2 boys which keeps me plenty busy. My husband Tim and I have been married 30 years. I enjoy creative writing, reading, and gardening, among many things, but my most favorite thing to do is spend time with my family. It gets a little loud at times, but we have lots of fun!
About my family:
My husband and I have 6 children. The four older children are married, and there are 2 still at home. Mica 15 and Baylor 9. We also are the proud Nana and Papa to 5 adorable granddaughters and 2 grandsons. Baylor was diagnosed with Duchenne 7 years ago. I'll never forget that day. It has been a painful journey (as you all know to well), but we are so grateful for PPMD and our DMD family.
Name(s) of child(ren)/individual(s) with Duchenne:
Age(s) of child(ren)/individual(s) with Duchenne:
A Smile is a curve that can set a lot of things straight!
"A truly happy person is one who can enjoy the scenery on a detour"
your little man is so precious!! Love the photos, especially the one where he is holding Mickey. Please tell me how he is doing...My son was just diagnosed about 3 weeks ago. He is 2 1/2 years old and having a very hard time going up stairs. I am interested in learning about protandim.
Hey there, Marla! Great to hear from you! We are doing good! I can imagine you ar longing for some warm days!! Should be getting really nice there soon, right?? We have had a great "winter" here!! :)
So glad today I get to "do" church in my pj's!!! haha!!
P.S. Are you going to the conf. in Atlanta this summer??
Thx Miss snowed-in-Idaho woman!!! My husband will trade places with you any day! He is sooo sick of the warm weather--it is 70 today and supposed to be 80 by Fri. I, however, love it! So come join me for a week or so!!
Sounds like your home at Christmas was a blast--you sound like such a fun mom=) We really do need to meet someday! It was crowded but fun being with the whole family--everyone was home except my nephew who is serving a mission in California!! (Just a little quirky tidbit--this same nephew signed with the Cincinatti Reds the week after our first visit with Dr Wong there!! I thought that was quite coincidental--I had NO idea he was even talking to them!!) Now we are back to the same ol' routine. Already looking forward to summer=)
I've gotta run go pick up my oldest from school, so I will chat with you later.
Hey Marla! This is the first time I visit the site since before Gustav. I had been out of cable, internet, and phone service for a month. We received minimal damage from the storm and are trying to make the necessary repairs to get back to where we were before. I have a new roof thanks to Katrina so I didn't receive roof damage but Rhiannon's house needs a new roof. Our schools were closed for two weeks and I am still trying to catch up there - it's been a bit difficult since the system relies on internet, email, and other programs which are still not up and running. I have learned to appreciate technology more than ever and wonder how we did without it years ago. We had evacuated to Joe Wheeler State Park in Alabama. My sister has a houseboat on the river and we were able to stay there and rent rooms at the lodge for 5 nights. I really could have just moved up there. It is so peaceful and beautiful! Well, I have to go and put Riley to bed. He and my 7 month old grandson are sleeping at my house tonight. Rhi took Reagan to the Cheetah Girls concert and Lauren attended a friend's wedding so Vaughn and I have the boys. I just put the baby down for the night and now it is Riley's turn. He doesn't look as if he is ready to go to bed but I am (they wore me out - HA!). It was great hearing from you. Keep in touch.
Just a quick note to say that it's not too late for the Coach to Cure event. I just had to send out letters telling what the event is and who it raises $ for and then request $$$=) I sent it to friends and family. (BTW, ppmd provides the letter and then you can tweak it to your liking! They made it super easy=) Just click on the link and get ppmd to send you the packet. Or you can call them for more info. [You can also host a tailgating party--which I am not doing and neither are you=)--which would obviously need to be held on Oct. 25 (game day).] Obviously, the sooner the letters get sent, the better. Anyway.......
If u c that drivers permit fiend out there, zig zagging around, send her my way, would ya???!!! I need to have words with her=) Wish we only a 5 min. wait here--more like 2-3 hrs!!! Can u say Y-U-C-K-E-E-E???!!!
Howdy ho there, Marla! Sorry I am so late in responding. I really need a new laptop--mine has to stay on the desktop all the time now or it looses power instantly=( My husband is researching for me--hope he speeds things up b/c I am so behind in emails and msgs b/c I just can't spend my time upstairs on the computer all day!! I need it downstairs so I can type when I can. You know how that is, don't ya?
It doesn't look like we will be making a trip anytime soon and certainly not when you will be in FL=( Things have been soo busy here and it's only getting worse. I forgot how busy things get when school is in session--makes it difficult to get away, even for the weekend!
My oldest turned 16 on the 28th of Sept!!!! She was sooo excited but doesn't have her license yet. She still needs to complete her drives times for drivers ed but has misplaced her permit, and they won't let her even sign-up for times to drive without her permit. So silly since they know she has it--they are the ones who got it for her!!! UGH!! So, today after school, I am off with her to stand in those long lines to get a duplicate permit! Part of the reason I paid for her to take a drivers ed course was b/c they do it all for you--get the permit and the license and I never have to wait in line=( I am NOT a happy camper--I HATE to stand in line for anything!
Anyway, the quicker she gets her license, the less driving I have to do, so I guess it's worth it=) (Can I say I do dread the day she goes off driving on her own--I will be a nervous wreck until she returns safe and sound!!)
Sooo, is your hubby working or going to work in Galveston? Selfishly, I would love it if he is, so that we could meet!! Keep me posted. (Would you bring Baylor?? Wyatt would love to meet him and we could also set-up lunch/dinner/play-date with other "dmd" families here in Houston--they are all wonderful and most are nearby!)
Have you read about the Coach to Cure? If not, you should find the link on the site here and take a look. This is a great opportunity to bring awareness and to raise $ for our boys. Take a look=)
Hope you are doing well. When is Baylor's next appt.? Wyatt goes to Cincy in Feb., so we have a ways to go... I'm gonna run--gotta get some work done=( Talk to ya sooner than later! (yeah, right? huh?)
Baylor is so cute!
I am not sure what in frame or out of frame means. I am going to have to call the doctor on Monday to see what Beau has.
Does it make a difference? I know Beau's deletion is number 54. We are assuming he has Duchenne because of his age and his weakness. Does the out of frame mean Becker or Duchenne?
Oh my goodness, Marla--or should I call you ancient one;)! I thought I had emailed you back--must have dreamed that I did! I am getting ready to head out myself but will email sometime this weekend! What kind of work does your husband do that would bring him to Galveston? Or is it through church? I took my daughter and some other youth to help unload a truck of supplies that the church sent in. My friend, who is the RS pres. was here when the Bishop called one hour before the truck was to arrive and when we showed up there were probably 40-50 members already there unloading! It was a little thing but I was amazed to see that many moblize in less than an hour! (Unlike UT and ID, 2 streets don't make a ward--not even close=) Have a great weekend and Happy B-day to Maleri!! (And you aren't ancient!! Of course, I'm not too far behind, so maybe we both are and I am in denial=)
Just sent you an email. Hope it reaches you--let me if it doesn't! I said lots in it but just in case you never get it, I just want to say thank you from the bottom of my heart for your happiness for us--we are truly over the moon!!! And thank you for your friendship--it means so much to me! I don't know what I would do without the connections I have made here at ppmd!! Glad I don't have to worry about that!
Gotta run and hope u get my email!