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Thursday, September 9, 2010

On the right track

Lila had a doctor appointment yesterday and we finally got some good news. She weighed in at 13 pounds! Hallelujah! The doctor said that she has gained approx. 18 ounces in just under a month! We are so glad that we are finally putting some weight on : ) she is continuing to get stronger. Tomorrow we have a speech therapist coming by to do a feeding evaluation. Hopefully she can give us some answers. Lila doesn't really want anything to do with her bottles lately. In the last few days she's only taken about two ounces from a bottle. I'm hoping that the speech therapist might find something that the doctors have over looked.
In other news, reality has started to sink in. Until the feeding tube, you couldn't tell by looking at Lila that she had spina bifida. She was born with a club foot but that was easy to hide and the cast was usually under pants and such. Now that Lila has the NG tube EVERYONE seems to be looking. I really don't mind when people ask me about it, I'm happy to explain but I really can't stand when people stare at her or look at her pitifully, which happens a lot. I guess I knew that one day we would deal with something like this but I wasn't prepared for some of the reactions we get. I wish that everyone could just see the miracle baby I see but at least we know how awesome she is : ) and everyone else will figure it out later!
Thanks for following!!

Monday, September 6, 2010

Getting ready...

We are getting ready for the wedding!! Oct 2nd is coming way to fast! My mom found a beautiful dress for Miss. Lila to wear : ) we have been doing a lot of shopping. The pictures above are of Lila before a shopping excursion. Lila has been working hard on trying to sit up. She also is working hard on getting some teeth. Her hand is constantly in her mouth : ) and she is drooling more than usual. We are still doing DT (developmental therapy) once a week and OT (occupational therapy) once a week. We are looking into getting a vision assessment and a feeding assessment. Our Early Intervention coordinator is hoping to get us a feeding therapist to work with Lila. Lila is slowly gaining weight and is pulling her tube out less. We are still having to cath her three to four times a day but she is peeing on her own somewhat. We will see the urologist when we go back to the GI. That's all for now! Blog more later! Thanks for following!
Alyssa, Daniel, and Lila