Blog

Livy's Hope Blog

Welcome to the Livy's Hope Blog!

Talk of Summertime

Talk of Summertime

Summer is in full swing and we are all keeping very busy. Livy has been attending the ESY (extended school year) program at her school. It is a shortened day and only four days a week but it allows her to keep working on her skills so they are not lost over the summer break.

We had a wonderful presentation at the Family Cafe in Orlando! We were a bit worried about Livy because the day before she woke with a long seizure and slept most the afternoon. But it all went off without a hitch and she did beautifully. Jon is working on the video and hopes to have it up soon. It was a very positive experience for all of us and we met some wonderful people. Hailey had a blast the entire weekend. We hope to do this again next year.

Livy has been making some great progress at therapy. Her latest accomplishments have been weight bearing through her left leg while in a standing position and holding her head up for longer periods of time while lying on her stomach. It is particularly difficult for her to look to the right side while lying on her stomach because of her vision deprivation on that side.

Her last intensive therapy session proved to be very difficult for her. For some reason, she was more physically exhausted and would fall off to sleep within one to two hours. The therapist and I were having a very hard time keeping her awake. She would drift off and then most times woke with a seizure. Physically she was just not able to handle the whole session so we are holding off for a little while longer. We are planning to possibly shorten the intensive sessions but increase the amount of therapy she receives on a weekly basis. Her little body is just telling us it can't handle the lengthy sessions right now and we will have to work up to them again.

In the seizure department, we are still seeing them pretty much on a weekly basis. They most usually occur during that dreaded sleep-wake cycle. They are still quite mild but can be very lengthy. We recently increased one of her medications as we have been weaning very slowly off another. Who knows the rhyme or reason with them but we are just thankful for the good days.

Livy has also been doing great with eating by mouth! The majority of her nutrition is given through her Mic-Key button but she can tolerate many soft and pureed foods by mouth. Her latest favorite was the chocolate frosting on a triple chocolate cupcake from Fresh Market. She must be my little girl :)

We have some doctors appointments coming up for usual follow-ups: vision, nutrition, and endocrinology. But we will be sure to squeeze in some summer fun. We hope everyone is enjoying their summer so far!

Family Cafe Conference 2012 Presentation
"Art by Hailey" Note Card Set

Related Posts

 

Comments 2

Guest - Lisa on Thursday, 05 July 2012 13:14

Same with my daughter..I'm thankful for the good days..sometimes just the good moments.
Beautiful picture of beautiful girls!

Same with my daughter..I'm thankful for the good days..sometimes just the good moments. Beautiful picture of beautiful girls!
Guest - Melissa Surprenant on Monday, 16 July 2012 16:49

Glad to hear she is eating a bit by mouth. Frosting and fun stuff like that must make her smile! Can't get that through a mic-key. These baby steps are really huge steps for her. Congrats!

Glad to hear she is eating a bit by mouth. Frosting and fun stuff like that must make her smile! Can't get that through a mic-key. These baby steps are really huge steps for her. Congrats!
Already Registered? Login Here
Guest
Thursday, 21 September 2017

Connect today and join us on
our journey of hope.

 

Facebook Twitter Pinterest Instagram Youtube Contact Us