Polly Sundeen's Comments

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At 8:29pm on October 5, 2012, thomas m golf said…

my son was 7 yrs and i am lucky he is still walking if you need to call me please do my number  is 708 8782599

At 11:37am on August 14, 2010, thomas m golf said…
he gets aound very good
At 11:36am on August 14, 2010, thomas m golf said…
hi my name is tom golf my son has dmd 46 -47 and he is 8yrs and he still get very well how bad is this type of deletion
At 5:46pm on September 30, 2009, Evelyn said…
Hi Polly
This is Evelyn Nellius. we met in Ohio last week. it was nice to chat with you. I hope your visit went well. Thanks again
Evelyn
At 8:44pm on August 2, 2009, Char Burke said…
Hi Polly - Cole looks great - he looks so thin from his photos. What are you doing that he does not seem to be getting any weight gain or puffy face from the deflazacort? Char Burke - Will's mom in Seattle.
At 4:28pm on March 26, 2009, Jean said…
Polly - thatn you for your quick reply re: Masters. I am the grandmother, and have relayed the info. to Peyton's mother. They are on the way to Dr. as I write. Love your pics. Cole looks a lot like Peyton (same age) expecially in pics. 2,3, and 10. Love your page. God Bless, and thanks again!
At 12:15am on February 19, 2009, christine good said…
Hi POlly,
I was told you may have some good info on charitable flights to Ohio. Can you pls help me with my 1st appt there?


Christine
At 6:36pm on February 16, 2009, Gregory said…
Please join our San Francisco Bay Area Families group.

Greg
At 11:40am on February 1, 2009, Lynne Taylor said…
Hi Polly
I have just joined the deletions group. I noticed that Cole has deletions of exon 46-47. My son Ross is 14 years old and has an out of frame deletions of exon 46 & 47.
best wishes
Lynne
At 1:57am on December 27, 2008, Kim Innabi said…
Hi Polly - The Eiffel Tower is done!!!! No help from me needed -good thing for that - I'm no help with anything but supplies sorting baggies! I added a picture on my page - Nicholas was so proud of himself! Talk to you soon,

Kim
At 10:33pm on November 16, 2008, Kim Innabi said…
Hi Polly:

How was your trip to Cincinnati and how are you doing? Great I hope. Sorry I wasn't able to reach you before now...craziness around here still. We definitely need to get Kaiser to do more for us. I have had nothing but problems with them. I'm still waiting on a few different things, including the wheelchair, growth hormone and a sleep study. The first two are "NO's", but I have to work on that once I get the written denials, which I have not gotten yet. I'll try to call you this week sometime. Nicholas is going to be home on Tuesday because his class is going on a field trip and it's too much work to get the scooter on and off the bus (plus I have already been on this field trip before and don't feel like going to Our Lady of Angels Cathedral again). Lucky Nicholas...gets another day off!!! Talk to you soon and take care,

Kim
At 4:44pm on September 30, 2008, Lin Heald said…
Great page Polly! Thanks so much for sharing it with me! What a handsome family you have.....Cole looks great and like he's enjoying the summer....... Let's stay in touch!
Lin
At 12:12am on September 18, 2008, Traci Rico said…
Hi Polly,
How are you? I have not talked with you in a while. When do you all go back and see Dr. Wong?
~ Traci
At 12:43pm on September 12, 2008, Kim Innabi said…
Hi Polly: Thanks so much! I will be in touch when I get back from Cincinnati. By the way, the Taj Mahal is in the mail - boooooo. Maybe it will be built by the time I get back!!!! Take care,
Kim
At 5:26pm on September 4, 2008, Tina said…
Hi Polly,

Let all email each other. Can you contact the others with the same deletions as our boys?
My email is cmgcarson@comcast.net. Give me your email address and I'll email you what Mark is currently taking. It may not get to you til tomorrow am or late tongith ( east coast) I have to meet with my 12 year old daughter's teacher tonight. Yeehaw!~
At 4:11am on September 2, 2008, Lauren M Fritz said…
Hi Polly, my name is Lauren. I clicked on your page when I saw that your son has the same deletions as mine. He is a cutie! We have two boys Jake, age 5 and Ryan, age 21 mths. Both were diagnosed ith Duchenne this summer. We are working with CHOP in Phila.
At 8:41pm on August 25, 2008, Brian Wolf said…
Hi - I was trying to post up some pictures with Jack on his scooter but didn't get to finish....I'll get to it as soon as I can! We have pictures from the Nick Cruise that we had a scooter for him on the ship.

We're about 4 hours away, we're near Cleveland, we see Dr. Jacobs at Metro Hospital.
At 11:00pm on August 24, 2008, Brian Wolf said…
Hi Polly, I just read your post in deletions- my son also has 46&47 - he turns 9 on Sept 21st. We just got him a 3 wheel scooter- he loves it! He almost flipped it 5 seconds after he got on for the first time though!

Brian
At 7:06am on August 11, 2008, Kim Innabi said…
Good morning Polly! We need to get our sons together so they can work on their Legos. Somehow my younger son ended up with the Imperial Star Destroyer (3100 pieces). The most I could do was donate a box of zip loc bags and help him sort the pieces!!! Even Nicholas gave up on it...now it's under a bed just waiting for some brave soul to give it a try...maybe you want to do it??? ha ha. I'll bring it to OC with me. Talk to you soon. Hope you have a great week.
Kim
At 4:59am on August 8, 2008, Kim Innabi said…
Hi Polly: No worries on getting back to me...it's so hard to keep up with everything - especially if you don't have your computer with you!!! Yes, Julie is very funny...and she is amazing the way she keeps up with all that is going on too. Sounds like you are going to be busy for awhile with those wonderful little things called LEGOS! I am absolutely no help to my sons with those...there are way too many parts and directions - luckily Nicholas is a wiz at putting them together and he occassionally will help his brother. He has put together some really huge Star Wars ones. It would be great to meet up with you sometime. OC is not too far away. I would like to meet your family too-they are lovely. Do you also have a daughter? I see other Sundeen's on the site. Keep in touch and take care!
Kim

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