Zar is 32 today! We had pancakes. All three girls woke up all crusty and gross, so we have spent a quiet day at home. Right now everyone is asleep but me, so I am quickly catching up on the blog.
Lily has had no other episodes since her last one on Tuesday. She clearly has a cold bug and I'm chalking it all up to that, fingers crossed.
She has seen her surgeon, her physical therapist, an occupational therapist, and a speech therapist since our ER visit. We have turned up her continuous feeds so she now gets a few hours off the pump each day and she is tolerating it well. We will continue to work in the direction of bolus feeds. Her therapists felt she has a lot to work with physically. She tries to lift her head when on her tummy, moves all her limbs and grasps, and was clearly interested in sucking on a milk soaked q-tip. All great signs.
We are seeing therapy more this week and next Monday she is going to cardiology for another echo and we will see if her numbers and pressures have gotten worse. Her sats have been a bit harder to keep up which of course is easily related to the cold and resulting snot.
I'm very excited for some upcoming Christmas activities--we are going to a Hope Kids Christmas party, a Make a Wish Christmas party (which will be our first time in the Make a wish building as Boof never actually "made her wish") an Angels Hands Christmas party, and various other fun activities. I made it to the Festival of Trees the other night which I thought might make me very sad as we didn't do a tree this year due to life craziness. Instead it helped me finally get into the Christmas spirit. Now if I could just get Zar to help me get the tree up the basement stairs.
We also have Ava's finalization coming up, which I just want over and done with. That will feel so awesome to walk out of that court house. Ava is pulling up to stand and this morning she forgot she can't walk yet and let go of my shoulder--falling flat on her back. With her giant 95th percentile head, it was quite a thunderous boom. She whimpered for a minute while Ella yelled "WHA HAPPENED!? WHA HAPPENED!?" and then was happy again.
Ella has a crusty nose, loves our new "big car" and chocolate milk, and enjoys talking about the potty but not actually using it.