starting a blog

I have decided to create this blog as a way to update family and friends on the progress of our daughter, Eve. I also think it will be helpful for me to track her development. I am hoping to be able to update it frequently enough.

So that we are on the same page, Eve is developmentally delayed and we are searching for a diagnosis. We still haven't ruled out Cerebral Palsy, but we really don't seem to have leads other than that. She has had 2 MRIs of the brain, and both have been basically normal. So, there is no brain damage and no "white matter disease." The next step is an MRI of the spine. I am hoping the neurologist calls today so we can discuss it. As of right now, the MRI is scheduled for December 13th - 3 months away! The reason for this is because the Dr ordered it to be done under general anesthesia - which they only do for 6 patients a month - thus the long wait. However, if they can do it under conscious sedation (like the other 2 MRIs she's had done), then she can get an appt in about 3 weeks. So, I am hoping to get some answers today.

Other issues- shopping at the grocery store has become impossible by myself. Eve is so scared of sittting in the cart, that she clutches the bars for dear life and screams. I think it is a balance issue. I can't push the cart and hold her, so I am trying to figure this out. I am meeting the PT at the grocery store on Thurs to problem solve. We have already tried padding and cushioning to help her feel secure. Jim thinks it might be a height thing so we will try a cart cover so she can't see through the bars. I am also borrowing a sling from a coworker, so I can put Eve on my hip or back. Finally, we are going to try putting her in the big part of the cart with maybe a Bobby for support.

She has been walking really well with her AFOs (Ankle Foot Orthotics) and Jim and I have committed to really working with her on these. We want to schedule in time that she walks each day after dinner (in addition to at daycare) . She doesn't wear them all day because it makes it hard for her to crawl. Also, I think she is cognitively doing well. Last night at dinner I said, "Eve, use your other hand to eat. Try picking up your food with your other hand." I did not show her what I meant - I just used the words. And, wouldn't you know it - she did it! Not successfully, but she actually tried to use her bad hand to feed herself. I was very proud of her. She also seems to be talking more this week. She's been spontaneously naming things (house, door, etc) and definitely likes "Elno" (Elmo). She has started calling dinner "nin nin" which is really supposed to be "din din" (thanks, Jim). Actually, she calls every meal nin nin. So we are working on teaching her breakfast and lunch. We made progress with lunch. Oh, and she actually calls for her medicine (she gets a daily antibiotic for her kidney reflux). What a riot.

I am going to take her to the pediatrician tomorrow because she still hasn't totally shaken that cough. It's been over 3 weeks since it started, and I just want her looked at. I'll try to post pictures soon - especially ones with her walking with her AFOs.