Feeling guilty about something today...this morning I went to awake Asia for school and there was the most intense "disgusting" smell in the hallway before I got to her room. I was fearful for what I would find:) She has a glass door so I can see her in her bed and she was asleep all tucked in nicely so I figured she had soiled herself and was a mess but what i didn't expect was that she threw up sometime during the night and was sleeping in it-I felt SO bad! It was hidden all under her covers. I didn't hear her make a sound last night and she didn't come banging on her door. She didn't appear sick yesterday or all day today? I did keep her home from school just in case but, many times this school year she has thrown up once during the day and then just fine after that-I'm not sure what is going on but yes, I did feel bad I didn't know. What a miserable thing for someone to be stuck in and yet again, she never seems to notice anything wrong in those types of situations. Never shows a desire that she needs to be changed or cleaned up. I hope that changes someday.
Other notes:
~She loves to be sung to and thinks it's hilarious when you replace words in the song with her name"Asia":) Got her out of a bad mood a couple of times today.
~She is liking food that is soft lately like mashed potatoes, squash, avocados etc. Spits everything else out.
~Pulled out a huge chunk of little bros hair (poor guy) and screamed quite a bit.
~I must have done something right today because before bed she put her little hands around my neck and gave me a kiss goodnight:):) Love that!
I just stayed up until 3 reading your blog. I think it's a great idea! Do you know if there is an organization dedicated to this type of deletion?
ReplyDeleteAsia is so lucky to have you!
I have found a couple of great groups with families who have children with the 2q23.1 deletion. I have a link at the bottom of the blog with one and FB is the other. Not much out there yet but, that is what all of the "awareness" is for-try to find more people in the same situation and help people that dont know what their children have to figure it out.
ReplyDelete