Supergirl

Marissa wouldn't go to dayhome this morning, told Daddy she was too sick to go and she wanted to cuddle. So with me being in hospital with Taylor, he had to stay home from work and take care of the sickie. Apart from a cough I'm not too sure she's all that sick, I think that Mommy and Taylor being gone for so long is really starting to take its toll on our monkey.

Later in the afternoon they came to the hospital to visit. I found out there were Halloween festivities happening down on the main floor so Marissa had come dressed up in one of her princess costumes. I had Mom swing by the house on her way here to get Taylor's costume too. I stumbled upon a pink diaper shirt a little while ago at Old Navy with the Supergirl logo on the front...and since that's what I call her, I clearly had to get it. So rather than a regular costume, Taylor is going to be the 'Supergirl' that she already is wearing the supergirl diaper shirt, some pretty pink tights with hearts all over them, finished with a pink tutu!

Marissa ran across the cafeteria when she saw me and jumped into my arms, it was the best greeting EVER. Missing my little monkey. She had fun running around to the different stations trick-or-treating, but I think between being tired, having a cold, and the sugar rush...she started to rapidly expire when we came back up to Taylor's room. That's to put it nicely. So her and Daddy left...she crashed on the car ride home.

Eddie (aka Mad Hatter), our favourite porter

Granny

Grandpa

Sparkles the clown dressed a little differently for Halloween

When I talked to Francis tonight he was pretty choked up. Marissa had been acting differently all night. Very cuddly and kept looking at him with a forced smile. When he put her to bed she did the same thing and he asked her what was wrong. She broke down crying and said how much she's missing Taylor. Oh my heart nearly broke. This is alot harder on her that I really realized.

It's looking like we're here until Monday for sure. We have one more teaching session before we can go home with the feeding tube, and Francis has to do an insertion. Monday at 11am is the time scheduled for that. So hopefully we can then be finally discharged and have our family back under the same roof.

I did my second tube insertion late this morning when the Home Nutritionist came. It was a little less scary today, although the first one coiled up in her mouth. Quickly got it out and the second time I got it right. Phew. Having some issues with the end caps coming undone and leaking out stomach contents everywhere...GROSS. So we tried a different tube today that apparently the cap stays put better, but it's a one week tube rather than a one month tube. It was a little easier going in than the monthly tube. Not thrilled at having to put in a new one every week, but it's not going to be for too long, so we'll get through it if it ends up working better.

From the teaching session we were taken to Neurophysiology Clinic for a follow up EEG to see if the Phenobarbitol has brought the seizure activity down. I'll blog about that tomorrow. It's late, I'm tired and need to digest the results first.

Signing off for tonight...night night!