Monday, November 24, 2008

Thanks Giving

I was reading an article today about a man who killed his autistic son and then himself. Morbid way to start this post I agree but it made me think about how grateful I am for Lily.

She is more than just this squeaking, babbling, squirming, hearing aid-pulling-out, giggling, crying, smiling sleepy, pooping toddler now.

She has brought so many new people into our lives. It started at the hospital where she was born and then at Children's in Chicago. We met great nurses, NPs and doctors. I met people from all over the world at the Ronald McDonald House. Then through Early Intervention we have met not only great therapists, but warm, friendly caring individuals.

I am thankful also for all the people that prayed for Lily through her surgeries. I am happy I still have contact with the people I used to work with that kept me supported and laughing through everything. When I was working I spoke to people all over the country and learned through some of them of their special needs children and their struggles and triumphs. It made me grateful to think of how easy Lily is -- it gave me perspective I didn't have before.

I am grateful to the moms that I met with heart kids at the hospital (take that HIPAA!!) and online. To Charge families I have met through the yahoo listserv. Every day they make my life easier by helping me vent just by reading their comments and wisdom and humor.

There are all kinds of families in this world and I am happy to be part of them and overjoyed to have Lily and Jim with me. Thanks to my husband's side of the family and to my brother, sis in law and my parents. I love you all.

Monday, November 17, 2008

More Doctors?

Lily had her hearing therapy today with Cathy who is a deafblind specialist and sees another of our local Charger families. I heard that Christian is back home now and laughing and feeling better!! Yeah "Little Chicken Man"!

Cathy noticed that Lily's left eye was squinted and fluttering. She was having a muscle spasm in her eyelid. I told her that we had seen this before and that her eye doctor didn't make any big deal out of it. Cathy pointed out that her whole face on that side was kind of moving and said we should get with a pediatric neurologist. With Charge I guess it could be cranial nerve issues. I don't what they would do for it. But i do know this issue is becoming much more frequent.

She did make it all day today without a headband over her hearing aid and DID NOT TOUCH IT! Wow! Amazing! Never thought I would see THIS day coming this soon. But tomorrow she could be Little Miss Feisty again...

We are probably up for another nasal endoscopy and most probably tubes in Lily's ears per her Nose ENT. I have to check in with her Ear ENT December 12th. At least the Nose ENT could do both procedures at one time and she would probably just stay overnight at Children's again.

Please keep little Vivian in your thoughts and prayers if you read this as she is having Choanal Atresia Surgery this Wednesday. She looks like Lily's little sister!!

Wednesday, November 12, 2008

Sitting Pretty!

Lily sat by herself for 4 minutes yesterday with her OT therapist, the fantastic Melissa. She did a few more minutes today with Michele her PT. She really has not wanted to do tummy time. Or sit up unless it's in her high chair or on the couch or in her crib. She has been trying to lift her head and shoulders off of the mattress, changing table and the floor though. I have a feeling if the light ever goes on then we will be in BIG trouble.

I took Lily to the eye doctor today. She said Lily's vision is great considering she has the coloboma. She said she will probably get glasses in a year. She is nearsighted and has astigmatism.

So good news!!