Monday, December 7, 2015

Move with me!

Today is the last day of Infantile Spasms Awareness Week, so it seemed fitting to post our update on Bex's progress with Physical Therapy today…

Bexley has been doing great with her physical therapy!  She works very hard. We are so proud of everything she has accomplished within the past several months.  Her PT is frequently commenting that it is evident that Bex is getting stronger.  Muscle tone is a confusing concept to explain and understand, but we found an interesting analogy recently that helped put it all in perspective for us.  A child with low muscle tone has to put forth a lot more energy into getting their muscles moving to do what they want to do.  The PT who wrote the article made the analogy that it is similar to that feeling when you finally get comfy in your favorite chair at the end of the day. Then someone calls you from another room and you have to muster up the energy to get up and go see what they need. 

I can't even imagine having that feeling all the time.  However, seeing my baby girl continue to get stronger, helps me realize just how tough she is.  Below are some quick highlights of what she has been working on and accomplished in the past several months: 

Army crawling and Pushing up – Bex has gotten so much faster and better with army crawling!  I have to do a double take when I realize she suddenly went from one side of the room to the other in a short time.  Her biggest accomplishment is that she has learned to bring her knees under her and push up on her arms (see video below).  While this may not look like much, it is a huge improvement for Bex and shows just how much stronger she has gotten.  Remember the analogy I alluded to earlier about kids with low muscle tone…this is why getting into this position by herself is such a huge accomplishment. 

Orthotics - Bex loves her orthotics!  We were concerned that she could have issues adjusting to her orthotics, but she really enjoys wearing them.  She gets excited when we ask her about putting on her shoes.  We have noticed they do make a difference as they help her seem more stable when standing.  There is always the debate to brace or not to brace, but we feel bracing was the right move for Bex.

Flowers and Ladybugs SMOs

Gecko Stander – About a month ago, we acquired a stander for Bex. It is a piece of adaptive equipment that allows Bex to stand upright and bear weight on her legs while providing her with the trunk support that she still needs.  She loves it! Again, we were worried that she might not like it because it does "confine" her.  Since army crawling has become easier for her,  she really likes having her  independence on the floor to move around and explore things.  However, she really likes standing in it and reading books or playing with certain toys or puzzles.  Of course, we are also guilty of letting her watch her favorite TV show in it as well…but we try to limit that exposure. :) She can stand in it for over 30 minutes. When we work with her on standing outside of it, we can certainly notice improvement.
I love my stander!!

When will it be my turn, Bex?

Bex and Rhett are certainly keeping us busy these days, which is one of the reasons it has been awhile since our last post.  Speaking of Rhett, we really think he has been a blessing for Bex!  She has become more motivated to move around as Rhett has become more mobile.  She loves playing with him and he lights up whenever she comes into the room.  It’s a little bittersweet, because as Rhett develops he makes it look so easy. Bex has to work twice as hard to do certain things, but she pushes through and in the end always has a smile on her face.  Of course, this just shows me how much of an inspiration my daughter is to me.  Like I said, she will move mountains!
Baby brothers are so funny!

Rhett, what are you doing to my books?
Little buddies!!!

Friday, December 4, 2015

Talk To Me!!

This week is Infantile Spasms Awareness Week, which made us realize that it has been almost four month since our last update. We sat down earlier this week to try to draft an update, but realized it is difficult to adequately cover the last four months in one post. Therefore, this post will primarily focus on speech and language therapy. We will follow up in the next few days with an update on Bexley’s progress in physical therapy. 

At the time of our last post, Bexley was just beginning speech therapy.  We are just thrilled with the progress Bexley has made over the last few months in this area.  She has such a strong desire to learn. We are also fortunate because Bexley absolutely LOVES books.  She loves being read to and she enjoys having you describe and point out things in the illustrations. Therefore, incorporating speech therapy activities into our daily routines has been an easy transition.  The SLP recently described Bex as “language hungry”, which is spot on because she wants us to label and describe everything to her.  

Initially, we were concerned about a receptive language delay. However, in the last month or so, it has become clear that Bexley's receptive language skills are flourishing! She can identify (by pointing) animals, body parts, colors, articles of clothing; follow simple directives; point to objects/characters in books; and so, so much more.  She is constantly learning something new and amazes us every day with what a great memory she has.  

The SLP has explained to us that it is pretty typical to see expressive language skills take the back burner in kids like Bexley. First of all, gross motor activities take a lot of focus and concentration for her. Then on top of that she is so busy soaking up everything going on around her that making new sounds isn't a high priority in her mind. She is making progress in this area and we have recently heard her start to babble some new sounds more frequently while playing (b, d, w), which is a sign that she is getting stronger and moving in the right direction. We are learning strategies to help her build on those sounds and increase their frequency.

Until the words come, we have started using baby sign language with Bex to help her express some of her wants and needs. She knows the signs for "more", "all done", and "eat." She is able to use those signs accurately and independently.  It has been a big help to get those little clues into what she wants. She can use the signs for "open" and "close" with prompting and we are working on the signs for "help",  “drink”, and “up.”  In addition to baby sign language, she can also shake her head "yes" or "no" in response to yes or no questions.   

The motto for IS Awareness Week 2015 is Little Seizures: BIG Consequences.  We strive to focus on the positive and hope for the best, but the reality is that with a diagnosis like IS many of the basic assumptions you have about your child's future are called into question.  It is hard to put into words how exciting it has been for us to hear an outside professional describe Bex as smart or comment that her memory skills are impressive. After watching Bex have to work so hard for the last 18 months with her gross motor skills, it is a refreshing change of pace to see her quickly picking up on new words. It is also a relief to realize that all areas of development may not necessarily be an uphill battle for her.

Stay tuned for an update on what Bex has been working on in PT!