All About the Therapists

It’s official.  We aged out. Our birth-3 year Early Intervention team is done and this is our first week without them.  We had to say goodbye to the group of amazing therapists that have been with us, supporting us, and strengthening us since since Paige was 6 months old.  We knew this day was coming and we were prepared but it was still incredibly emotional.  They have become our family.

I’m feeling so many feel about this.

Happy for making it this far. Sad that they’re gone.  Anxious about the next step.  Reflective about all of the progress Paige made in the past 2 1/2 years.  Thankful for this Early Intervention service.  Mostly though, I’m grateful.

Grateful for the countless hours these therapists have put into bettering Paige’s quality of life.  Hours of paperwork, phone calls, and connections made to get equipment and devices we need.  Extra time taken to accompany us to appointments and orthotic fittings when they didn’t have to.  Time spent pushing and guiding Paige to do more than we were ever told was possible.  All of this and so much more.  As I said, they are our family.

Most of all, I’m grateful of the special relationship each of them had with Paige.  Honestly, there is not one therapist she did not light up like a Christmas tree when they walked through our front door.  She would cheer and happily shriek when I would mention their names.  She knows them. Every one of them loved her and she loved all of them back.  Each had their own bond with her that fostered an environment to help her grow.  And let me tell you, she did.

Every single one of these people were there from the very start of our Lissencephaly journey and have helped us navigate our way to where we are now.  Eric, the vision therapist was here the day after our diagnosis.  The others shortly after.  Paige couldn’t be luckier!

Eric – Vision TherapyBarb – NutritionKeely – Physical TherapyGabriella – Conductive EducationKeely, again!

Not pictured (yet):
Emily – Occupational Therapy
Alex – Occupational Therapy
Dee – Developmental

Thank you, all!!

*I got permission from all therapists to use first names

 

The Bouncing King.

When I put my four year old to bed every night we read a book and say our prayers and it is a time I truly cherish.  I look forward to this time of day because it’s fascinating to relive the day through a little kid’s eyes and even on the most stressful days I find he always reiterates the good things that I’ve overlooked.

On a good night, we snuggle, talk about our day, read a book or two, and then say our prays before I tuck him in for the night.  Lately, due to illness and activities, it’s been the shortest book in his room, a quick prayer, and a kiss before it’s lights out.  Last night was one of those nights.

The book I picked was called The Bouncing King and I’ve read it dozens of times but never really paid attention to it.  However, when I was reading I stopped in my tracks and found that this silly little story oddly, and profoundly, struck a cord with me.

The story is about a happy, jovial king who loved to bounce at the simplest things.  Bees buzzing and lambs skipping, to be specific.  The people loved him in the kingdom.  There is also a prime minister who writes VERY IMPORTANT LAWS.  (That part is capitalized in the book).  For some reason, only gremlins could stop the king from bouncing and they live in the castle attic.

One day, the king bounces so high he goes through the ceiling and falls to the ground with a gremlin on his back, landing on the prime minister.  The gremlin whispers in his ear that he is not a king because he is not sensible and wise because of his childish bouncing.  The king is sad and wears heavy boots so he will no longer bounce so he could be a sensible king.  He makes a law that no one in the kingdom is allowed to bounce and everyone is dark and gloomy.

The prime minister is puzzled because he cannot see or hear this gremlin but he reads about them and understands why the king made his new law.  He takes matters into his hands and grabs the king and takes off his heavy boots.  The prime minister takes the king on a walk and the king feels lighter without the weight of his heavy boots.  The kingdom is happy to see him smiling again and the king sees the flowers growing, bees buzzing, and lambs skipping again.  The king feels a “spring in his step” and bounces higher than he’s ever bounced before and the gremlin falls off of his shoulder and the lambs squash him flat.

The story ends with the king bouncing everywhere again and he changed his VERY IMPORTANT LAW and now, every week, the people must go and watch the lambs to remind them to keep bouncing and be happy.

I got to thinking about the gremlins in my life that seems to sit on my shoulder.  You can read about some of them here, and while some of them have resolved, they have a tendency to pop up when I’m “bouncing”.

Lissencephaly has changed my perspective on a lot of things.  On one hand, I have new eyes for the simple pleasures in life.  I appreciate the good times a lot more than I used to and, as Andrew and I have said before, it’s brought our family a lot closer and we love a lot harder.  On the other, it’s exposed me to what CAN happen.  With the good, there’s always a look over the shoulder to see if the CAN happens WILL happen.  Is the good that is around me going to come crashing down in devastation again?  That, is my biggest gremlin.  The cause for me to put on my heavy boots and see things that might be darker than they really are.

Thankfully, I have a lot of prime ministers in my life taking my boots off for me and lambs to remind me to be happy.

I have my Will during our time to unwind to remind me of all of the little-big things that passed me by.  He helps me truly appreciate things from a child’s perspective.  One that doesn’t know or fear what’s ahead.  He lives in the moment and he reminds me every day to do the  same.

I have my good husband, Andrew, who is so patient with me and is there to talk about the struggles of being a special needs parent.  He is the only other person who knows exactly how it feels every day.  While he may not understand everything I go through, he “reads about my gremlins” and is always a calming voice with nothing but love and support.

Paige shows me that we can overcome so much more than is expected of us and she is happy to just be herself.  She makes everyone around her better simply because she’s Paige and that’s really beautiful.

Baby Jay shows me hope and healing every day.  I watch him grow and I’m in awe of the simplest things he does.  I take nothing for granted anymore and he reminds me to give thanks and love.  Babies are good at that!

I’m learning that I don’t have to wear the weight of the past.  I’ve realized I don’t like those heavy boots and I will make a daily decision to leave them in the closet, however, if I ever find I have them on, I have my prime minister and little lambs to help me take them off.  I’ll bounce to that!

 

Welcome, Jay Thomas!!

I’m back to blogging!  It’s been a while and thought I’d introduce our new addition!  Jay Thomas Barbour was born on Tuesday, January 12th at 1:36am just moments before a snowstorm in Pittsburgh.  Our big guy weighed 8 pounds even and measured 21 inches long.  He was my largest baby and quickest labor – only FOUR hours!!  He has the biggest eyes and hands and is as sweet as can be!

Because I’m so far behind, he is currently 10 weeks, almost 14 pounds, and 24 1/2 inches long!  His doctor told me our Jaybird, as we call him, is as big as a four month old!

I still wake up in the morning and find it hard to believe we have three children now!  It’s a busy, a bit like herding cats, but it’s been incredibly fun.  I’ve been meaning to update sooner, but by the time I sit down after dinner I’m just about zonked out for the night and I wanted to give a thorough(ish) update.

Jay is two months old now, and it was around this time we noticed Paige wasn’t meeting certain milestones.  Of course, babies develop at different times, but we knew her vision wasn’t what it should be.  As you can imagine, I’m a little hypersensitive about development after what we’ve been through with Paige.  I’m happy to report that Jay is currently right on track and reminds me a lot of our Will as a baby.

It’s honestly very thrilling with a little bittersweetness mixed in to watch him grow.  The first smile, batting at toys, cooing, putting pressure on legs, and grasping items have been so exciting to watch.  I cry all the time when I see Jay doing these things.  At the same time, I’m reminded of the anxiety and worry I felt when Paige wasn’t doing this and it makes me sad because this was the start of our journey to a diagnosis.  I remember how I felt during that time and I look at her now and I’m so proud.  So. Incredibly. Proud.

I’m not going to lie, adding another baby after one with special needs has been difficult, mentally and emotionally.  I’m working on not analyzing Jay like I did with Paige and I’m constantly reminding myself that I don’t need to advocate for him like I did with her.  My husband hit the nail on the head when he said we didn’t grow our family to worry and fuss over what could happen.. we did it because we want a big family and we have love to go around.  It’s been a wave of emotions and it’s scary to let my guard down, but it is truly necessary in order to be the best parent to my three little monkeys!

I’m told it’s a different experience raising other children after having one with special needs.  I was warned it would be a lot of watching, a lot of analyzing, and a lot of mixed emotions.  So far, those sentiments couldn’t be further from the truth.  It IS a lot of all of those things, but once I allow myself the grace of knowing it’s “normal” (I hate that word) then I allow myself to feel joy and present.  I’m embarrassed to admit that I sort of “quiz” Jay on these things and I have to stop myself. With Will, I didn’t really know to look for these things, with Paige, I had to, and with Jay, I know too much.  I have to stop myself from the knowing too much and find a nice middle ground… and I’m working on that.  

Along with the watching and list checking, I was told that the highs would be so much higher and the sweet would be SO much sweeter.  Again, I find that to also be true.  When this little baby looks me in the eye and smiles, I light up.  When I get a little chuckle, it’s heaven.  Even when I hear him cry, I know he needs something and I’m happy to be right there.  

As for the other munchkins, they’ve adjusted amazingly.  It took a few days, but we’re in a good place.  Will was a little emotional and Paige had a few sleepless nights but they caught onto the new lifestyle pretty quickly.  The night we took Jay home from the hospital Will asked if we could bring him back to “his other house” but once he realized his little bro was here to stay he was fine.

Will is currently in preschool and is growing like a weed.  He is starting t-ball soon and he’s really excited about that.  Daddy has also taught him how to play Mario Kart on the Wii U and he recently finished 11/12 in a fierce race.  Haha!

Paige has recently taken a break from Conductive Ed but will be returning next month.  She is becoming more vocal and her expressive language is improving!   She uses an “eh” sound in different pitches and we’ve figured out what they mean.  She responds to “hi” and gets particularly excited when she hears the theme song to certain television shows.  Her seizures have been pretty controlled with an occasional spell here and there.  Another thing about Paige.. she is getting TALL!  I constantly have to get her wheelchair adjusted and her clothes are getting too short around her middle.  It’s particularly noticeable when she is in a standing position or in the bathtub.

 

 

Oh!  And Will, Paige, and Jay have a new cousin!  Benjamin Todd Walters was born in December 22nd!  Exactly 3 weeks before Jay!  They all met A few weeks ago and it was precious!

 

 

Anxietyville, Population:1

This probably won’t be my most fun post and I’m really on the fence about posting it but I feel like it’s something a lot of people, especially special needs parents, go through and it might help someone else or help me find some solidarity in the situation.

For the past year, I have been struggling with anxiety/PTSD and I’m currently having a bit of a bad week with it.

Little back story.  I remember when Paige was around 2 months old one of the first inclinations something was off was her vision.  She wasn’t tracking objects and not really all that smiley.  Physically, she was too young to worry about any milestones but the vision stuck out and we were referred to a pediatric opthamolotogist.  The eye evaluation turned into an MRI which turned into a Lissencephaly diagnosis.  The feeling of being utterly blindsided is forever burned into my memory and took a major toll on my mental health.  Luckily and thankfully, I knew myself enough to know that such a huge change in my life would require a little extra help.  I found a counselor that specializes in navigating grief and loss and it didn’t take long until we started tackling how to process the pain of being a new special needs parent and all the ins and out of what that entails.  What I didn’t expect was just how many layers and ugly heads grief and trauma can have.  The hardest and ugliest, so far, has been the post traumatic stress that erupted about a 9 months after I first heard the word Lissencephaly.

I remember taking Will to his first gymnastics class last year and it was his very first activity that didn’t involve me being right there with him.  He was a new 3 year old with a ton of energy and absolutely loved the class.  For some reason, I was a nervous wreck about it and completely analyzing his behavior in the class.  I counted the number of times he needed to be redirected, made sure he was following directions, and didn’t take my eyes off of him for a second.  I knew my behavior was a little quirky but I chalked it up to not having control of the situation.  Then, that threw me off because never in my life have I been a control freak.  I knew something was different but couldn’t really pin down what it was.  I just knew I was anxious and couldn’t stop it.  He started preschool shortly after and it was another activity where he wasn’t in my care, but unlike gymnastics, I couldn’t be there with him to peep in.  Talk about stressful for me!

My anxiety continued monitoring and tracking Will’s development.  Almost everything he did I analyzed.  Thoughts of how Paige didn’t meet milestones before her diagnosis flooded back to me.  Thoughts of how I would run to her pediatrician and pour all of my observations out to them only to be told it was too early to worry.  I KNEW something was wrong with Paige very early but I didn’t know what.  And even though I knew something was up never in a million years did I think it was as severe as it turned out to be.  I always remembered this feeling when Will did something like get out of line, miss a turn, or needed to be redirected, I thought it meant something.  If he recited a movie line or walked on his tip toes, I ran and did an online evaluation for Autism.  I had that same gut feeling about Paige before but now I had it with Will.  I just KNEW something was going to be wrong, or off, or diagnosable.  Frankly, it turned into a debilitating fear that recent history was quickly repeating and my anxiety spiraled.  To cope, I bugged Andrew, my mom, and others incessantly over whether or not I thought Will was okay.  I would ask his teachers about how he was doing and if I heard something that wasn’t absolute perfection I’d freak out.  Even if all of those people told me a million times he was perfectly fine and thriving I just didn’t believe it.  Something incredibly rare happened once it could happen again, right?!

After lots of analyzing myself and help from lots of people, my grief counselor suggested I have PTSD from the diagnosis and the trauma was causing me to take out my fears elsewhere, in my case.. Will.

As a person, I felt relieved it was more than anxiety but as a mother, I felt absolutely terrible.  Here i have these two beautiful children.  One who is able to do many things and one who can’t do anything.  It’s like parenting on two different planets.  I felt like a monster but my grief counselor helped me realize that due to the trauma and stress, my instincts were not reliable at the moment because I was always going back to the worst day of my life.  She and Andrew both have described it like a veteran returning from war and hitting the deck when they see or hear a firework going off.  A typical person would see beauty in the sky but to the veteran it takes them back to a place of fear and fighting.  That’s how I felt when I was analyzing Will.  A typical person would see a child learning and growing joyfully.  Some areas faster than others but on a good and healthy track.  I saw future fear and panic of someone telling me he wasn’t doing things age appropriate and needed an evaluation, no matter what the activity was.

At that time, I was unable to look past the trauma and i was fearing fear!  I got a prescription of Zoloft and it helped tremendously.  I saw the fog lift and my rational thoughts were slowly coming back.  When an anxious thought came in my head I was able to talk myself off the ledge and realize it wasn’t me but the trauma that was making me feel that way.

One thing I promised myself was that I wouldn’t let fear dictate my life.  Andrew and I always wanted a big family and I wasn’t going to let my fear get in the way of that.  With the help from my doctors, I successfully weaned off my SSRI and was confident in my coping skills to get me through an unmedicated pregnancy.  I actually have been pretty good this pregnancy and have been staying positive.  Sure, I’ve had super anxious moments about the baby boy coming in January, but we’ve gotten good reports so far.

Now, when I reread what I’ve written it looks like my life was completely dire but, the funny thing was, it wasn’t.  I was/am cognizant enough to not let Will pick up on my insecurities.  Sure, I bother the hell out of Andrew and my mother, but I’m still able to enjoy life and have special moments with Will and Paige.  Even when I look back at that point in my life last year when I was really struggling, I remember the best things about Will and Paige.  That’s the funny thing about anxiety.  It’s not always there but it has the potential to always be there.

Unfortunately, this past week I’ve been thrown into Anxietyville, Population:1, again.  I’ve been dealing with a lot of the same insecurities.  Will had a speech evaluation that everyone gets at his preschool and it spiraled me back to the eye exam that led to so much more.  I fear this evaluation means a bigger diagnosis and his future will be riddled with therapy like Paige’s is.  Again, I’m fearing fear!  This time, I know that it’s not me and I can’t really trust my instincts at this time and I have to rely on those who are more rational around me.  And I know, whatever happens we are perfectly able to handle and deal with it.  And also, Will is the coolest kid ever and he’ll be just fine!

Frankly, it’s a sucky feeling to not be in control of your emotions and rampant thoughts.  I’m learning grief, trauma, and its recovery isn’t a straight line and I’m constantly picking myself back up.  I hope it evolves into a more natural place, but until then, it’s a struggle.  Currently, I’m able to rationalize but the anxious feeling in my gut just won’t go away and it’s like it’s a constant reminder of my negative thoughts.  Being hormonal and pregnant doesn’t help, either.

Throughout my struggle, I’ve met so many people who are going through a very similar situation and that’s helpful.  Many Liss parents I’ve met throughout our journey are going through with the same thoughts and grief.  Still, people don’t talk about issues like anxiety and PTSD because there is a stigma.  In my case, I don’t want to talk about it because it’s just not a fun conversation.  Also, I don’t want it to be my identifier.  All I know is that at my worst, I desperately wanted to talk to someone who understood how I felt and if this post makes someone feel less alone, than it’s worth it.

I know bad things will happen and I’ll get hard news at some other point in my life, but I know that the wave will pass and I’ll also get GOOD news and GOOD things will happen too.

Summer, Babies, School, and Updates

I’m back after summer!  It’s been a busy one and we’re starting to get into the new Fall routine.  I’m sort of, kind of, really excited about Fall!  I’ll do a little individual updates on the family and what we’ve been up to for the past few months.

Miss Paige has been hard at work all summer with therapies and Conductive Ed camp.  The Paige Patrol t-shirt fundraiser we had for her was put to great use in this camp and we are thrilled with her progress.  Initially, we signed up for a four week camp with Paige going Thursdays and Fridays from 9am-noon but ended up attending all eight weeks! I was there with her and it was a block of therapy that basically focused on muscle memory and incorporated both gross and fine motor skills.  I describe it as conjoined Physical and Occupational Therapy.  She was in a preschool classroom environment with several peers so she had interactions with other children and adults, which I loved!

The day started with a good morning routine and introductions.  Paige enjoyed the songs and was incredibly receptive to the instructions.  Then, we made our way to the planks (slotted wooden benches) and did back and tummy workouts.  We stretched and focused on each muscle group with a different exercise.  All of the workouts seemed to be really simple but they were actually very detailed and required Paige to use her hands and feet simultaneously, head control, muscle strengthening, visual focus, cause and effect, and body movement.  The exercises were the same every single day and incorporated really fun songs, dances, and toy props that were interesting and stimulating.  Paige did a fantastic job and gained leaps and bounds with her fine motor skills and hand exploration (which has been a huge obstacle).  I’m 100% positive her favorite part was the body massage with a spiky ball at the end and I can’t blame her one bit.  She worked hard!

Next, was snack time, or as the Hungarian conductors called it, morning tea.  Each child had their own spot at the table and they sat at a bench with “their person” behind them to help them eat and drink.  We worked on using utensils and the adults used this opportunity to talk and compare notes, so to speak.  It was great to have Paige be part of a group and she really loved it.  I really loved it!

The last hour was dedicated to sitting and standing work using wooden ladders, benches, yoga balls, and props.  The conductors did a great job of entertaining the kids with songs and games and every activity has a cause and effect goal that went along with the muscle building.  Paige wore her AFOs (foot/leg braces) and her Benik vest (for back support) which helped alleviate some of the work from those areas so she could use her energy to work on the activities.

When it was time to leave, we said our goodbyes and each child had to work to get out of the door.  Paige was usually assigned to roll or army  crawl out the door.  Towards the end, we tried taking steps using the ladder and that was incredibly moving to see!

Overall, we had such a wonderful experience that we decided to enroll Paige in the Conductive Ed preschool one day a week in conjunction with CE coming to the house via Early Intervention.  Paige gets to be in a preschool environment and still continue her visual, physical, and occupational therapies at home!

I’m super happy to report that Paige is also MOBILE!  She is rolling around as her mode of transportation and exploration.  She likes to scour the floor and usually gravitates to the dog’s bed.  We weren’t ever sure if she’d ever roll over and it’s so amazing to see and we never take her progress for granted!

Mr. Will also had a busy summer!  He attended his own summer camp through his preschool and he had an absolute blast with it.  He enjoyed exploring outside, collecting rocks, swimming, dressing and picking out his own clothes, staying up late, shopping with his mom and playing sports with his dad.  He has a really great group of friends he’s known since they were all babies, and their mom’s happen to be my best friends, so we get together frequently and had a really great summer of playdates, birthday parties, and exploring Pittsburgh.

Speaking of birthdays, Will turned FOUR on August 30th and had about 3 weeks worth of birthday celebrations.  His first was with his buds at Chuck E. Cheese’s, second was bike shopping and dinner with the Barbour side, and the third was spending a fun day at Del Grosso’s amusement park with the Shearer clan!

Our little man just started 3-4 year old Pre-K and will be attending three days a week with his friends and teachers from last year!  We’re super proud of him and we’re excited to see what he learns this year.

In other news, we found out that Will and Paige are going to be a big bro and a big sis to a baby BROTHER!  Yep, it’s definitely a boy and he’ll make his entrance into this crazy crew in mid January.  The pregnancy is going well so far and, due to Paige’s history, we’ve been monitoring the head shape and anatomy a little extra carefully.  Per our genetic report, another Lissencephaly diagnosis has less than 1% chance of happening but it’s still very nerve-wracking and I would be lying if I said I didn’t get anxious about it.  The twelve week ultrasound and the anatomy scan showed everything looked great, so far.  We are planning to do a follow-up scan at 30 weeks and a possible fetal MRI to make sure.  Our MFM doctors are pretty confident that if the 30 week head scan looks good we can forego the MRI.  I don’t know how I feel about THAT but we’re taking it one day at a time and I’m going to think positively.

**I really waffled on if I should add those extra details or not but I decided to include them because some Liss parents have asked me about my experience to take the “next step”.  Deciding to have another child after a diagnosis isn’t an easy decision and I know that I asked many parents about their experience before we decided.  I always want to be honest, so if it helps the curious, I’m all for it!

We’re excited!!!

And some more pictures just because…

More updates to come!

Paige Patrol Thanks! And other things!

by Andrew Barbour

We have a few updates to discuss since the last time we posted on here, but first and foremost, Stephanie and I wanted to thank everyone, from the bottom of our hearts, who helped us out with our Paige Patrol fundraiser. I am truly humbled, and honestly shocked, at the number of t-shirt purchases and donations that we received. Your outpouring of support means the world to Stephanie and I. There aren’t any words I can use to express our gratitude to everyone, but please know how much your generosity means to my family.

It’s funny, because to be honest, I was kind of a stick in the mud about the whole thing. I remember very clearly saying to Steph “there’s no way in hell 100 people are going to buy these stupid t-shirts” (the way this thing works is, you have to achieve a minimum number of purchases before you receive your donations). Well, turns out I was 100% wrong, as the goal was exceeded within 24 hours of Steph starting the whole thing up. I am still awe-stricken by the amount of support we’ve received throughout our journey, and specifically with regards to this fundraiser.

As I’m sure you can imagine, having a special needs child is not cheap. I have a good job, pretty good health insurance and all the support you could ask for from family and friends, but there are certain things that wouldn’t have been possible without the support from you folks. Steph has done a lot of research on “alternative” therapies and special needs programs, pre-schools, camps, etc., and they are all incredibly expensive. Steph found one school in particular that’s very close to our house, and actually ended up meeting with some people who had sent their special needs children there. We heard nothing but rave reviews, and stories about children that went through this school and ended up able to do things their doctors never thought possible. I’m not going to give you a specific dollar figure, but let’s just say that it wouldn’t have been possible to send her to this school without the proceeds from the Paige Patrol fundraiser.

Because of the generous donations from you Paige Patrol folks, we were able to enroll her in this special needs “camp” at the school right by our house. After a lot of research and asking around, we decided this program would be a good addition to her normal regiment of weekly therapies. I’ll leave the specifics of what exactly they do to Steph when she has time to post about it, but it essentially revolves around muscle memory since Paige’s brain can’t tell her how to do things we wouldn’t normally even think about, like sitting up or rolling over. Despite her limitations, Steph and I swore from day 1 we would do everything in our power to get her little brain and body functioning at their maximum capacity. And we think the work they do with her at this school is going to help her to continue to thrive and excel beyond everyone’s wildest imagination.

On Sunday, June 7th, Paige celebrated her 2nd birthday. This wouldn’t be anything more than balloons and birthday cake for a “normal” 2 year old, but for Paige, every birthday is a milestone. Being that a lot of liss kids don’t even make it to 2 years old, we are honestly lucky that she is doing as well as she is, and thriving at that. We had a party with our family and friends on our deck that weekend, and it was a perfect day to celebrate her. As a result of everything we’ve been through as a family, we don’t take anything for granted, and have learned to appreciate every chance we have to make a memory with her. Her party that day was certainly something we will always cherish in our hearts.

Our summer is going to be crazy, in a good/busy kind of way. We have something on the calendar almost every day of the month through July, from Will’s soccer to Paige’s special needs camp and everything in between. It’s good, because I think as a family, we’re starting to develop a sense of “normal” after so many unknowns over the last year. Steph and I are realistic about what the future holds for Paige and our family, but that doesn’t stop us from appreciating all of the good things we’re experiencing now.

And thanks, one final time, to those of you who contributed to the Paige Patrol fundraiser. We will always be thankful for your generosity and all the good it is doing for Paige.

Pictures from the park, our home, a Pittsburgh Pirate game, Paige’s 2nd Birthday, and Conductive Ed!

 

EEG Update and Some Thanks

On April 20th, Paige had another 24 hour Video EEG.  I’ve been documenting her recent seizure activity on the blog and this particular EEG was to hopefully “catch” a seizure in action to determine an appropriate medicinal course to keep them at bay.

**Quick version** If you haven’t been keeping up, or are just tuning in, we’re pretty sure Paige is having tonic seizures induced by startles and being woken up.

As I predicted, our girl didn’t have one “episode” during our whole hospital stay!  Believe me, we tried to induce one.  A nurse did the light test where they flash blinking lights in her face, I woke abruptly while she was napping, and I tried to scare her a bit.  (Her neurologist got a pretty good laugh watching me try to induce a seizure when they looked over the footage…)  Nothing worked.  Not. One. Thing!  So, even though we didn’t really get what we were looking for, I ultimately took it as a good thing that she wasn’t having them and figured I’d get a call from the neurologist saying, “No change!”.

Wrong.

Well, maybe.

Paige’s neurologist called me this morning and told me that while they did not see any seizure activity her brain waves looked “scary”.  I’ve explained this before, but Paige’s brain activity will never look normal because her brain structure is not normal.  They can get a baseline for “Paige’s Normal” and still detect dangerous or problematic activity going on.

So, what does this mean?  We don’t really know.  Paige is acting as happy as ever and even had a burst of development!  She has been rolling over unassisted, appropriately says “yeah” (in the cutest voice, might I add), shakes her head no (mostly when she doesn’t like a food or get a diaper change), and has been reaching and playing more and more.  All the while, her brain is looking “scary” and we don’t know why.

What I do know is that she has been having some sort of seizure activity.  In what capacity?  We’re not sure but we’ve had to give her rescue med, Klonopin, a number of times and, while it’s worked, the fact hat we needed to use it means… something.  We just don’t know what.  We also know that seizure activity tends to change around age two and she’ll be that age in June.  We know that we’ll have to deal with seizures in some way, shape, or form for the rest of her life.  A leading Lissencephaly doctor at Boston Children’s told us that she has a 100% chance of having a seizure disorder, so there’s that.

Our options:

1.  Another round of ACTH injections.  Paige has had a successful round of ACTH during her bout with Infantile Spasms when she was 6 months old.  This is a heavy duty steroid that I had to inject in her thighs twice a day for a month-long course.  She gained weight, was completely miserable, and didn’t smile for weeks.  However, after she weaned, we had ourselves a happy baby with a “near normal” EEG.  It worked and it worked for a long time (yes, a year is a long time in the Liss world).

2.  Another oral steroid.  Month-long course.  Probably the same as above aside from the needle pricks and pain.

Let me add, Paige was a CHAMPION during her ACTH treatment!

3.  Try another epilepsy drug on top of the one she takes twice a day to see if that helps.  Most kids that I know with Liss are on more than one.  Sometimes a handful or more.

4.  Wait and see.  Since her behavior and development is great, this sounds like a no brainer but there is a chance that the “scary” brain waves can mean trouble’s a-brewin’ and she can have a really BAD seizure and complications that follow.

I don’t even want to think about the complications that can follow.

I’m currently waiting for another neurologist in Pittsburgh to give their opinion as well as the previous doctor’s I mentioned in Boston.  From there, Andrew and I will make the most educated decision for Paige and hope that it works.  We’ve always told ourselves that we’re going for quality of life over quantity but it doesn’t make these decisions suck any less.  We shall see.

Andrew and I are doing okay after the information we were given today.  We’re happy that she’s so happy and there’s still a lot of facts and options that we need to acquire for her doctors.  All we can do is consider this a plot twist in our lives and do what is best for our girl.  We’ll definitely keep you updated!

*************************

On another note, we want to give a HUGE thanks from the bottom of our hearts to those who have supported our t-shirt fundraiser.  We met and exceeded our goal in less than 24 hours..  24 HOURS!!  

The amount of support, well wishes, likes, shares, and donations brought me to tears and we’re so thankful!  So, thank YOU!  We can’t wait to rock our PAIGE PATROL t-shirts!

Paige Patrol T-shirt Fundraiser

Hello, all!  We are raising funds to help with out-of-pocket therapies and interventions for Paige.  Here is a link if you want to check it out.  Thank you so much for your support!

https://www.bonfirefunds.com/paige-patrol

xoxo,

Stephanie

You’ll Never Walk Alone

In a eulogy I recently delivered at my Grandfather’s funeral, I encouraged everyone in the audience to take time to reflect on, and be thankful for, all of the good things we have in our lives. Since I have previously been told (in a nice way, of course) that my writings on this blog have been a little on the “downer” side of things, I decided it was time to take my own advice! While my prior posts were totally honest and reflective of how I felt at the time (and still feel, to a degree), there are so many positives that our daughter’s health situation has brought to our family, both directly and indirectly. I wanted to take the time to highlight one particular way that Paige’s health has brought my family even closer together than we already were, and how our wonderful daughter has shown us what truly matters in life.

As Steph and I have both discussed extensively, we were completely blindsided upon receiving Paige’s diagnosis in December 2013. One of the first people we were referred to as a result of her condition was a vision therapist. When we initially met with this therapist about a week or so after her diagnosis, I was about as low as low could be. I had spent the whole week prior fighting just to drag myself out of bed in the morning. I had barely eaten anything, couldn’t sleep, and felt like I was living life in a daze. I didn’t understand how this absolutely perfect, beautiful child we had could have possibly received such a dire, life threatening diagnosis.

And then this therapist showed up at our house, and provided us hope when we had absolutely none. He was very empathetic and took the time to understand our situation and our feelings associated with it. But he also made it very clear that our daughter wasn’t going to be defined by a medical diagnosis, and that he would do everything in his power to get Paige as far along as her little body and mind would let her. He got me to look forward and think about all of the things I could do to help my daughter, as opposed to looking backwards and feeling sorry for myself. I will be forever grateful to this therapist and all of the assistance he’s provided Paige with, in addition to being there for my family and I during a very difficult time in our lives.

Anyway, this therapist recommended a few activities to help stimulate Paige’s vision, as her brain does not properly process the sights her eyes take in. One of the things he recommended was watching certain kinds of sports on television in HD, as the bright colors on things like hockey and soccer can be particularly attractive to any young child with a vision issue. If you knew me at all during the first 30 years of my life, you’d know that I thought the hockey thing was great, and the soccer thing, well not so much. But this was about Paige, and not me in the least, and I was willing to try anything within the realm of possible to help my daughter.

One of the first sporting events I put on the TV for her happened to be a Liverpool FC soccer game. If you don’t know anything about soccer (and I didn’t until about 6 months ago) Liverpool is one of the most popular and successful soccer clubs in England, all of Europe, and really, the entire world. And for whatever reason, Paige was immediately glued to the TV and fixated on it for the entire game. We’ll never know for sure, but I assume she was attracted to the bright red home jerseys Liverpool wears contrasting against the green soccer field they play on.

Interestingly enough, the “anthem” for Liverpool FC is a song called “You’ll Never Walk Alone,” which was originally featured in the 1945 Rodgers and Hammerstein musical “Carousel.” The song has been covered by many notable artists and bands, and part of it is even featured in a Pink Floyd recording titled “Fearless.” It officially became the anthem for Liverpool FC in the early 1960’s upon a commercially successful covered release of the song, and the phrase “You’ll Never Walk Alone” is even featured within Liverpool’s logo. One of the greatest spectacles you will ever see in all of sports is 45,000 Liverpool fans singing this song, completely in unison, during warm-ups for every home game. The words go like this:

When you walk

Through a storm

Hold your head

Up high

And don’t be afraid of the dark

At the end of the storm

Is a golden sky

And the sweet silver song of the lark

Walk on through the wind

Walk on through the rain

Though your dreams be tossed and blown

Walk on, walk on

With hope in your heart

And you’ll never walk alone

You’ll never, walk alone

This song, and the way it unites the Liverpool followers, immediately struck a chord with me. I thought about the words and how they could be applied to my own life. It made me realize that while things didn’t necessarily work out the way Steph and I had envisioned them, that our family has so much love, so much hope, and we weren’t going to let this curveball we were thrown define us. We’ve realized that Paige’s condition may bring us some “downs” in life, but that Paige herself is full of absolutely nothing but ups – joy, love, happiness – the only things that really matter in life.

So fast forward a year, and one of my favorite activities to do with Paige is watch Liverpool soccer games on Saturday and Sunday mornings. Paige may never be able to speak any words, but I can feel the bond between us strengthening every time we watch these games together, and for those 2 hours or so, nothing else matters. Lissencephaly, seizures, and all of the other bad stuff associated with her condition cease to exist, and we just have quality father/daughter time in our own unique way. I can see the love for me that she has in her eyes, and I’m confident she knows how much she is loved by Stephanie, Will, myself, and the rest of our family.

You’ll never walk alone, Paige. You’ll never walk alone.

 

Seizure Shenganigans!!

Well, I’ll start off by saying that seizures suck.  I haven’t posted in a while (surprise, surprise) but since my last one we’ve had a few jaunts in the ER due to seizure activity and illness.  In the life of Lissencephaly seizures are almost always present and our situation is no exception.

A few months ago, Paige started a low dose of Keppra after a breakthrough seizure (I’ll get to this in a minute).  Thankfully, there have been no harmful side effects like irritability, mood swings, lethargy, and rage.  In fact, I’d say we have only noticed positive changes in her demeanor since starting.  She’s more alert, cognitive, and has a wider range of emotions.  Sure, she might wail and cry with a little more gusto than before, but on the flip she’s been giggling and laughing with vigor, as well.

Since she’s approaching two years old, I’ve been warned by her neurologist that since she’s growing bigger and more faster we might have to adjust her dosage more frequently.  It really depends on the frequency and amount of breakthrough seizures she’s having.  Coupled with an EEG we might come to find that we need to change or add a completely different medication to fit her type of seizure(s).

The past couple of months I would definitely say we’ve seen a “breakthrough” seizure.  So far, I’ve seen 2 and they’ve been pretty nasty.  The first one happened right before vision therapy and and she was in her Special Tomato chair.  Suddenly, she doubled over and got really rigid.  Her breathing became labored and she grunted and drooled.  Her left arm was raised and trembling.  Most likely, this was a tonic seizure and it clustered on an off for about 25 minutes.  That’s a REALLY long time!!!

During this time I took a video of the activity and called Andrew to come home from work.  We made it to the hospital and was hooked up for a one hour EEG.  Paige didn’t preform for the neurologists and she was stable the entire time.  However, based on the severity of her cluster, Keppra was prescribed.

I’ve honestly really relieved she’s on medication.  Aside from her ACTH, she’s been able to dodge any type of seizure activity and medication for over a year and a half.  It’s a nice security blanket to have and I feel better with the extra help.

Fast forward a few weeks and we have a young Will with a fever and a cold.  His fever was treated with ONE dose of Tylenol and lasted half a day.  A few days later Paige comes down with the same thing and I was hopeful it would be mild like her brother’s.  WRONG!  Paige started throwing up and the next few days were spent trying to get her to eat and drink.  She was limp and her fever was high so I rushed her to CHP where she received 3 bags of fluids, oxygen, and IV antibiotics for a night.  She was incredibly sick and it was so hard to watch.  What’s kind of crazy is that fevers and illness often set off seizures and she had absolutely NONE throughout the whole ordeal.  After a few days of rest she was back to her old self!

And now we come to this past Monday.  This story is going to look a lot like the first because it was during vision therapy (again) and it happened in the Special Tomato chair (again) and it lasted for about 15-20 minutes (you got it.. again).  When she came to she was perfectly pleasant and happy as a clam.  Can you say roller coaster of emotions?!

Off we go to the hospital but this time I refused an EEG because I knew she wouldn’t preform and it would be pointless.  Since she has a seizure disorder and they are going to happen I requested rescue medicine.  I can’t go to the ER every time she has activity so I’m glad to have these around.  She was prescribed Diastat and Kolonopin.

Diastat is pretty hardcore and I have to call the paramedics to monitor her when I administer it.  This will also mean another hospital stay because this drug is essentially Valium and can labor breathing and slow her system down to dangerous levels.  This drug will also knock her out for a day.  I also requested Kolonopin because it is less intense and instead of being out of it for a day, she’ll most likely only sleep for a few hours.  I feel a lot more comfortable with this drug but still hope I don’t have to use it.  Both of these drugs have to be given if her seizure lasts more than 5 minutes and since both of hers lasted a lot longer, the odds that I won’t have to use them are pretty darn low.

I’m actually pretty happy with the way I’ve handled myself during Paige’s seizures.  When I first thought of Paige having one I would get really anxious and get really scared.  But after being there while she experienced one, I was actually really calm and talked to her in a soothing voice while she was struggling.  When it was over, I just did what I thought I had to do and it was over.  I’m not saying that I loved the experience because I hated it, but it wasn’t as scary as I imagined and I’m kind of proud of myself for not freaking out.  Andrew and I made a pretty amazing team throughout and Paige handled everything like a rock star!!

Happily, our little Paige recovered nicely and she’s been having really good days and is working hard in her therapies.  She’s smiley and laughing, scooting around on the floor, and watching her favorite show, Dora and Friends.  Will is loving school and trying to beat cabin fever by building forts and calling people on the phone.

Picture time!

Painting at Children’s Museum

Mr. Roger’s bus!

Lollipops during OT

Mama and Paige

Sick in the hospital

Sick in the hospital

Recovering in the hospital

Recovering in the hospital

Recovering at home

Snow ice cream

Target dinner date

Family Skate!

Paige got to skate too

Snuggles

New haircut

Pittsburgh Penguins game

last ER jaunt

ER fish

new dolly

Target trip

puzzles