Okay, I just saw the weather.... Is there a back up plan if it is raining? I live close we can go to my home or yours. Anything you want. We have a two story house and the bathroom is upstairs. I know, it is not a good home for Jacob and we are looking to buy a new home very soon, but I thought you should know.
Does Colin take Idebenone? Where do you get it and how much does he get if you do? I have been ready these post and I think I am behind in his treatment.... Has Colin shown sign of muscle challages or is he improving and maintaining?
Can you go to my company's website www.streamkeeper.org and go to classes? We are having a presentation by Jeff Guidry and his Eagle named Freedom. Has Colin or your family ever seen a bald eagle 5 feet away from them? You are more then welcome. I will be working but my family will be there. Freedom loves the flash of a camera. Anyway it is this Saturday at 11 a.m.... Admission for the four of you will already be paid for (I work here). Anyway hope to see you Saturday.
Alright, I would love to meet for coffee. I would also love for our kids to meet I have Jeremy also and he is 12 years old. Jacob is a deletion of exon 45. Does Colin know what is happening to him? We have only told Jacob his muscles do not work the same as most kids. What activities do you do with Colin that do not wear him out? Maybe we can join you some time? I am sorry, you will probably get really tired of me but right now knowing there is one other person to talk to is an idea I am clinging to for understanding. Nobody understands and I can not talk to Mark about it at all. People on Facebook do not know neither do my family or friends. I hate that the steriods made Jacob just chunk out! His extra weight makes him so uncomfortable but I dont know what to do about it. He went from 64 lbs to 79 lbs in a month. He hates what he looks like. Can I cut the does from 26 (4 pills) to 3 pills?
When and where. I was beginning to feel like Jacob was the only child with DMD. The MDA office in Everett is horrible. I have left messages and email with no response. My husband is in total denial. He is convinced that the Exon Skipping is a cure and that anything else he reads is just a bunch of hens clucking. Does your son work with Jennifer at the Bellevue pool? What does he do for therapy? Do you get any kind of assistance with the $400 for Deflazacort and $1800 for night boots? Never mind the vitamins and supplements. We are drowning and want to know what other families are doing.
I'm so glad to hear about the OT and PT at school. Right away I started worrying about him getting knocked around by the other kids at school. I'm still not sure how he's going to manage with stairs at school but hopefully everything is ADA compliant. I really love Lauri King and I know she's going to watch out for Jason.
Yes, I am trying to be upbeat but it really does suck. My little boy is just an angel and also so handsome it's unbelievable. I had lots of dreams of him growing up and dating (and me having to beat the girls off with a baseball bat.) I think I'm still holding onto the idea that a miracle cure will come through before he hits his teen years.
Meeting at Logan Park would be great! My husband takes the kids there all the time. It would be funny if we recognized you and Colin from seeing you there before.
did you move so as to accommodate Colin? We are in a 2-story house with bedrooms upstairs & I'm wondering if we should go ahead and move soon. Jason can't go up & down stairs, already.
Jeni, we live just down the hill from Hilltop and that's where Jason will go next year. They have a regular K and a developmental K, so I'm guessing he'll be in the devl. K-- he's cognitively behind his peers. Jeni, where does Colin go to K? Does COlin have Cognitive delays? I love the name COlin, BTW. It would be great if our sons got along. --Ruth