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!

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!

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

Bexley is proud to announce that on Wednesday, May 27^t,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!!!

Team Bex Promotes Epilepsy Awareness!!

Today our family all wore purple. March 26^th 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 26^th, 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 26^th, 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! 

Team Bex = Team No Sleep

Bex had her sleep deprived EEG on Monday. While was I looking forward to getting this test out of the way, I was dreading finding out the instructions about what we would need to do in order to sleep deprive her. When the nurse told me that we were only allowed to let her sleep from 12am - 4am, I almost laughed out loud at the absurdity of only allowing a 16 month old to sleep for 4 hours (not to mention that midnight is wayyyyy past my bedtime these days, ha). Then I started envisioning dealing with hours of a very tired, very cranky, and very fussy Bex.

As with everything, Chris and I tried to come up with a game plan to keep Bex up while also trying to keep our sanity. We decided the best plan of attack was to keep her distracted by making her routine as different as possible. Our college friend was in town visiting, so we took Bex out to dinner with him at the time we would normally be putting her to bed. Then we went for a late night Target and grocery store run. We didn't get home until almost 10 and kept her occupied with a short walk outside, Face Time with the grandparents, playing with toys, and finally a late night bath. The 4am wake-up call was a little rough on all of us, but we kept her busy around the house, were the first customers in the door at Panera, and got to the hospital a little early to wander and let her people watch. Bex was such a little trooper and so well behaved despite being exhausted!! 

Thrifty shopper!

First customer at the door at Panera...6AM!

The EEG itself was a breeze. The nurse who does these EEGs is wonderful and may be my favorite person that we have encountered on this journey. She is so good with Bexley! She gave Bex a pinwheel to play with and let me lay down on the hospital bed with Bex while she hooked everything up. Bex was so exhausted by this point that she just played with her pinwheel and was asleep within 10 minutes of laying down. Chris and I were so proud of how well she did with the sleep deprivation and were thankful that the process was much smoother than we were anticipating.

So sweet even with an EEG cap...pulling it off!

Today we received the results from the EEG. Our one frustration is that a nurse called to give the results and pretty much read the report verbatim, which is primarily in medical jargon. When we asked for clarification or to put it in layman's terms, she struggled to do that. There were about three phone calls back and forth before we were able to get a clear understanding of the results (and for the nurses to consult with the neurologist to get a better understanding of his plan). The best we can understand is that there were some subtle abnormalities on the EEG; however, these abnormalities do not indicate nocturnal seizures.  These results categorize Bex as "low-risk" of seizure occurrence while taking anti-seizure medication. One thing that was concerning to me was that he had said at our last appointment that he did not want to see us until July, but after this EEG, the nurse told us that he wanted to schedule a follow-up appointment with us soon. Anyways, long story short, he wants to meet to discuss the pros and cons of considering weaning Bex off Topamax, her anti-seizure medicine.  While you never want to hear the word abnormal for any test done on your child and we still aren't sure what they mean, we take it as a positive that he has suggested a potential medication wean despite the abnormalities. 

Neurology Appointments Make Us Neurotic!

Today was our first trip to the neurologist's office in almost 5 months. In the week or so leading up to the appointment, Chris and I had both made passing comments to each other that we weren't too anxious about this upcoming appointment because we have just been so proud of Bexley and all her recent accomplishments.

However, this morning both of us woke up and admitted that we weren't feeling quite so confident anymore. About a week ago, I stumbled across a discussion board on Facebook for parents of children with IS. I have read a lot about how social media is helping parents of children with rare disorders to connect and was excited to have a new resource. Instead of turning into a resource for us, this discussion board actually was just making both of us worry more. I had read about kids developing atonic or head drop seizures. I admitted to Chris I was now questioning whether Bex cocking her head to the side in her high chair might actually be a new type of seizure. Chris had read about kids having seizures in their sleep and was wondering if that was why she has been such a restless sleeper for the last few months. Anyways, before leaving for the appointment, we agreed on two things: a) we are quitting this discussion board and b) we should ask the neurologist for further clarification about these types of seizures instead of consulting Dr. Google.

Are we neurotic, worrywart parents? Absolutely! However, we are both very aware that Bex is at an increased likelihood to develop a new type of seizure in the future. It is important for us to learn to walk the fine line between being knowledgeable about how to distinguish seizures from normal behavior without letting worry about seizures returning consume us. Prior to Bexley being diagnosed with IS, my knowledge of seizures was pretty much limited to what you see on TV and in movies, which is grand mal seizures that leave a person convulsing on the floor. In reality, only a small minority of people actually experience grand mal seizures. There are many other types of seizures out there that can be much more subtle to pick up (i.e., Infantile Spasms).

Anyways, I am getting sidetracked now and need to get back to the appointment itself. Until we were sitting in that appointment, I kind of forgot how much I hate these appointments. The appointments basically involve the neurologist asking us a wide range of questions about Bex's development as well as daily habits while he types on his computer. He doesn't really provide any feedback or reaction to what you tell him.  This really starts to mess with your head and make you question whether everything you are reporting is good or bad. There also always continues to be the debate about whether there is an underlying cause for Bex's IS. Each question he asks makes me start wondering if the information I am providing him is helping bring him closer to figuring out a bigger picture diagnosis for her.

At the conclusion of the appointment, he did recommend a sleep deprived EEG for her to determine if there is any possible epileptic activity causing her to be a restless sleeper. That will be scheduled in the next few weeks. The thought of her experiencing nocturnal seizures bums us out.  One of the reasons that I am always so scared of seizures returning is that I fear that new seizures will hinder her development and wipe away all the progress we have made with her. The silver lining is that if Bex is having nocturnal seizures, they are not interfering with her development and can hopefully be managed with a little modification in medication.

Honestly, with the fear of another diagnosis in the future and a possible return of seizures, Chris and I both left the appointment pretty upset. The negatives almost made us forget one pretty big positive. The neurologist commented twice about how Bexley is very alert and attentive of her social surroundings. He also made the comment that for an IS kid she is actually doing really well developmentally.  We have learned that neurologists are pretty stingy with their positive feedback and comments, so we'll count it as a victory in our book that Bex walked away with two!!

After appointments like today, our motto is always that we let ourselves take the day to feel frustrated, worried, or upset. Then tomorrow we get back to focusing on our sweet little Bexley and all the amazing things she continues to accomplish despite all that she has been through. 

2015: Trending in the Right Direction

I know it’s been a while since Lindsey and I have provided an update on Bex, so here we go!

15 month Check Up:

Bex had her 15 month check up with the pediatrician today (which also required some shots).  As you are aware, Lindsey and I usually dread these appointments because we always seem to get some sort of “blah” news or another item to worry about.  However, this time it went relatively well!  She gained weight, grew in height, and her head circumference got bigger.  While there were some small fluctuations within the percentiles, everything looked to be trending in the right direction.  This was also the first time we left a well child check-up without a referral to a specialist in 9 months…woohoo! Our Pediatrician was pleased and so were we!

Bexley is learning new tricks:

Of course, our Pediatrician asked how Bexley was doing from a developmental standpoint.  We relayed that she is making strides with her physical therapy and she is also learning to mimic more.  While visiting my family recently in Houston, we taught her to blow kisses (sort of).  Our Bexley continues to make moves at her own pace and we are very proud of her!

Connecting with Others:

Lindsey and I have recently been able to connect with parents who have a child that also experienced Infantile Spasms.  Lindsey has been communicating with a mother living in a different state via email and I spoke with a father last week.  To say my conversation with this dad was beneficial would be an understatement.  First of all, he was a great guy and I really appreciated him taking the time to chat.  Being able to talk to him about his experiences with IS and his child’s development going forward was very helpful.  This was the first time I have been able to share my concerns and fears with someone who has “walked in my shoes” so to speak.

The best part was this conversation was…natural.  Let me explain what I mean by that.  Lindsey and I can struggle to relate to fellow parents at times because our experience with parenthood so far has been different from the norm.   This is not a knock on other families, it’s just the truth.  However, when I was talking with this dad, every time he shared an experience with his child I was like, “Yes, we did the same” or “Bex went through that too” or “We used the same medication.”  During that conversation I felt like a regular parent, just shooting the ‘you know’ with a fellow dad.  I can’t tell you how happy I felt in that moment.  We are hoping to meet with this family in person in the near future.

Great Advice:

 I’m paraphrasing here, but the fellow dad gave me one really great piece of advice - “Don’t worry about the future.  You don’t know what will happen…just enjoy the now.”  This goes along with resolution #4 from the last blog post.  I did have a moment of weakness with this resolution.  We recently visited my family in Houston.  At the airport on the way back, I noticed an older family whose adult son had special needs.  He needed his parents’ help with ordering food and other basic life skills.  For a moment, I had that quick fearful feeling – will this be Lindsey and I with Bex in the future?  But then, I took a deep breath and I remembered what that father told me and our resolution.  Then I looked at my daughter, picked her up, and told her I loved her and would take care of her no matter what.  Also, I reminded myself that the family and son looked really happy…so I would be lucky if we turned out like them.

By the way…

In case you missed it, Lindsey and Bex were featured on the website “The Mighty.”  If you want to check it out, click here.