Wednesday, January 14, 2009

We went and saw Dr. Dilustro again today, Lily's fontanel was soft, her head circumference is up to about a 38 and the site where he did her previous surgery is poking out about an inch or so. He said that there is probably some CSF in there but it is not seeping out. He wants to see us back tomorrow, he is going to do another CT and a Ultrasound. He wants to establish a baseline with the ultrasound b/c he doesn't like doing the CT's every couple of days b/c of the radiation. We are then going to meet with him and discuss whether she will have surgery again on Friday. If she has surgery then he will stick the endoscope back in and see if he can locate the hole that he created a couple of weeks ago. If not, he will go a head and create another one. If this doesn't work then we will discuss the shunt. He is still confident that this could work. She is draining some but it is hard to tell how much. I do think that her hear circumference was down a little today.

I had to sign up for cobra insurance b/c I ended up resigning from my job. I have been unable to get all the details cleared up and was finally able to do this late this afternoon. (I popped in and saw all my former co-workers, It was wonderful seeing you all and I miss you all!) I was able to add Lily to my insurance/cobra and make her an appointment with her pediatrician first thing in the morning. I have a HMO so now that Lily has been discharged from the hospital all future appointments, procedures must have a referral. SIGH........ This was a bit of a task b/c she has not seen her pediatrician yet b/c she was in the hospital for the first three weeks of her life. So, tomorrow she is scheduled to see her pediatrician, then a CT scan, ultrasound and then Dr. Dilustro..... UGH... and Ken is working. It IS going to be an interesting" day. LOL

Please keep us and Lily in your prayers... I will post again tomorrow night and let everyone know if she is scheduled for surgery again on Friday.

so.. Last night Ms. lily discovered that if she fused just enough she'd get her way. :D :D........

Lily, I and "Sweet baby girl".

see Lily even has both arms raised in 'VICTORY!" Don't you all love the kitty pillowcase? I made it for Tori several years ago, but now that she is almosy 16 it isn't 'cool" anymore. LOL

God Bless!

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