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.

                                         

Neurology

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.

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 - http://www.fireflyfriends.com/upsee. 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!

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!!!

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!

Bexley Turns 2!!

Bexley –

Tomorrow you turn 2! We can hardly believe it. In some ways, it feels just like yesterday we held you for the first time. In other ways, it is hard to remember what our life was like before you were in it. Okay…maybe we have a distant memory of sleeping in late on Saturday mornings and lazy afternoons spent binge watching TV shows on Netflix – ha! 

On the eve of your second birthday, we want you to know how incredibly proud we are of you for all you have worked to accomplish this year. Tomorrow, we will light the candles on your birthday cake, sing happy birthday to you, and tell you to make a wish! Tonight, it is our turn to make birthday wishes for you.  Since you are turning two, it is only fitting that we make two wishes. 

Our first wish is that you continue to make progress and move forward. You seem to learn something new every single day and amaze us all the time. We said it before and we will say it again…we are SO proud of you! 

Our second wish is that you continue to smile, laugh, and keep loving life.  We hate that you have to work so much harder to accomplish things that come so naturally to most kids. However, despite those challenges, you continue to move along at your own pace with a smile on your face. This is one of the traits that we love and admire most about you, so we hope that you continue to keep this attitude as you grow up. 

You have grown up so much in the last year. You are flourishing in your role as a big sister. You have learned to give the best hugs. You win people over by blowing them kisses and flashing your beautiful smile. You are incredibly observant and curious about everything, so it is only fitting that you absolutely love Curious George.  We can’t wait to celebrate you and all of your accomplishments tomorrow with a Curious George themed party!! 

Happy Birthday to our very own Curious Bex!!!