This past week has gone by so quickly. Our week was jammed packed with so many fun and exciting things -- I've got lots to talk about! Our week started with kids Camp. In case you do not know, I am the assistant to the kid's Pastor at Morning Star Fellowship and my family along with about a hundred other kids and leaders set off to camp on Tuesday for lots of fun adventures and also a time to grow closer to God!
We all had a great time at camp, though it was a bit difficult for Angela, though she made it through! Feeding for Angela has still been a huge challenge. Thanks for all you tips and advice. Angela is a tough one since she had multiple disabilities going against her. We decided to back off a bit and let her take a much needed break from full oral feedings. Angela 1P36 deletion has caused her to have several defects in her mouth. She does not have a frenulum, which is that little piece of tissue that attaches your tongue to the bottom of your mouth. This causes her tongue to be completely free, which adds difficulty to the feeding process. She also has a deformed lower jaw that forms a U-shape when looking at her straight on as well as missing teeth. This mean that when she closes her mouth there is a nice size hole in the front of her mouth where her teeth should meet. This allows way to much room for not only her tongue to slip out but also food. I feel like we really need to address these issues before we continue to push her.
Despite feeding issues she is moving forward and enjoying the summer fun with her big sister Madison! Both girls got new bikes last week and we took our very first family bike ride, which was so special on so many levels! Angela's bike was custom made just for her through the local Ambucs -- I'll be doing a separate post on her new bike with lots of photos!
To end our wonderful week we took a trip to Dutch Wonderland with my parents. I was feeling a bit anxious about going since I have so many memories of taking Gavin and Madison there, but once we got there it was so much fun and it was great to make new memories. Before we left I made Angela a special support harness so that she would be able to ride the ride, since she is a thrill seeker and I knew she would totally love it!
The harness was made from thick fabric along with Velcro. The harness wrapped around her torso and there was also a piece of fabric that ran between her leg. Attached to the torso where two long pieces of fabric that went in front of her shoulders and could be looped around the back of the ride or to Madison to give her extra support and to keep her from falling side to side or forward. It worked great and she had a blast. She tired out pretty quickly in the sun so she only made it onto a few rides -- but totally loved them all! The park was very accessible and we were able to get a pass so we could enter through the exit and not have to worry about getting her chair through the lines. The staff was super nice and assured us that they would stop the rides if Angela needed to get off -- which never happened! My only complaint was that the monorail was not accessible and we were unable to go on it. There were two flights of steps leading up to it and we did want to leave Angela's wheelchair unattended at the bottom. But this was such a tiny negative amongst so many positives!
We are all so ready for a nice quiet week.