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!
Hey there! You were up 'til the wee hrs. of the a.m.!!
I didn't get your email. I hope that my email settings didn't block it--but that doesn't usually happen. We are about to be "hit" by Hurricane Ike so don't know when I will be back on here if we loose power. Should have power til about 2 am.
Basically, the email I wanted to send was one we sent to tons of folks about Wyatt's biopsy. Dr. Wong told us he has 25-50% dystrophin and put him in the mild to moderate bmd category!!! She said this was more than what PTC 124 would give him--not that he qualified for it; just used that as an example. She told us that he should have a normal life expectancy. We are just so in shock and grateful that we did the biopsy, even though we doubted the saneness of doing so! We are so excited by this news that we just don't know what to do with ourselves! We did go to Chuck E. Cheese to celebrate--at the prompting of a little boy who had been prompted by his 10 yr. old sis=)
Anyway, I just wanted to share our news--best news we've ever had!! I will send my "official" email whenever I find your email address!
Now, I'm off to finish preparing for the brute, Ike!!!! Have a great weekend! Jill
Can u email me at email@example.com so I can have your email address? I have some good news I wanted to share in a more pirvate setting. Thx.
And I love the new photos you've added! I saw the one of Baylor in the laundry basket on the home page of PPMD and thought how adorable that little guy was--not recognizing him as Baylor=) I need to get some new ones added from the summer and take off some of the old ones. Yeah, right, huh? I was doing good getting the ones I have on their=)
Hey there ghost lady!!! Thx for your posts! Things here are going good. We went to NYC for 5 days --left the Fri. b4 labor day and returned the following Tues. and then had company for 4 days after that!! So, just been a bit busy and haven't been on here at all.
You, my dear, are one funny lady with all your "pep" talks to yourself! You crack me up!
You made me cry when u were talking about Baylor and Allee!! All too familiar for us here, huh?? BUT u shouldn't never be so down on yourself about "giving" him this disease!! You assumed (with good reason) that you were not a carrier. What would you do without all of your other children and little Baylor--dmd or not??!! What if you had decided not to have children? You have 6 and one has dmd--I would say that others would have made the same assumption you did and gone on to have more children! I know it is hard, esp. as mothers, to not blame ourselves, but it's crazy b/c why would we ever want to GIVE this to our sons?? We wouldn't, so we need to try and remember this on our bad days, right?? You just come crying to me and I will try to help you through the rough days--give you a "pep" talk!!
I can't believe that Baylor doesn't love primary! That's a tough one! How does one "make" their child go to primary??? I will say that at first Wyatt always wanted to go back to nursery so he could play, play, play!! So, it took a couple of months for him to love going--he always went with no fits--just expressed his desire to go back to nursery=)
I better run and get Wyatt up so he can get ready for pre-school! Have a great day and will chat soon!
Hi Marla - please join the WA families group. We are going to change it to NW families. We live in Seattle and used to live in Spokane...on the boarder of ID. My husband is from Mt. and I am from CA. We live in Seattle and our son is Will, age 6 with DMD. I have read alot of your posts about Baylor on the Trial Serve website. He is a cutie!
Char Burke - Seattle
3 msgs. in less than a week--I am sooo privileged!! I'm sorry to hear that you aren't going on your trip to Oregon=( That sounded like fun--sometimes it's fun to be crazy! (But you do pay for it eventually--baggy eyes and all=) I can't believe you lost another post but I did love your responses--very cute and clever!
My kiddos start school this Monday and I am so dreading it. Not looking forward to getting up so early (early morning seminary starts at 6 am and this year they are starting the first day of school--usually they wait until after the first week! UGH!), the sports practices, activities, etc.! I like the "no routine" of summer! We have been soooo lazy and have loved every minute of it. Wyatt will start his preschool the following week. He will go T, TH. I just don't want him gone 3 days/wk--plus I love his preschool but heard from a friend that teaches there, that the 3 day program teachers are not so great! So, it mad it way too easy to just send him the 2 days. How sad for little Baylor to get stung --poor fella! I just hate it when they get hurt and hate it even more so now--they are going to have enough "hurt" and don't need any extras on their plate!!! What can I say--I am all "whimpy" when it comes to my kids=)
Steroids are going okay--not too many melt downs. He is definitely more emotional but this has seemed to level out more the past few days, as well as his hunger. He is still more hungry than before but not near as much as he was the first little bit. We are keeping our fingers crossed. If he gains a lot of weight, we will still keep him on it but it will just seem counter productive, as far as being able to move around with all the extra weight. Sorry to hear of Baylor's "intolerance" to steroids--that would make life pretty darn miserable for all involved and that doesn't make for a quality life. Let's hope they can come up with something that will suit all the boys better and preserve more muscle function.
My heart was breaking for you when you were talking about others "noticing" weakness in Baylor. I sometimes stick my head in the sand (not that you are doing that) and "pretend" not to notice certain things. (I do this with lots of things--not just dmd.) But when he plays with his friends, esp. those that are quite a bit older than him, I can't help but see the differences and it makes me so sad. Don't ever feel bad about being a "downer"--that's what we are here for, right? The good and the bad! I'd rather be a downer here than with my family--they will see that plenty so if I can "hide" it from them every once in a while, then that's okay! They don't need to see and hear all that I know or notice.
OKAY--your story of his biopsy wound made me want to hurl!!!! Ew! Ew! Ew! That just gave me the willies, made my skin crawl and made me hurt!! I can't believe he slept right through it--amazing! I do hope that the rest of that stitch dissolves like it was supposed to so that you don't have to go through that again. Gross!
I didn't know you had applied for the make-a-wish! I have heard that it is so amazing, esp. at Disney, with that village place. How fun! And I would think the weather would be good for you--might be a little muggy, but shouldn't be cold. Florida's weather seems to be similar to Houston's. (Although, when my oldest was baptized about 8 yrs. ago in October, I told everyone who was coming that it was hot and not to bring jeans--only summer clothes! Well, it was sooo stinking cold and rainy that weekend and no one had warm clothes to wear! So, I guess you should bring a jacket and a pair of pants=)
Well, I will go since I have written sooo much! Talk to you soon!
P.S. Where do your kids live in Rexburg? Not that I remember much--it's been a while and things have changed sooo much! Before I was married I lived up on "the hill" just down from Aspen Village (which my neighbor and his brother own--just learned that=) and then lived by the fair grounds after I was married. My oldest was born in Rexburg--Sept. '92!! I probably told you this already, but my sister-in-law works at the college. She works with the ballroom dance team as their costume designer. Anyway.....just curious!!
Still waiting for that loooong post that you lost but promised you'd rewrite=) LOL!! But I really would like to hear from ya--I'm sure you are super busy--just wanted to give ya a hard time!!
We started Wyatt on deflazacort 4 days ago--what a huge event that was in our lives:( Makes this disease even more real, and in your face! He is taking it like pro. I was so worried that he wouldn't be able to swallow it (has never taken anything but chewable stuff) or refuse to take it. So, I am grateful for even the smallest of miracles b/c that would have made giving him the meds. even harder. He has definitely been more hungry--I get a lot of "Mom, I'm hungry" throughout the day. Is Baylor on steroids? If so, how has that been?
Well, chick-a-dee, I'm going to close and I expect to see a msg. on my page in the near future=)
I'm finally back at home! We had a great time in Hilton Head but my 2 nephews, 19 and 7, got stung by a big ol' jelly fish the last day we were there! My 7 yr.old nephew, said he could feel the tenticles (sp?) on his legs!! Poor fella! The back of his leg was red and swollen!
Wyatt has healed very nicely--still is numb just below the incision but was told this should only temporary. We are still waiting for results. How about you guys? Did your niece and her son ever find out if in fact he has dmd??
The conference was amazing, with great access to the latest and greatest. I just wish research and the actual trials for the promising stuff was well under way and getting ready for the "public." Time is on our side since our boys are young but the time it takes for a drug to be market ready is just so long. I just want it now or yesterday or 20 yrs ago, etc!!! I hope you get to go next year. I'd love to meet you and I think you would love to meet the other families there. I told someone that it was like being with family in the conference rooms even though I was sitting in a room full of strangers! There is talk that it will in New Orleans or Atlanta next year! Are you going to go to the advocacy conference in D.C.? I would love to go--not sure if I will.
Hope you and yours are doing well. Have a great week! Jill
I wanted to write to you last weekend but never stopped long enough to sit at the computer. It seems like yard work and house work keep calling me. I don't get summers off like the teachers do. I work during summer school (students that do not pass the LEAP), attend meetings, workshops, conferences, and prepare for the upcoming school year during the summer months. I really need a break before school opens on August 5th so my husband and I are going to spend the wekend in New Orleans next weekend. Before Katrina, we used to spend one weekend a month there but have been only twice since Katrina. I don't care for Bourbon Street but enjoy the French Market, Jackson Square, the French Quarters, IMAX, the Aquarium, and of course, Harrah's Casino (ha!).
Marla, I had a major meltdown Wednesday night. I became so angry about DMD that I cried, yelled,and vented to my husband. When I woke up Thursday morning I could tell that it was not going to be the best day because I still felt upset. I went to work and started all over again venting to my secretaty, guidance counselor, and assistant principal. The secretary and guidance counselor understood - the secretary lost her 16 year old daughter in a car accident last year and the guidance counselor lost her 19 year old son in a car accident 10 years ago. I appreciate that I could talk to people that understood the pain but sometimes you feel that you need to talk to another parent or grandparent of a child with DMD because you know that they truly understand what you are feeling. My pain and frustration and anger is not just for Riley, it is for the little boys (and girls) that have MD. I know that we deal differently with it on different days and Wednesday and Thursday were "throw a fit" days for me. That type of behavior is so out of character for me because I am so easy going but I just could not tolerate another moment of anguish without letting anyone that was in my presence know. Hopefully this is normal behavior. If not, oh well, all those that saw me throw my fit will just have to think that I've lost my sanity. (I did find it on Friday.) I am noticing more and more the struggles Riley has performing simple tasks. He slept at my house on Thursday night and it took quite some effort for him to climb into the bed. He would not allow me to help him because he said he could do it by himself. He did by grabbing the blanket while I held on to it and he used his arms to pull himself up. Today he got up from a sitting position on the floor by grabbing a door then the door knob to pull himself into a standing position. Rhi and I noticed that although he seems oblivious to his condition, he must not be because he used the excuse that he gets too tired when we told him to pick up his toys. When Rhi told him that he could take a nap after picking up his toys, he then decided that it didn't really tire him out. That little stinker tried to manipulate us! I think he knows more than he is letting us believe! How is Baylor doing? Does he have any understanding of his condition? Well, I guess it is time for me to feed the cat and dogs then bathe and get some reading in tonight. After church tomorrow I will be back in the yard working in the sweltering heat - I can't wait - joy, joy. Have a wonderful day and keep in touch.
Thank you for the information. Jordan always got off the ground pushing on his knee as well. I am trying to be optimistic that he has reached the age that he has w/o any obvious worsening of symptoms. I know that there are weaknessess that the professionals pick up on, but in regular life, Jordan still appears to be just fine. I have strong faith, but after getting the diagnosis, I am so scared to be too hopeful just to get my heart broken again.
The conference was tough to get through emotionally. However, I was glad for the information. It appears these early mutuations are rare, and in some cases can lead to a more mild expression (however EVERYONE said each case is different and there is no way to know-- it's really frustrating). We will speak to the doctors in Philadelphia on 8/8. I will definitely be back in touch to let you know what happens, but probably not until after Labor Day, as we will be away for most of August.
I'll keep you in my prayers.
Marla, I will definitely let you know what I find out. I spoke to Vanessa Rengal at Duchenne connect today, and she said that there were 20 boys with my son's mutation in the german database. I don't know how many other databases there are to check. I will be in touch after the conference.
One question-- what symptoms was Baylor having that led to his diagnosis (if you don't mind my asking).