makin’ it.

Days are feeling more manageable around here. I’m not having to hold Lily quite as much during the day which allows me to spend more quality time with Lincoln. This all helps how many breakdowns Lincoln has during the day. Lily is also sleeping better at night which really has given me hope that there is light at the end of the tunnel. I don’t like that my mood and sanity is determined mostly by sleep schedules, but I guess that’s where I’m at right now.

We had a neurologist appointment a few weeks ago and another EEG (she had two when we were in the hospital). We were kind of disappointed with the results. She still has potential for seizures on the right side of her brain, however the slowness is gone. We are in the process of switching her anti-seizure medicine for one that is better for long-term. Although I thought I would be okay if the test came back not completely clear, I was still pretty bummed. She is really doing well with developmental things, so I was hoping the test would show that improvement as well. The neurologist also said that with the amount of damage they saw in Lily’s MRI, if she comes out of this with no effects from the meningitis, she would be very fortunate. That wasn’t pleasant to hear either. It’s always a reality check with the neurologist. For a day or two, I was pretty down. But, I know she is doing so well. I can see her catching up to where she should be every day. We’ve been very encouraged with the first steps therapy. We had to get a new therapist because our old one had some family issues to tend to. The new therapist hasn’t seen Lily as much, but she is very pleased with where she is at right now.

I love to see her smile. I think the fact that Lincoln was such a stone-faced baby makes every smile that Lily gives me a true miracle. I see Lily everyday (and feels like every minute of everyday), but when the nurses at our doctor’s office see her and say they think about her all the time and know she’s a miracle makes me remember how far she’s come.

We traveled for Thanksgiving to see both families. Lily rolled over some more on Thanksgiving and started babbling. Now it feels like she is “talking” all the time. Lincoln found some real gems from my youth…

…my HOTT pink glasses from when I was 10 years old. I found my old blanket from when I was little. Oddly enough, we left Lincoln’s blanket at my parents’ house. Yikes. I didn’t realize how attached he is to little Lambie. He was so shocked and devastated when we told him what happened. It was like we had forgotten Lily. The pictures my parents sent of Lambie playing with toys at their house helped. And when we got the package in the mail, he didn’t put it down the rest of the day. I’m glad we don’t need to wake up to crying in the middle of the night because he misses Lambie. Looks like I might be ordering a back-up.

Lincoln is taking a picture of her with his Buzz Lightyear phone.

It looks like he’s trying to help her…but I think he is saying that she needs to get off his toy.

Everyone loves the new iPad. The “no touch” policy didn’t last long.

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~ by carolynafrost on December 1, 2011.