Hello again--As I said, I am very new at this and not sure what I am doing actually. But yes, I celebrated a birthday (60!) on Thursday. We celebrated by spending a few days at Cape May, a beautiful place and beautiful weather. I'll stop by to see you and to wish Henry a belated Happy Birthday.
We do see Dr. Finkel at CHOP, we are taking Ryan, 4 for a steroid check-up next week. Our 2 yr old Jack has DMD also, but not the dramatic symptoms Ryan had at this age. Thanks for contacting me, hard enough having one child with this, but to have 2 boys with it is very hard.
I JUST realized you are the run in Kennet Square we are going to do, With about 20 or so of our friends and family going with us. I have been in contact with several families but have yet to meet any, and I am looking forward to doing so.
I was born in Boston, we lived in Abington until I was 10, I still slip back into my accent!
Thanks for the note. I think that I am still in denial about the whole thing. I did get a chance to spend a week with my sister in law and their family this summer and it was hard. Keelan, like your Henry, will be 2 this month and I am just so sad that he will not have the opportunity to experience things most parents take for granted. His parents get so upset when he falls down and take it on as a personal failure that they were not watching him enough. I think they also feel as though no one else but them can watch him close enough. They are under a lot of stress and I just wish I could help them, but don't know how.
Thanks for thinking of me. I hope you and your family are well and I wish you all the best
Hi, yes I remember your team as well, Alex is all done with his biospy and things look good, I defintely see a little improvement in his strength.
How is your son doing?
Sorry I didn't get back to you sooner but I was on vacation and did not want to go near my email's...LOL
Thanks for the response Paul. Your family is just beautiful. I appreciate your suggestions and will try to remain supportive and involved without being overbearing. Enjoy the rest of the summer and thanks again
Lots going on here too. Bummer about Atlanta, I will keep you all posted. As far as the Trust... my sis-in-law started it for us. Too much on our plate. we just signed the document & got the EIN #... Friends had a car wash for Levi so we made the 1st deposit - Gosh I hated doing it... Gordy, Levi & I are mtg w/ Congressman Tim Holden today at 4pm - Apparently he has supported DMD in the past - want to continue his trend. Lots of GREAT things coming for our Beautiful boys - I know this!!! Give Henry & Elliott big hug from Levi.
Hi Paul & Joanna - think of you often. Friends just had Levi's 1st official DMD fundraiser. A great car wash.... we put the money in Levi's "special Needs Trust"... Gosh - I hate having to have one of those. Anyway, we are getting ready for Atlanta. hope all is well:) perlita
Hey Paul- How is your family doing? It has been a little crazy but things are settling down. Natalie is 5months and sleeping through the night. Michael is 3yrs old now and doing well. We just had our CHOP visit and everything went well. I believe the families of PA are trying to get together this sunday. I will be watching the children but Niccole is attending. Are you going to Atlanta? I will be there. If you are let's try to catch up........ Michael
Hey Paul - Talked to Joanna last nite... it was great! Please tell her THX & I really appreciated her insight into all this. Levi is a Premature stop codon, exon 23 - Gosh... hate even having to type that! Now we just sit & wait for a while. enjoy this rainy day, perlita
Hello,actially We been in the US just for 8 yrs I never practice in US I worked for my self in north africa for 4 yrs then circomstance push us to immigrate.I miss my real job wich is working with big animals,I'm still looking for an opportunity to live and work some where in pa,oh,,,a rural area.
God Bless you for thinking of us. We get the results 4/17, this was our choice... I'll call you to talk sometime soon, it's a bit complicated. I pray for Henry & Elliot each nite. We are doing better... I don't cry every minute. Hope you are all well:)
From what Marissa mentioned... they don't have all parts back yet . Apparently Emory in Atlanta got hit w/ many requests for gentic tests recently & they are backlogged... or at least I hope that's the truth!!! I may call Chop to clarify..
Glad to hear all is well... think of you often. We pray for Henry & Elliott each & every nite, along w/ some other little men we've gotten to know w/ DMD. I'll let you know how 3/27 goes... we just want to get that part over with!
Hey - did you go for your PTC 124 check up??? Just curious. I've heard some trials are in other countries & if your son qualifies they would go for many weeks & do the trial there??? your thoughts???
We are doing better - really living for each day:)