Wednesday, April 7, 2010

Catching up, really...

Oh gosh do we have a lot to "catch up" on. Lets start with the weekend. The party was a fantastic success! We had ALOT of fun and ALOT of people came. It was a great celebration of life and friendship. Livi did sleep for the first hour, but awoke in time for singing 'happy birthday', and getting to taste a small bit of icing, which she loved! We also raised a little over $200 for children's mercy hospital, which we are proud to present since they will be aiding us so much with our finances this year.

getting ready to blow out the candle
Squishing the cupcake
Chill'n with Aunt Mal's glasses after the party
On Monday at PT (physical therapy) we spoke with a social worker at mercy about our financial situation. She made some calls and our primary insurance will supply the pediasure (which has already been delivered) for just $75 at cost to us-- what we have budgeted for her food anyway. I think it would have been several hundred dollars a month for us to buy it on our own, so that was a real win. Also, our social worker spoke with the lady in the financial aid office again and she has already filled out the application for Olivia for disability. We will see what happens, but a lot of folks are doing their best to help out.
Tuesday morning at 3am Olivia's pulse ox alarmed (mostly if she knocks off her oxygen or is awake during the night). This time she was awake but it was alarming because her heart rate was so high. She also was running a 104 degree temp. We went straight to the ER and just like last time, it went down with one dose of Motrin and some sleep in two hours. Nothing on the chest x-ray, no known infection. Got our antibiotics and came home around 7am.
Tuesday afternoon we had a neuro appt and it went fine. No real issues, just doing a check up before the surgery. I think the neurologist was a little disappointed she was not progressing more quickly since the slowing down of the seizures. Though she is moving along, we all were a little sad she didn't just 'snap back' after the new medicine. Instead, it has been a long road.
Tuesday night we had a big storm. Tugger is afraid of storms and usually hides on the bed upstairs. He was up there for 2 hours and I went to check on him. On the first lap around the upstairs I could not find him. On the second lap, I found this...
Today at cardiology was fine. EKG, ECG as usual. Looks good. They schedule the surgeries every week at a conference. This week was already full so they should call next week or the following week with the date. Could be weeks, could be months. Whatever the schedule says.
We are all doing great, but it has been an extra busy couple of weeks and we are wiped! This weekend should be a great time for recovery...

1 comment: