It’s been a week since we left the hospital and we are both still excited and relieved to be home!!
Lily’s been doing great. The steroids have made her sleepy and she does have roid rage from time to time (which is scary to see – especially when it’s an almost 3 year old) but generally she’s been responding well to it all. So far I’ve noticed her nonverbal language improving (her hands go up when I say ‘up’ for example) and her motor skills are better too (she’s bending her knees when she walks!). But no marked difference in verbal language. Yet. Docs said to give it two to three weeks.
We have a follow up appointment on Thursday with the neurologist to check in.
I’m still not thrilled at administering the daily shot but I’m getting good at it. Lily is the best patient ever. She never cries when she gets it.
I still well up 😦
Sending love to all. And please keep the prayers and positive vibes coming our way.
C & L
Happy new year. We’ve been busy girls. At the hospital since Monday. Don’t know what day today is. But I think we can leave on Saturday. I really hope so.
We are making the most of it. I keep telling L we are on vacation – at the hospital!
Started the steroids a few says ago (to treat the ESES – a rare form of epilepsy she got diagnosed with the last time we were here). Today was my first time giving her an injection. She didn’t cry. But I sure did. My sweetie.
I’m hanging in there. One of my best friends from grad school was here with us the first two days and then the nanny came for a visit yesterday. John’s been popping in and out. So I’ve been getting some breaks here and there. Today a friend is coming who I met at the ashram over New Years.
Exhausted. But L is doing great.
Please keep sending positive vibes this way.
C & L