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!

Friday, October 23, 2015

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!!!

Sunday, August 9, 2015

The Quiet, Analytical Type


For the last month, Chris and I have been saying to each other “we need to update the blog”, but July went by in a blur and now we are almost 10 days into August. I guess I now truly understand why my mom says she doesn't remember anything from the 80's (due to raising 3 kids). Here is an overdue update on little Miss Bexley:

Physical Therapy: Bex continues to slowly, but surely, make strides with her gross motor skills.  She has gotten more efficient and quicker with her commando crawling (pulling her body with her arms) and we are working to get her to progress to a belly crawl (pulling with her arms and using her legs while scooting on her belly).  She is able to hold herself in the sitting position for longer periods of time, so our next step is helping her learn how to get into and out of the sitting position independently. Yesterday, she actually just started getting herself out of sitting by herself. Yay Bexley!! Gross motor activities take a lot of hard work and effort on her part due to her low muscle tone.  She requires a lot of extra work, practice, and repetition to accomplish things that come so naturally to most of us, so it is just amazing to watch her accomplish something new. 



 Neurology: Bex had a follow-up with neurology at the end of July. It went as well as those appointments can go. As always, he mentioned how observant and curious Bex is about her environment. He even described her as the “quiet, analytical” type, which is about spot on. Bex is one observant little girl and is always taking everything in about her environment. For an IS kid, he said she is in the top 50% of IS patients he sees, so he was pleased with her overall progress and awareness. There was some discussion of other potential diagnoses in the future, but at this point, we just continue to watch her and see how her development progresses. We go back in 6 months and for that appointment, we will just see the nurse practitioner. 

SMO’s: Bex’s physical therapist has recommended that we have her fitted for SMO’s, which are orthotics for her feet. Due to her low muscle tone, she tends to roll her ankles when we do any work with her in the standing position. These will help to stabilize her feet and ankle, which should allow her muscles in her legs to work more efficiently. If I am completely honest, this one has been a little hard for me because I hate the idea that my little girl will have to wear something that makes her “different” from other kids. At this point, she is too young to realize that, but one day she won’t be and that is something that I worry about.  However, as we mentioned in our New Year’s Resolution blog, we work hard to live in the moment.  We plan to help Bex embrace this “difference” by buying her a few pairs of super cute shoes to wear with her SMO’s. :) 

Speech Therapy: Bex started speech therapy last month.  She receives speech on a bi-weekly basis.  Since she started weaning off the Topamax, Chris and I both noticed that Bex was understanding more and more of what we were saying to her.  We are looking forward to getting more tips and ideas about how to further develop her speech and language skills. 

Big Sister: People ask all the time about how Bex has adjusted to being a big sister.  For the most part, she enjoys and is curious about her little brother.   At times, she gets jealous when she wants my attention, but his needs are taking priority at the moment.  However, if she is in a good mood, she loves saying “hi” to him, watching what he is doing, or laughing when he spits up all over me, ha. When he is crying in his car seat or stroller, we often catch her peeking over to check on him, which is sweet.

 That pretty much sums up the past several months for Team Bex.  We will try to get better at posting more frequent updates...that is, if the kiddos let us!

Sunday, June 14, 2015

A lot to look back on…and thank you for being a part of it!


On our family morning walk today,  Lindsey and I discussed how far we have come with Bexley within the past year.  A year ago today was our first full day home with Bex after she had been discharged from the hospital.  We were learning to give her ACTH injections on our own at home and trying to educate ourselves on Infantile Spasms and what this would mean for Bexley’s future.  You may remember this based on our first blog post.

Of course, we didn’t know what the next year would hold (and we don’t know what’s in store for the next 100 years).  However, a recent family vacation helped sum it up for us.  This past week was our annual beach trip with Lindsey’s family.  This is always a great time, but this year it was an especially GREAT trip…and that was because our baby girl loved it! 

Bex's beach chair
You see, two years ago (Beach Week 2013), when Lindsey was pregnant we all talked about how much Baby Rios would love it the following year (2014 or last year’s trip).  Our baby would be roughly 9 months old and that would be a fun age to have him/her at the beach for the first time.  Our baby would be sitting and playing in the sand, splashing in the water, and potentially walking around looking at shells.  Well, as you know, our trip last year was nothing like what we had envisioned.  Bex was developmentally delayed, so she couldn’t really do any of that stuff.  Not to mention, she was a month into her ACTH treatment, which resulted in a very fussy and uncomfortable Bex (side effects of the medicine).  Don’t get us wrong, it was still a fun trip and great to hang out with family; however, it was a week that reminded us how different our reality was from the future that we had dreamed about the previous year.

Clapping for the tide coming in!
This year’s beach week was a whole different story.  Our girl LOVES the beach and pool!  She sat in the sand and played with it.  She loved having the tide come in while sitting in her little beach chair out in the water.  She had a blast in the beach house’s pool and her grandpa (Pappy) taught her how to kick kick kick – video below!  All in all, she had a blast....and we had a blast watching her enjoy everything!





The beach week trip is very similar to the Learning to Live in Holland story Lindsey wrote about last August.  Last year, we had just landed in Holland on our journey with Bex and it was hard not to feel sad about how differently things had turned out from how we had planned.  This year we experienced the activities Bexley could partake in, watched our little girl enjoy herself, and celebrated how far she has come without thinking about "what could have been."

Just Taking It All In

Not only did she enjoy the beach activities, but during this week, she started pulling herself forward on the floor…a tremendous feat for her!  This epitomizes her physical therapy accomplishments over the past year.  It may have taken a while to get here and she may not be covering a lot of ground, but she’s doing it on her own! We can hardly wait to show her Physical Therapist this accomplishment on Friday because it is something we have all been working hard on with Bex for awhile!

We want to thank you for following our blog and becoming a part of our lives.  Mostly, we are grateful for you rooting for our baby girl, Bexley.  I’ve described before how her situation is not filled with challenges, but opportunities…and I truly believe that.  Please know your support helps Bexley take advantage of every opportunity.  So once again, we thank you for helping Bex as she strives to move mountains!!!

-Chris and Lindsey

Thank You from the Rios Family!

Monday, June 1, 2015

Bex is a Big Sister...and a Little Otter!


Bexley is proud to announce that on Wednesday, May 27t,h she became a big sister!  Her brother Everett (Rhett) Tucker Rios was born.  While Lindsey and I are on cloud 9, we are also EXHAUSTED!!!  We are very interested to see how Bex will interact with Rhett as they continue to bond and we hope that he will help motivate her with her developmental goals.  Most importantly, we are thrilled Bex has someone to share her love with and we know they will grow to be great siblings.

"Hmmm...I wonder what this tastes like"

 Bex had her first swim class today!  The place we go to is called Little Otters (hence the title) and it’s an introductory swim program for kids.  Bex’s Physical Therapist recommended swim lessons as a great way for her to get PT in a different environment, as well as grow her social skills in a group setting.  Lindsey and I really didn’t know what to expect as Bexley has only been in pools on several occasions.  Sometimes she enjoyed it, but other times she did not.

Bex is a Little Otter...get it?

Once I took her into the pool she LOVED IT!  She had the biggest smile on her face and really enjoyed watching the other kids.  The toddler next to us started splashing and Bex mimicked him and thought it was the best thing ever.  The instructor was great and understood when I informed her about Bex’s low muscle tone.  She advised me that we could work on the things Bex feels comfortable with and just enjoy the experience.  It was a great time!

I was so proud of Bexley and how she did that I got a little choked up.  Lindsey told me the same thing when she was watching us.  Like any parent out there, you just want your child to be happy and enjoy life.  There have been times recently that Bex has been frustrated because of her limitations.  For example, she wants a toy across the room and all she can do is reach for it and start to get fussy and cry.  That hurts me every time and I know she is working hard on mobility and I am confident one day she will get there.  But throughout the day, she is reminded (as are we) that she can’t necessarily share the same experiences as children her age.

However, during this swim lesson, she was able to share an experience with other children.  Sure, she wasn’t kicking like they were or sitting up on the paddle board, but she was loving every minute of it. Her smile could have lit up the place!  It will certainly be a great opportunity for her to continue to work on other areas for PT…but even just as important, it is a great way for her to be a kid and enjoy the pool!

All Smiles!!!

Thursday, March 26, 2015

Team Bex Promotes Epilepsy Awareness!!



Today our family all wore purple. March 26th has been named the Global Day of Epilepsy Awareness. People across the world are asked to wear purple to show their support for spreading awareness about epilepsy.  A year ago, March 26th, purple, and epilepsy were just another day, another color, and a disorder that happened to other people. 




However, last June, all of that changed for the three of us. I can still so vividly remember holding Bex the first time she had a spasm. It was first thing in the morning, it was quick, and I thought maybe she was really hungry and having bad hunger pains. A seizure would last longer, her eyes would roll back in her head, and she would lose consciousness, right? Two mornings later, Chris was working from home and I called him into the kitchen to watch her have a spasm in her high chair. It was honestly the first time I even mentioned the abnormal movements to him because I wasn't quite sure how to even describe what she was doing. After I had observed this pattern of movements several times, my gut was just telling me that something wasn’t right.  

Epilepsy has been on my mind a lot over the last month due to our neurology appointment at the beginning of the month followed by the sleep deprived EEG. We met with Bex’s neurologist again on Monday to talk about her most recent EEG and treatment going forward. It was a good meeting. Bex has had three EEGs post-initial diagnosis (two last summer and one earlier this month).  He qualified them all as “good EEGs”, especially when you compare her to other kids who have had IS. I feel so thankful every day that Bex is one of the lucky ones who responded so well to treatment.  

Based on her response to treatment and her EEGs, her neurologist has recommended that we start weaning her off Topamax, her anti-seizure medication.  This decision is kind of like opening up Pandora’s box of emotions. I have hated that Bex has had to take a medication like this at such a young age. There are many days that I have been frustrated that this medication might be suppressing her appetite making meal times a battle, interrupting her sleep, or just making her feel icky. Therefore, there is a part of me that is excited that she is doing well enough that taking her off this medication is a possibility. 

However, as much as I have hated Topamax, it has also become kind of like a security blanket for me.  We might have to deal with some frustrating side effects, but it’s been working. Bex has been progressing developmentally and remained seizure free.  As much as I hate the side effects, I hate the idea of seizures returning even more. Chris and I expressed our concern about seizures returning to the neurologist because IS kids are at an increased risk to develop other seizures as they get older. We would hate to see seizures return and cause her to lose all the progress that she has worked so hard to make. Of course, the neurologist can’t predict the future any better than we can. However, he did explain that it will be a very slow weaning process. By weaning her slowly, the hope is that if seizures do return they will be very mild at first, so we could readjust medication before they would impact her development.  

We started tapering her medication on Monday night and it will take three months for her to be completely off the medication if all goes according to plan.  It has been an exciting and nerve-wracking step to take. I have been watching her closely this week. As I watched her fall asleep last night, she twitched in her sleep and I felt my heart skip a beat each time.  If she starts to focus intently on something, I find myself making sure I can interrupt her focus to make sure it is not an absence seizure. Chris has been traveling this week and when he checks in, the conversation at some point usually involves him asking if I have noticed anything different with Bex. Thankfully, this week she has done well with the first decrease in dosage.

Next year on March 26th, I hope that epilepsy is a distant memory for our family, not something that is part of our daily conversations. However, regardless of what the future holds for Bex, I do know that raising awareness about epilepsy will remain a cause that is near and dear to our hearts. 

In honor of Purple Day for Epilepsy Awareness, Chris and I encourage you to take a minute to read the information about West Syndrome that we have posted on our blog or educate yourself about epilepsy by visiting www.epilepsy.com. Epilepsy affects 1 in 26 people in the United States at some point in their lifetime, so it is a lot more common than I realized at this time last year. Hopefully, one day with advancements in research and treatment, that number will be much smaller!