Sunday, August 7, 2016

Rios 2016......The Bexley Games

We have had a busy summer getting settled in Atlanta, but we wanted to post an (overdue) update about Miss Bexley. Since our last post, we have gotten her set up with therapy services again.
Bex now receives therapy in a clinic setting vs. the in-home county services provided in Charlotte.  There are, of course, differences/pros/cons, but Bex adapted quickly to the change (so I guess it was more of an adjustment for us than her, ha). She really seems to enjoy her therapists and all the fun toys/equipment that they have in the clinic setting. She continues to make steady progress in all areas, so here is a bit of an update on what she has been up to:

Occupational Therapy
Bex just started OT in Atlanta. In OT, she works on activities to improve hand strength, hand-eye coordination, and bilateral coordination. Bex has always had the tendency to favor her left hand from a very early age, so OT is helping her to use both hands more instead of depending on her left to do it all. She absolutely loves OT.  We do a lot of coloring activities, puzzles, working with beads, etc.  Her fine motor delays are mild compared to other areas, so she really shines in this area and feels successful. It is fun to watch her grow and pick up on new tasks relatively easily.

Physical Therapy

As of July, Bex has officially been participating in PT for 2 years. Two years ago, we started PT working on basic skills such as head control and grabbing for toys. She has worked so hard and come such a long way in the last two years. In June, we had her fitted for Ankle-Foot Orthotics (AFOs). They are larger than her previous orthotics and provide her with more support. She feels much more stable now working on standing activities. We have started working on cruising activities (side-stepping along a couch) as well as using her legs to push up into standing (instead of pulling herself up with her arms). Recently, she has even starting using a gait trainer (click here to see an example of a gait trainer) a little bit in therapy to work on practicing taking steps and with a lot of trunk support from us can practice taking steps at home. While Bex has been able to sit up independently for awhile, she could not get herself into that position without assistance. Recently, she finally accomplished the task of sitting up by herself independently, which is something we have been working on for a long time and such a huge accomplishment for her! We still keep in contact with her PT from Charlotte to update her on Bex’s progress. As she recently said to us, Bex should be very proud of herself because all of these activities are hard work for her.  See some videos of Bex showing off below - as you can tell from our voices, we are proud of her, too! :)

Speech Therapy
Testing done by both the county and private clinic revealed that Bex has no receptive language delays. Go Bex!! We count our blessings for that every single day.  She is a little sponge soaking up everything you tell her and her memory is better than ours most days.  If you tell her you are going to something, she holds you to it. Speech therapy sessions focus on expressive language skills. In all honesty, this is probably the hardest therapy to watch Bex in. She knows exactly what is being asked of her, but it is hard to coordinate her muscles to make the sounds she is being asked to make. At times, you can see her shut down and get frustrated with herself.  Despite these challenges, she continues to make progress and is slowly, but surely expanding her vocabulary. She recently just learned her first 3-word phrase and it brings a smile to our faces every time we hear her use it.


Bex’s new neurologist requested another EEG and MRI in June.  We, of course, HATE these appointments/procedures, but we also understand they’re necessary to give him a better idea of any changes from the previous EEG and MRI.  These results were all given to us in a brief phone call that left us with more questions than answers.  He has requested a follow-up 24-hour EEG later this month that will hopefully clarify things.  We also have a follow-up appointment at the end of the month to discuss everything in more detail, but it sounds like he is getting close to make another diagnosis.  More to come on all that in a later blog post.

Until then, we remind Bex to live by the motto on her shirt in the picture below “I can & I will.”  And we know, she will.

Saturday, April 9, 2016

2016...The Year of Lots of Change!

2016 has been a busy year for Team Bex. Chris accepted a new position and we have relocated to the Atlanta area. Making this change was a hard decision for us.  Bex was a big factor.  In Charlotte, we were blessed with wonderful therapists. They truly cared about Bex as well as our entire family. We always felt that they had her best interest at heart. You form a special relationship with your child’s therapists.  It was from them we learned to celebrate the small steps forward in development and finally felt empowered with ways to help her.  Leaving those relationships behind was hard and also scary because we didn’t want to lose any momentum with her progress.  However, she has taken the change well and continues to make progress. Here is a little bit about what she has been up to: 

Zipzac:  About 8 weeks ago, Bex’s PT arrived at our house with something new, a Zipzac. She told us that she was on a big mobility kick and trying to brainstorm ways to help some of her patients gain mobility.  She could not have introduced this to us a better time.  Bex continues to make progress with her gross motor skills, but when it comes to independent mobility,  it is just plain hard for her.  We could often sense her frustration that she couldn’t get to things she wanted as efficiently as she wanted to.   Plus she wanted to be upright when moving and she couldn’t do that while army crawling. The Zipzac would provide her with a means of upright mobility….and more importantly, some independence to explore!  And isn’t that what all toddlers want more than anything? There was a learning curve with the Zipzac. She quickly picked up on how to go forwards and backwards. However, turns were a source of frustration for her.  She required lots of prompting and hand-over-hand assistance for about 6 weeks. Then all of the sudden, it clicked! In about 2 days, she went from being totally dependent to getting around completely independently.  We LOVE watching Bex enjoy her new independence! We can’t help, but smile as we watch her move around and explore with ease. 

Easter Egg Hunt!

Up Upsee and Away! : One other item that was recommended to help Bex with mobility was an Upsee.  It is a harness type mobility device that helps children with motor impairment stand and walk with the assistance of an adult.  You can read more about it here - The plan was to have Bex try one out before we left Charlotte under the guidance of her former PT, but we never had the chance.  One day recently, Bex seemed very interested in taking steps as we supported her and at that moment we decided on a whim to buy it.  So far we have no regrets as she loves it!  You can check her out in the video below.  The goal, of course, is to keep Bex motivated to move and, more importantly, allow her to interact with people and explore her environment in similar ways to her peers.  The Upsee provides these experiences and at the same can help reinforce step and muscle movement.  To see her get excited to stand upright and walk around is amazing and we love every minute of it!

Goofing around with Dad!

Other Things and Closing Items: In the past several weeks,  Bex has also found her voice more and is really enunciating her “Yea’s” and has also started saying “No” more clearly.  We can’t get enough of hearing her little voice and we hope that she continues to express herself verbally with other words.  We know we will get our fair share of “No’s” when she is a teenager, but we are just fine taking them in bunches now!

One of our biggest concerns with this relocation was the imminent lag time for Bex with physical and speech therapy.  Not to mention she absolutely adored her PT in Charlotte and now she’d have to get used to new therapists.  However, we have seen her continue to progress and we’ve continued to work with her on exercises and activities.  We’ve also started the process of getting her set up for therapy sessions in Atlanta and will continue to push these to start ASAP.  We also have her set up for a neurology appointment at the end of the month.  We are very thankful to a friend and his family (you know who you are) for helping to set us up with specialists in the Atlanta area.

The funny thing with this move is we were very worried about the kids and how they would adjust. Much to our surprise, they’ve taken it in stride!  Regarding Bex, we were concerned she’d struggle with the transition and potentially lose motivation with physical and speech therapy without her therapists’ guidance.  However, she has been a real trooper (as well as Rhett) through this relo.  This goes to show that this little girl can take on a lot and then some…and still keep smiling!