Julie Garcia's Comments

Comment Wall (76 comments)

You need to be a member of PPMD Community to add comments!

Join PPMD Community

At 9:10pm on March 28, 2009, Doriann Myers said…
Hi Julie, I received your note that you have relatives who live in Las Vegas. We just had a our annual "Stride and Ride" walk today. It is sponsored by the MDA. It was a beautiful day and our team won an award for "Top Fundraising Team". My son Tyler is 12 years old and our team is named after him "Team T-Man". Hope you are enjoying your weekend.
Doriann
At 5:51am on March 27, 2009, Jo-Anne said…
Hi Julie, I got your message thank you so much, this is far easier than FB but I am also on email if you like which is better too. My email is jopretorius@iinet.net.au. Speak to you on there and will read this web page of yours to learn more. Thank you for writing to me, I appreciate all the contact, have much to learn still. Love Jo
At 6:04pm on March 17, 2009, Christina said…
Hi Julie,

I'm definitely planning on coming on the 28th. I'm not planning on bringing Joseph, unless there's a need to have him there. He would not be very patient!

See you then!
Christina
At 12:48pm on February 26, 2009, Patti Frank said…
Hi Julie,
Thanks for adding me to your friends' list. I have to get all my PPMD friends' e-mail addresses together and add to my friend's -- I sound dumb -- but having a little bit of trouble getting going with the new site -- but I will figure it out.

You are a great friend and I really wish you lived out East so we could see you more, but it is always great to get your e-mails and fun to see you at the conferences. Check out Kevin's site, I updated it on our trip to Cincinnatti. As you know, we got a lot of help getting there this year from our town friends. I'll send you a private e-mail soon. FYI -- Gene finally got a new job and started this Monday -- Thank God -- after six months. It was nice to meet your son this year at conf. -- he seems like a cool kid -- love the photos.
Talk to you soon.
Love,
Patti Frank
www.caringbridge.org/visit/kevinfrank
At 1:18pm on February 21, 2009, Christina said…
Hi Julie,

I hope all is well with you and your family. I'm sorry I haven't connected with you since our first meeting. I never realize how hectic the holidays are until they're over! I would love to get a group of the local mom's together, maybe in March? Let me know if you're interested. I know we're all very busy, but it would be great to connect.

Talk to you soon!
:-) Christina
At 6:28pm on February 16, 2009, Gregory said…
Please join our San Francisco Bay Area Families group.

Greg
At 1:11pm on February 15, 2009, Char Burke said…
Julie - Read article that I posted on the group duplications site....Char Burke
At 12:03pm on February 15, 2009, Kim Innabi said…
Yes, I did give him my vegetables - and I was happy to see a boy that wanted them! My son would have been asking you for your dessert (and your vegetables too!!!). Have a great day!!!

Kim
At 1:34am on February 15, 2009, Kim Innabi said…
Hi Julie: It was also great seeing you in DC and catching up when we got a minute between all those meetings! You are an amazing mother and advocate - and extremely persistent as well!!!! Tell Nick I'm very impressed with his computer skills and he is doing a great job with school. I don't know if he will remember meeting me in PA in July. I hope to see you in March - keep in touch and take care,

Kim
At 12:53pm on February 11, 2009, Polly Sundeen said…
Hey! You are home! I got your message when I got to work this morning. Call me when you have time. Hugs!
At 12:41pm on February 8, 2009, Deirdre said…
Thanks Julie! I look forward to speaking with you. Have fun in DC!
At 1:07pm on February 5, 2009, Deirdre said…
Thank you so much Julie. I am joining this group because I am so scared my son has one of the MD's.

Let's just say I feel as if I am waiting for the other shoe to drop.

Keaten born in March of 06. Got first shots in May, then spent the next 21 days in Oakland Children Hospital, almost died, blood transfusions, spinal taps, the whole 9 at only 8 weeks old. (they say was not a vaccine reaction, but we're not sure)

After that, his liver reads were totally out of whack, for months. So we did all of the hep tests, because of the blood transfusions. all clear.

Then finally at 1 1/2 he had a liver biopsy, all clear.

During this time they noticed his CK was elevated (and stayed elevated) for months and because there were other pressing issues with him, like 6 months of GERD! and they skated around the MD issue, but talked about it in hush tones, you know doctors they get so specialized and wont go outside their comfort zone.

Anyway, he is almost 3, and still gets so exhausted. He sleeps through the night 8:30 pm- 6am and still everyday takes a 4 hour nap. If he misses his nap the next day he is toast, and sleeps all day.

I have told docs at Stanford about this and they joked if only they could sleep so much.

Of course with the MD, in the air I have read about it.

It is hard not to see things that make me worry. Like the extreme fatigue after activity and just in general.

Walks on his toes, a lot. His calf do not feel like his sister, kind of rubbery and when he is really tired he sleeps with his eyes open.
He always goes up steps left foot first one at a time still cant get the two foot gait down.
He also crashes a lot.

I guess I joined just to talk to other moms about their experiences. I wrote the MDA group that is in Modesto,Ca (close to us.) and the lady said they were ready to see him at UC DAVIS, whenever. But I am nervous. Another doc said time will only tell.

Problem with Oakland and Stan they don't really treat for this. So I still worry somehow it will have been missed.

argh. He also keeps having an elevated body temp. That stays at 99-101, but I am told not to worry.

darn Keaten says I have to leave the computer, I talk to you again....

Thanks, I really feel like I need to talk.

Deirdre
At 1:09am on January 29, 2009, Kulwant Pannu said…
Hi Julie. It has been a long time since I touched base with you. Just wanted to see how things were going for you and Nick. I am going to have some time next week, let me know what your schedule is like and maybe we can get together for lunch or something. It is long overdue. Talk with you later. Kulwant
At 8:37pm on January 28, 2009, Cathie Bullis said…
Hi Julie,
OK, I have photos up, however, I need to go back in and fix some. I was just fumbling around so there are some photos I want to remove (blurrry) and I will figure out how to turn the few right side up later.

Thanks for gently insisting I get on this website, I am glad I did.
I also will be adding the more current photos, Michael doesn't look like this little tiny boy anymore, the meds have certainly made a huge change in his body mass.
Thanks
Cathie
At 12:03pm on January 26, 2009, MicahsDaddy said…
Hi Julie,

Not sure there is any other way than how you posted. What exactly were you hoping for? A way to create a list of people in one body rather than having seperate responses to the thread?

Let me know.

Thanks
Christian
At 7:05am on January 7, 2009, Mortman said…
Hi Julie,
Happy New Year!
We are off to Disney one more time in a week. Didn't know if we would make it after Andy got sick this fall.
It will be a busy year with Mike graduating. Let's hope they boys can stay healthy.
Take care,
Ed
At 1:00pm on January 3, 2009, Christine Piacentino said…
Happy New Year to you and yours also.
At 10:24pm on December 29, 2008, Cathie Bullis said…
Hi Julie,
thanks for getting me on the site. I don't know how to upload the photos of Michael. Can you help?
Cathie
At 2:51am on December 28, 2008, MicahsDaddy said…
Hi Julie, have a happy and safe new years.
At 12:57pm on December 25, 2008, Brian Denger said…
Merry Christmas to you and your family Julie. I wish you all the best in the coming year!

Brian Denger

Need help using this community site? Visit Ning's Help Page.

Members

Events

© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service