7.3.11

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Aimee got her first haircut last weekend from her Auntie Jennifer (Ed's sister). I have been wanting to get it cut for about a year now and Jennifer was so kind to come over to cut it for us in our home. I had been nervous to try cutting her hair (hence the delay), but it went really great. I think Jennifer cut off a good 3 inches! It seems to have actually made Aimee's hair curlier!

My Grandma Halo went on to heaven last night. I am so thankful for the amazing memories I have of her and my Grandpa Tom. My dear Grandma taught me how to garden, sew, knit, bake, paint...so many things. Wow! I am blessed by the amazing woman she is and look forward to the day when I get to see her completely renewed as she is in heaven now!Aimee has had her first 2 speech therapy appointments over the last couple weeks and we will add that to our weekly appointment routine. It is difficult to tell so early how beneficial it will be. So far, the therapist doesn't seem to quite understand Aimee. She has brought over very odd...well things I wouldn't expect Aimee to play with. A few very overwhelming toys that blow air, play music, send balls racing through tubes, ect all at the same time! And then blocks to try to teach her to knock over...hmm... I'm sure she has great ideas and I am trying to be open to her suggestions as she learns more about Aimee.

Monday Aimee had another feeding therapy appointment at the hospital. It went really, really well. They were so pleased with her progress that we may be able to have a new swallow study done. We have to try a few things first to see how Aimee can handle a bit more challenge (increasing her "bite" size to 2 mls at a time from 1 ml and then increasing her daily taste from 12 mls to 24 mls). It has been over a year since her last swallow study and she has definitely improved in the use of her tongue...although she does still choke fairly often. I am hopeful that we will be able to increase the amount of food she can have by mouth. Maybe we'll even be able to increase it to be a portion of her daily nutrition.

Tuesday we took Aimee in for a couple tests. She had a CT scan done to look at the internal structure of her ears and then she had a brain MRI done. It is never fun to have her put under anesthesia. Thankfully the anesthesiologist was really great and gave a her much lower dose than normal and also stopped it before the test ended. She only took about an extra hour to wake up this time! Not bad at all.




After she woke up, we met with the doctor in Neurology to discuss her seizures, part of the brain MRI and her medications. The result of this appointment was an increase in the daily dose of one her medicines. We haven't seen a significant reduction in the number of her seizures, although she has not had any longer than 1-2 minutes recently. We increased the medication on Tuesday and since that time Aimee has been even more emotional, with even more hysterical moods. She gets extremely, over the top excited and then very, very sad. I would definitely qualify it is as a behavior change side effect of this medicine. Bummer.