Julie Garcia's Comments

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At 9:39am on July 4, 2009, Mortman said…
Hi Julie,
I cannot believe Mike has graduated! He also turns 18 today! I am getting old.
We had a huge party for him last weekend with over 150 at the house to celebrate his graduation. His classmates gave him a standing ovation when he received his diploma. It was very moving considering he has a class of 600. He really made an impact on the school, the kids and the teachers. They also dedicated the yearbook to him, with his own page. Pretty cool.

Lung function for both boys is getting pretty scary tho. Andy's Dr is adament about traching and venting him. He does not want to hear anything about it. Both boys are pretty determined to keep their quality of life without any mechanical intervention for as long as they can.
Take care,
Ed
At 6:37am on June 30, 2009, Teresa Buchanan said…
Thanks Julie! Take Care.

Teresa
At 11:26pm on June 7, 2009, Debra Canter said…
thanks for connecting with me here in the PPMD community. I haven't utilized this site very much. I'm glad you reminded me that it is here.
At 10:07am on June 6, 2009, Star Bobatooon said…
Thanks Julie. Looking forward to seeing you later this month.
At 12:12am on June 4, 2009, Rhiannon Traigle said…
Julie, Thanks so much for writing to me! I am sorry to respond so late! I have kinda fallen off the ppmd map for a while...I guess since DC I just needed a little break. We are doing great here. I am still debating on the conference...not a lot of money right now. Are you going?
At 10:43pm on May 29, 2009, Jo-Anne said…
Thanks Julie, so do you. They are precious in every way. Would really love to meet you one day. Thanks for all the chat on FB too, it is gr8 having a friend to talk to. I see there is a conference happening in Atlanta, are you going to this? Would love to go one day too. Love Jo
At 6:05am on May 29, 2009, Jo-Anne said…
Hey Julie, found you on PPMD too. Hope you are all well. Love Jo
At 2:36pm on May 25, 2009, Tammy said…
Hi Julie
I just had a chance to check out Nicks website...it was very well done. I cant believe he is graduating next year!!!!!! How exciting. I know my head is spinning with graduation and college stuff ....there is sooo much to think of especially college stuff. Yet it is all so exciting!!! Again I will get back with you on the things we talked about last conversation. k
love
tammy
At 6:20pm on May 12, 2009, Tammy said…
Hi Julie, it was sooo nice to talk with you too. Lb7171@aol.com is the address. I will get back to you soon on the other stuff, I am running behind. Josh's honor roll awards are in 1/2hr. and I need to get everyone together. talk to you soon
love
tammy
At 10:01pm on April 29, 2009, Julie said…
I am doing good. I'm tired alot but that is expected. Yes we are interested in coming on May 17th. Good to hear from you. Hope to see you in a couple weeks.

Julie
At 11:33am on April 20, 2009, cheryl cliff said…
I guess all there is left for us to do is to keep going. I hope things work well for your husband. No doubt things can only go up from here but the state has been in such a mess!

take care and stay well
cheryl
At 3:50pm on April 19, 2009, Karen Barnett said…
We'll catch up eventually! I have been running here and there non stop for about 5 days now. I'll talk to you soon!
Karen
At 9:43am on April 19, 2009, cheryl cliff said…
Hi Julie

Nice to hear from you, how are things going? We are ok...not much good happening in the world really. Besides this DMD stuff the recession has taken it's toll on us in SoCal. We've lost some of our intensity to fight duchenne because we have to focus on other things for awhile. What's next? Sometimes I feel like the sky is falling! Hope you and Nick are doing well...
At 2:01pm on April 16, 2009, Joel Rhodes said…
Looking forward to actually meeting you in person tomorrow. My number is 408-710-9673.
At 12:36pm on April 15, 2009, Joel Rhodes said…
Just wanted to let you know, I put a response on my facebook account, and so far have received word back from one of my friends who has just called his reps (both house and senate) from Little Rock, AR. Got to love how technology makes it easier to band together for a purpose.
At 11:36am on April 15, 2009, Joel Rhodes said…
Levi has his appt. at 8:30 this Friday. I plan on getting there by 8 to get him checked in. I am not sure what time we will be done, as we will be discussing the steriod treatment for him at this time. We are torn on if this is the best approach for him or not. So, with that being said it is just going to be me and Levi, and we would love to meet you. Let me know what would be best for you.
At 7:47pm on April 14, 2009, Joel Rhodes said…
I just got off the phone with Stacy, and she said she has already sent the letter on. She even said she should would call with an update tomorrow.

On a side note, Levi and I will be at Shriners on Friday. If you are free at any time let me know.
At 1:51pm on April 12, 2009, Tammy said…
Hi Julie,
Happy Easter!!!!! Hope you and your family are having a wonderful easter.
We are doing great. well the baby is wrestling me right now trying to get to the keyboard. Call when you can, havent talked in awhile . type you soon the the baby isn't attacking lol

miss talkin to ya
tammy
At 12:40am on April 12, 2009, Kim Innabi said…
Hi Julie:

Happy Easter to you and your family too! We all missed you on Friday - we will have to do it again when you can come too. It was so nice to meet Polly and Le Ann in person and the kids had a great time together. I am just here looking around on the PPMD site - I get more info than from Facebook! I have gotten a few different opinions about the stander feature and the Permobil brand as well. It's a little confusing. Is the stander used only for therapuetic purposes, or is it also used if Nick wants to just raise up (I'm beginning to think I have the stander mixed a little bit with the elevator). Does Nick have that too? Did you try different chairs? Too many questions!!! I trust your judgement though - you probably looked into everything very well I'm sure!!!

Hope the Easter Bunny brings you lots of hugs,

Kim
At 11:43am on April 4, 2009, Char Burke said…
Hi Julie,
Do you recall telling me in a discussion about duplications - that some Sacramento MD doctor said that duplications were not as severe as deletions? I wanted to ask if he was talking about duplications in the beginning of the exon or just in general all over the gene? Also - are you all using idebenone and if so, did you notice a difference and where do you get it? Thanks. Char

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