Hello to all of Lauren’s fans.

Good day to everyone.  Rita, Lauren and I are currently in the Care by Parent part of the hospital again, and this time, we’ve had Lauren since Friday night, and on until Monday morning!  Things are going just great, and I’ve actually been around enough to help out and hone my fatherhood skills a little over the past couple of days.  I just finished “doing up” Lauren for her 8am while Rita catches up on some sleep.  Both girls are snoozing away right now, and it’s quite peaceful (by that, I mean it’s nice both are comfortable enough to sleep soundly.  I didn’t mean anything bad, really!)

Rita and I met with our medical team on Thursday, and we finally have a diagnosis for Lauren.  She has a genetic muscle disorder called Nemaline Rod Myopathy.  It’s a rare disorder that affects 1 in 50,000, and causes muscle weakness.  As of right now, there is no cure, BUT, it’s not degenerative, so it doesn’t get worse.  Through physiotherapy, stimulation, a healthy diet (hey, who can’t use one of those), and early intervention with the onset of a cold, Lauren will grow to her own full potential.  There are different severities of the disorder, from not being to walk and talk, to just getting tired out more easily.  When Dr. Turnapalski (I assume that’s how his name is spelled), who is the neuromuscular doctor that did the muscle biopsy, gave Rita and myself the results, he mentioned there are a lot of websites out there with false cures, so be wary of what you see. I know a lot of you probably will go search it, heck, I spent 3 hours the night of the diagnosis checking it out. But please take everything with a grain of salt

I want to let everyone know, that Rita and I are doing well with this.  Yes, we had our breakdowns.  Yes, it was hard to hear.  But, YES, we will get through this.  YES, Lauren is going to continue to be loved so very much.  YES, Lauren will have a wonderful life, and the absolute best we can provide.  She has already become a shinning star in the lives of many, and who knows what’s in store for her.

I will try to compile more information as I received it on NM, and get it posted when I can.   As rare as it is, there are support groups out there, and I’ve already been in touch with a man in Scotland who lives with NM, and I’m sure I’ll talk to more people as time progresses.  I will try to post the information when I can, but things are going to get busy.  The plans are still set for us going home on Wednesday which is in THREE DAYS!!!

Thank you to everyone for your thoughts, prayers, love and support.  It’s truly been stuff like this that has allowed Rita, Lauren and I to come out on top, and it will continue to do so.  May God bless all of you.  We’ll talk to you soon.