liss

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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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!

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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!

Family Updates (sorry to leave you hanging!)

It’s been a while since I’ve posted and in my last post we were preparing for Paige’s 24 hour EEG and I apologize to have left everyone hanging with the results.

Long story short, there were no changes from her last EEG.  That’s good news!  BUT, after this one, her neurologists recommended putting her on anti-seizure medication.  While no seizures were present, Paige’s EEG showed to have a lot of “seizure like tendencies”.  After talking about the option with Andrew, we initially decided to hold off on the medicine because she wasn’t actually having them.

We’ve noticed some questionable movements from her like squinting her eyes, stiffening her muscles, and holding her breath.  We kept a close eye on them and sent videos to her neurologist asking his advice.  Her neuro called back and told me the movements we were seeing didn’t look convincing to him and he supported our decision to hold off on medication.

A few days later, however, her Occupational Therapist was working with her and noticed the clenching of the fists, holding of breath, squinting, and hunching over all at once.  Before, they were here and there and were very quick.  This time, her activity lasted a half an hour and they were hard to stop.  Paige’s OT was concerned and agreed it definitely looked like something.  We cut the session short and I decided it was time to go to the hospital.  Luckily, Andrew was on his way home  from work and I was able to take her straight to Children’s.

When we got there, Paige’s activity was still present and the neuros on call requested a 1 hour EEG.  While they were asking me questions and getting ready to start, Paige started clenching, held her breath, and definitely stiffened up.  Of course, while I hate to see this, I was relieved the neuros saw it in person.  Right then and there, we decided it couldn’t hurt to start the medicine.  Her doctors agreed she was stable enough to go home and we left with a prescription for Keppra.  The medication works on a number of seizures and has very little side effects so I was happy about that.

Paige’s regular neurologist called back a week later and said that he read over both of her recent EEGs and told me that no seizures showed up and she was NOT having them.  Again, GREAT NEWS, but it still didn’t explain her questionable movements.

Funny thing is, the medicine seems to be working in different ways!  Her “seizure like activity” has definitely lessened and she seems to be more cognizant.  When she’s mad, she’s M.A.D!  When she’s happy she laughs more.  A wider range of emotion is present and we’ve started to notice more communication from her.

Before we do anything with her, we talk to her about it and ask her questions.  Often, we know exactly how she feels about it.  She loves her bath and when we ask if she wants one, she gets noticeably excited.  When we ask her if she’s hungry she grunts and we know that means ‘yes’.  When she SEES her stander she SCREAMS!  We know she hates that.  Paige obviously gets excited over bath, food, car rides, shopping trips, and when Dora the Explorer comes on.  She does NOT like her stander, toys with loud bells and whistles, and getting her diaper changed.

This may be a pretty big goal, but I’m going to try to ‘potty train’ her soon.  I know that she’ll always be in a diaper, but I’m going to start to sit her on the potty to get her used to the feeling.  Maybe some day she’ll learn to hold it or wait till she gets the potty cue to actually go in it.  Paige constantly shows us she’s more capable of doing things we didn’t think are possible  so it’s worth a try.

Paige’s big bro, Will, is also doing well.  He got completely spoiled over Christmas and is still loving his toys.  He loves school and playing with his buds.  He’s super creative and has a wonderful imagination!  Paw Patrol and Ninja Turtles reign supreme in our house and he loves to play X-Box (using a fake controller) with his daddy.  He’s also very excited about taking ice skating lessons in March!

Next month, Andrew and I will be celebrating our 8 year ‘dating anniversary’ on a Gateway Clipper dinner cruise and will thoroughly enjoy our date night!

Dad, again!

Before another post from my husband, I want to take the time to make a bit of a retraction about a statement I made in one of my very first posts.  I’ve been meaning to do this for a while but I got the perfect opportunity to do so when Andrew emailed me this blog post.  After weeks of sadness and extreme darkness and grief, we had a few moments of light where we laughed.  We enjoyed the day, we smiled, we functioned.  Almost like we did before we got a diagnosis.  I was on a high and felt ‘good’ for the first time in a long time.  In that post, I believe I used the word ‘promise’.  I ‘promised’ that life would go on and some sort of acceptance and a new normalcy would occur.  I was wrong to do that.  As much as I would like to think that happens, it’s not my place to even say that.  Not one experience is the same and there’s no one who can tell you how you’ll feel or even how TO feel,  for that matter.  I think I already knew that, even at that time, but I wanted desperately to feel ‘normal’ again.  What I want for this blog is to share our experience and our journey but also shed some hope, if any, can be found.  We’re less than a year into this journey but we feel the need to document it all and the beginning was a whirlwind.  One day, I hope to look back and reflect on how far we’ve come but the truth is, I really don’t know.  These experiences are our ‘here and now’ and we can only continue to take things day-by-day and stay as optimistic and hopeful as we can in the process.

-Steph

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One of the primary reasons we started this blog in the first place was to provide hope to a family out there who just received a lissencephaly diagnosis for their child. The day that we learned about the severity of my daughter’s condition was the most gut wrenching day of my life, and if we can help somebody else navigate their way through such a day, and subsequent days, then we want to make that happen. When we got this news at the end of last December, I couldn’t eat for days. I felt like there were two twenty pound weights strapped to my shoulders when I tried to roll out of bed in the morning. I don’t think that any words I could use would describe the feeling I had back then, but it was basically like living in a movie – a really, really long and depressing movie. I’m lucky that my boss / employer were very understanding of the situation and gave me some time off, as I could barely bring myself to get out of the house, let alone focus at work. Steph and I felt like we were on an island. The two doctors in my family, AND our pediatrician had never even heard of this syndrome before, which tells you how rare this diagnosis truly is. The internet provided nothing but more painful news. Everybody was as “there” for us as they could have possibly been, but there’s nothing anybody can do or say to make you feel any better. I obviously very much appreciated all of the support we received from family and friends, but my point is that you cannot possibly understand what Steph and I went through, unless you’ve been through something similar yourself.

We had so many dreams. Steph always talked about singing and dancing around the house with her little girl. I envisioned dropping her off at college one day (I, of course, assumed she would go to Pitt) and lecturing her about what pigs men are until they’re about 25 years old. We talked about all kinds of family vacations and activities that we wanted to partake in, and pictured a world where Paige and Will would always be playing, running, and throwing blocks at each other. And all it took was one hour at a doctor’s appointment to feel like lissencephaly had robbed us of all of this.

If you take nothing else away from this post, or this blog in general, just hold on to this one thing: having a child with a lissencephaly diagnosis doesn’t mean that your dreams will be crushed or eliminated. You may have to “tweak” or “adjust” your dreams a bit, but this absolutely will not make them any worse. It’s going to take time – probably more time than anybody would like – but, I can say from our experience (and that of many others we’ve met on this journey) that we’ve gotten to a point where we accept this and the things that happen as a result of lissencephaly, and it’s just becoming a part of our normal daily routine. And we realize that all of the things we were worried about “losing” aren’t really lost after all. Let me put it this way – just because we might have to take our kid to Sesame Street Live in a wheelchair will not take anything away from that wonderful memory with our children.  We feel there is light at the end of the tunnel, even when we feel like we’re at our worst in coping with this situation.

I’m not trying to sit here and act like I’m the world-renowned expert on dealing with a liss child. We only got this news 8 months ago. But I feel like enough time has passed that my perspective on this situation is relevant. And I want to state, for the record, that my family and I are in as good of a place as we can possibly be with this. I’m also not trying to fool anyone here – there are going to be days that suck. Our daughter has responded to this condition as well as she possibly could have to this point, but we still have days that suck. But let me assure you of one thing – you will have many more good days than bad. Your child is not defined by lissencephaly or his/her “shortcomings,” and there will be plenty of opportunities to make wonderful memories with your son or daughter. As I mentioned in an earlier post, if you spend all of your time worrying about negative things that lissencephaly can lead to, then you’ll miss out on a world of opportunities to make lasting memories with your family.

Having a Liss child will help you to appreciate the “little things” more and really put life in perspective for you.  At least, it has for us.  When I hear about “problems” that other parents are experiencing with their children, I just have to chuckle, because they don’t know what real problems are. Please understand, however, that I am not resentful towards them – I understand that, in their world, these things that are downright petty to me seem like a big deal to them. That’s the world they live in, and that’s perfectly fine. To be honest, having gone through what we have, I am happy for these families that have perfectly healthy children to worry about, and that’s the truth. But when you’re told your child is likely to experience massive seizures that will eventually lead to her death, color coordinating outfits for a family photo shoot suddenly becomes irrelevant nonsense. Again, there is no resentment here – I just have a different perspective on things than most parents would, and would like to think it’s made me a better person/father/husband.

Even though our child may not be able to do a lot of the things we envisioned when Paige was born, we find a way to replace these things we’ve dreamed of with equally good moments and memories. For instance: our son Will loves to play basketball in the hall with me. We always pull Paige over in her little tumbleform chair so she can play along with us. Will always makes sure to “pass” her the ball a few times, and she enjoys watching us take turns running up and down the hall shooting airballs. So, while she may not be able to physically shoot the basketball, she is a part of it. She’s there, she’s present, she’s included, and it makes her happy. And as a parent, there is nothing more you can wish for from your child than happiness, and I already have wonderful memories of our family basketball nights.

When you are constantly reminded of what your child cannot do, it makes you that much prouder when they achieve something that every doctor in the world told you she wouldn’t be able to do. At 14 months, most parents are trying to child proof their house and keep their kid from destroying very expensive electronic equipment (as was our experience with Will). For Paige, the fact that she is gripping on to and shaking a rattle is a monumental achievement for her, and I couldn’t possibly be any prouder. I am as proud of Paige for being able to use a rattle and eat solid foods as a “normal” parent would be of their child achieving a 4.4 GPA and getting into Harvard. The point of this post, and this blog in general, is that there is hope. Appreciate your child for who he or she is, and their so-called “shortcomings” will not even be relevant. And their achievements, against all odds, will make you prouder as a parent than you ever dreamed you could be.

My daughter is wonderful, she’s an angel, she’s a warrior. And most importantly, she’s my daughter.

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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We Have a One Year Old!

 

How fast does a year go?! I’m way late on this post but better late than never!

June 7th was a pretty big day for Little Miss Paige Marie! Not only did it mark her first year birthday but it was also the day of her Baptism! Family members and friends from all over came to celebrate with us and it was such a memorable and special day. It was a CELEBRATION in every sense of the word and it’s a day that we’ll always remember and hold onto.

If you’re a regular reader, in Another Post from Daddy   and Year in Review, you got a sense of our own reflection, experience, and feelings of the last year from Andrew and my perspective.  These posts are from before her birthday and aren’t exactly rosy and they honestly portray how we were feeling at that current time.  Our reflections showed our grief, bittersweet thoughts, and heavy hearts.  It also showed our appreciation and the abundant love we have for our family. It’s clear that although we both process Paige’s diagnosis differently, one BIG thing is certain – together, as a family, we will always focus on hope, love, and progress and we will always CELEBRATE our children and lives together.

Luckily, the only feeling we felt on this day was complete joy!  The day started with her Baptism at noon.  I arranged with my church to have a guest priest to preform the ceremony.  Father Paul has been in contact with me since we found out about Paige’s diagnosis and has been a great support system for me.  I was honored that he agreed to do the Baptism and made the whole event that much more special and personal.  I am an avid crocheter and I made Paige’s dress and I couldn’t be happier with this first-generation heirloom!

After the Baptism, family and friends convened our favorite local restaurant for a barbecue.  I didn’t mention this, but Paige wasn’t feeling so hot and was up all the previous night with a fever.  Right after lunch and an outfit change, she got sick in her high chair right before cake.  After a short barroom bath in the sink and a shot of Tylenol,she was good to go with the rest of her party.  Will had the time of his life because all of his closest buddies and playmates were there and they happily played with their gift bags.

It’s always nice to get all of our family together and we’re so excited everyone took time to come and celebrate with us.  Those who couldn’t make it also made her birthday special with cards, Facebook messages, calls, and texts.  Andrew and I can’t thank everyone enough.  We know that Paige means so much to so many people and from the bottom of our hearts, we thank you for keeping Paige and our family in your thoughts and prayers this past year.  We look forward to giving you more updates and we toast to this year being a good one with, you guessed it, progress and celebration!

 

 

Pictures are very random!  I’ll edit these later!

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Potty Training – Number 2

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I mean, PART 2!  We’re still working on “Number 2”…

My last post chronicled the start of our Potty Training adventure and every day it’s getting better!  In fact, not even a minute after I hit Publish Will informed me he NEEDS TO GO POTTY and that’s exactly what he did!  Progress.. Ahhhhh!

When we’re at home, he’s not in a diaper.  There have been some accidents here and there and tears were shed when the Mickey Mouse undies were peed on but overall we’re chugging along.  It’s pretty amazing to see Will’s development and growth in only a couple of days.  I think, as parents, we often underestimate our children’s abilities for many reasons.  A big on for us is accepting the fact that our little boy is growing up!  I mean, he’s not even three years old yet but it really feels like he was just born sometimes.  I also think I am a little overreactive and celebrate the littlest things about milestones because Paige has taught me to do that.  This Blog has mostly followed her adventures with Lissencephaly but also has documented the lessons and the shift of our thoughts on LIFE as a result of the diagnosis.

Did I ever think I would blog about Potty Training?  Heck, no!  But it’s a nice break from hospital stays and setbacks.  It may be a skill everybody learns and it may not be a big deal, but it also represents growth, development, and another thing we can CELEBRATE!  We’ve certainly learned to do that a lot more around here!

Birthday/Baptism post is almost finished.. coming soon!

Another Post from Daddy

Having been an avid sports fan for as long as I can remember, I’ve always paid very close attention to statistics (the sports kind only, not the scholastic kind). Moneyball is my bible. Professional baseball organizations who don’t use statistical research to assemble their teams drive me insane. I can quote you random football player’s statistics from 10 years ago. The point is, I’ve always paid very close attention to numbers when it comes to sports.

Never in my wildest dreams did I think I’d need to be concerned with numbers when it came to my children. That all changed with Paige’s lissencephaly diagnosis. There’s one number, almost 6 months later, than I’m still having trouble accepting:

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This represents the odds of a child being born with Lissencephaly.

We won the wrong lottery.

Lissencephaly occurs in 11.7 per one million births in the United States, according to The Cortical Foundation. In other words, 1 in every 85,470 children are born with this disorder. As Steph mentioned in an earlier entry, there was nothing that could or could not have been done to prevent Paige’s condition. We recently found out the genetic mutation that caused her condition was NOT due to a trait that Steph or I carried. This is obviously good news for our future family planning purposes, as the odds of having a second child with liss, when the parents don’t carry the traits that cause it, shoot up to 1 in several million. But none of this helps Paige, and I continue to struggle with the fact that we defied the odds in such a catastrophically negative way.

It goes without saying that our disappointment/resentment rests with lissencephaly, and not our wonderful daughter. Paige is an angel. There’s nothing in the world that makes me happier than seeing her smile. She’s made a lot of progress with her therapy, is almost able to roll over on her own and is starting to reach for things. That might not sound like much to parents of a healthy child, but for us, it’s borderline earth-shattering. Remember, 6 months ago we were told to expect her to basically be a vegetable for the rest of her life. So the fact that she’s made as much progress as she has (in such a short period of time) means the world to Steph and I. We (in conjunction with our doctors and the truly wonderful folks with Pennsylvania’s early intervention program) continue to provide her with the best care, treatment and therapy available, and we’re fortunate to not have had any major setbacks at this point. Most importantly, and I can see it in her eyes, I know, that she knows, she’s loved.

As Paige’s first birthday nears, Steph and I have spent a lot of time reflecting. Reflecting on how our lives are now drastically different than we pictured when we got married four years ago, or even when we were expecting Paige at this time last year. Reflecting on all the good memories we’ve made as a family, as well as the not so good ones (like being holed up in a hospital for a week in January). What I think about, and am the most thankful for, however, is the way our families and friends have rallied around us to support Steph, Will and I in whatever fashion possible. My brother and sister have both spent hours keeping an eye on Will while Steph and/or myself had to be at the hospital with Paige. Steph’s family, although 3 hours away, has traveled out to Pittsburgh at the drop of a hat, with no questions asked, when we’ve been in need of assistance. (I know how important Steph’s family is to her, and I am thankful that they’re able to be as involved as they are despite the distance between us). My parents have spent many Saturday nights watching our kids, just so Steph and I could get out of the house. We’ve also received cards and donations from people we’ve never met in our lives. I admittedly have a somewhat jaded view of the world as a result of everything we’ve been through, but the multitude of kind gestures and notes we’ve received from folks near and far has restored my faith in humanity a bit.

We’ve met several families in the area who have a child with the same condition as Paige, and have basically formed our own support group. We’ve shared advice and positive memories, as well as stories of setbacks, heartbreaks, and obstacles that everyone has encountered. Based on everything I’ve heard from families who have a child with this condition, we are fortunate that Paige is doing as well as she is. Many children with liss need to have a permanent feeding tube inserted into their throat or stomach, as they have trouble swallowing. Paige eats like a cow, with no issues, and is gradually taking on more and more solid food. Aside from the infantile spasms she experienced a few months back, she hasn’t had any relapses with seizure-related activity. She has made chartable progress with all three forms of her therapy – physical, occupational and visual, and is very conscious about what’s going on around her.

We are realistic, however, and understand this could all change in a heartbeat. The toughest thing to come to grips with is the fact that there is literally no positive outcomes to this situation, as far as her long term health is concerned. Lissencephaly isn’t a disease, like cancer, that has a chance to be cured. When you google lissencephaly, you’ll see phrases like “no treatment,” “incurable,” “severe mental retardation,” “shortened life expectancy,” and “increasing seizure activity to the point of death.” If there is one thing I’d tell the parents of a newly diagnosed lissencephaly child, it would be to stay off the internet. Because you won’t find a shred of good news. I’m not saying you need to kid yourself about the realty of caring for a liss child, but if you spend all day scouring the internet looking for bad news, you’ll miss out on the opportunities for good times you have with your child. And as Steph and I have found, those good times are aplenty – regardless of what your child is or is not able to do. As we’ve said a hundred times, Steph and I are focused on the things we can do to help Paige, and all the joy she brings us. We are not, and never will be, concerned with her “shortcomings” that nobody has any control over.

In addition to the families we’ve met locally dealing with the same struggle, Steph is part of a large online network for parents of children with brain malformations. We all have a connection, because there are very few people on the face of the planet who know what it feels like to experience the pain we have. Steph has told me dozens of stories about liss children who have suffered major setbacks, or even passed on. It absolutely crushes me every time I hear one of these stories, whether or not we’ve actually met the family involved. And selfishly, part of that crushing feeling overtaking me is knowing that we’re likely to deal with the same setbacks someday, probably sooner rather than later. I’ve been able to keep it together, for the most part, throughout this ordeal, but I broke down sobbing a few weeks ago on the way home from work. Steph was telling me about a liss child who had been otherwise healthy, but suffered a massive seizure out of nowhere and passed away. This child’s family, despite what had to be unfathomable grief, managed to find some of the nicest ways to honor their daughter that I had ever heard of. There are certain days when the magnitude of our situation smacks me right in the face, and that happened to be one of those days. Because we know, with near 100% certainty, that we will someday feel the same grief as that little girl’s family.

I don’t like, or rely on, statistics as much as I used to.

Year in Review

It’s hard to believe that, in 5 days, Paige will be one year old!  The past few weeks I’ve spent a lot of time reflecting, rejoicing, preparing, and even grieving.  Reflecting on what we’ve been through and how far we’ve come.  Rejoicing that she’s here, happy, and as of right now, healthy.  Preparing for her Baptism and Birthday party (as well as special needs equipment we’ll need for the year to come.)  And finally, grieving the visions and experience I should be having with Paige.  Visions of mothering a daughter that Lissencephaly took away from me.

I had a little bit of a meltdown during one of Paige’s recent Occupational Therapy sessions.  Paige reached for a toy, held it, and put it to her mouth.  This is a pretty big thing and a HUGE milestone for her.  I was elated and gave her a hug and celebrated like I would for any other childhood milestone.  And then I cried.  A lot.  Like, an embarrassing, ugly cry in front of the Therapist.

It wasn’t supposed to be like this.  This is the time where she should be taking her first steps.  She should be playing in my cupboards like Will did.  I should be pulling my hair out chasing two toddlers around the house.  I could name a million more coulda, shoulda, wouldas but you get the picture.  Bottom line, I’m grieving all of the things I can’t do with my daughter that I started picturing the second the Ultrasound Technician told us we were having a girl.  It’s hard and it sucks.

After my mini-celebration-turned-sobfest I picked up my Sweet P and felt something completely different.  A whooole lot of guilt.  Through my puffy eyes I saw that she was HAPPY!  People ask me all of the time how she is doing and I always say that she is absolutely the best baby ever.  She’s constantly smiling, eats like a champ, and sleeps pretty consistently through the night.  All things considered, and especially with this diagnosis, she’s doing amazing.  She’s here with me and I get to hold her.  I felt guilty because I never want her to think I’m sad because of her, because it’s NOT her!  She is wonderful and is such a light in our lives.  Every good thing she does will alway and forever far outweigh the bad and will forever be our Angel on Earth.  Andrew and I have always said that we don’t care weather she runs a marathon or never takes a step but the sad reality is, there is an ache that will never go away.  Again, to be clear, it has nothing to do with Paige and everything to do with Lissencephaly.  There are still days where I ask myself “Why? How?!” and others where I feel like acceptance is on the horizon.  The truth is, these emotions will probably reoccur throughout all stages of life.  Like preschool, Kindergarten, proms, graduation, weddings – you name it!  There will always be something to think about.

Thankfully, I have a close group of family and friends to help us navigate these seasons of life and we will find a new normal over and over again.  I really try to face negativity head on and refuse to have animosity in my heart – I even try not to hate Lissencephaly, believe it or not!  Looking for the good is not always easy but I’ve found that the world doesn’t stop for your grief and much prefer looking for hope and happiness over laying on the couch all day.  I’ve learned that sadness will happen but I have people around me to help pick me up and KEEP GOING!

Paige’s birthday this year might not be what I imagined, but it will be amazing. We are having her Baptism on her birthday this Saturday and it will be followed by a catered party at a local restaurant with family and friends. I still got to fulfill some of my mother/daughter dreams in the process, too! I crocheted her Baptism dress and ordered her a cupcake party dress and got her the girliest, cutest, and a-little-on-the-obnoxious-side headband to match! Like we always have, we will celebrate her here and now and for EXACTLY the person she is! We love her to bits an that will never, ever change!

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It’s been a while!

It’s been a few weeks since my last post and I thought it was time to catch up.  Since the weather has gotten nicer we’ve been spending a lot of time outdoors and on-the-go!  Thankfully, nothing has changed about Paige’s health and she is growing big and getting stronger.  One of the reasons I’ve been so busy is because I’ve been planning her FIRST birthday party and Baptism!  Her birthday falls on a Saturday so I thought it would be special to have them on the same day!

I truly can’t believe she’s going to be a whole year old. Unlike Will’s first year, I can’t say this year has exactly flown by but we still have a lot to look back to reflect. More importantly, we have a lot to be THANKFUL for. I’ll save my recap of Year AP (After Paige) for another post but even through the highest highs and lowest lows, Paige has always been an absolute delight and we love her so much!

I’ve said this in previous posts, but we’ve been really focusing on each present moment and have been making memories.  We’ve been all over!  Phipps Conservatory, the Pittsburgh Zoo, the mall play area, play dates, parks, sporting events, lots of shopping trips, and grandparent visits.  I have found that the nice weather and keeping busy has really kept our spirits up and I’ve grown to really appreciate the downtime.  Instead of using my time to dwell and worry, I am actually enjoying the days where we can explore and the evenings I get to spend on the couch with my babies!  On our many ventures, I’ve also noticed how much Will is maturing and it is really wonderful to see.  He’s talking so much more, using his manners, and not testing boundaries as much.  It’s pretty much the cutest thing when he says, “Sank you, Mommy!” when I strap him in his car seat after a fun outing.

I’ve also noticed that Paige has grown very looong in the past few months and my arms are getting pretty buff from carrying her.  Since we usually go to kid-friendly places, I usually spend my time chasing Will around and Paige is usually in my arms or in her stroller.  I don’t really love keeping her in her stroller when we’re out because I feel like she’s missing the fun and it’s important for me that she’s a part of the group.  Actually, it’s pretty important to her too because she will cry if she’s aways from Will and the other kids now.

Now that Paige is getting older, I’ve been researching some resources and equipment that might make our lives easier.  I typically scour Pinterest and ask online support groups for recommendations and I’ve decided that Babywearing is a great option for us.  For those of you who don’t know what it is, it really is exactly how it sounds.  It’s simply using a carrier that you strap on you to help carry your child.  Although I didn’t exactly choose Babywearing as a lifestyle, it has been beneficial and extremely practical in the short time we’ve been doing it.  I did a ton of research and chose to use the Ergobaby 360 because I can ‘wear’ Paige four different ways:  Forward facing me, forward facing away from me, on the hip, and on my back.  It’s ergonomically designed to distribute the child’s weight and it is incredibly comfortable for me and Paige!  We have been loving it!

My reasons for Babywearing:

1:  I don’t want Paige to SIT all of the time.  If there is one thing that having a profoundly disabled child has taught me it’s to get off of my butt and do something because I can!  When my daughter was given a Lissencephaly diagnosis she was also given a laundry list of limitations and things we can expect her not to do.  If I can help her do anything other than lay down or sit, I sure as heck am going to do it!

2.  So she can see the world.  Since her brain is structurally impaired (her brain is smooth) we’re not exactly sure what she can see.  We know she can see but, to what extent, we don’t know.  If you smile at Paige she’ll smile right back so we know she recognizes faces. If she can recognize faces, she’s obviously is aware of her surrounding and I want her to be able to be included in those surroundings, just like her brother.

3.  Placiocephaly aka “Flat Head”.  Sitting and laying in her car seat, rocker, and crib can cause her to have this after time and it will require a helmet to correct.  With everything else that she has going on, I’d rather not have to deal with this if I can prevent it.

4.  Practicality.  Free hands, people!  I don’t have to lug her in the car seat any more and, like I said, she’s getting big so those days are numbered anyway.  When Paige is in the Ergo, I am able to have a free shopping cart again and she can interact with Will who is in the seat.  I also don’t have to worry about dragging a stroller all of the time.  I can take escalators and walk the stairs.  These are things that people take for granted.  Let’s be honest, one day Paige will probably need a wheelchair and I want to take full advantage of my “equipment-free” life while I have it!

5.  Snuggles!  Obviously, the sweetest and my most favorite reason for babywearing.  I like having her close and she likes it, too!  I also like to kiss the top of her fuzzy head when she’s in it and she especially likes to grip my fingers as I bounce her.  It’s really, really adorable!

The past few days have been holed up indoors with a sick toddler.  I think we’re finally seeing a light at the end of the tunnel but I’m really hoping, wishing, and praying Paige doesn’t get it.  Sick children are the pits!  But now, it’s picture time!

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Getting strong in the Bumbo!  This thing always made me a little sad because she always toppled out of it but lately she’s been sitting wonderfully in it and is getting stronger, every day!

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Easter with the kiddos!

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IMG_0174IMG_0211   The Pittsburgh Zoo and Phipps ConservatoryIMG_0136 IMG_0144

Park and Shopping!