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!

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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!

November Thanks

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It’s November and social media is abuzz with daily thankful posts to commemorate the Thanksgiving season.  Many people find these posts annoying, as we should be thankful year round, but I happen to love the posts.  I love the positivity and insight on my friend’s lives and it’s a nice break from political memes and Huffington Post articles.  While, it’s true, often times these posts are predictable and trite (Day 1:  I’m thankful for my mom and dad because … Day 2:  I’m thankful for my husband because… Day 3:  I’m thankful for my job, house, Diet Coke, friends, whatever else) it’s nice to reflect on the gifts and blessings you have.  Now that I’m 29 and far from my college days, my feed is filled more with weddings and babies than parties and apartment lounging — ahhh I miss those days!  

With that goes this one thankful post I probably see the most:

Day XX:  I’m thankful for my healthy children.

Before last year I would have never thought twice about this one.  I probably would have posted, if I did the 30 Days of Thanks, something very similar myself.  However, this year it stings.  When I see it I literally wince (and yes, I’m using the word ‘literally’ correctly.  I can upload a video if you need proof) and I get a little sad.  The word ‘healthy’ just rings in my ear and it’s hard to shake.  Until today.

Today, I came across one of these posts while I was eating lunch with my kids at the table.  Before I got to feel my heart sink, Paige kicked her feeding chair and gave me THE. BIGGEST. GRIN.  In that moment, I realized that I’m thankful for my unhealthy child.  I am thankful that she’s HERE.

My child that has a brain malformation that she did not ask for.  My child that will struggle for every “inchstone” she reaches.  Our family will have to carry her and tend to her needs the rest of her life.  Statistically, my child isn’t supposed to survive childhood.  While she’s not currently “sick” she is considered “terminal” and that’s a lot of weight on the heart already.  My child might not be considered “healthy” but she’s here.

She’s here.

SHE’S HERE!

If I were to write a thankful post for my children it would be this:

Day Every:  I am thankful I get to hold you both physically and in my heart.  I am thankful that I get to be your mother and carry you in any way you need me.  I’m thankful that you are with me and are exactly the person you are.  I am thankful for the things you can do and also the things you can not do.  I am thankful that you are here.

From here on out there will be no more literal wincing or sunken hearts.  I am thankful for both of my children, healthy or unhealthy.  And given the chance, I’d do it over again and again and again and I’ll always be thankful that they’re in my world.


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!

It’s been a while! Navigating my way through parenting.

I haven’t updated in close to a month and that’s really far too long.  Quite a bit has happened and we’ve had some new and exciting beginnings!

First, on August 30th our Will turned THREE!  It’s taking me a while to actually believe he is now a preschooler but he is and he couldn’t be more excited about it.  Having a late August birthday makes starting activities and school a little trickier because he will either be one of the very youngest or one of the very oldest.  After weighing the pros and cons of both we decided to place him in the 2-3 year preschool program at a little church down the street.  It is a one day a week class and Will absolutely loves it!  He’s in a classroom with 3 of his friends and he is one of the oldest in the class.  A regular morning (which is 2.5 hours) consists of play time, story time, guided areas, songs, and snack time.  When school is over, the parents meet the kids at the door and I’m always greeted with a smiling Will who proudly hands me his “to-go” folder with art.  When we go home the art is promptly tacked up on our sliding door for all to see.  He’s officially a big kid now!

His next big activity is a gymnastics class.  Will is one of the youngest kids in this class but he loves it!  The class is great because they work with what three year olds love like running, jumping, dancing, somersaulting, and more.  It’s also a pretty structured class and the teacher is sure to keep them on task.  There are a lot of multiple directives, stations, and steps that help the kids focus while playing at the same time.  I’m pretty impressed with the program but more impressed with the teachers that can wrangle a group of small children for close to a whole hour!

My goals for Will in preschool and gymnastics are to learn to play in groups, take direction from adults other than Andrew or I, and learn and grow in his own way AWAY from me.  Most importantly though, I want him to have fun!  If I were being honest, and I am, I have to say that I’ve had a little bit of a hard time letting go of the reigns.  He’s only really ever been with me during the day.  I was the one to be responsible for his schedule and social life and now I’m not the one to do it all of the time.  It’s a hard thing to just hand your kid over to someone you don’t know and not know what’s going on.  I often wonder if he’s behaving himself?  Do his teachers see what a great kid he is like I do?  Am I missing any developmental red flags that they’ll blindside me with?  Is he on track?  Am I being overbearing? Is he having FUN?!

It’s funny, if I was not a parent of a profoundly disabled child, I’m not sure so many anxieties would run through my mind.  With Paige, we knew something was off in her early months but the actual diagnosis felt like we were hit by a bus that we didn’t see coming.  I guess a lot of my fears with Will going to school and the vulnerabilities of other people “analyzing” my child kick my senses into overdrive and I fear the worst.  A fear that I’m going to be told something is wrong with my typical child.  I honestly never thought about how Paige’s Lissencephaly diagnosis might affect how I parent my other child and I’m learning that parenting the two have to be completely different.  Because THEY are completely different.

Someone put to me like this.  As a mother, I have a toolbox I use for my children.  When Paige was developmentally delayed and we tried to reach for answers, I had to use a hammer to get them.  My hammer was nagging doctors, doing personal research, and basically demanding an answer as to why Paige wasn’t acting like a typical baby her age.  We KNEW something was off and we pounded away and got validation in the form of her diagnosis.  I had to use the hammer because she needed me to advocate for her in that way.  In Will’s case, I’m having trouble putting my hammer away.  If I get a school report that he’s not playing with other kids or not sticking to a play area the designated time, my emotions go to CODE RED!  If he doesn’t follow the exact procedure or goes astray, I feel the need to bring out my hammer again.  In my head, I go back to the way I felt with Paige.  I think because something doesn’t go completely “on course” something must be wrong.  In my head, if Will doesn’t do something he’s supposed to, there must be a reason for it and I want validation.

The only difference is… Will doesn’t need me to advocate for him the way Paige needs me to.  What he is doing is perfectly normal for a child his age to do.  He’s developmentally appropriate for a typical three year old and, bottom line, he doesn’t need me to use the hammer.  He needs me in a different way.  He needs me to not expect perfection because nobody is and I’m far from it, myself.  He needs me to trust that his father and I have prepared him for a setting that doesn’t include us.  He needs me to trust that he’ll be fine! Mostly, he needs me to be his support and biggest darn cheerleader in the world.  I know my kid.  I know he’s fun-loving, smart, active, curious, hilarious, affectionate, inquisitive, and an absolute joy.  He’s got the best qualities and I have to let go of my fears that the other shoe is going to drop.  For the past year, we’ve gotten used to and accepted that Paige is on her own path and unlike any other’s.  What I’m now finding is that navigating my typical child’s growth isn’t in the same world.  BUT.. I’m getting there!

I wonder if any other family has felt this way?

In other news, Paige is showing growing leaps and bounds in her own development! She is putting more pressure on her legs, playing with toys in both hands, and even starting to feed herself with a spoon! She’s continually happy and is the most easygoing kid. She’s incredible!

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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Cortical Vision Impairment Diagnosis

Recently, Paige added a new diagnosis to her resume…

*Drum roll please*

CORTICAL VISUAL IMPAIRMENT!!!

Cortical Visual Impairment or CVI as I will call it, from now on, basically means disturbed or reduced vision due to brain abnormalities. According to the large packet of literature I acquired at our appointment, CVI is the fastest growing visual impairment diagnosis today.  Due to the fact that Paige’s brain is almost completely smooth, this diagnosis was kind of a no brainer. (I apologize for the reeeeally bad joke! Not my best work but we like to have fun around here!)

So, what does this diagnosis mean?  Well, a few things!  We know that Paige can see.  She’s responsive, smiles socially, knows her name, and as we can tell, is aware of her surroundings.  Sure, she can see, but we just don’t know how much she can see.  Her vision therapist (who I will talk more about later) explained it to me like looking at a Magic Eye Puzzle.  When you first look at one you see a bunch of jumbled colors and it appears to be blurry.  After fixating on the page for 10, 20, 30, or however many seconds, an image appears.  It makes sense because when you dangle an object in Paige’s range of peripheral vision, it usually takes her a few seconds to turn her head to it.  What we have to do is to train her brain how to see.  

One of the first red flags on Paige’s road to her Lissencephaly diagnosis was her vision.  At her two month appointment, her pediatrician couldn’t get Paige to fixate on the light pen and she sent us to see a pediatric opthemologist.  Her eye exam came back normal but was still lacking appropriate vision for her age.  This sent us to get an MRI done and you know what came of that.  Early Intervention services were immediately called and one of her therapies was Vision.

Let me tell you, Paige’s Vision Therapist is a Godsend!  I don’t use names in this blog but if I did I would shout his from the rooftops!!  Upon the initial visit, he was the first person to give us hope.  From the very beginning he explained what CVI was and how Paige demonstrates all of characteristics.  He told us that doctors don’t know everything and Paige will be the one to tell us what she’s capable of.  Mostly, he talked to us like a friend and I appreciated that.  We see him once a week for an hour at a time and I find this therapy to be the most intriguing.  Since he has been working with her for over 6 months as if she already had a CVI diagnosis, the outcome of our CVI appointment was a pretty good one and I couldn’t be happier about it!

Her appointment was actually an evaluation with CVI Resources at West Penn Hospital in Pittsburgh.  It was conducted by two doctors that are a husband and wife team.  One of the doctors, the one that did most of the evaluation, is a trailblazer in CVI research and actually wrote the criteria for the test and the other was a highly respected pediatrician!  Again, if I could name names (you could probably find them on a Google search), these two would also be shouted from a rooftop!  They were incredibly personable, extraordinarily educated, and they had the most jovial and comforting personalities. The examination took about an hour and was completely non-evasive.  Actually, it was the most entertaining appointment to date!

They tested:

Visual Latency
Visual Field Preference
Difficulties with Visual Complexity
Light Gazing & Purposeful Gaze
Difficulty with Distance Viewing
Atypical Visual Reflexes
Difficulty with Visual Novelty
Absence of Visually Guided Reach

Paige demonstrates all 10 of these visual and behavioral characteristics associated with CVI.    HOWEVER, there is good news here!!  There is a range of vision from 0-10 indicating how much she can see.  0 would be no vision and 10 would be perfect (it’s super rare to have perfect vision).  There is a lot of criteria that goes into this range but as a frame of reference, most children with Lissencephaly  initially range between 0-3 on their first visit and Paige was almost a 5!  That might not seem like much of a jump but it’s actually hugely significant!  It means that through her Vision Therapy, we have been successfully retraining her brain in our goal to appropriate vision.  We will go back in about 6 months to get her reevaluated with hopes of more progress.  I’ll keep you posted!

Let me say, Andrew and I are extremely thankful for all of the services, resources, and opportunities we have to Paige in Pittsburgh and are so humbled by the amount of support we’ve received from all over.  Please know that your prayers, well wishes, and thoughts are all appreciated and we take them very much to heart. Our Paige is one loved little girl!

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!