Cautiously Optimistic

Writing a quick note... so far-so good! Lucas had a pretty good week, all things considered. We were able to wean him off medication the past couple days and the crying has diminished. I will say that this time around has been a lot better for him for some reason. Go figure... this was the one that was the worst going in and the most invasive (post-NICU) and he seems to have bounced back more quickly. The only thing that was the same, was his crying at night... I don't think it is pain, I think he gets scared. It happened the last two surgeries, he just gets really needy for about a week and if he wakes up at all after laying him in his crib he will cry. He doesn't like to be left alone. The first couple nights, he woke up several times through the night. He's become quite needy for Mommy, which I would expect. Last night we were cry-free and the first night that he didn't wake up!

I wish I could say everything is great and that this will be the last time, but we remain very on edge. I don't think we will rest until we know after many weeks that it is working. We are supposed to go in three weeks for a follow-up CT scan. Every time his eye drops a little, I'm worried it is the pressure again. I just can't shake the feeling that this one is going to fail too. His eye still drops sometimes, and I don't know if it is a sign of pressure building like before, or if it is just the shunt needing more time to get rid of all the extra fluid and equalize the pressure. He needs this to be the last time! He needs it for his weight gain, and his overall motor skill development. We've taken steps backwards in both these areas from this last two months being sick.

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Since he was feeling pretty good by the end of the week, we were able to get Lucas out trick-or-treating on Friday! The kids were all very excited to see him dressed up and go with him for the first time. Abby wanted to be a Momma Bear when she learned of Lucas' costume. So cute. Unfortunately, it was a very short event because the kids didn't get to our house til after 8 pm, and once we got everybody dressed, trick or treat was basically over and there weren't any other kids out. Luckily a some porch lights were still on and they got to hit some houses. Lucas also goes to bed by seven, so he wasnt in the most festive mood as we were wheeling him around the neighborhood that late dressed in a bulky costume! Bran always gets the kids at 6 on Fridays, but the kids' mother withheld them without Bran's agreement so that she could take them trick or treating, even though she knew the kids had plans with their Dad & Lucas. He was there to pick them up at 6 pm, but she left with them, and wouldn't answer or return any calls. He had to wait over an hour for them to return. Ugh, it never ends. As if we don't have enough chaos, and it only hurts the kids. They said many times how they hated that the night was so short.

Anyway, we made the best of it. Here's some costume pictures!

Little Grizzly

Paws

The whole clan

Momma Bear & Baby Bear

Kisses from Mama Bear

Gran & GranDan came to see the kids off