Month: February 2014

Meltdowns, Pep talks, and Picking up the Pieces

courtesy of Pinterest

courtesy of Pinterest

A part of the grieving process of a Lissencephaly diagnosis is mourning the loss of the child we thought we had and learning to appreciate the child that we do have.  I’ve written about this in previous posts and I feel like this will be a life-long process. With every stage of her life there will be constant reminders of what she won’t be able to do.  Right now, Paige is 8.5 months old.  She should be sitting up, maybe crawling, definitely exploring and playing.

But she’s not.  And according to Wikipedia, she may never do any of those things.  (Just a few reasons why I don’t search anymore…)

Instead, I remind myself what she can do.  With help, she can explore with her mouth.  She’s getting stronger during tummy time.  She’s starting to bear weight on her legs.  She’s smiling, laughing, tracking, and alert.  She’s thriving.  She’s here.

In the upcoming months and years there will be more age-related milestones that will inevitably make me sad.  When my friends will be taking their daughters to dance class I’ll be taking mine to a specialist.  When they take theirs prom dress shopping I might be taking mine for a wheelchair fitting.  When other’s kids are looking forward to school, sports, and activities, I’ll be wondering when Paige will have a seizure and if I’ll be able to lift her.  Or worse yet, if I’ll even get to have that time with her at all.

I know all of this might seem far-fetched, and once again, it’s absolutely not at all productive, but these things do creep in my mind and I hate it.  I hate that I even give the thoughts my time and energy.  I hate how I feel guilty when I do get this way.  I hate how I sometimes get jealous.  I hate that I probably am being selfish and feeling sorry for myself.

I’ve found that my worst thoughts come when I try to suppress them and be the “bigger person”.  I know these feelings aren’t particularly attractive characteristics so I compartmentalize my grief.  When I put these emotions away, I quickly find that my body and brain simply has a limit and that’s when a meltdown occurs.  Pretty recently, I decided to just let myself feel how I’m feeling when I feel it and then LET. IT. GO.  When I go about it this way, my feelings last a few moments and I can carry on.  When I keep all of them in and push them aside, they back up and it becomes an entire day of crying.  I simply can’t do that.

I give myself pep talks to keep going.  I remind myself that Paige is an absolute delight and she’s the most pleasant baby I’ve ever met!  I kiss her chubby cheeks and smell her sweet neck and love up on her constantly.  Actually, being with her keeps me calm.  SHE is doing wonderful and I am the one who is sometimes not.

In my previous post, I wrote about how Paige brings people together and is just a complete being of joy.  I still stand by that and will be proud of her no matter what she can or can not do in her life.  She amazes me every day and I am happy to have her a thousand times more than I am sad about her diagnosis.  And she will always be my best girl.

courtesy of Pinterest

courtesy of Pinterest

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Getting Here. The Road to Diagnosis.

I just got a really positive message from somebody stumbling across the blog who is going through exactly what my family went through two months ago.  This person has a close family member that was just diagnosed with Lissencephaly and they were scouring the Internet looking.. searching.. HOPING for something to grasp onto that might hold an ounce of positivity to it.  Instead of getting a few words of information that would make them feel any better they probably found out (and very quickly) that Google is the devil.  They probably found the Wikipedia page which was the absolute WORST and were puddles on the floor when they got to the words after “life expectancy”.  We’ve been there.  We’re GOING through it.  It sucks… and my heart is with them.

One thing she said she’d like to read is our journey to getting the diagnosis.  I haven’t even relayed that on the blog and that’s a huge part of the puzzle!  How did I miss that?!  Well, I’ll start from the top because I feel it’s all worth sharing so, here goes!

June 6th, 2013.  I was 37 weeks pregnant and I went in for my weekly checkup with my OB.  My fundal height (baby bump) was measuring a bit smaller than she’d like so she asked if I would go for an Ultrasound to check if my amniotic fluid was low.  She assured me it was probably nothing and if I wanted, I could make the appointment after the weekend.  I’m not one for waiting and I’m a huge worrier by nature, so I made the appointment the next day.

To make a long story a little bit shorter, the Ultrasound didn’t go that great.  The baby appeared to be pretty healthy but was very small, particularly her head.  Because I was 37 weeks pregnant, and technically full term, I was sent to be induced that day.  When the tech called the doctor, they suspected that the placenta was working too hard and was going to eventually stop if the baby wasn’t delivered.

My induction was great.  I’d say pretty perfect, if you asked me!  I got an epidural, didn’t need an ounce of Pitocin, and delivered 6 hours later.  I pushed for a grand total of 3 minutes and I couldn’t have been happier.  A beautiful Paige Marie was born around 10:3-pm weighing 6 pounds and 4 ounces and was 19 3/4″ long!  The NICU nurse (who happens to be one of my closest friends) was there to measure and take care of her vitals.  It wasn’t long after where we heard that she was PERFECTLY HEALTHY!  We were elated and quickly got accustomed to being a new family of 4!

This past summer was awesome.  There is no other way to describe it.  It was absolutely joyous and we were so in love with our soon-to-be two year old boy and our new and beautiful baby girl.  I felt so incredibly blessed and was so thankful over having a great newborn.  She was a super eater and a wonderful sleeper and it made adjusting to having two kids so much easier.  We felt like we hit the jackpot!

It wasn’t until her 2 month check up until we noticed something was “off”.  Paige wasn’t tracking and her pediatrician suggested we see a Pediatric Opthemologist to check for any vision issues.  From that day, something in me just “clicked” and I KNEW something was wrong.  I felt it in my gut and it was the most nagging feeling in the world.

We saw the Opthemologist about a month later.  She did a pretty thorough exam and said that Paige had a small amount of Nystagmus (wiggly eye) but she should grow out of it.  She tracked the light for the doctor and passed her eye exam!  But things were still off.  Paige didn’t really smile, was extremely passive, and didn’t really cry a lot.  She grunted a lot, but didn’t really wail like newborns do.  She didn’t reach or roll over and didn’t show signs of doing it any time in the near future.  The nagging feeling was still there…

Within the next month Paige did make small steps in her development, but not enough to ease my fears.  She did make eye contact, she started smiling, laughed a few times, and started crying a little more.  At her 4 month appointment her pediatrician said she was absolutely perfect and healthy and that I should consider myself lucky for having two healthy children because some people aren’t so lucky – a comment that still haunts me to this day, by the way.  The doctor also advised that I cancel Paige’s follow up eye appointment the following month.

Well, I didn’t cancel because that nagging feeling I was worried about wasn’t getting any better.  To be exact, it got worse.  Bad to the point where I thought that maybe I was obsessing over her health too much and sought help for Postpartum Depression.  I didn’t really think that I had PPD but I didn’t know what else it could be.  I was so convinced that something was wrong with my baby but I had several doctors telling me everything was okay!  It HAD to be me!  I could go on about this, but I’ll save it for another post…

*Deep Breath*  Okay, where was I?  Uhhh, the next eye appointment!

So, the next eye appointment was the start of getting some answers.  Paige was 5 months old at this point and still not rolling, not reaching, not exploring, and not doing a lot of other things babies of that age do.  The Opthemologist did another full exam and this time Paige did not track very well.  We noticed that Paige could track objects and people from far away but once they got up close she would lose them.  The anatomy of her eyes looked perfect but things weren’t quite adding up.  I left the appointment with some fears confirmed and a prescription for a brain MRI…

I’m having trouble writing about late December and on because it was extremely emotional and hard.  Her MRI was on Friday, December 20th and we had a weekend to stew about the news we would hear.  Optimistically, I thought it was just a vision problem.  Or a pediatric stroke.  Or Autism.  I stayed away from the Internet and prayed for good news.  I started to BELIEVE I would get good new.  But we didn’t.

December 23, 2014 was one of the hardest days of my life.  It was the day before Christmas Eve and we had plans to travel to Central PA to spend the holiday with my family.  We were also waiting for the results and IT. WAS. EXCRUCIATING!!!  I called the Opthemologist’s office several times waiting for the doctor to get in and they said she wouldn’t be in until after 1pm.  My husband called after me and convinced the doctor to call from her cell phone earlier.  At 10 am, I got a call from a nervous doctor telling me…

“There is an anomaly in Paige’s brain.  The brain should have ridges but her’s is smooth.  It’s called Lissencephaly Type 1 but I don’t see anything acute.  It’s a wide spectrum.”

My head spun.  WHAT did I just HEAR?!  I had so many people to explain this to!  I had to call my husband!  Tell our families!  While I was calling Andrew I did a Google search and I could’ve died!  I go from thinking she has a vision problem to learning she’ll never be able to walk, talk, and possibly not survive after age two.  Utter devastation ensued.

Side note:  Don’t ever tell someone going through a hard time that “You can’t even imagine…”  because we can’t either.  We’re living through it and those words are like daggers.  However you think you would react is probably how you would react.

However, all the while I held onto the not acute part of the conversation and found hope for a somewhat normal future for Paige.  That was also quickly diminished when we went to her first neurology appointment and we found out that it was, in fact, a severe form.

And that’s where my blog starts… after the diagnosis.  The dealing, the accepting, the grieving.  It’s all here.  If anyone reading this is out searching for something positive, like we did, please take this from us..

(Disclaimer:  we’re still newbies at this whole living with Liss thing so our ‘advice’ and ‘input’ will probably be ever changing and this is a reflection of our experience.)

Upon diagnosis, you will be devastated.  You will feel the darkest and most helpless you have ever felt in your entire life.  You’re heart breaks in a million pieces for your child’s life, your life, and the lives of the rest of your family.  You will play every single scenario and outcome from the good and the bad through your head.  You will grieve the loss of the child you thought you had and really start to get to know the child you have.  The journey to acceptance will be a roller coaster.  You will have good days and bad days, and days spent in bed.  You’ll force yourself you get up because you will have no choice.  Life goes on.  People need you and you can’t quit even if you want to.  You’ll have weak moments but slowly, you’ll find yourself enjoying things again.  You’ll laugh and joke.  You’ll begin to find joy again.  Of course, things will still feel heavy, but you will carry on and do it for your child and simply because being sad all of the time is exhausting.  You will find that people will be there to help and lighten the load.  You start to live again and it does get better.  Not all days are easy, but please know, that it does get easier.

If you need some resources to turn to, like I did, I would recommend social networking.  Facebook groups have been a huge blessing for me. I joined the Lissencephaly Network and The Lissencephaly Loop and it’s great to have so, so many others on there for support, stories, and even HOPE!  I actually have found a woman from the Liss Network who has a son around the same age as Paige that lives in the same city as I do!  We’ve become very good friends and she has been one of my biggest support systems throughout this journey and we talk/text almost daily!  You wouldn’t believe how therapeutic it is to be able to really TALK to someone without having to worry about judgement or the “sad eyes” from people.  I’m very thankful for these resources and would highly recommend them!

And here concludes our lives before Lissencephaly.  I have to say, besides more doctor’s appointments, therapies, and testing, life is actually pretty normal.  It’s OUR normal and we’re going to go with it.  Paige is our little angel and we love her.. just the way she is!

A Life Worth Celebrating

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When we were told to never expect our child to walk, talk, or take care of herself the pain was indescribable.  Sometimes, it still is.  I’ve spent many nights lying awake thinking, planning, and being fearful of the future.  As my baby gets bigger, my fears grow bigger too.  Right now, she is small.  I can still pick her up with one arm, she is still in an infant car seat that I can carry, and she is easy maneuver.  One day, she will not be so easy.  Will I be strong enough?  Will I be able?  I also have another child that is growing who needs me.  Sometimes all of me.  Can I carry both?

The times where I feel like my weight is the heaviest is when help comes through.  So far, it’s been unfailing and right on cue.  From day one of this experience people have been there with so much love and support that sometimes it renders me speechless.  Perfect strangers are putting Paige on prayer chains, Andrew’s colleagues and his mom’s teacher friends have pitched in to get us restaurant gift cards, family and friends have offered to babysit so Andrew and I can get out once in a while.  So, so many gifts have been sent to Paige and Will and entire congregations of Churches have prayed on behalf of our family.  Paige has even made prayer board for the monks at the Saint Vincent Archabbey and College!

Today, Paige reached, grabbed, and explored a stuffed elephant with her mouth.  This is actually a pretty big milestone in every babies life but this also example of something we were told to expect she might “never do”.  If you look underneath all of the garbage that the situation can be sometimes you can find some roses.  When we are told to not expect anything and something happens, it’s huge.  To people on the outside it might not be a big deal, but for us it is a victory and a celebration.  Her life is worth celebrating!

Like I’ve said in previous posts, when you get a bad diagnosis, you thing of everything.  Every single outcome from the good, to the bad, to the in-between.  She might not ever be able to walk or talk but just look at what she’s done in the short 8 months she’s been on this Earth!! And the even shorter month and a half since we’ve known of her condition!  She’s brought SO many people together!  She’s definitely brought out the best in us and brought our family closer.  She’s taught us to not take any little thing for granted and she’s caused so much goodness! And to think, she was able to do this without even saying a word…

We know that she could be here for a short time.  She can also be here for a long time.  We don’t really know.  But doesn’t that goes for everybody?  I think about this often and don’t know what it will mean for our future, but throughout all of this, I know that we’ll be okay.  People will step up, we’ll step up, and we’ll continue to hope.  Let the celebration continue!

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Vision Therapy 
ImagePaige’s “Angel Wall”.  Some of the gifts sent from family, friends, and strangers.


ImageBest Valentines we could ask for!
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Celebrating Valentine’s Day with some heart pizzas!

  A little boy asked his Church congregation to sign Valentines for Will and Paige.  A touching example of how great people can really be.  We read every single one together!Image

NO MORE STEROIDS!

A big fist pump to the air was given yesterday after I gave Paige her last steroid injection!  She was an absolute trooper throughout all of them the past four weeks and we’re so thankful that it did it’s job.  Paige is still not exhibiting any infantile spasms and that is still a huge thing to be positive about.  She’s also back to the happy baby we knew and it’s such a relief.  

The first two weeks during her course consisted of a high dose of the steroid (ACTHar) in her thighs twice a day.  With every dose she was given vitamin B6 and Zantac for acid reflux.  During this time, she was a completely different baby.  Her bright eyes became heavy, she never smiled, and she just looked miserable.  You can tell it totally wiped her out and made her pretty zombie-ish.  It was heartbreaking.  Even though we were told that it was temporary, we still feared that it wouldn’t be and we missed our happy little snuggler pretty quickly.  She also ate like a horse and gained about four pounds in these two weeks!  Yikes!

The third week started the weaning process with only one injection a day at a lower dose.  Pretty easy right?!  Well, this was actually the most miserable and exhausting week. Sleep didn’t happen and Paige was up every hour and was at her most ravenous and was very fussy – we called this her ‘roid rage.  She was still pretty miserable and didn’t want to be moved around a lot.  The notes from her therapists said that she was: not alert, not engaged, not totally responsive, and rigid.  Our saving grace was actually a pacifier, that we dug up in her sock drawer, and it provided a lot of comfort to her and a lot of sanity for all of us!

And then HOORAY! The last and final week!  This past week, Paige only received a low dose every other day with yesterday being the final day.  I’m not exaggerating when I say that her personality changed almost over night early in the week.  Andrew was getting ready for work on Monday and I was making coffee (or something) when he called me over and yelled, “She’s SMILING!”.  

IT. WAS. AWESOME!  

Andrew and Paige always have had a special bond and it was really touching to see how excited she was when her daddy was talking to her.  She was just sooo smiley and alert!!  She hammed it up for her therapists and the adjectives in their notes turned to: active, engaged, pleasant, and feisty.  DEFINITELY easier to read than the previous week’s notes from them.  Her sleep even got back to normal and she was back to snoozing through the night!  Paige also seemed to be stronger and also rolled over from tummy to back with very little assistance. This was HUGE and we let ourselves be happy about this.  Celebrating the good times is definitely more fun then worrying and fretting.

Buuuutttt, it happens…

As a family, I’d say we’re doing pretty well considering it’s only been a month and a half since diagnosis.  However, since appointments and hospital visits have been slowing down I’ve had some more time to think and I’ve had some pretty bad days.  For so long, we’ve tried to look on the bright side and keep the negative thoughts at the back of our minds but this past week I couldn’t handle it anymore and I let it out.  

I let myself feel.  Whatever emotion I had, I let it out.  To be honest, I’m not proud about a lot of the things that came out of my mouth or in my head.  I can’t tell you how many times I screamed “IT’S NOT FAIR!” and asked myself “why MY baby?”.  I felt sorry for myself because I tried to do everything right during my pregnancy and my baby has a terrible diagnosis while some women do drugs during theirs and have completely healthy kids.  I know it’s not right, but I’m being honest and it’s how I felt at the time.  Why any baby, really?  Why any family?  Acceptance with the diagnosis comes in waves and it’s been a struggle.  I’ve always accepted Paige but I’m having trouble with the “why”.  While I can go about my day and have genuinely happy moments, there is a constant heaviness in my heart that won’t go away.  I’m not sure it ever will.  I’m hoping and praying I get to a point where acceptance isn’t such a struggle and our “new normal” becomes more natural.  

Thankfully, Andrew doesn’t really let myself feel this way for too long.  He has been such a beacon of strength for me (and everyone, really) during this time and encourages me to snap out of it.  While I have been pretty faith-based and look above for guidance, Andrew turns to science and medicine for answers.  In that way, I think we balance each other and it’s how we keep each other grounded, hopeful, and strong.  I think I definitely needed to cry it out, but after a while it’s not productive and it certainly isn’t good for Will to see in a puddle of my own tears for days on end.  We are very mindful that this whole situation affects him and we want every transition to go as smoothly as possible for our family. 

If there’s anything I’ve learned, it’s that we must live in the now.  Right now, we are okay.  Right now, we have a lot to be thankful for.  And that makes me feel so much better.

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Little Moments

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This weekend was spent winding down from the 24 Hour EEG and celebrating the positive news that the ACTHar (injection steroid) did, indeed, control Paige’s Infantile Spasms.  I have to admit, it felt awesome.  Awesome to not be constantly thinking, worrying, waiting, planning, or scheduling.  It felt like a small HUGE victory and a weight off of our shoulders.  Throughout the past month or so, life has felt like a rapid fire of appointments, diagnoses, treatment plans, and acceptance.  Some days it felt like there wasn’t enough of me to go around.  Some days, I felt like considering how fresh everything still was for our family, overall we were doing pretty well.  I’m starting to believe that happiness truly is a choice! Actually, it’s an easy decision to choose when your only other option is defeat.

I would be lying if I said that I didn’t have dark moments where I think of all of the scariness of the “could be’s”.  There are a lot of them and I do go there sometimes.  It’s not productive and it’s something that I’m striving to overcome, daily…

Then there are those moments.  The little occurrences that happen all too often that probably slipped under the radar before.  Like, when I’m rocking Paige to sleep and I look at her fuzzy little head and pouty little lips and realize she is still just a baby.  An eating, sleeping, pooping, peeing, baby.  All she really needs from me in this moment is for me to love her – just like any other baby.  Moments like how she gets excited when I feed her in the big girl high chair and how she grunts, excitedly, for more in between bites.  In that moment, she is thriving and happy – just as she should be.  It’s when she kicks her feet in the bathtub and giggles at her silly brother when he’s playing with her toes and giving her sudsy kisses.  In that moment, I am a mom savoring precious time with my two, little, and beautiful children – just because I can.

There are many of these moments throughout the day and I make sure I am a lot more mindful of them when they happen, and really, that’s such a beautiful thing.  I’m talking taking it all and and running with it!  Talk about blessings in disguise?!

I’ve also been spending a lot of time really watching my two year old, Will.  I watch him climb on a clothes hamper to play “cooking” in my cupboards, jump and roll around in the snow, hide crayons to color on the wall when he thinks I’m not looking, jump across the room from the ottoman to the couch.  I watch him all of the time and don’t take for granted how easy it is for him to do all of these things.  I’m in awe about how eager he is to explore and how he, is so young and, knows he should try to cover his tracks when he’s doing something naughty.  For obvious reasons, I correct his behaviors when they are wrong, but I always take lots of mental photographs because I know they will be such good memories that I’ll hold with me always, especially when he’s older.  And if I’m really quick, I can get actual photographs too!!

“There’s a crack in everything, that’s how the light gets in.” -Leonard Cohen

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EEG Results!

As my last post explained, Paige is finishing a month long course of a high-dose injection steroid to control her infantile spasms.  According to her Epileptologist, the medicine should work in the first two weeks and the last two weeks are for weaning.  We just finished up week three of the steroid and just had a 24 hour EEG to see it worked and we have the results….  

IT DID!!!

After over a month of bad news and setbacks, we finally got a shred of hope!  The EEG report showed that the ACTH (steroid) did stop the spasms and they should *fingers crossed* be at bay for a while.  How long they will be under control is still a question – it could be 10 months or it could be 10 years.  We don’t really know.  But, at this very moment she is not having seizures and we are celebrating.  

Paige was pretty out of it for a while and it was hard to watch.  She gained about four pounds and got really swollen.  Our normally smiley and cuddly baby was very irritable and uncomfortable and it broke my heart.  Within the last few days her smile has come back and she is getting back to her normal schedule and routine.  We are elated!  

We know that Paige will be prone to many seizure disorders in her life due to her Lissencephaly but, as we said, we have to take the good with the bad and these past few days have been good.  Her EEG’s will never be normal but her doctor said that Paige’s was the most normal looking one she’s ever seen for a kid with Liss.  She also predicted that Paige might have a burst in development soon and, even though I’ve always believed that she will, it makes me more hopeful.

We’d like to thank everyone for their prayers and I thank God every day for taking care of her.  And how about a shout out to science and medicine, too?!  I’m always amazed at medical professionals and we thank them for taking such good care of us, especially Miss Paige.

We’re happy.  

*sigh*  It’s good to breathe again…

 

“Good news is rare these days, and every glittering ounce of it should be cherished and hoarded and worshipped and fondled like a priceless diamond.” -Hunter S. Thompson