Congratulations to you too! I am 24 weeks along now and the IVF and OHSS already seem like a distant memory. Funny how that happens when you feel your baby moving around every day. :) Hope things continue to go well for you and your family!
Melissa - next week PPMD Pat Furlong with be in town starting up a group called F.A.C.E.S. and I didn't know about it until someone sent me a copy of the email. If you are interested, send an email or post to Katherine who started the PNW group. Hope all goes well with Wyatt and family. Fondly Char
Hi, Melissa! How's little Wyatt and the rest of your crew?
Only a week until our Dr. Wong visit. Can you give me any tips on what to bring to the actual appointments? I know we'll need a stroller, snacks and small toys for Max, pen and paper for us. Anything else you can think of? Did Wyatt stay with you for the duration of all the appointments? These little guys are so smart, I'm a little concerned about what he might hear. I'm thinking of bringing headphones to plug into our I-phones so he can watch Playhouse Disney videos on u-tube. My big guy still nurses, so if I get really desparate for him to behave I can always offer that! Hope y'all are doing well!
Hi Melissa, We had a meeting for a fund raiser for PPMD tonight. It's going to be a comedy event in Kirkland on 7-11 from 6-9pm. There will be silent auction too. Do you think you could come? Tickets are $20 and if you know of any businesses that would contribute gift cards, say $25-50, that you be great.
Also - I already emailed Tonya too....I also heard tonight that there will be a Faces official start on 5-24. That's a group of parents fund raising for PPMD here in Seattle. The groups are all over the country. Pat Furlong will be here.
Please let me know what you think would be do-able. Thanks and I hope Wyatt is doing well. We just got back from Cincinni and seeing Dr. Wong and Rutter, etc.
Just back from Cincinnati and Dr. Wong says Will is doing well. That was so good to hear!
The comedy event is on 7-11 in Kirkland. All proceeds go to PPMD. The tickets are $20 each. If you can't make the event, you could consider donating some type of card or item for a basket, etc. - since we are having a silent auction too. If you know of any business owners that would support PPMD efforts, that would be helpful too. Again all proceeds go to PPMD 100%. Thanks Char
Melissa - I am working with a group of Seattle people fund raising for PPMD. It's going to be a comedy night thing and I am hoping that you and husband can come and bring some people. It will be in Kirkland and in June or July. Hope Wyatt is well. We travel to Cincinatti shortly to see Dr.Wong. To be continued, Char
I think it is June 26 to the 28 in Denver. I will call Ryan and get the details. I think there should be a rule to be a doctor. #1 Always HOPE!! My Dx let us leave and never even wrote down what Tanner had. We got home and my family was screaming and crying and we couldn't even tell them what it was. My sister had to call the Dx and ask. What a nightmare! Tanners only clue for us was he walked slow and had a litlle gait to his walk. I took him to all our dxs here and they said stop comparing him to our other kids. I just always new something was different. He doesn't fall or have large calf muscles. He just goes up steps on his knees or has to hold on to a banister. He moves slow but he crawled at 6month and walked at a year. So we didn't see this coming al all. How did you even find out Wyatt is so little?? We are a lot happier now. I just think we have to make every day a great day. I just get nervous when we have to go back to the CHOP. Dana
Thank you he is beautiful!! Will you be going to the conference in June? I was reading your bio up top and you were told the same way we were. March 5th was the beginning of our nightmare 2yrs ago. I am in a way better frame of mind now. I do think things will be different for us. I hope to meet you in June if you are going. My friend went last year and said it was awesome so we are going to make the trip this year. Dana
I have not seen the arginine in liquid form but I did find a powder at G'l. Nutrition Store that has 3600 MG of Glutamine and Arginine - it comes in a powder like Koolaid and you mixed it with water. It has other amino acids like l-leucine, l-isoleucine, l[valine. You may want to ask Dr. Wong about it b/c Wyatt is so young. Char
Melissa- What's the name of the antioxidant drink that you are starting Wyatt on? Dr. Wong also mentioned D3 2000 iu's and Arginene which is an amino acid and it helps with the production of NO nitric oxcide which helps with something with metabolism of the production line of dystrophin. That's not a good explanation though....I am glad to hear that he is doing so well.
You know, someone helped me out when Will was first diagnosed....Pat Furlong and others. It was the hardest year of my life - Will's diagnosis and then my mom passing on. But, it warms my heart that I was able to give you hope - and really, Wyatt has alot of time and I think there will be something for him by the time he needs it.
To be continued,
Hey Melissa - Good to hear from you. I'd love to hear about the supplements that you purchased for Wyatt. Also - did Dr. Wong tell you anything else about Wyatt's condition? Sounds like he is doing well. I have Will on GH therapy and no height gain yet but doc just upped amt. so we should see some weight loss and height coming on. Dr. Wong said no weight gain for the year- well, that's aweful hard with a growing boy....Happy New Year - Char
I waited approx one year to start Protandim only b/c Robert's weight was lower than 25 lbs. As soon as his weight reached 25 lbs I started Protandim. He started CoQ10 very early 7.5 mths old so that is why I had to wait long time before he reached that weight. You can start them anytime really. Again, unfortunately, I cannot make him take it every day, he did for a while. I give it to him every day but some days he just does not want to eat the yogurt or other foods I put it in (I tried to put it in Nuttela, pretzels etc.)... it has a very bitter taste (I tried it myself :-)).
Some days I wish I could have a crystal ball to see how the future will be for Robert, but I don't. I am confident that many boys will have a far slower progression, I just do not know if he will be one of them. I hope he will.
So you waited an entire year. Oh, good to know, I was thinking like a month or two.
I agree. Tom and I met this boy a few months ago who is 16. He's very dependant on his mom. He had a difficult time holding silverware, glasses etc. Tom said to me yesterday that he is so worried that Wyatt will be like that too. But then I told him, he has to not forget about advances in science. A boy with DMD in 2009 will have a very different outlook (I hope) than a boy with DMD in 2015. Think about how far we have come already, exon skipping, who would have ever thought of that?
Robert's CoQ10 level was normal. 50 mg is such a low dose that I decided to increase to 100 mg knowing that it doesn't have side effects. Yes, 1 pill of Protandim for a boy 50 lbs+ would be fine. YOu can start in any order, I first started CoQ10, then 1 year later I started Protandim.
I really think that the future will be different for our sons with exon skipping approved as part of a medication cocktail including ACE inhibitors, anti-inflamatory, anti-fibrotic etc. I think anti-oxidants like protandim, idebenone etc. will be part of that too.