Many Firsts

Hi everyone! I first want to apologize for the lack of posting over the last month. We have been very busy and mom went back to work, so it has been a little crazy! Anyway I have had lots of firsts over this last month. Here is my list:


1. I attended my first wedding (and was pretty well-behaved!!)
2. I went to the Milwaukee County Zoo to the Herma Heart picnic and saw some of my old docs
3. I traveled all the way to Green Bay for my cousin Alex's high school graduation party
4. I visited my mom's school and met many of my mom's co-workers (no kids though, too many germs!!)
5. I played outside on my new deck (see pics below)
6. I went on my first boat ride (see pics below)

Mom is back to work, so my grandmas are taking care of me again. They were impressed with how much stronger I am since they last took care of me all day in the beginning of June. I admit, I am showing off maybe just a little too! :) I am continuing to make huge gains and my physical therapist is happy with my progress. I am still quite behind, but maybe this is my year to start catching up. Mom and Dad are weaning me off of my last 2 meds and I am doing great! Once those 2 meds are gone, I will only have a multi-vitamin and Previcid left for my reflux. You should have seen my list of meds right when I got out of the hospital! I also visited my pediatric cardiologist recently and he things I look great. We don't have to see him for another 6 months. I like him a lot, but the less doctor appointments I have the better! 


I have a feeding specialist appointment at the end of September in Milwaukee. Hopefully they can get my oral feeding situation figured out! I really want to eat!! I also have a bronchoscopy at the end of October for the docs to look at my airways and see if there is anything physically stopping me from orally eating. Mom and Dad are a little nervous about that since it is considered day surgery and I will have to be put under. I am an old pro at that kind of stuff...but it still worries them. 


Thank you for continuing to follow me. Please keep me and my family in your thoughts and prayers.