From Erik and Dawn:
We know, we know!! It's been 3 months since this blog has been updated, and we thought about it often, but unfortunately, with a 17 year old, 14 year old, 12 year old, 19 month old and 3 month old, time is not exactly on our side. We do, however, take lots of pictures and videos, so our time is well documented. (You can enjoy many of her short videos below.)
Analise has really been improving in all areas of her life. She is really starting to use her voice now. Her vocabulary, although small, is expanding daily and her mimicking is really cute. She actually understands almost everything we ask or tell her, but we are now working on the process of getting her to say those things on her own.
Analise loves music and is even starting to sing some words and dance to the songs she loves.
Analise standing and dancing to Abuela singing:
Dawn and I noticed that her upper frenulum (skin between her upper lip and teeth) comes down very far and is attached between her two front teeth. We found that several AMC kids had the same problem so it could be a part of the condition. There are a few different options, but most revolve around waiting a couple of years to see what will happen. The dentists actually say that the kids will eventually fall and the frenulum will tear with the fall. OUCH!! Not exactly what we want to happen to Analise, especially since she won't be able to break the fall at all.
Physically, Analise is much more active. She can scoot around the entire house in record time, and smiles the whole way. She still has minimal active arm movement. Her right index finger still has a strong twitch, but we are waiting for the others to follow suit.
We are also trying electric stimulation on her forearms and biceps. It's not easy (on her or us), but hopefully it will stimulate her muscles and help them to move. We got some information from a fellow AMC father, Jason Coutee, about how the muscle stimulation has helped his son Jace. Don't know if you remember Jason, but we posted some of the songs he has written about his son a while back. I think you can also see them on his new blog:
http://amyoplasia.com/?page_id=93
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| Muscle stimulation time...hey this isn't that bad!! |
Video of Analise on her new Gait Trainer:
Although her arms don't move "regularly", she finds a way to do everything!! Some of the things she can do: play the piano and xylophone, pick up small and large items, stack toys and blocks, put things away in containers, push buttons (especially on the remote control when I have sports on TV), tap rocks together to make music, and clap (in her own way).
Here are some short videos of Analise doing things her way:
Playing the Xylophone, as well as learning her colors!!
Putting her toys away, this way may take a little longer, but it gets done!!
Playing with blocks-She has learned how to say "help me".
Playing with puzzles-I can't believe she has figured out how to put the puzzle piece back in!!
Playing the keyboards
(her cousin Bela is going to teach her
how to play the piano)
Making "music" with Grandpa, she loves those rocks!!
Moving her arms with a little bit of help from Erik's
invention
Turning the pages of her books, one at a time.
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| But I want to watch Laurie Berkner, not Football!! |
Analise is truly an amazing girl that doesn't give up. Last week she also got her new AFO's (ankle foot orthotic) and KAFO's (knee ankle foot orthoticts) that fit much better. The staff at Johnson's Orthopedic in Riverside are incredible and really do everything they can for Analise.
THERE IS ALSO SOME MORE GREAT NEWS, WE'VE SAVED THE BEST FOR LAST!!:
Analise is getting fitted for a special Wilmington Robotic Exoskeleton (WREX), an arm orthosis that helps children with very little residual strength to move their arms in space.
We are very excited about this, especially since there are very few people in the world that have this orthosis! In June, we are visiting Dr. vanBosse and Dr. Zlotolow in Philadelphia for her semi-annual checkups, and then we are headed to Delaware to get Analise fitted for the WREX. WREX was even featured on a little girl with AMC named Emma during the New Year's Eve videos of 2012 on ABC. This is still very new for us, so as we find out more information, we will let everyone know.
Check out a video with Emma and her Magic Arms:
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| What Erik rigged up in the meantime to help Analise move her arms...let's call it a very primitive WREX |
We will also be attending the AMC convention in Las Vegas this July for the first time. It will be exciting to finally meet all of the great people we hear and read about on Facebook and through Shriners in Philadelphia. We can't wait!
Family update:
Dawn has been back to work for a couple months now and feels very busy, as expected, but somehow keeps a smile on her face.
Kaley is getting very close to turning 18 and graduating from high school. She also bought a cute little car for herself, so she will be looking for work very soon.
And the littlest one, Blake, he is as cute as can be. Analise absolutely adores him and we are pretty sure he is going to think his name is "You're so cute!" because we say that about 100 times a day. He is always happy and smiling and definitely brightens our family's day.
Sorry if we have been a little out of the loop with everyone, but hopefully soon we will get back to "normal" hahahahaha.
Have a great Easter, and hope you had a wonderful Christmas!
