Now that I've had my heart surgery, there are a few things I'm working on. Remember the physical therapist and the occupational therapist I saw in the hospital? They gave Mom and Dad some ideas for how I can really start to work on my muscle tone even though I can't lay on my tummy. Here I am doing some chest-supported tummy time. It's really tough work - plus, I never know when that crazy Callie thing is going to sneak up on my other side and stick her cold, wet nose in my face so I always have to be on the defensive.
After a while, boy do I get tired.
Seriously, guys, I'm done for today. No, really - PICK ME UP!
On Wednesday, March 11 Mom and I did Marathon Doctor Day. We saw my Pulminologist in the morning. He said my lungs sounded beautiful. He said I could use my nebulizer only when I needed it for noisy breathing (which isn't very often) and he said to wean me off of one of my 2 reflux medications. He said I had to keep the oxygen tanks for decoration until we get through cold season - but at my April appointment he'd probably let me get rid of them. If he makes me keep them much longer, I'm going to hang Christmas lights on them and ask Santa if he'd consider putting gifts around the tank.
That afternoon, we saw my Cardiologist. She did an Echo and looked at my heart repair. She said my heart looks beautiful and it's working just perfectly. She said I make her SO happy. (Duh). She said I'm eating lots and Mom could return my feeding pump. And she said I could wean off of my two diuretics. I made her so happy when I ate 3 ounces at a time every bottle 6 times a day. Wait 'til I see her in a few weeks - my new favorite thing to do is eat 5 ounces at 5 PM. It's my extra happy hour.
Before Mom and I saw all my doctors - we met with a Social Worker and a Public Health nurse to talk about me and what a fantastically high maintenance little lady I am. They decided that I qualify for a Virginia State Waiver that gives me Medicaid and respite care by an in-home nurse. You know those government people though - always taking their time with things - so all the papers weren't going to go through in time for Mom to go back to work on March 16. So we called in Grandma Howe for a week. Let the spoiling begin.
Grandma arrived on Saturday so she could have a day of lessons on me. I was pretty proud of Mom - she did alright leaving me for the first time. I knew something was up when she was extra cuddly at 3 AM when I wanted a bottle (I did that as a going back to work gift for her - picked up an extra feeding in the middle of the night. I figured she'd want to see more of me at night since she'd be gone all day - but a girl needs her beauty sleep - and I've since had to give up getting up twice a night.) Usually at 3 AM Mom or Dad give me my bottle and send me right back to bed, but before going back to work, Mom rocked and cuddled me for an extra few minutes. Then when I woke up - she was gone! I'm okay with sharing her with the first graders. She says they're almost as fun as me - so she likes being back with them.
I wonder what I can talk Grandma into... "Grandma, they usually give me some cookies with my milk.... really? They didn't write that down? Jeez. What about cake? Did they write down about the cake I usually get?..."
Grandma and I did some projects around the house to help mom and dad. We cleaned and made dinners and took Callie on walks. I told Grandma what to do, and Grandma listened, so things went smoothly. My nurse is starting tomorrow. We haven't met her yet - but Mom wrote her a novel of information about me. Poor nurse is going to have to spend half of our day together all reading that.
This is a trick I saw my friend Lila do: give yourself a bottle. I still need some help - but I'm working hard at it. Now that I eat so much - it seems like the easier way to do things. Mom and Dad can never guess right about if I want 5 ounces or 3 ounces. Then I have to yell at them - this will all be easier when I just can run the show all on my own.