Brain Malformation

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!

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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!

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We’re excited!!!

And some more pictures just because…

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More updates to come!

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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!

Winter is Coming…

Lately we’ve been feeling like Winter is Coming.

If you’re a Game of Thrones fan you know the meaning behind this.  “Winter is Coming” is a motto in the show that means take warning and stay on your toes because something bad is on the horizon.  It’s also kind of literal because our memories of last winter are less than pleasant.

December 20th marked Paige’s MRI.
December 23rd came the diagnosis. (I also had an emergency appendectomy that day)
December 30th was our first neurology appointment where we learned the severity of Paige’s brain malformation.
January and February’s memories consist of the start of Infantile Spasms and a month long course of ACTHar steroid injections.  Health-wise, Paige has had a pretty good rest of the year year.  Her Infantile Spasms were controlled by the ACTHar and she has made quite a bit of progress developmentally that we were told probably weren’t possible.  We’re thankful for that and it’s been an amazing year of watching her and our son Will grow.

The past few weeks we’ve noticed some “questionable movements” that could possibly be seizures.  Luckily, Paige had a 24 hour EEG scheduled for yesterday and hopefully we get some answers.  Her neurologist and I agree that the reason the ACTHar treatment was so successful is because we started it almost as soon as Paige started having the seizures.  I’m hoping that if she is having them that it’s early enough and they’ll be controlled easily.  Hence,  Winter is Coming… We shall see…

Going back to this year, it’s been.. well, it’s been a long year. It’s been a year of the unknown. It’s been a journey of grief, acceptance, love, and adjustment. We’ve grown as a family in ways I never imagined and got our feet wet in a life-long road of a different kind of love. We’ve been overwhelmed with kindness from the people in our lives, we’ve felt lonely, we’ve gotten angry, we’ve struggled, we’ve made memories, met a bunch of INCREDIBLE families, and we’ve learned to be happy again. Constant learning and adjusting is the name of the game from here on out.

Andrew and I find ourselves reflecting on this past year.  There have been so many positives and great memories but as the air gets colder, we find ourselves thrust back into the rawness and realness of last year around this time.  In a way, I think it’s important to reflect on the bad and appreciate the good but it’s still painful.  Still, we’re determined to have a great holiday season and focus on the great holiday memories.

I’m planning on writing about the full 24 hour EEG tomorrow and other family updates tomorrow, but for now, here’s some pictures!

Feeding Paige.. This is how we do!

One thing that Paige has always been “good” at is eating.  From the day she was born until about 14 months she breastfed like a champ.  I started her with rice cereal at 4 months old, just as I had with Will, and progressed to Gerber purees in the following months.  While Will refused to take a bottle until he was around 8 months old, Paige welcomed one with no problem.  While she was lagging in just about every other milestone, eating was something that just seemed to come naturally… but not perfectly.

She still spit up her milk on occasion and gagged on thin purees.  She coughed in between bites here and there were times (and there are still times) she chokes on chunks of food resulting in a total loss of a meal and a huge mess to clean up.

A common concern for children with Lissencephaly is aspiration from food or drinks that could lead to pneumonia and other pulmonary infections.  A lot of times, Liss kids die from infections like these so we’re super careful about what and how we feed her.  We like to be as prepared as possible so when she was 9 months we scheduled a Feeding and Swallow Study at the Children’s Hospital to see just HOW she was eating but mainly to see if she was aspirating any of her food and drink.

The study consisted of feeding Paige by bottle, breast, and by spoon.  Although we found that she was indeed NOT aspirating, we still had some work to do.  Paige had a lazy latch and got tired on the bottle and any thin purees were usually thrusted out of her mouth with her tongue.  The solution was a change in bottle position, lots of breaks, and thickening purees to a consistency that she tolerate.

Feeding Paige has been a complete trial and error since she started pureed foods.  There’s no blueprint for what to expect for her, eating wise.  Currently, at 16 months old, she is eating at a 10-11 month old level and we’ve worked hard to get her there!  Every week, her Occupational/Feeding Therapist spends a half hour working on feeds with her and we have a Nutritionist come to the house to make sure she’s getting all of the good stuff she needs.

Like I said, there aren’t a lot of role models for feeding Liss kids because they’re all so different so I’d like to share what’s been working for us, so far.

Equipment:

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Top:  Mealtime Notions baby spoon.  It’s bendy and textured and is easily grasped by little hands.  If your kid is anything like Paige, we use the “hand clutching” to our advantage and let her grab on.  Add a little taste on either end and, if we’re lucky, Paige brings the spoon to her mouth!

Middle: Nuk brush.  This tool is used before feedings to massage her gums, roof of her mouth, tongue, and lips to promote sensation.  This tool is especially helpful during teething because kids are more prone to bite down on the end which is something we want Paige to learn for eating solids.

Bottom:  Nuk flat spoon.  This spoon is AH-MAZ-ING because it is flat and wide.  To stop Paige’s tongue thrust, I use the flat end to push down on her tongue during feeds.  I’m essentially stopping the thrust and forcing her to use her lips to cover the food and keep it in her mouth.

Food:

I’ve been having a BLAST with making Paige’s food.  I’m trying to nix the Gerber as much as possible because,

1.  It’s expensive.
2.  She’s not a baby anymore.
3.  l have more control over her nutrition.

My grandmother gave me a Ninja Bullet and it has made my life SO much easier.  I previously had the Baby Bullet but it couldn’t hack some of the proteins I was trying to puree and it sadly burnt it out.  Anywho, making the foods I want for Paige has been so easy and I know she’s getting the nutrition she needs.

Here’s what I do:

1.  Buy any assortment of fruits, vegetables, and proteins.
2.  Puree food in Ninja (or any blender or food processor you have) to desired consistency.  (I like to make my purees a little thin because I like to thicken it myself with oatmeal or grains for added calories).  Also note that if adding calories are a goal, like they are for us, use chicken stock for your vegetable and protien liquid and juice for the fruits.
3.  Pour puree in ice cube trays and freeze for 2 or more hours until frozen.
4.  Pop out and place in gallon sized plastic bags.

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Here is my stock pile from yesterday made entirely of canned and frozen fruits and vegetables.  I pureed canned spinach, black beans, mixed vegetables, carrots, peas, green beans, garbanzo beans, wax beans, blueberries, pineapples, peaches, pears, and a tropical fruit mix.  I also had pureed ham and chicken from the day before.

What’s awesome about this is you can mix and match to make an actual meal and different ones every day!  All kinds of vitamins and minerals and all that good stuff.  It’s also very easy to measure because each of my ice cubes is 2 ounces and I know how much she is getting.

Paige’s feeding schedule is something like this (omitting bottles):

Breakfast:  Greek yogurt with one ice cube of fruit.  I nuke the fruit for 30 seconds and mix in the yogurt.
Lunch:  I mix and match 2 different vegetables with a protein.  I thicken it with either baby oatmeal flakes or grains to the consistency she likes.  This is a little over 6 ounces of food.
Snack:  4 ounces of applesauce or 2-3 ice cubes of fruit.
Dinner:  2 vegetables, 1 fruit, and 1 protein thickened with oatmeal flakes or grains.
Snack (if needed):  4 ounces of Cream of Wheat cereal with whole milk.

I’ve actually started to have a lot of fun making Paige’s food and I’m thinking of blogging more recipes to share!  I’ve got so many ideas!!

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We’re also working on Puffs.

Happy eating!

Milestones, Summer Recap, and Pics!

It’s the middle of August and can’t believe summer is almost over!  I have to admit, I am a little ready to slow down but we’ve had so much fun moving and grooving all summer that I’ll be sad when it comes to an end.  Also, at the end of this month, we will have a THREE YEAR OLD and we’re certainly having a hard time with that.  How did that even happen?!  Where did the time go?!  Didn’t I just have that little tornado of fun we call Will??

Last summer, I had an almost two year old and a newborn and I remember joyfully thinking ahead to this summer and what it would be like having two toddlers.  I envisioned them playing together, arguing over toys, sharing snacks and juice after a trip to the park, wresting them to take naps, and a huge mess in the bathtub before I got them ready for bed.  As hectic as this sounds, it was something I really looked forward to.  I actually enjoy the chaos that comes with kids and I think it’s the purest labor of love and something that makes me incredibly happy.

Fast forward to what this summer actually is.  Well, let’s see.  Things certainly are… different.  But at the same time, in many ways it’s not!  While I technically have do have two toddlers, it feels like I have one toddler and one baby.  While that sometimes makes me sad, it’s really not at all!

It’s. Just. Different.

Sure, my kids might not pass a ball back and forth or play with blocks together.  But, when I see how Will talks to Paige and the look on her face when he rolls her on the floor, I melt.  When they’re in the bath (which is one of Paige’s favorite things) she annoys Will by kicking and splashing water in his face. And, that’s their version of fighting!  When Will get feeds Paige her pureed food and tells her “Good Job!” as he wipes her mouth with a spoon, I feel like we did something right.  It might not be what I envisioned but it’s still pretty amazing.

The plus sides to our new normal are that Paige is perfectly content to hang out anywhere.  She’s good in her car seat, a stroller, my Ergo 360, a feeding chair, or on the floor… I mean it when I say ANYWHERE!  I only really have one toddler to chase around.  I still feel like I can truly give all of my attention to both at the same time.  (I know that doesn’t seem like it makes sense, but I don’t feel like I’m stretched too thin.  Um, most of the time!) I can strap Paige in her carrier and chase Will at the park.  I can do therapy with Paige and talk about shapes and numbers with Will.  Since Paige only complains when she’s hungry, I only really have one whiny kid at a time.  Since Paige is super easygoing I don’t get stressed out if she doesn’t nap like I do with Will.  At doctor’s appointments I only have to entertain one child and I don’t have to ration iPad time with two wiggly and impatient children.  We can still go out to eat as a family, travel to visit family, go to a movie, and make day trips.  We can still have fun!  We are doing everything I envisioned we would but it’s just in a different way.  It might need a few more gadgets and extra planning but we’re doing it!  We are doing it!

Another reason that we’ve been on-the-go this summer is because we can.  With Lissencephaly, you just don’t know what will happen from one day to the next.  Right now, she’s doing really well and it’s thrilling to watch everything that she does. However, we do have this little voice in our heads reminding us that one seizure or illness can change this.  One day, she might need more help, more equipment, more medicine, and more care that will make things even more difficult.  Knowing that, in a way, helps us to live more in the moment and more apt to do the things we want because, right now, we can.  You know what though?  That sentiment could go for anybody.

This summer meant a lot to me for many different reasons. It was certainly a lot different than I ever planned but it was still absolutely incredible! One of the very first things Andrew said after we got a Lissencephaly diagnosis what that it will not make our lives any worse, it will just make them different. And that is the truest thing that I’ve ever heard.

Like I said before,  Will is turning 3 and he will be going to preschool and start gymnastics in September.  Between both of those activities, I’m hoping he learns, burns some energy, and has a blast.  This will also be the first time he’s in activity where I’m not in the room. (Okay, maybe the second.  I had jury duty for a week when I was pregnant with Paige and Will had to go to a daycare for a week but I don’t really count that!)  I’m actually really excited for him and hopes that he takes turns, shares, and plays with his friends and listens to his teachers.  He’s a great kid and it’s awesome to see him grow!

As for Miss Paige, she has had a huge burst in development and we couldn’t be more thankful!  Since her birthday, four teeth have popped through, her hair is getting super fuzzy, and her motor skills are.. well.. motoring!  Paige is a thumb sucker and it’s so cute to see.  She plays with her hair to self-soothe and she is starting to reach more and play with toys.  She shook a rattle for 40 seconds and she did it purposefully!  She uses her feet as feelers, which I’m told is a bad habit, but I’m thrilled that she even has a bad habit!  Her physical therapist thinks she’s super close to sitting up but needs more trunk support but we can tell that she’s getting a lot stronger week by week.  Paige now eats 3 full 6 ounce homemade pureed meals a day and she’ll hopefully be drinking whole milk over formula soon.  She can chew bananas, pears, avocados and today she had 20+ baby puffs!  We go for an evaluation at the Children’s Institute at the end of the month to look for possible equipment Paige might need in the future to make all of our lives easier.  She’s pretty freaking amazing for doing all of this but she’d be pretty freaking amazing even if she couldn’t.  She’s a delight and we’re thankful she’s ours.

Paige has another eye appointment at the end of the month to check on a sty she has on her left eye.  Her pediatrician thinks she might need a simple surgery on her tear ducts but we won’t know until we see how the antibiotic works on it.  I’ll keep you posted and Happy End-of-Summer!

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The Future, Feelings, and New Friends.

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I’ve had a slew of emotional days this past week.  It’s been a constant battle of “what ifs”, worrying about the future, and trying to appreciate today.  Lately, I’ve just had this feeling that our lives have turned into a ticking time bomb and perhaps this is going to be as good as it gets.  Let’s face it, Lissencephaly sucks.  It’s not curable and it never really “gets better”.  In fact, it might get better for a while but eventually it will get worse.  At least, that’s what all the literature and personal stories I’ve heard from other families say.  Maybe not in those words, but you know that’s what they are saying.  I’ve been thinking a lot about the future and that is not a good place for my mind to wander…

When will seizures start?  What equipment are we going to need to make our lives easier?  When should we move into a new house?  Will I have to miss out on Will’s activities in the future?  Is he going to feel slighted?  Will he be resentful?  Will we ever get to go on vacations?  Are we going to be able to make enough memories for him?

 

…and these questions are just the tip of the iceberg.

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I haven’t talked a whole lot about, my two year old son, Will, a lot in this blog but I worry about how this will affect him constantly.  Luckily, this is all he ever really knows!  He probably doesn’t remember life before Paige and to him this is just his life… his childhood!  I was talking to Andrew today on his lunch break and voicing some of my concerns (he hears new ones, daily).  Today, I told him I was worried about making memories with Will.  I don’t want him to look back when he’s older and remember us being stressed or crying.  While we are going to be very honest with him about the realness of everything, I don’t want this to be his definition of our family.  Actually, I don’t want this to define our family at all!  Sure, he has a sister with disabilities, but he’ll know that she’s more than that.  She’s an undeniable, ultimate being of joy and she loves her big brother more than anything.  One day, he might see his sister have a seizure and other various health problems.  I hope it helps mold him into being a more compassionate, mindful, and helpful person.  Being different, to him, will just be normal.  For being two-and-a-half years old, he’s already very intuitive of other’s feelings and especially his sister’s.  When Paige cries, he runs and gets a pacifier.  If that doesn’t work, he strokes her head and says, “It’s ok, Sissy” and gives her the biggest kiss.  He’s tried to feed her bottles when he can tell she’s hungry and he washes her hair in the bath tub.  I can already see the love he has.  I know that one day, he’ll ask questions and I’m still trying to think about what I’m going to say to him.  Andrew is much better with words and explanations so that’s a conversation we’ll have when it’s time.  I make it a daily goal to show Will how I feel about him, make a memory or two, and give him extra hugs, kisses, and time.  He is one loved little boy!

Another saving grace is knowing that we’re not alone.  Along with our wonderful families and friends that have offered their love, support, and time, we got the privilege to meet four other families in the Pittsburgh area who have children of varying ages (7 months to 18 years!!) with Lissencephaly.  This past Sunday, all of us met in a back room at a Panera Bread and talked, advised, exchanged stories, ate, laughed, and cried (ok, I was probably  the only one who cried) and every family was different and inspiring.  Most of all, they were all GOOD people with absolutely wonderful outlooks on life and family!  I got a lot of useful information and pep talks from the two veteran moms (I will always have bad days, they won’t go away, but things WILL get better and brighter) and compared notes with the other two newbie moms.  I already knew one of the other mom’s and we’ve gotten to be really good friends so it was awesome to see her again!  There were also other men there which was good for Andrew to have people to talk to, as well. It was sooo nice to talk to people who understand what we are going through and didn’t look at us like we were a wounded animals.  Yay, for new friends!

 

No emotion lasts forever and happier days are always ahead.

 

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

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!