So far 2014 has been a busy year. Lily bounced back after having pneumonia over the holidays. She continues to give 200% in her therapies; nearly 18-20 hours a week. We have had some fun in between like playing hooky and going to Disneyland’s California Adventure Park, swimming, to the movies, boating, to school and skiing…yes, that’s right, SKIING!
After initiating the request for schooling for Lily a year ago and ultimately having to retain an attorney to advocate for Lily we (just 2 weeks ago) FINALLY added home instruction. Lily now has 2 hours a week with a teacher and 4 hours a week with a speech pathologist that specializes in AAC devices. AAC stands for Augmentative and Alternative Communication. And in Lily’s case she has the DynaVox computer that tracks her eye gaze. The computer is programed with language, pictures, requests including; “I want to read a book”, “Give dad an Atomic Wedgie” and “Give Charlotte a Spanking”, etc,; to give Lily the ability to communicate. We’ve had this equipment for a year but we have never had any support for the device leaving the programming up to me (ha!) Now we will have the expertise and consistency needed for Lily to be successful with the device. It will also aid in her academic studies.
Lily continues to build strength and regain motion throughout her body. She is now able to lay on her stomach propped-up on her elbows and remain in this position for about 15 minutes. That’s hard! It hurts my neck just thinking about it! As long as she’s motivated (with a funny cartoon) she has the endurance. She is regaining more movement in her arms. Her left side comes slower than the right but it’s great to see it’s just delayed. And now with her right arm she has immediate response when she’s asked to grab something, wave or give a high-five or a HUG.
Yes, I got my first hug with her right arm, my first hug in 18 months (sniff-sniff). She is also more ticklish all over…she especially likes raspberries blown on her belly.
Although she has yet to say words her vocals are ever changing. She has louder and deeper belly-laughs and also higher pitched squeals. But when one of her horse/speech therapists, Terri asked Lily if she wanted her to bring Mr. Bliss to her house for a playdate both of us swore she answered with an “Uh-Huh!”
Lily continues to participate in hippotherapy (horseback riding). She is riding Little Red, a darling red Icelandic horse, every Friday mornings at 10AM. She rides at the Shea Center (sheacenter.org) in San Juan Capistrano if you ever want to come cheer her on, she loves an audience. She has been riding about a year and she has made so much progress. When she started she could not hold her head up while riding. Now, she can hold her head up all on her own up to 20 minutes. Incredible.
Of course some of the fun activities for Lily continue to be spending time with her friends: at home and at school. We try to make a weekly visit with her class…she absolutely lights up with her friends. She’s also been on her Grandpa’s boat for some dolphin and whale watching—tis the season! And since our weather here in So Cal has been so ridiculously warm we’ve been spending lots of time in the pool and Jacuzzi. Lily’s muscle tone (spasticity) melts away when she’s in the warm water. She loves the water. Dad even takes her down the water slide…she LOVES it!!!! We recently played hooky and went to California Adventure. I will say that California Adventure is much more adapted to wheelchair accessibility than Disneyland. It was great to be able to get on more rides and with greater ease. We will definitely be heading back…but next time Dad will have to play hooky with us.
Since it’s been so warm here and our mountains were lacking snow we cancelled a couple planned trips to Mammoth. But thankfully they got a snow dumping a couple weeks ago and we headed up with some friends for President’s Day weekend. And I’m ecstatic to say that Lily “Lightning” Needham is back on the slopes! Can I hear a “WOO-HOOOO”!!! Just to clarify, Lily was given the nickname “Lily Lightning” by her past ski instructors at Mammoth—yes, she has the need for speed! And this trip she was back to rocking the slopes. Thanks to the Disabled Sports Eastern Sierra non-profit organization (www.disabledsportseasternsierra.org) for making it happen. I thought it would be a long process with lots of paperwork and doctor releases but it refreshingly wasn’t—it was simple. It was obvious that their goal is to get anyone and everyone regardless of disabilities on the mountain and give them an empowering opportunity to NORMAL and have a blast like everyone else. And for us it was the first time I truly felt like the 4 of us were doing something we all love doing together as a family. For 2 ½ hours we tracked through the woods and down the runs that Lily came to know and love years ago and lost ourselves in the sounds of laughter and swooshing snow. We can’t wait to get her on the slopes next time we head up—in less than 3 weeks!
We continue to pray, and pray, and pray for Lily’s continued healing and for her to return to her normal life that she knows and loves. We pray that she feels the love surrounding her and that she knows that she is God’s perfect creation and that nothing could make us love her more. That we will never give up on her and that she will never be alone. That she knows that we know that she is the same girl on the inside and always will be. For her to be compassionate for those who stare or don’t know what to say to her because she’s in a wheelchair or because she can’t respond verbally—such tough realities for any person to endure; especially a 10-year old girl. And yet she faces each new day with a long stretch and an enduring smile—ready to give her all.
Please continue to pray for Lily . . . we are so very grateful and we couldn’t ask for anything more.