Hello Kari I wish I could call you as friends often do today was so hard Caleb is 10 still walking happy until now he wears afos that happened over christmas. everyone is always telling he how well he is doing cause he walks however everythingelse is falling apart. sinus very serious can not cure it because of having an allergy to everything. so he has shots in each arms twice a week. back to today had three weeks off mon he had a headake and next day his tummy hurt. tommorow you go ok ok Mom I will got him dressed but he wanted to sit on the bed and rest ok Caleb its time to go no no mom I just cant I cant which became stronger and louder. not a person will know about the afos not one unless you tell them. his eyes were wild I cant I cant I walked him to the bus he turned around and told me that he never wanted to hold my hand again that is what he does to go to sleep and when he is scared. ok I said we walked beside the bus and prayed he looked at me and said that God is not helping or he would not let this happen. I have prayed a morning and I got on the ppmd site and up came your site so what to do I feel so helpless I know that GOD is there and I know He helps but who has the understanding of a 10 year old.If you want to give me your # I would just love to talk to someone who knows and has a great relansionship with our Father. I hope you read your site today want to hear from you. Penny
HI Kari, I saw your note about non-profit vs. trust and would love to chat w/ you more about that. My nephew, Zach (12 yrs old with Duchenne MD) lives with us and I am in the process of setting up something for him, but there is SO much info out there and I'm overwhelmed!! Shoot me a note when you can. Thanks!
Hi Kari - I saw your message about attend the Run for our Sons 1/2 marathon on Sunday. Me and my family will be there. My husband is running, as well as some good friends of ours from Eugene, OR. My mom and sister are flying in from Texas. Our son, Alex is almost 10 and has DMD. We also have 3 yr old twins. We will look for you. Your son is so adorable. I love scrapbooking too. Take care.
Yes, you must keep the faith! But what I say for you now is since he is so young and probably not so symptomatic....just dwell on him and forget the Duchenne as much as you can. I used to forget Johnner was "sick" and wondered if I was crazy. He is going to have a hard road....but he will have a great life. That is what I said about our son---and he did. I am writing a book about his life and I am going to name it "I Didn't Say It Was Easy." It isn't easy but the GOOD will far outweigh whatever down sides you have. I can sit here and think of a zillion moments Johnner made me laugh so hard I cried, made my heart sing, etc....and I have started to put the surgeries, BiPap part, the drug study, stays in the pediatric intensive care, etc. things on the back burner. Yes, they were part of his world but only a blink of it. I hope all goes well with you and your little guy. Remember I am here to chat with whenever you want to. My thoughts will stay with you. You have found a great place for support here. My son was diagnosed in the early 90s and these things did not exist.....this site is a blessing. Kim
Thank you for your email response. Coincidentally, I just had my 2nd Echocardiogram with a new Cardiologist and was much more satisfied with the results. It also was a much easier exam then the one I had two years ago. I was very happy to hear him say that my heart is fine. I have always heard in the past "false positive", or "we can do a oblation for my very well controlled occasional tachycardia". He cleared me for another two years.
I need to be well so that I devote more time to getting money raised for MD.
By the way, Michael has his IEP at school just this year and it's working out very well so far.
Your Jared is precious in his photos. I pray for all these children.
What I am finding from my experience is that the school district gets extra $ for having our kids. Tyler's OT/PT act as his advocate. The therapists of course are more concerned with him physically while the school is more concered academically and they come together to combine their goals for them to best fit his needs all around. Tyler is now in a wheelchair. They will take 45 min out of his to get him out of his chair and do stretches and to give him a break out of his chair. They also (therapists) train your childs aide, act as your advocate for instance Tyler has out grown his chair, they called our wheelchair company to get an appointment to get things adjusted. They met with all his teachers, told them one of the goals is not to tire him so they told them things to do instead of him having to write all day long. There is just so much more this is just the tip of the iceberg! If you would like to see his IEP let me know and I can send it to you. I will be praying that your son gets all he needs without you having to fight. Keep me updated!
I was wondering if you got your questions answered about Jared's IEP? I had been homeschooling for the past 3 years and have recently put Tyler back into school so we just did Tyler's IEP and I was very impressed with my school district. If you have any more questions you can ask me and maybe I can help.
Jacob is now 9 yrs old and was diagnosed at age 4 & 1/2. Noah is now 16 months as was genetically tested inutero. We are still praying the tests we wrong. But are much more informed and prepared if he does have DMD.
Hi! Thanks for the info. Jordan just tonight was complaining about having to sit cross-legged during music class-- I don't know if he's playing me, or if it really is difficult for him to sit still. I am going to talk to his teacher and see if she will let him sit straight legged, and see if that helps him sit still.
Thank you so much for helping me with my questions. I don't have a definite # for Jordan's cpk, only that it was greater than 1600. It's only been taken once, but I assume that when I go back to CHOP in February they will order more blood work and I will ask that it be checked again. Dr. Wong extrapolated from his liver #'s that his cpk was in the 24,000 range, which would be a DMD range-- I am just still praying that we will get better news at some point-- I am definitely not at complete acceptance yet.
Also-- you are right about the pictures-- I am going to try and figure it out this week!
Thank you for your response on Jared. I pray that Jordan will continue to do as well as Jared is. Do you mind my asking how the final determination between Becker's and DMD was made for Jared? Does he have an in-frame deletion? Jordan is out of frame, but during these last 7 months, every provider, PT we saw told us he seems to be doing exceptionally well for someone with a DMD diagnosis. We keep praying that this remains the case. Jordan also has only once complained of leg cramping, and it was last January. He came home limping one day and said his "legs hurt sometimes when he runs too much." That was the only time he ever owned up to it, and never mentioned it again. Even on direct questioning about it he will deny it now. I don't know what to think.
I am so glad that Jared is finding his balance, and in so doing I hope he doesn't feel discouraged. That is also a fear that I have with Jordan-- I know I will have to be strong to help him adjust to any changes that the future holds.
Thank you for everything, you are in my prayers.
Hi Kari - How are you and your family? Has God brought you that perfect home yet? I keep you all in prayer. Tanner has just completed getting all his dental work, TB test, and seeing primary care doctor and will begin steriods on Monday. I am stuggling with this. I know it is the best thing for him, however the unknowns are a bit hummmmmm...... I am really trying to hand this all over to the Lord, but do stuggle with it at times. Anyways hope you all have a blessed new year. ~ Traci
Hi Kari-- I was reading your posting about limiting activity! This is causing me so much stress. Do you mind my asking how old Jared is and when he was diagnosed? My son, Jordan, has a DMD deletion, but will be 7 in 10 days and is still fully active. He was not diagnosed until June, and it wasn't until last Feb that anyone ever said anything to us about him having any suspicious weakness. I have full faith that God is keeping him close and I try to calm myself by reminding myself of this.
Jordan only seems to limit himself when it comes to running. He seems as though he will start out running, but then switch to a walk b/f the other kids. I was thinking of getting him an electric razor scooter as soon as he is big enough. He is so small for his age that I don't think he could do it now. I saw a really cool one at Dick's sporting goods-- it' looks like a Stand up scooter, but it also had a bike sort of seat-- I guess for long distances. There are kids in my neighborhood how have the regular stand up electric scooter, so Jordan would love zipping along with them. Good luck with finding one!
Any info on how Jared came to be diagnosed would be greatly appreciated!
I'm not so savvy with the computer stuff. I dabble as I find time. Thank you for your welcome. How did you know I was new? Your son, Jared, is a cutie. Hope the holidays are going well. I'm extremely overwhelmed.