I've sent you a friend request so that way we can send messages to each other with our contact information safely. I would love to meet you and your son. Kyle may be fifteen as the story is told, but it is important that I understand the entire progression of Duchenne. Thank you for responding and taking the time to help me. Warm regards,
Thank you Nana for your comment. We are going to our local MDA this Thursday and one of the DMD mom's I met through FACES is giving me her son's old wheelchair. We are definitely feel blessed to have my son's immediate needs met. At least now I can focus on what is ahead of us and relax a bit more now. We'll be looking into a power assist scooter or chair since he could use it at school which would help him conserve his energy.
My name is Ron Kohudic. I work at Siren Interactive, a digital agency in Chicago that is focused on understanding the needs of patients and physicians dealing with rare diseases. I am part of a small group that is doing research in order to develop new technology to help boys with DMD and their parents, caregivers and health care professionals within the community.
Please let us know if you would be willing to speak with one of my colleagues or me in order to help us better understand DMD from your perspective, as well as to better understand your needs or any specific areas that we could potentially assist you in treating boys with DMD.
Please let me know if we can contact you at your convenience.
Thank you for your time and cooperation in this effort.
So sorry I haven't responded sooner but was very excited to hear that Charles enjoys his Aflac duck! Garrett just turned 10 and last fall we got a new van for him to drive his power chair into so we don't have to lift him into a vehicle. Hope all is well and we must catch-up sometime! - Ronnie
Thanks for accepting my friend invitation. Charles is a cutie...hope he's doing well. No, I have not received an email for the next meeting...I am interested in attending so please pass this along to Sandy. Thanks and hope to talk to you very soon!
I am compiling my demographics at this time. Wondering if Imay have your age and education level. Highest degree earned. I will share this with no one. Just working on my tables. How are you and Charles? He really is a very cute boy!
NANA!!! Just wanted to check in on you and see how you and Charles are doing...I totally apologize for the delay, but little Treyman and the US Navy have me running from appt to appointment, it is crazy...I would like to brag that the insurance is FABULOUS, but I feel like they are making us do WAY more then we actually need him to do...2 different schools they have enrolled him in a Speech School (6 hrs week) and a Private Pre-K (12 hours wk) then 2 PT, 2 OT and an inhome one on one speech session once a week...it's INSANE...I pray that it will slow down and he doesn't get exhausted with everything...
But did you have a good Christmas and New Years? I hope you guys had just a fabulous time!!! If you need to talk remember that I am here!
Little Charles sounds alot like Little Trey =)...does he get 'stuck' on certain stuff? Like he will say something you will then respond and then he will just keep saying it? I just say that this behavior is just our Treyman, but I am starting to wonder LOL...
The Isomers, no problem, still don't understand, but I am not to bold as to keep asking for help regarding understanding it...I sometimes feel like an idiot when it comes to those things though!
I have noticed that Trey is very routine oriented and secondairly to that he learns best hands on, but don't most kids LOL...But for now he is doing very well in school...I can't imagine though being like you and homeschooling, I don't think I could get Trey to sit still long enough nor have the patience to do it, so although it has crossed my mind, I say KUDOS to you! I have never seen that huge of a deletion...how is he progressing if you don't mind me asking?
Nana, Good Evening to you and your famiily. I am just digging myself into finding out all I can about DMD. All the while not liking what I now about it. Not liking the feeling of not having a real plan of attack. We have are waiting the results of Christian's genetic test and hopefully won't have to wait much longer. We went to our very first MDA Clinic last Thurs, Nov. 5th. It provided us with some useful info but mostly it impressed upon me the fact that our family is still in a waiting game. Waiting for the genetic results to see what is shows. Pending those results comes the option and decision to go on steriods. I was told that we should contact either or both Doctors Wong and Mendell in Ohio for any clinical testing they may be doing. There is such a feeling of belonging here on this site. No one in my community is familiar with what DMD means. I find myself explaining it to everyone I ask. I finally convinced my son's ped to run his ck levels and check for MD just a month ago and this last month has been such an emotional blur. Thanks for your kindness shown on my page and it is nice to have a "place" to go where others know how I feel. --Jenise in Michigan
Hi Nana - I remember you there with your folks and so glad to hear from you again. Glad Charles likes his duck. Garrett turned 8 in February and shortly lost his ability to walk unfortunately. We have a power chair on order with Aetna that was approved so we expect it by the end of the month. It's something he's looking forward to so he can be "free". Chicago seems like such a big switch from Florida and hope all is well.
Thanks for checking it on us yesterday...we are doing well. Trey had a doctor appt with his primary yesterday before we meet for the first time with the neurologist (next week) to get the rest of his CBC back. Everything there (other then the CK levels) came back clean...I guess that is one thing to be greatful for and another 'monkey off our backs'...yet they didn't test his Thyroids like they said they would and although hubby and I have been spared of having those problems, it seems that everyone else in our family is hypothyridic (which in child cases can present like md)...fustrating how they tell you they are going to do something and don't...grrr! Next week we are scheduled for the Thyroid, DNA (scary), and CPK recheck...
You and your family have a WONDERFUL holiday weekend...my little booger turns 5 next week and we are having a carnival for him...how exciting!
Thank you Nana for your kind words...I feel like my world is unraveling at the seams right now...I know that he doesn't know anything is wrong so he is being the same ole' litte rugrat we have always had, but my heart, well you can imagine, you have been there... I have never wished something upon myself so much ever before, or never wished anything away as much as I have with this...I never thought this would be me, would be us...yet back to reality I go... Especially when I thought, even after being a PT, that his ackward run was due to a tight achilles cord and was just hoping to get the botox injections to help him with it...I never thought we would be here.
I sit here and wonder how you all do it...how you pick yourselves up and put yourselves back together again and deal with it, when we don't even have a definite diagnosis... I sit here and pray that it can be ANYTHING but THIS, and that I can be a strong advocate for this disease if it is ANYTHING but THIS. I'll run the marathon, I'll do the fundraising, I'll do whatever it takes as long as it isn't this...
I'm fighting my demons right now obviously...thank you for thinking of me, of us...tomorrow we go in for the results of his CBC and to get the official referral to the ped neurologist and potentially redo the CPK as he did have some things against him at the time it was initally done...hoping it is a congenital hypothyroidism problem at this time as I guess it can harbor many of the same sympoms as this...