Thursday, May 31, 2012

{Making Progress}

untitled-12

Progress is just so darn awesome to watch and even more spectacular to be apart of. I know people say all the time to us that they just can't even imagine going through some of the difficult things we have faced and then choosing to do it all again -- times two.  I realize that people will never fully understand unless they have walked in our shoes, but this little girl in these photos is a perfect example of just how we can do this again -- times two.  There is no greater feeling than being watching a miracle unfold right before your eyes.  Everyday I look at this child and I'm just totally blown away.  Every session of physical therapy I hold back tears, cause I'm simply overwhelmed with the transformation that has occurred in her little life.  To think that our one decision to say yes -- to say yes to Gods plan for our lives, made this all possible.  Wow.  Literally takes my breath away.

untitled-13

Anyway, Angela is getting so very strong.  She is moving all around the living room on her back and she is moving fast!  The connection has finally been made that if she moves she actually goes somewhere and can get things she wants.  Because of her visual impairment this has been a huge struggle for her to learn.  But now, she can see a ball all the way across the room, decide she wants it and will go over and get it.  Big, huge, amazing stuff! 

Because of her new strength we have been able to make a few modifications to her wheelchair.  We are beginning to prepare her for her new chair by keeping the chair at a 90 degree angle all the times and to not use the tilt feature in the chair.  When Angela first came home she really needed the tilt as she has little head and trunk control.  She no longer needs this and since her new chair will not have this feature I figured we would begin now.  We also removed her arm rests.  I feel like this opened up her world a bit more.  Angela's tone throughout her trunk is both floppy and spastic.  She functions very well like this.  By opening up her range of motion she is now able to bend over and reach for things (mostly Jayden) then use her spastic tone to pull herself back up.  She does not do well with a chest harness.  We have been told by some PT's that it is important that she wears it so she can focus more on using her arms and not have to think so hard about her trunk -- this isn't how Angela works.  If you give her more range of motion her little body just functions much better.

untitled-10

One of the most exciting changes is that Angela was given a new iPad.  People are amazing and we are so very thankful beyond what I could possible write here on this blog.  As a part of Angela's new IEP for school one of our goals will be to take a short video clip at the end of each school day allowing Angela, with the help of her classmates and aid to tell me what they did in school each day.  Since Angela will not be able to express it herself we will use the iPad to record it so when she gets home she can tell me by showing me her video clip.  I have another mom to thank for this idea -- very excited about it.

untitled-15

Angela communication skills using the My First AAC aap have skyrocketed.  This girl loves to talk and when her talker or iPad is not within reach she get very mad and will hit her arm down until I either get it or tell her the battery is dead.  The one issue that I had is that when in many social settings people cannot hear her voice though the iPad.  Last week I purchased a speaker system that attaches directly onto the iPad making it louder so that her little voice can her heard -- after all she has very important things to say.

Love this girl -- love watching the hand of God so strongly on her life.  Love that I can play a small part in her story -- in her miracle!

7 comments:

Emily said...

I've just fallen in love with this sweetie! Thanks for sharing her life!

Laura said...

Not only do i love hearing about her progress and how God is working through your family but I love her shirt as it just seems to sum up her sweet little soul :)

charity said...

i love reading the progress shes making

RebeccaL. said...

She seems to be a real sweetie! I just wanted to say I LOVE her hair!!! I have curly hair too but hers is just darling.

Missy said...

I so understand and get what you say about watching an unfolding miracle. I constantly watch my daughter during therapy and most times have my breath taken away (a bit like being on a roller coaster) and find myself holding back the tears, in both amazement and the realization of my dreams for her and about her are becoming reality.

Anonymous said...

Hello, I just happened to stumble across your blog this morning and what a blessing it was! I read the post about the IPAD. It is kind of pricy but check out the app Proloquo2Go . It is an augmentative communication program for the IPAD/IPHONe/IPOD! It has been a blessing for my students and had really opened up their line of communication and the world around them. Just check it out!

Karen Owens said...

@annon-- proloquo is way to complex for Angela. Plus the symbols used are not the best for severe visual impairment as the stoke width is too small. Thanks though, the my first AAC is a good stepping stone to more complex AAC systems. It's geared towards toddlers and preschool age.