We finally finished putting the nursery together! Grandma slaved over a hot iron for hours!
Monday, September 21, 2009
Friday, September 18, 2009
Keppra
Since the phenobarbital is not completely controlling Lily's seizures anymore, we have started Keppra. It was one of the safer drugs to choose from, so we decided to try it first. We've had some results...the tonic seizures have slowed down quite a bit; however, the infantile spasms are still occuring a few times a day (typically they come in clusters that last about 5 - 7 minutes). The doctor is increasing her dosage over the next week to see if we can get the spasms to stop. If they do not, then we have to move on to stronger more dangerous drugs (due to side effects). Let's cross our fingers!
Tuesday, September 15, 2009
Hawaiian Luau Party
We had a Luau this weekend to celebrate our birthdays (William & Heather) and for Grandparent's Day! We had so much fun listening to Hawaiian music and watching Elvis Presley's Blue Hawaii! Then we made lobster, baked potatoes, and a feta salad. We put pina coladas in our coconuts and and then had birthday cake! By the end of the night we felt like we'd had thanksgiving dinner! It was so much fun that I think a big September party is now on the calendar for every year!
Seizures
This photo was taken just 2 days before we saw Lily have her first seizure. We spent a long scary week in the hospital. Her MRI showed nodules in her brain that are most likely Tuberous Sclerosis, a rare genetic disorder. We had to dig deep within our reserves to find the strength to face an uncertain future.
There's No Place Like Home
March 5, 2009--We brought her home from the hospital! I loved being able to hold her all the time and never having to ask anyone for permission.
NICU Days
Being in the Neonatal ICU for a little over 5 weeks was so difficult, but we made it through!
Tout de Suite Lily
January 30th...my raison d'etre--Tout de suite Lily. She was so shockingly beautiful to me. I thought she would be all wrinkly and funny looking...but she was simply perfect. We all loved her right away!!
Baby Shower
Who knew that the reason I was so swollen was that I would be giving birth in 6 days due to high blood pressure!!
The Loveliest Baby Shower!
Mary Ann and Melinda hosted the best baby shower I could have ever hoped for! Everyone talked and laughed...a much needed relief from a difficult pregnancy!
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