Thanks to Naney for all the help this weekend! Bill and I went out Friday night for a couple of hours to just sit and talk. It was wonderful and much-needed. And I even got out for a little while Friday afternoon completely by myself.
There is a non-profit support association called Children's Stroke and Hemiplegia Association that offers "information and support to families of infants, children, and young adults who have hemiplegia or hemiplegic cerebral palsy." This group offers an on-line parent discussion board. Since we found out about the RHCP in August, I've been 'lurking' on the website. This past week with our 'official' diagnosis, I decided to post a message on the board to see if there were any parents in our area. Low and behold, there were. One woman emailed me to tell me about her 5 year old who has Imogene's same diagnosis. Turns out she actually lives very close to us, and we're planning to have coffee sometime soon. Several other parents emailed to 'welcome' us to the group and offer suggestions for therapists and doctors in the area. Others emailed from across the country to just say 'we know how you feel and hope we can help.' It's a great support group, and another reminder of how good the world can be!
We're awaiting a call from the physiatrist at Children's to see if they can get us in. Of course we can't just call somewhere and get an appointment! Oh no, we have to pick or be sent to the most popular specialists in the area. I am comforted though that this doctor, Dr. Morozova, must be good if she's that booked. Susan the PT has also heard great things about her from other patients. After doing some asking around about the opthamologists, we're going to try for one of the two Dr. McClintock recommended at Children's.
Since she hasn't done it again, it won't jeinx anything to report that Imogene slept last week from 7:30 until 4:30 without waking up once. This is the longest she's EVER slept without 'interruption'. Of course, every other night since, she's been back to her usual waking 2 - 4 times a night. But, once, just that once, she did it!
Some things that Lily has said lately.
While calling her daddy's attention to something, "Hey, Bill Sigler, come see this!"
She had her first piece of gum on Thursday. No matter how many times Maggie and I reminded her to not swallow it - yep -she swallowed it. It was so cute though because she was just talking away in the backseat and I asked her, "Lily, where is your gum?" (Fearing the worst for my car.) She had the funniest surprised face, it was almost goofy, and said "Um, I think....um, I don't know...I swallowed it. Yes mom, it's in my tummy." And then a few seconds later, "I don't think I really like gum."
The moon was full and bright last night on our way home from dinner. As she and Bill were 'howling' at the moon in the car, like they used to do a lot a few months ago, we were reminded of when she said once, as Bill started to play the howling game, "No, dad, we're not doing that right now." She couldn't see the moon last night from her seat in the car. When at first we couldn't find it when we got out of the car, she said, "I guess we drove here faster than the moon did."