Wednesday, August 5, 2009
One of Our Favorite Places ....
Today the boys,Zoey and I headed up to Santa Barbara.Santa Barbara is one of my favorite places to escape to.Not too far away,about 45 minutes,but feels like your away from it all and I really needed to be away.Tons of stuff going on around here.Some real and some in my head but none worth dumping on the masses so I'll leave it at that.The day started with me needing to cancel Zoey's much needed feeding therapy because I also needed to keep her appointment to be fitted for orthotics.Orthotics are uncharted territory for us.Probably if Zoey hadn't been hit with her diagnosis in October we would have long had them by now but there is no need for shoes in the hospital,especially when one doesn't walk yet.We hope to change that.Not in the near future but we remain hopeful that walking is in Zoey's future.Thanks to a heads up from my go to gal,I was ready for a long visit.Tera said that an appointment could be as long as 2 hours depending on casting and cooperation from the little love.I was dreading a long drawn out visit for Zoey as well as the potential man handling seeing she has seen more than her fair share of manhandling,especially over the last 8 months.Well,as luck would have it,we were in and out in a little more then half hour.Zoey's pediatrician recommended SMO's opposed to AFO's for her.SMO's are just smaller and shorter and are meant for ankle support and the intense foot rolling she does.This orthotist was so knowledgeable.On his recommendation, instead of casting, he said he has had really great success with a product called Sure Step.They are not ready made or requiring casting,but rather only need ing measurements and voila ... 2 weeks from now, Zoey will be good to go or not actually go but rather good to start having her upright a bit more.We headed up north after lunch and spent the afternoon at the zoo.We have had a family membership for the better part of 20 years,since the big girls were little.It is just the perfect size zoo and from the hilltop you have a clear view of the ocean.One thing that I realized as we tooled around the zoo was that Zoey is in definite need of an adaptive stroller of some kind.She just can't fit,sit and enjoy her surroundings properly in a traditional stroller.She slides and she leans and she just is not comfortable.Hopefully in the next few weeks we will be getting her fit and sized for a new ride.I think it will make such a difference for her as we venture out in the world.The day was perfect.The boys had a blast.Zoey was a dream.She loved all the people and wanted anyone in arms reach to hold her.She waved like crazy.When got off the train, the conductor said thank you and goodbye and there was Zoey,waving goodbye like a crazy girl!Speaking of train.She loved it.It was her maiden ride and I actually cried as I held her in my lap and realized that my 2 1/2 year old had never ridden the train at a zoo we have been to more times then I could ever count.In fact,I only think she has been to the zoo once.Once last summer.Our only summer,where she hasn't been in crisis.As we finished off the day,we picked a nice grassy spot and rested a bit and took a few pictures.It was there that I cried for a second time.As I place Zoey on the grass,I realized that she has never really ever felt grass on any part of her tiny body.Birth to 6 months:Staying alive,flat on back,20 hr g-tube feeds,till surgery.Then there was healing and fall and winter came.The honeymoon period I call it, as it was a brief time of some normalcy.February came and from there until June we battled IS and I,or someone else held her 24/7.This was followed by a brief 2nd honeymoon which had us at the beach mostly and then there we were again,another fall and then leukemia came knocking.The thing that some forget or don't remember,even myself, is that Zoey, through all that time mentioned,didn't sit and only sometimes rolled, so again she was mostly held.No reason to be on grass ... until now and this was simply beautiful and she loved it.Along with this little boy that we met.Such a cutie and once again showed me what a people person Zoey is.Especially children.I just know,that when the time comes and Zoey is able to be out and around other kids that she is just going to blossom and thrive.What amazing days those will be.
The one close up picture of Zoey was taken by Jake on the train.It captured perfectly her awe in the experience of the ride.I think the grass pictures also tell a story of their own:Zoey,despite it all,is extremely happy and so filled with joy in all that she does.
Once again a huge thank you to you bracelet buyers.I am mailing out another batch tomorrow.I tend to wait until I have few orders before I head to the post office but I promise they will all get there.