I would love to get together! Do your children attend Northwestern? Lance does. I'll try to shoot you back an email so that you have my cell #. I looked at your pictures. We were at the plane pull too! ;-)
I don't think that one medication works better than another. You can always try a different one, but Focalin tends to work as well as the others. An amphetamine-based medication like Adderall or Vyvanse is chemically different than Focalin, so it might be worth a shot. Are you sure you've tried a high enough dose?
I haven't been on here in a while either and recently changed my email so I just got your message. Glad things are going well with your son. Michael is doing well with his night splints and the therapist feel that his rang of motion is good at this time. We go tommorrow for our 6 month f/u @ CHOP. Sunday's are usually good. Are you going to the meeting for PA families? I live 5 minutes from the Quakertown airport. If you are going we should meet up and set a date to get together.
I see you live in Kempton which isn't too far from Quakertown. Would you be able to join the PA familes in this area to help with the fundraiser in October? We will need people to man the ticket table and the games.
If so please email me at firstname.lastname@example.org so I can put you on the mailing list.
My name is Niccole and I am also a RN. My son Michael will be 3 next month and was diagnosed with DMD in May. Not sure where Kempton is in relation to Quakertown but I see you go to CHOP. How are things going with your son and family. Haven't been on here in a while My denial phase is coming to an end and reality is setting in since we put the nightime splints on him. Saw that your son was going to have the casting. Did it work??
Hi Jessica! Thanks for the message. When is your son's birthday? I noticed you said he will be 7 in two weeks, and my son will also be 7 on January 15th. I would love to touch base. We go to CHOP in Feb for 3 mth steroid follow up. I have not really noticed much difference at all yet. I did just start giving it to him w/breakfast instead of dinner, which seems to be helping him sleep later. B/f he would go to bed ok, but he was getting up way too early, and then I was SO stressed about how he was going to get through the day. Is you son still running around and taking gym? Jordan is, but some of the other postings are making me wonder if I'm doing the right thing. I am just so sad that I even have to be figuring this out-- he knows he has muscles that are a little less strong, but we're just starting to explain to him that they get tired easier, too. He has always compensated in such a way that no one would ever notice that anything is going on with him-- including us. Only once it was pointed out to us did we see what was going on. In the meantime, his friends just think he is a slower runner, but he's also teeny compared to them.
Oh well, thanks for letting me vent, and I would love to catch up. My # is 510-388-3434
Hi Jessica, am so sorry to hear about your friends baby, I know how she feels all you could really do for her right now is just to listen. At least that helps me alot when a need to vent. No it's not fair when a little baby passes away ,but as for myself I know that my Dylan Matthew changed many people and he touched many hearts. Everybody knew him at the NICU at Miami Childrens Hospital even nurses that he had never had. He was just always smiling and looking around even if he couldn't move but the two things he could do was look around using his eyes and smile, Dylans eyes said a million words. With this I am able to find some peace. So you could do the same for your friend because am pretty sure her baby touched many people too.You have a beautiful family. How is everything going? God Bless.
I too am a nurse. I work as a OB nurse in a rural hosp. in WI. I love what I do, even more now that my husband I will probably not have more kids. Sawyer 4 1/2 (MD) and his sister Kennedy 2 1/2 complete our family of 4.
Wow, it is scary to see how many RN's have boys with DMD. I too am an RN in a pediatric ICU. I noticed that you son has a large deletion and was diagnosed early. How did you get a diagnosis so soon. Wyatt, my son was diagnosed at 15monghs, by accident. I just wanted to say hi.
I wanted to introduce myself since we live relatively close to you. I am Lauren, and my family (husband John, and boys Jake (5) and Ryan (2) and cat and dog!) live in Pottstown, PA. Both boys were diagnosed with DMD this past summer. We have met with a couple of families, and are always open to meeting others. Its really important to me to grow a community where the boys will not feel alone in what they adjust to on this road - whatever that may look like. I am a therapist and John is in sales. WIll you be at the walk next weekend? Hope to hear from you! Lauren Fritz
My wife Niccole and I live in Quakertown. I beleive that is 30mins from Kempton. We would enjoy meeting you and your family. My wife and I found about our son's disease this past May. It has taken awhile to come to terms but this site has helped alot. We have meet some awsome people. I work at Lehigh Vally Hospital as a CRNA. My wife Niccole is a PACU nurse at Abington Surgical Center. We would love to meet you and your family. You can e-mail my wife (email@example.com or firstname.lastname@example.org). Take care and hope to hear from you soon.
Hi Jessica. Thanks so much for the pictures from the airplane pull. The pictures were awesome. We had a great time pulling for Patrick. We can't wait to do it again next year. The kids are fine and everything is all well. We hope to meet again in the future. Take care guys.
Victor SR, Jr and Kimberly.
I would love to see pictureles of your new dog! Believe me I totally understand. It is so hard some days, but it does help to keep busy so your mind won't wonder. I was never a person that lived day to day and always had everything planned out and how it was going to be. Now, since I don't really know and sometimes my mind can go too far forward and I start thinking of the worst. My husband and I really try to live each day and enjoy that day as much as possible. We also have new energized hope. We went to the PPMD roundtable in Canada. We met Pat Furlong and had a really good opportunity to talk with her. Pat Sweeney was also there talking about the upregulation of utrophin. They are very excited about it and it seems to be working better than they thought. The utrophin upregulation drug will be a pill and will work for all Duchenne boys. There still is a few years until trials,but there is real hope for the boys. I wish you all the best of luck and never loose that hope because it's real!! Tonya :-)
I've heard of casting but don't know much about it. YOu can email Dr. Wong about it. They do this at her clinic. Mark doesn't need this so I haven't looked into it. Possibly there is a thread already started on this subject. Good luck. But, I do know that Botox injections are contraindicated for our boys.
Here's my email address. Keep in touch.
I read your story on carrier Mom's. I too am a DNA carrier of DMD. Keep in mind there is PGD/IVF, which can test each embryo to make sure either the female or male doesn't carry the mutation. My husband and I have a carrier daughter almost 4 and Gavin 2 1/2 with DMD. We are currently trying the PGD route to have more children. It is a lengthy process, but it's the option we are choosing. You may have already been aware of PGD, I just wanted you to know if you do want more children that it's an option for us carriers. What a darling little boy you have!!