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.
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!
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,
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,
Let all email each other. Can you contact the others with the same deletions as our boys?
My email is firstname.lastname@example.org. 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!~
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.
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.
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!
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.
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!