Sunday, June 19, 2011

Father's day

Today is father's day and day 47 in the hospital PICU. It's been really hard for Zev today, especially because her movements look worse today, and we don't know if it's the new medication, or if her symptoms are just progressively worsening
Leah got her second dose of Haldol today and it doesn't seem like it's working. The neurology team has to regroup and decide which able to tackle next, though it's obvious that it's becoming very frustrating for them to not be able to figure this out. We're hoping that with this blog, more people can learn about Leah's story and maybe there is a doctor out there who specializes in this type of movement disorder and will be able to at least diagnose her. They are thinking of maybe treating her with an anti-epileptic, even though her EEG looks normal. It's pretty much trial and error right now.
On the bright side, last night we went to go see Super 8 and when we came back, our amazing nurse, Ashley, had made a couple cards for Zev for father's day from Leah. Leah had a great night, sleeping all through the night. We gave her a little bath because she had been so agitated and sweaty. I then gave her a baby massage, and she was so chill afterwards, she just zonked out and stayed asleep all night. Ashley, made a little imprint of her hand for the card and said that Leah barely even cared, since she was so tired. It was a very beautiful gesture on her part to make them PicBadges widget on the side of the blog for those who want to show your support for Leah on Facebook or Twitter with a picbadge. I also added the link to the donation page that Jason Watson set up for us.
Happy Father's Day to all the dads out there!


1 comment:

  1. Hi Frani,

    You don't know me. I'm not even in the Mandos - my husband is captain of Clan Muraan here in North Texas. I've been following along with your story, almost to an obsessive level. I have two kiddos, my youngest is 15 months, so I know how YOU are feeling right now with your own hormones and such. To add in how sick your little girl is - it's just beyond my comprehension. I wish I could take your burden for even just an hour so you can have some peace.

    But, since I'm unable to do that, all I can do is try and help in anyway I know how. You mentioned trying to find other Dr.s. My cousin is a nurse at Children's Medical here in Dallas. She used to work at Duke in the Children's ward, as well, so she knows a few names here and there. She sent me a little bit of info that I'm just passing along. I know y'all are hearing this and that from all angles, so I hope you take this as just the desperate help I'm hoping it can be.

    She asked if they've tested for Batten's Disease?
    Rosemary Boustany is a neurologist she worked with for years (I will give you my cousin's name to pass along if you'd like). Richard Morse is also an excellent neurologist who specializes in rare disorders. She said you could google him and find where he's located now.

    My thoughts go out to you and your family.

    Kelli Ward