I realize that you sent me a message back in September - I'm so sorry I haven't responded yet. I haven't got to this site for a long time.
Yes, we see Dr. John Day here in Minneapolis and we really like him. At this point in Luke's disease, we really just check in on a bi-yearly basis - to make sure all is going well. I think Dr. Day is great and very knowledgeable. I would highly recommend him.
I'm not really good at navigating through this site yet, but I can see your kids are darling. If you have anymore questions - let me know.
Hi Christina! We are almost neighbors! We live in Twin Falls! My 4 year old son Tanner was just diagnosed in July. I would love to chat more with you, especially about how you feel about the care you guys recieve there in Boise.
We also see Dr. Flanigan in Salt Lake. That's a two hour drive as opposed to 4 to Boise. Dr. Flanigan told me though at Baylor's MDA clinic in August, that he will be moving to Ohio for a position. He tells me we'll like his replacement. We'll see I guess. How do you like your MDA clinic doctors in Boise? There can be a lot of frustration trying to find a good doctor.
Glad you found PPMD. This is a great forum for support and info. I don't get on here much anymore, but when I do it's always helpful in one way or another. Baylor was diagnosed a week before his 2nd b-day. He is 5 now and in Kindergarten, but he struggles quite a bit with being on a younger cognitive level than the other 5 year olds. We'll probably have to do K again next year. Is Isaiah in school yet? Thank heavens for IEP's!
If you ever want to email me, feel free: firstname.lastname@example.org
PS-I love the picture of your kids. They're adorable:)