Deeeeeep Breath....... and type!

Hi everyone. So, ok, it's been a VERY long time since I wrote anything here. Sorry but grateful to all of you sweet friends who have come back to check just in case I might have actually had two minutes to rub together and sit down to type anything. I make no promises, but I am going to try again, and mostly in an effort to seek some form of sanity in the adventures we are asked to take on. Most recently, we've had a lot of hospital activity in the family... Aaron & V (9) have been in the hospital a lot lately, and boy has that been an adventure. I say it like "adventure" but what I really mean is like "going through hell"... It's been amazing at times, though, how much strength and love I have felt through the prayers of my dear friends and family through all of this. Aaron seems to be doing better most of the time, but stress certainly takes its toll, and we are working on getting the stress lessened, or at least to help figure out how to feel less stress from the life we get to live. Good luck with that, right???

Vivianne... what can I even say? She is dealing with what my friend Susan rightly called, "a steaming pile of WOW!!!"... after 14 days on a "new" medication (new to her, anyway), she began having some really adverse reactions. Not hives, because THAT would be easy... we get to be 1 in a hundred million, apparently... she has acquired a movement disorder (or 3?) from this medication called Seroquel. The doctors we are working with have told us that she is the FIRST child they have ever seen with this severe of a reaction of this type. A week later, though, they had another child with the exact same symptoms... and apparently, on Thursday when she was discharged from the hospital again, I was told of a third child... same medication, same issues!!! We are trying to figure out what to do next... and that is more of a challenge than you could even imagine! Who do you talk to first? The specialists (if they even exist in the state where you live, you are totally lucky...) OR the attorney... Obviously, both need to be contacted... and we have chosen to try the route of the specialists first. Bad thing with that, is that there are no pediatric movement disorder specialists in Nevada, so we have to look at clinics elsewhere. Mayo? UCLA? University of Utah? All great places... but where do you even start?

I did find some information of a few other children who have had similar reactions to the same medication several years ago, but have been unable to make contact with the mothers. I found the one boy on Facebook, but his mother is not found, and he has not replied to my request for help. He probably thinks I'm some psycho-stalker, who knows??? The other child passed away, and I can't find his parents either. :(

Poor V... she really is struggling with all of this. She is constantly going back and forth between fear and anger... with a few moments each day when we are lucky that she is almost happy and peaceful. Those moments don't last too long (the peaceful ones), but we are thankful when they do occur. She will have an MRI tomorrow morning, under sedation since she cannot be still for long. I hope and pray that we can find some answers, and that there is something more that can be done. Currently, she is on two medications that mask her symptoms, although not very well, as our trip to Whole Foods this morning is a testament of. Kind of like a bull in a china shop, to say the least! Thankfully nothing got broken, and we left with most of our dignity intact.

We have dubbed her "BumbleBee" since she seems to be all over the place a hundred times a minute. I even showed her some YouTube videos of the classical piece "Flight of the Bumblebee" over the weekend, and she agreed that it fit the way she feels most of the time. You can tell that she wants SO badly to be able to just sit and watch a tv show or something, but even that is just too much for her.

I don't know how much of her saga I will post here... I will likely take it to its own blog for the purpose of keeping all of her stuff together. But, tonight I just needed to get this out of my mind, and it felt like through my fingertips was going to be the best bet.

We had the best Family Home Evening lesson we've had in a long time tonight... it was on the 4th Section of the Doctrine & Covenants, and how it relates to our family. For those kids who were able to sit and participate, it was really good. Not everyone was "in it", but I am hopeful and feel positively that some of the kids really "Got it", and that perhaps some of them will be able to teach the others. Line upon line, precept upon precept... and all in the due time of the Lord.