Glad to hear from you. Tuesday we leave for our trip to see Dr. Wong. I will keep you posted. I read Liams caringbridge site all the time, I just haven't posted anything. Your family is in my prayers all the time. I will be at the next meeting with Trisha, and hopefully her sister. We now are dealing with this monster disease with 2 boys in our family. Hope to see you soon. Take care Pam
Eric and I got back from Cincinnati on Friday and all went pretty much as expected there. I know we could get all of what was done there done locally, but I definitely think that the experienced, total comprehensive care is worth it.
Since my return I have been working on the TB test, ordering Deflazacort out of the UK, filling out MDA paperwork. Michelle and I have been also working on the nutritional aspects. Now I am onto next steps of getting the AFOs, a Nada Chair and will then begin working on putting together the stretching regimen.
Thanks for dropping Doug a note. They actually got in to Cincy last week on a last minute cancellation. I was glad for them.
We are having thunder snow with hail in some parts of Texas. It feels very cold here today since we have been having some 80 degree days.
Flat Stanley is on his way home. I had some technical difficulties and was delayed in sending him. I couldn't get a paper copy to print. I sent him home with power point documentation! It is formatted to play on any computer. Tell Jack thank you for sending him to us. We had fun with him.
Sorry that I haven't gotten back to you in such a long time. I was wondering if you are planning on going to the DUchenne Connect Conference in June in Atlanta?? My husband and i just started to talk about it. Hope all is well, Jessica Arndt
I understand the jealosy thing. I would feel the same way, believe me. I actually often feel guitly telling people the boys have a premature stop. It's just not fair that there isn't something out there for everyone at this point. That must be really tough to negotiate all of this stuff with your other kids. As much as I hoped and prayed and begged God not to let Henry have DMD too, sometimes I think it simplifies things. We actually don't go to Cincinnati, I just remember you & Rhiannon talking about it. We considered it at one point. We see Dr. Tennekoon at CHOP regularly and now Dr. Finkle with the study. CHOP has been an up and down experience. First of all, when we used to tell people we see Dr. Tennekoon, people were like, "Who is that?", even Kimberly and Pat when we first talked to them about it. I think normally Tennekoon did not take on the DMD cases, but I think there seems to be an increase, so he is taking more on. Most of our problems with CHOP are administrative: lack of communication b/w people, poor response time despite numerous messages, etc. They hired a new coordinator last winter, so that has improved, but they still don't seem as aggressive as Dr. Hwong. We'll have to see how things play out with the clinical trial. I may pick your brain again at some point regarding the behaviour issues you have had with Liam. That was another frustrating point at our last visit at CHOP with Tennekoon. When I mentioned all the behavior stuff to the fellow, Dr. Foley, she made note of all of it and when Tennekoon came in and she mentioned it to him, he blew it off a bit saying, "He's 5. This could just be 5-year old behavior." So I was annoyed, but don't know where to go at this point. I am going to mention it to Finkle when we see him on Wed. and get his take on it. Paul says I'm over-analyzing, but I would swear Elliott has Asperger's and/or attention deficit of some kind. It's just my gut feeling. I'm off to run some errands before I pick up the boys from school/daycare. It's a rare opportunity with me & Paul having off for President's Day and being able to put the kids in daycare. Take care. Again, it's been great corresponding with you. Thanks for the insight. I'll be in touch.
Thanks for your message. I am bummed about not being able to make it to conference this year too. But this is a vacation I have been taking with my sister (who was in DC with me), her family and my parents for the last few years. The prices are so much cheaper in June for us to go to the Jersey shore, you just can't beat it. I really do hate to miss it as I love meeting up with the other parents. You are correct in that it is so therapeutic. I always feel so empowered too. I am feeling that way after DC. I will defintely be back next year and my sister said she would too. I was so glad she could come and experience PPMD for herself. My sister emailed Pat Furlong in the beginning of all of this mess, when we were still trying to determine Elliott's diagnosis, and she responded right back with this incredibly gracious email. I will never forget it. As I'm sure you will agree, PPMD is everything to me.
Anyway, my boys are doing well. Henry is still so little, the average person would see nothing, but put up against another 2-1/2 year old, the difference is marked. We are incredibly lucky and grateful that they both have premature stops, and we were able to get Elliott into the PTC124 trial (we were one of the last admitted). So far so good, he is taking the meds, which at this point is the best we can ask for. We go for our first follow-up on Wednesday, so we will see if there is any improvement. I think his endurance is up slightly, Paul thinks he is taking the placebo. But no matter, we are in the trial and that't the most important thing right now. We are having a lot of difficulties with him in school this year (attention problems, high frustration, lack of coping skills when faced with a new situation and social issues). He has a great teacher and she has been working with us and him really well, but it is frustrating for me in that there is no clear solution. He has good and bad days. I try not to get too excited about the good days and not dwell so much on the bad ones. So again, thanks for the message. It was great to hear from you. Hope you and your family are well. When is the next time you take Liam to Cincinnati?
Fifty degress is beautiful??? That's why I needed all my winter-wear - because it was in the 50's here! Just kidding - I think at times it was in the 40's - ha ha. Nicholas is having severe anxiety attacks lately - I just got done talking him out of one a bit ago. He starts thinking something is wrong with himself, then his heart starts racing and he gets anxious and feels like he is going to pass out and he can't breathe. I've had him to the doctor for this numerous times (Nicholas always wants me to take him to the ER, which pretty much means the whole night sitting in the wating room and by the time the doctor sees him, he is fine). His cardiologist told me to just calm him down and take his pulse - that it is all in his mind, but that is pretty difficult!. Sometimes Nicholas even tells me he is having a heart attack - he's a very dramatic child! He is worrying a lot ately (I had to pick him up from school early yesterday because of this). He can't explain to me what he is worrying about, but it manifests itself into these physical symptoms. It might be that he notices that he is having more trouble getting around than before. Does that ever happen to Liam where he worries about himself? Well, that wheel chair is going to be my battle - but I plan on winning (just don't know how yet). I have to go put Nicholas to bed. Keep in touch!
Kristin- Just wanted to drop you a quick note. I enjoyed meeting you and talking while in DC. It was my 1st advocacy conference and certianly not my last. What an amazing experience (as all PPMD events are)! I don't know where I would be without them and all of the people I have connected with as a result. Hope you had a safe trip back. Take care.
Hi Kristin - It was great seeing you in DC! It was a nice trip...we walked our feet off both days with so many meetings, but they went well I think. It will be a lot of fun in Atlanta - I've never been and I'm looking forward to it. Can you believe it's colder here in CA than it was in DC? I have on long underwear, a shirt and a sweater, plus my Uggs! There's even snow in the mountains above us. I'm freezing!!!! I have to get on FB - I think I'll need my daughter's help. I might have time this weekend even . Take care and talk to you soon!
Wow. That is awesome. Nick is the 2009 MDA Goodwill Ambassador for SE Wisconsin, so I'm going to need to hone my marketing skills to encourage collaboration on the PPMD front. Is Liam starting the growth hormone?
You DROVE???? Wow. I can make it to Cincy (the journey through your neck of the woods being the most stressful), but farther than that is just a little too far...How do you know/did you snag Bill Kurtis as your speaker? Is he from Chicago?
I knew about the hefty price tag--I'd received a full-out invitation in the mail upon my return from Disney. :) We'd really like to support your efforts, though, and I'm dying to hear how you were able to get this event organized.
I did the half as well--and I was freezing throughout. Usually my hands warm up w/in about 5 minutes of running, but they were positively pink the whole time! I looked around for you at the pasta party and didn't see you...was a little worried the snow had held you back, as they had to deice our plane in Milwaukee 3x before we got out Friday morning.