Happy Passover

It frustrates me that I cannot condense my 3-4x a week trips to both Town & Country "regular" pharmacy and the compounding one around the corner. It just isn't possible. Fortunately since Michael and I continually screw up how far in advance to call in a special order prescription (all of Sylvie's), the hospitable staff now call US to see when we will pick them up.

No sooner than I was contemplating when I could resume working between the NG tube, the shots, the pharmacy runs, the hospital trips and the accounting, I was administering Sylvie's magnesium despite her protests and the NG tube came right out of her nose! We were equally shocked although I admit, I was very annoyed at myself and at the thought of having to go to the hospital today when we will be there tomorrow by 10 am. I had a Passover Flourless Chocolate Cake to make! So I called the Reuten clinic and all of our regular APNs (advance practice nurses) were unavailable so of course they told me to come in.

Begrudgingly we got in Blue Car although truth be told, Sylvie was excited at the prospect of sitting in the big bed and watching movies. I asked Michael to call the clinic again while I was in transit just to double check that it was absolutely necessary for us to come in and have the tube replaced. No sooner than we were a traffic light away from HUMC, he called me on his taxi driver's borrowed phone to say GO HOME because Linda the nutritionist and Annette the APN said it was perfectly alright!

So... we turned around and drove home. And I made my kosher for Pesach cake. And put together Sylvie's Easter basket!

My parents came over and we had an abbreviated Seder. I hate not feeling totally committed or 'being present' but I was just so sleepy. Sylvie was very excited to see her grandparents and I hid little Afikomen presents around the living room for her to find with Grandma. I had hoped Sylvie might be inspired to eat matzoh ball soup or matzoh brei but no such luck. I expect she'll be ravenous in the morning.

Sylvie is sleeping in her big girl bed for the first night. She was so tired that she stopped complaining that she had neither Princess sheets or a pink blanket. She's clutching her stuffed dog named Disco (named after our Vermont veterinarian's Australian Sheepdog) and in her sleep, looks very proud.

Tomorrow is day 10 in Sylvie's regimen and she will have outpatient Vincristine chemotherapy in addition to having the NG tube yet again replaced. One of our friends who underwent intensive chemotherapy has been telling us what his experiences have been in regards to side effects. It helps us understand it a little better to hear an adult describe it as opposed to watching Sylvie wiggle her fingers in the air, touch her jaw or poke her leg.

Speaking of legs, Sylvie calls the Neupogen shots "leg stickers." I don't know where it originates from. I wish we didn't have to do it. It takes less than 15 seconds but she is so angry and upset.