Right now I have a pair of small longies on the needles, using Yarnnoodles Ponderosa colorway on Cestari. Another project I am really enjoying and hope to having finished tomorrow.
Wednesday, March 23, 2011
Busy little bee
Right now I have a pair of small longies on the needles, using Yarnnoodles Ponderosa colorway on Cestari. Another project I am really enjoying and hope to having finished tomorrow.
Thursday, March 10, 2011
Something for one of my kidlets
I've been busy busy busy keeping up with everything for V. It feels like a full time job driving V to speech therapy, physical thereapy and occupational therapy every week. Oh and don't forget her special pre-k program twice a week. We took today off she is beat and needed a good nap and I have so many things I NEED to get done her but with our constant running I haven't had a chance to. She is doing great though, it looks like the surgery was a success she hasn't had a seizure in nearly a month now. Totally amazing that she has recovered this quickly and is doing so well, everything about her astounds me.
Thursday, February 24, 2011
Plenty to show for my time
Friday, February 11, 2011
A sweater just for tapping.
Thursday, February 10, 2011
It's me!!
The surgery is next week, which is such a mix of emotions. Excited that it is finally here but terrified that we are at this point. Working hard to get everything here at the house squared away for my parents who are watching the other two girls and make sure we have everything we need for our trip. We haven't explained too much of what will happen to V, she knows she is going to see the doctors but we haven't really explained about the surgery. She does seem to understand that this will help her and she is excited about getting to go to Boston again.
Monday, January 31, 2011
Sweet little sweater
February begins tomorrow and that means we'll be 15 days out from the surgery. V's behavior is out of control as always, and I really hope things calm down after the surgery. I've been a bit torn lately about writing about our journey and how much to discuss and show. I'm really sensitive to the fact that at some point V (hopefully) will be a typical kid and do something like google her name (or her friends will) and I don't want all of this to pop up for everyone to see, this is her story and her journey and when she is old enough she should have the right to decide who she shares it with. However, there are other families going through this and I know when we knew this surgery was coming I was hunting for other folks who were writing about the process and how they handled everything. I wanted to read as much as I could about everything, so on some level I do NEED to share this now without her permission. So I walk a fine line, that is why I never use her name, and why up until this point there are no pictures of her (although that will change I do plan on putting some pictures up soon). I want to post a few short videos of her seizures because I think folks need to see that seizures aren't always what we think they are, sometimes they don't really look like seizures at all. I do not want to perpetuate that idea that epilepsy and seizures are something to be hidden, but the idea of posting videos of V seizing makes me uncomfortable, it is a private and personal thing and I am not sure if I want to put that out for the world to see. As the surgery date approaches though I do feel the need to share a bit more about V so she isn't just an anonymous person having epilepsy surgery but a real child with real parents, real siblings, and real grandparents and aunts and uncles who care deeply about her.
Wednesday, January 26, 2011
Mine!
On the V front we are still in waiting mode. It looks we can now consider her fifth med a failure, she is back to having almost daily seizures maybe one or two good days in there and her behavior is just as off the wall as it was on Keppra. She is so close to her surgery though that it isn't worth it to wean her off this one and wean her onto another one so for now we are in a holding mode and just waiting for February 16th. This surgery can't come fast enough just this week V has become aware that something is different about her, and it breaks my heart. Every morning she asks why she has to take medicine but her sisters do not, and at least daily she asks me what she is sick and tells me she wants to be better. I am so glad we are just a few weeks out from surgery watching her realize she is different is far harder then I thought it would be. I was naive in thinking that she wouldn't even begin to ask these questions and I really should have prepared better for it. The reality of her what her future holds becomes a bit scarier every day.
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