Well, first of all we got Avelines braces looked at, and they decided to try and take away the hinged effect of her braces, and a few other adjustments. We were hopeful these changes would help re-correct her walking, but two weeks later we are still having some problems. So we go back this week to assess and possibly get new solid braces made for her.

Second, the same week Aveline FINALLY received her wheelchair. We have been waiting for about 4 months for our insurance to approve, get everything ordered and get the parts and go pick it up. Every time a package would come in the mail she would ask, “it my wheelchair?”. We would explain to her that they would call us to come get it when it was ready…. low and behold they called and we scheduled a pickup.

The morning of…

“Aveline, we are going to the wheelchair place to get your wheelchair today!” … to which our sweet girl yelled at the top of her lungs a great big, “YAAAAAYYYYYY!!!” She struted into the building and said, “I get my wheelchair pease” we told them what she said and they took us back. They had it sitting out waiting, made a few adjustments, and offered to let her try to propel herself… and this girl, unlocked those wheels and took off like she knew just what to do!!! Smart little lady!

(Sorry if the video is sideways, technical difficulties. Lol)

Since then we have been working on propelling and steering herself with her pt. She also got some sweet unicorn gel gloves to protect her hands from the wheels. It was definitely the right choice to get her the chair over the medical stroller!

That same day we also had a repeat swallow study for Aveline. Overall she did very well, they explained why she bites straws and mouth pieces so much, to help protect herself and control the flow. She did not aspirate on the study, and only had one or two instances of her muscles closing a little too slowly (but with the hypotonia that makes sense, all her muscles are a little slower and fatigue faster than an average person). Her speech and feeding therapist was very encouraged by the results of the study, and suggested another cup for us to try with her, and we have had wonderful success with it!! She also got a new bear after the study and was so brave and proud of doing well.

This upcoming Tuesday, the 9th of April we will make the trek back down to her specialists and see her gi doctor. We are prayerful and hopeful that at this appointment she too agrees that everything from the swallow study and her nutritionists notes and recommendation for tube removal will be enough, and we will hopefully be tube free next week! Our next big prayer is, that if she does get it removed that it closes up quickly and well on its own, otherwise we will be looking at surgery end of April/early May to surgically close it.

Just wanted to give everyone a quick update on our sweet Aveline. She is scared about possibly getting her tube removed, but we are trying to encourage and celebrate it. Novella has been a huge encourager and also comforter to Aveline. They have a unique and beautiful bond.