Rattins living Coram Deo

I'll start with a story of Ana's cuteness. Last night Amy was driving me and Ana home from Boston and Ana was so silent in the back seat that we thought she must have fallen asleep. Suddenly, Amy sneezed twice and from the back seat we hear a little "choooo!" "choooo!" - she was imitating Amy's sneeze - TWICE! ;-) she's so adorable as she imitates everything! Yesterday when Ana got to the hospital to see Gracie she just kept kissing her and kissing her - she definitely misses romping with her big sister! I slept at home last night after 5 nights and days of being awake with Gracie, I had to get some sleep before work today. Ana slept through the night (as far as I know) and greeted me with a cheerful "hi!" when I got her out of the crib this AM. She imediately started looking around for "Dad-deee" and "Dad-douuu" (gracie?) but certainly enjoyed having mama home. Gracie apparently slept through the night at the hospi...

My brain is foggy and I feel as if I could have a seizure at the drop of a hat after 6 days of keeping Gracie awake and inciting seizures. She did have two seizures for us each time after I kept her up for most of the night off her meds. She also got a sedated MRI which took her 16 hours to wake up from! All this gives us some good data for moving forward with more definitively treating her seizures. I'll keep you posted!

Gracie did have a seizure last night. I have never been so happy to see a seizure. I couldn't believe that we got a seizure when we wanted one! She was taken off her meds entirely and I kept her up until midnight reading, watching TV, and tickling. Then, I snuggled her in to bed, but she couldn't fall asleep! Oh my! She struggle to sleep for and hour and a half and then, just after she dozed off on my lap, she had a seizure. I leapt out of bed and joyously pushed the seizure button. Her whole seizure was captured on the EEG and video with full monitoring. Praise God! The odd thing was that, despite ativan to stop her seizure, she didn't fall asleep for over 2 hours after the seizure! She laid there with her eyes wide open, looking around, occasionally yelling out... very strange. But my comfort was that she was on the monitors, so I eventually caught a few hours of sleep. She's now in the recovery room after a sedated MRI which will give us lots of information about wha...

We're admitted to Children's Hospital (Boston). Gracie was so incredibly brave about 3 IV attempts, blood draw, and electrode placement on her exquisitely sensitive scalp. She has, of course, won everyone over and has many new friends. I left the room for a few minutes this morning and came back to a crowd in and around her room all laughing with her contagious laugh! The joy of the Lord shines through that child! :) Now, we are praying for a good seizure, or more, if necessary! We really want to capture a seizure on the EEG, really really! We may also be able to get the sedated MRI done while here, which would be fantastic!

Well, friends... the sleep study ending up to be more of an adventure than bargained for... and not of Gracie's doing! I was to meet them at the hospital since I was at a conference in Boston. So, I walked over to the hospital from Hynes Convention Center and arrived with plenty of time (5:30pm) ... to get phone calls from Josh... "I'm stuck in traffic (5:30pm)..." ... "I'm still stuck in Red Sox game traffic (6:00pm)..." ... "Okay, I got off 93 and I made it onto Storrow Drive..." ... "Umm... I don't really know where I'm going, I must have missed something... it looks like I'm headed out of Boston now (6:15pm) ..." ... "Someone ran me off the road and I blew a tire and bent the rim and I can't drive the car anymore... and I don't know where I am (6:30pm)..." WHAT?! umm... (appointment is at 7:30pm) So, I loaded myself back up with the breastpump (I had been out all day), my backpack with my laptop in i...

Gracie has a sleep study tomorrow - that should be interesting seeing as she doesn't really sleep well lately (most likely due to mega doses of meds)! But I'm eager to get the results and see what's going on at night and this is the next step to getting an MRI which is A step toward possible epilepsy surgery which I'm now actually HOPING that she'll qualify for. The thought of neurosurgery (even for a doctor) is terrifying, but as it could cure her, it would certainly improve her quality of life! She's now up to double the max recommended dose of Keppra and a high dose of lamictal and still had a seizure on Friday. We're starting Vitamin B6 which has some effect for the mood swings that come with keppra and also has some anti-seizure effect. We also put most of her lamictal dose in the morning to help with her insomnia... next week is her long term monitoring video EEG!