Tuesday, May 25, 2010

We've Been Busy

Last week was Chloe's appointment with her feeding OT. Tammy was so impressed with Ms. Chloe's oromotor development. She said judging her on her oromotor skills she would never guess that she is tube fed even as much as she is (which is about 40% of her daily intake now - gooooo Chloe!!!!). I was just thrilled to hear all this good news about how Chloe is doing! I can get so frustrated with how far we have to go still that I can sometimes lose sight of how far she has come!

We also had Chloe's IFSP (Individualized Family Service Plan). That's the service planning meeting to determine what services Chloe "needs". This was a big one even though it wasn't her annual because we are moving to a new town this summer and will be getting all new therapists, so we wanted to make sure her current therapists had a chance to make goals for her and that we had a transition plan in place. They used a new assessment tool that focused on her daily routines and how well she meets my expectations for each routine and then how satisfied I am with each routine. I found the tool to be quite useful in directing our goal setting and figuring out what are some things I would like to see change. It clearly gave me a strong voice in determining her goals.

Lately, I've really been having a hard time with Chloe's inability to walk, as the weather is nice and I'm really having trouble with her crawling outside, and it was so nice to have a table full of sympathy at her IFSP. I get tired of hearing "oh, she'll walk". I KNOW she WILL walk, it's just hard that she's not walking now. That may sound harsh, but that's my reality. I know that in many ways those of us who are blessed with a child with Down syndrome get to enjoy having our "babies" longer, but that has it's challenges as well. For me, it's been a long time to have a crawler. Don't get me wrong, please! I LOVE Chloe for who she is and all that she can do. This is just my struggle right now and simply having a group of professionals hear me out and sympathize with me was empowering and validating. So onward and upward - I can stop dwelling on it and turn my focus to helping her reach her goals, as SHE is ready!

Another big piece of our meeting focused on feeding. Since Chloe had the stomach bug again she stopped taking a bottle all together for a few days. I was very discouraged and worried we had hit a wall. But just as I was losing hope, she picked up the pace again and is actually drinking more then she was before! GO CHLOE!!! She takes 18-24 ounces by mouth per day now. I think I need to say it again. . . GO CHLOE!

Last but not least we had her ENT (Ear, Nose and Throat) appointment on monday. A hearing test showed that she had fluid in her ears and although her hearing is "fine" docs don't like to let children with developmental and particularly speech delays suffer from ANY hearing loss whatsoever as that will have an adverse effect on further speech development. So they take this very seriously. Fortunately, few ear infections and little to no hearing loss means we can "wait and see". So no tubes for now!!! Wooooo-hooooo! She'll go again in September for a hearing test followed by an immediate ENT appointment for the most consistent care. Have I mentioned we have the best ENT EVER!!!! :) Dr. Baum ROCKS!

So we've been busy, but a good busy. Chloe's the hardest worker that I know. I've got a video to post soon. Until then. . .smiles :)