I'm not even sure what to call this

On Sunday night, Will had a difficult time going to sleep. He cried for a while. Nate went in to lay with him and calm him down. Will really seemed to relax, and soon there was no more crying. We went about our evening washing dishes, taking Otis for a walk, putting away laundry, updating the blog...

After the crying had been done for about 45 minutes, I decided to test my luck and put away Luke and Will's clothes in their room. I tip-toed in and started hanging things up. I looked at Will and noticed that he was breathing rapidly. I took a closer look. His head was sort of over the top of his pillow, so I adjusted him. He was wide awake.

He started to move his tongue rhythmically across the roof of his mouth and teeth. He was unresponsive to my voice. And after about 30 seconds, he vomited. I took him to the bathroom where he got sick again. When he was done, he gave us a huge grin. With the right side of his face. The left side of his face remained emotionless.

It now appears as though Will had a seizure on Sunday night, though no one can tell us for sure right now. Nate took Will to the ER immediately. His facial paralysis went away after a couple of hours. X-rays of his shunt and a head CT revealed nothing wrong with his shunt. They came home very late with an appointment to see a neurologist today.

Will has been absolutely fine since Sunday. We watched him like a hawk last night, but there was no repeat of the event. He went to the neurologist today, who said that with a basic evaluation and description of what had happened, Will either had a seizure or a stroke-like event. We had been hoping that Will's symptoms would reveal that he had Bell's palsy, a temporary facial paralysis which can be brought on by something as mild the common cold. However his facial paralysis would have lasted for weeks or months if it was Bell's... it wouldn't have gone away in hours.

We have an EEG scheduled for mid-July to take a look at the electrical activity in Will's brain. If Will had a seizure, then his EEG will reveal distinctive patterns that will alert the neurologist to the type of seizure that he had. We also have an MRI scheduled for the same time, in the case that the EEG reveals no seizure activity and Will had some other type of brain event.

It is quite common for children with cerebral palsy to have a seizure disorder or epilepsy - around 40%. Of children with cerebral palsy and seizure activity, those with quadriplegic spastic cerebral palsy like Will make up the largest percentage. This correlation is due to the extent of brain damage seen in children with quadriplegic CP. Thankfully if is the type of epilepsy typically seen with children with quadriplegic spastic CP, ensuing seizures do not cause further brain damage.

So now we wait. And we try not to wonder too much... however I think that is going to be impossible. Too many maybes and possibilities. It is possible that this event was Will's first seizure. It is possible that Will has had these types of seizures before and because they typically happen nocturnally, we never knew. It is possible this wasn't a seizure. It is possible that this type of event will never happen again. It is possible that this type of thing will now happen regularly. It is possible that this event and diagnosis don't mean too much, don't change too much. But for now, it's just too soon to know.

Budding photog

Luke is a gadget kid. He loves electronics... the more expensive and off-limits, the better! From a very early age, he wasn't into fake electronics (ie a Fisher Price telephone), he wanted the real deal. I am sure there are many people out there who have been called a couple of times from Nate's or my telephone, only to find no one (silent Luke) on the other end.

He loves cameras, and loves to see the picture that was taken almost immediately afterward. We just couldn't afford to have him playing with our digital camera, so we decided to use some of our Toys R Us gift cards and purchase Luke his own fully functional, indestructible digital camera.

Luke has been taking a lot of pictures over the past couple of months, and I decided to go through them yesterday. After deleting about three-quarters of them off of the camera (solid white or solid black pictures), I downloaded them to our computer. And here are a couple of the best ones. The camera isn't the best digital quality and doesn't have a flash, so you just have to use your imagination and see these as the sheer genius that we do! I've added some captions for your enjoyment.

Self portrait

Matthew, before

Matthew, after

Daddy!

The Next Blair Witch Project

My best friend and favorite playmate, my twin brother Will

Just call me 'your highness'

North Carolina sky... with a tree and a gutter

Milk - they still don't trust me without a top outside of the kitchen

My all time favorite shirt - a gift from my brother Matt to make me like him when he was born

Otis... from his best angle!

My great-grandmother, Nana Jean (who my middle name is in honor of!)

Kitchen still-life (also... Mommy, if you're going to have a glass table, you really need to clean it more often!)

My aunt Kylie (I used the funny face option on my camera for this!)... she's really very pretty!

Shoe

Hey, wait, who hijacked my camera?!?!

Heads up!

At two months old, Matthew is starting to have milestones to reach. One of the important ones this month is learning how to hold up his head. He's doing pretty well at it, though he definitely isn't a fan of tummy time. I don't know any kid that actually likes tummy time when they first start out - Luke and Will certainly didn't. But I think once Matthew realizes that there's a lot of exciting stuff going on at our house, he'll want to pick up his head and take it all in. I think this will also serve as his motivation for mobility!

Other than head control, Matt is also doing more with his hands - opening, closing, and sometimes he even brings them together in front of his chest and taps them together like a baby Dr. Evil from Austin Powers. Now if only he had a sinister laugh to go along with it...

Matt is tracking things very well with his eyes and seems to comprehend some things about his world. He knows when you're leaving the room (he lets out a cry to complain), when we're getting ready to feed him (the bird mouth starts to move), and when you're smiling at him (he smiles back).

He had his two month pediatrician appointment earlier this week. He weighed 13lb 11.5oz (95th percentile) and was 24.5" long (90th percentile). He's definitely a big kid... but hey, he's proportionate! He's already in his 3-6 month clothes, and will be graduating to size 2 diapers just as soon as this box of 1-2 size diapers is used up!

Toddler independence: A washing machine’s horror story

We were very excited when Luke successfully mastered the art of daytime potty training. One less box of diapers to buy, one less diaper to change, one step closer to toddler independence. A win for everyone!

Luke still needs a diaper at night, though. Kids typically can’t sleep through the night without a diaper or pull-up until they’re about 4. But just around the same time that Luke started to be able to sleep through his nap time without a diaper, he started fighting us when we put on his nighttime diaper.

He realized quickly that we weren’t going to let him get away without a diaper at night. So he still fights us at night, gives in and goes to sleep with it on, then wakes up at the crack of dawn to remove his diaper and pajamas, and use the potty. Then he gets a pair of underwear and asks for help to put them on. Aside from the whole crack of dawn part, this seemed like a good thing!

Luke is clearly from the Baldauf gene pool, because as soon as those pajamas come off, he MUST put them in the hamper. They CANNOT be on the floor. So just to recap – he gets up, takes off his diaper and pajamas, uses the potty, put his dirty clothes in the hamper and then partially dresses himself (though he’d be happy if just wearing underwear were his whole outfit for the day… but that’s a whole ‘nother blog post!). Sounds good, yes?

In order to tell this story completely, I need to make two points:

1. Diapers these days are less bulky because the disposable diaper companies have moved away from filling their diapers with layers of cotton, and fill them with an absorbent grain silicate material that expands when it gets wet.
2. Although I know it is wrong, I do not separate my laundry anymore. The goal in the house is to do laundry, do it quickly, and get it done! So I no longer separate colors from whites. We do towels and sheets separately, but for the most part, when the laundry basket is full, the laundry basket gets dumped in the washing machine. What do you want me to say… I am allowed to slack somewhere!
   

Can you see where I am going here??!!

We realized a little too late one day that when Luke puts his pajamas in the hamper, he also puts his silicate-saturated diaper in the hamper too! And because I don’t separate the laundry and am typically pretty sleepy when I start a load of laundry, I never saw the diaper go into the washer! Never noticed as the washer filled that those silicate grains were getting larger, and more and more water-logged…

But I sure did notice when the spin cycle stopped and the diaper had ripped open at the seams. Water-logged silicate grains EVERYWHERE – in all the little nooks of socks, in pockets of shorts, in all the little fibers of the washcloths… And another fun fact… those silicate grains are sticky when wet!

Talk about panic. What a frickin’ mess.

As Nate tried desperately to shake the silicate grains out of all the wet laundry and onto the floor, I searched the internet for how to get them out of the washing machine basin. Thankfully there are other people out there who have made the same mistake that I did!

Nate swept the silicate off of the floor. I ran a load of water with OxyClean (which scarily dissolves the silicate material… what is it made of??). And thankfully, everything dissolved. Then we washed the same load of clothes again, only they were much cleaner and less silicate-covered this time.

And now we have learned a lesson, though I suppose we could have learned two. I now check the laundry for diapers (and found one yesterday!)… but I still don’t separate the colors.

Finding time

Oy, it was very hard to find time to blog once I started back at work this past Wednesday! Nate did a great job with Matt during the day each day (they're enjoying their guy time together). By the time I got home each night, Will and Luke were already home. It is kind of chaotic as we all greet each other, make and eat dinner, and get everyone to bed around 8p. I try to cram a day's worth of baby cuddle time and feedings between 8 and 10p, and then we're all off to bed. So, I apologize for the radio silence.

Prior to going back to work, Nate and I made an appointment with Will's teacher and school therapists to get an update on his progress. We've been giving each boy some time to adjust to their new programs and teachers before starting to look at their education goals and progress towards those goals. Although it has been just 8 weeks since they started school, we thought it was a good time to evaluate progress, considering they will be out of school for the entire month of July (year round school track out time!).

It has been easy for us to see and hear Luke's progress. Since starting his part day program, his language skills and comprehension have jumped through the roof. Part of this could be due to his own natural path of development, but we have to attribute a good part of it to his school and teacher as well. Luke has really come out of his shell and now that his language skills are improving, we also see the emergence of a true sense of humor and confidence in him. Although he still hasn't mastered the art of the telephone conversation, in-person interaction with Luke is a lot more two-sided these days. To us, he's showing some clear progress towards his education goals.

With Will, we felt like his progress wasn't quite as obvious. And although we know that Will has a lot of idiosyncrasies that make him difficult to figure out, we thought it best to set up time with his teacher and school therapists just to make sure that we were all on the same page.

Will's teacher explained to us that Will was having some difficulty adjusting to the classroom. He was crying a lot, and they had spent a lot of time over the past several weeks just working out the kinks of daily classroom life and routine. Mind you, she was not at all concerned about this and explained that a lot of children have an adjustment period.

Will is used to being carried around a lot, which gives him a lot of cuddle time with his carrier. He is also pretty accustomed to having his whines met with some type of action (food, position change, etc). Will's teachers are tasked with his educational goals (which include giving him tools to communicate his needs instead of whining), which means that he is expected to spend a good amount of time in his Kid Kart or stander and pay attention to what is going on in a group.

Will doesn't really like this so much. But ultimately, the adjustments that he is making now will make going back to school in August a lot more productive towards reaching his educational goals. It may seem kind of harsh, but it is the kind of a tough love that only a special needs teacher can give to a child with as much potential as Will has.

Another complicating factor here is that Will is three years old. He's got the desire to be the independent ruler of his kingdom that all kids this age have. So some of his difficulties with transition can also be attributed to being stubborn and wanting to be in control. Will is the youngest child in his class by more than a year - the other kids in the class are 4 and 5.

After our meeting, we had the opportunity to spend some time in Will's classroom. We watched him enjoy circle time with his peers, got to help his physical therapist with some PT, and just have a little fun with Will in his new environment.

All in all, the meeting was good. We got to give some tips for getting past some of Will's -isms, level-set on Will's goals, discuss some areas where we'd like to see them add some focus, and work out a more clear, more regular, less official communication process so that we can learn in more detail what Will is working on in his classroom so that we can be consistent at home.

It certainly takes a lot of focus, determination, honesty and love to keep up with the education plan and goals of a child with special needs. I can understand how a lot of parents might not have the ability to give the dedicated effort that it takes to actually ensure your child makes progress towards their educational goals. Fortunately for Will, he's got two able parents who will be here to push him every step of the way! Now, he might not appreciate that NOW... but hopefully someday!

Changing of the guard

As slow as the time passed during my 8+ weeks of bedrest, the 8 weeks since Matthew's birth have gone by so quickly. Quite unbelievably, it is time for me to go back to work. My first full day back is Wednesday June 16... tomorrow!

Just as everything with this pregnancy and delivery was different, the time home was different as well. When Luke and Will came home, they were on the NICU schedule, small, and seemingly fragile. We needed to be concerned about every bottle that they took, to ensure that they were getting proper nutrition and continuing to grow. We were also on constant alert for signs of shunt malfunction. In a word, it was stressful. It was absolutely wonderful to finally have them home... but when Nate went back to work and I had two screaming infants looking to me for everything, it was tough!

Perhaps we're older, wiser, more laid back this time... because I don't worry about much with Matt. He's still exclusively breastfed, so I have no idea how much milk he actually consumes. What I do know, though, is that you could lose your lunch money in the rolls on the kid's legs. He's clearly not hurting in the weight department. He's pushing 13 pounds right now, which is consistent with 90th percentile for height and weight. He sleeps when he wants to, and wakes just once in the night to feed. It is all pretty stress-free.

So this time around, my time at home has been more relaxed. I've had a lot of great one on one time with Matt. He cracks me up every day with his facial expressions. He's recently started to vocalize some breathy sounds. No clear words or syllables yet, but he's definitely trying to tell me something. When I speak back, he stops to listen to me... so most of the time, I just let him yammer on about whatever he's trying to tell me. It's a fascinating story.

He's starting to smile more regularly at familiar faces and the ceiling fan... and although he doesn't always do a full smile, Matthew would make Tyra Banks proud with his ability to smize (smiling with his eyes).

Perhaps my favorite time of the day with Matt, however, is when he wakes up in the morning. He takes his time stretching and falling back to sleep despite the craziness around him with getting Will and Luke ready for school. When he's really ready to wake up, we know it... it sounds like a NASCAR race in his crib... "gentlemen, start your engines!" He grunts and farts and burps and stretches many times before allowing his limbs to rest and his eyes to open. "Hello, world! All systems go!"

Matt will be staying home with Nate for the near future. I know that they're going to have a blast together... Matt's already a regular at Target, BJ's, and the post office. He's even been on a road trip to Charlotte and visited both of his brothers at school. No doubt those adventures will continue as Nate shows Matt the ins and outs of waxing the car, sitting up, and bird watching the huge hawk that frequents our backyard.

Wish us luck during this next big life transition! Seems like we're always in some kind of transition... perhaps this is just life?

There's no such thing as an 'empty calorie'

Donuts get a bad rap.

So although everyone went to sleep on the first pacifier-free night, there were several middle-of-the-night wake ups. Between Will and Matt's cries, I think Nate and I slept in less than 2 hours snippets. We were tired when we finally got out of bed in the morning.

A Dunkin' Donuts recently opened just down the road from us. And although I gave up coffee for my pregnancy and while nursing, all I could think about was getting some DD coffee. And also, I thought, donuts will surely make everyone (me!) feel less cranky.

Nate was in agreement with my plan. No arm-twisting required. We piled everyone into the van and made our way in our pajamas. There was simply no time to change clothes. We needed donuts and coffee that badly.

Once through the drive-thru, we gave Luke a plain glazed donut for the ride and made our way home. We got everyone back inside our house and comfortable, and sat down in the kitchen for our breakfast with zero nutritional value.

Luke decided he wanted another donut. I was about to give him another glazed donut when he literally opened the box and LICKED my marble frosted donut. I have no idea where he learned that. But he made his point. HE got the marble frosted donut and I enjoyed a glazed one. Here are some photos of Luke devouring his/my former marble frosted donut.

While we were enjoying some of our other un-licked donut selections and my coffee (thank goodness Luke didn't lick my coffee... there would have been fisticuffs), the sugar started to kick into overdrive in Luke's system. He just started blabbing about everything and anything, making funny comments, and generally making Nate and me laugh. Hard. It was great! We forgot all about the night before, being tired, and our general grumpiness.

So I will agree that donuts are not good on a daily basis. However, the donuts that we all enjoyed together yesterday morning were far from empty calories! If donuts can be the catalyst by which we create memories like this, then I say bring them on (in moderation, of course)! They may not have much in the way of nutritional value, but that doesn't always matter, now does it?

Goodbye to a friend

For the last 3 years and 3 months, Will and Luke have had a constant bedtime friend: their pacifiers. When they were smaller, they used pacifiers a lot (a habit left over from their NICU days). Over the past year or so, pacifiers have only been necessary during nap and bedtime.

Luke went to his first dentist appointment earlier this week. Everything went well, however the dentist noted that the shape of Luke's top front teeth are indicative of a pacifier user. And although it wasn't a problem yet, the time was upon us to discontinue use of the beloved sleepytime friend to avoid future dental problems.

We decided to take the paci-ending plunge this weekend. Although Will hasn't seen the dentist yet (we're awaiting an appointment at a special needs dental clinic), his teeth have the same distinctive shape from pacifier usage. He was not to be spared from the agony of giving up the pacifier.

We talked with the boys every day this week that on Friday night, the pacifiers were going away forever. They both acted as if they understood. Our hope that was by preparing them for it, the moment of truth would be less dramatic. We decided to make the pacifier elimination this weekend because I go back to work on Wednesday, and we wanted to have the potential drama of this occasion long gone before I needed to be alert at work!

I got a small plastic box and decorated it for tonight's occasion. We had a ceremony right before bed where the boys said goodbye to the pacifiers and put them in the box. Then Nate took the pacifiers out of the room. Maybe it was a little dramatic on our parts, but we didn't want to let this important big boy event go by without a little pomp.

Well the pomp was not really appreciated by Will and Luke. All the gearing up we did didn't have much of an impact on the drama. We said goodnight and kissed the boys, then closed the door as normal. There was a look of sheer confusion on Will's face. Luke immediately started crying. Will joined in.

Thankfully the chaos lasted only 20 minutes. And it wasn't Nate and I who caved in! Luke and Will actually went to bed without their pacifiers tonight. Hopefully the next couple of nights go a little easier than this, and by the end of the weekend, those pacis will be a figment of everyone's imagination.

I'm 7 weeks old and now I can...

... be cute and cuddly.

... look at my brother Luke disapprovingly when he does something bad.

... bring both hands to my mouth.

... practice my walrus impersonation.

... do my best Brando and make him an offer he could not refuse.


... feel embarassed when I toot.

It's a vicious dog!!

Otis has been accused of many things over the course of his life. He's been called lazy, crazy, hyperactive, overweight, goofy, fun, 80-lb paperweight, canine vacuum cleaner, cute, crotch-sniffer, energetic, silly, smiley, sad-eyed, expressive, lovable... amongst many other adjectives.

But on one special occasion, Otis was described as he has never been described before: VICIOUS. We have a couple of young kids who live next door. Their parents do a lot of yard work, and the kids are often outside playing while the parents make us look like yard-slackers. I digress.

On this particular day, the neighbor kids were outside. We were in between the garage and the house for some reason (not doing yard work!), and we let Otis out. Otis heard those kids squealing and laughing, and he wanted to be a part of it. Nothing we did could divert him from his course. He was off in a full gallop to have him some kiddie fun.

As Otis nears the kids, we hear the little boy yell "IT'S A VICIOUS DOG!" All the kids then proceed to run and squeal even more, which makes Otis think he's found himself a good game to play. The 'dog-chasing-yelling-child' game ends when we find Otis and return him to our garage after apologizing to the neighbors profusely. So now they think we're yard AND dog-owning slackers. Thanks, you (insert new, slightly-expletive adjective for Otis here) dog! Haha.

Otis is not a vicious dog. Though I do understand how a large, brown animal running towards you at full speed with his teeth bared (albeit in a smile with his tongue sticking out) could be intimidating if you didn't know him and weren't expecting it.

So now, in honor of Otis the Vicious, I give you his majesty posing in his most vicious of vicious poses.

It takes a tough dog to look vicious while exposing your underbelly to the world AND snoring at the same time!

A smile for your Friday

Sometimes all you need to start your day off on the right foot is a friendly smile. Since a lot of our followers check out the blog each morning, I thought you might appreciate three smiling boys to start your day. Have a great Friday and weekend!

Will has an infectious smile which lights up his whole face. Will's biggest smiles arrive when you drop something loudly on the floor, when someone yells "PLOP!" or when we're driving on a very hilly road.

It's getting harder to capture a true Luke smile like this one on camera... when the camera comes out, he yells "CHEESE" and puts on a goofy grin. Either that, or he runs toward the camera as you try to snap a photo, which yields a blurry picture of his forehead.

This is the first Matt smile caught on camera! He hasn't smiled too many times yet, so we were happy to capture this moment. There should be many more to come in the next couple of weeks.

Hard work

Sometimes sleeping is hard work. Thankfully Matthew sleeps very well! He's started going to bed around 11pm and not waking up again until 5am. We could get used to this!

Things you don't want to need but do

Being the parent of a special needs child can often feel very lonely. Thankfully there are support groups for parents and siblings, as well as social outlets such as the Miracle League. Everybody needs somebody to understand them. And everybody deserves to have a little fun.

Most of the people who meet Will understand that he has cerebral palsy. They know that he is a smiley, fun-loving kid who's got a couple of extra needs. What I have learned, though, is that some people don't necessarily understand that. Some people think that when you are talking about the equipment or nutrition that your son needs, you're somehow trying to gloat, are completely ignorant, or trying to commit insurance fraud! Some recent experiences...

a) Will's wheelchair is custom-made for him. Different pieces were chosen specifically for some of his tendencies. For instance, he has a rounded head support because he needs some assistance keeping his head in the center. He has substantial trunk supports to hold his core upright because he has low muscle tone in his abdominal and back muscles. With anything custom and related to special needs, the price tag is automatically high.

We were out with friends one time, and the topic of Will's wheelchair came up. I explained about the special parts, and ended my story with a punctuation mark - the price tag of the chair! As I turned away to tend to Will for a moment, I heard the wife say to the husband "that chair isn't anything special. The regular stroller that we have is a whole lot nicer. And it cost a whole lot less."

Mind you - my purpose in talking about the price wasn't to gloat. Far from it, actually. I was merely trying to express my shock and disbelief that something your child needs can be priced so ridiculously high... because honestly, who WANTS to have to purchase a wheelchair for their child?

b) Children with cerebral palsy often have a difficult time gaining weight. This is due to the difficulty they have with coordinating the many muscles it takes to swallow. Because of that, you want to make every swallow count! Additionally, Will has not yet learned how to chew. This means he relies on a liquid and puree diet exclusively to meet his nutritional requirements.

Whole milk has 18 calories per ounce. Standard infant formula has 20 calories per ounce. Regular vanilla Pediasure has 30 calories per ounce (in addition to having balanced nutrition). Given what I said above about making each swallow count, you can understand why Will consumes a lot of Pediasure! His physicians were the ones that suggested the Pediasure diet, and fully support us using it as Will's major source of calories.

At a recent get together, I was explaining to an acquaintance about Will consuming almost 40 ounces of Pediasure per day between his bottle feeds and his g-tube. She asked to see the bottle and started chuckling after reading the nutritional information. She said "this isn't good for your child. This is almost all sugar. No wonder it has such high calories. You really should worry about your child putting on too much weight from empty calories. I would never let my child drink this."

Did she honestly think I would have my child on a Pediasure diet if it wasn't good for him? That I wouldn't talk to a physician through and through about what was best for Will? Because as much as the Pediasure is great for Will's growth and development and the g-tube helps him maintain proper weight, they aren't things you want to need for your kid.

c) As I discussed in earlier blog entries, Will recently became the proud new owner of a gait trainer. Don't worry, I am not going to mention its cost. I have learned my lesson. Just know that it was offensive and outrageous.

A couple of months into the special needs equipment waiting game (the time between when you figure out the equipment that you need and when it magically arrives at your door), I called the equipment provider to figure out what was taking so long. They indicated that I needed to call my insurance company. I'm well-versed at this game of cat and mouse.

I called the insurance company and talked to the durable medical equipment team. The man that I spoke with indicated that they were doing a full review on the order and this was taking some extra time. I asked why they needed to do such a long review, as we had provided all the prescriptions and letters of medical necessity that are required.

His response to me: Well, it really seems as though this gait trainer is more of a "nice to have" instead of something that your son really needs.

Once I came back from the point of absolute lividity, I asked him if in his experience with children with quadriplegic spastic cerebral palsy, has he ever seen a child learn how to walk without a gait trainer? Of course not. Then how could you even think of it as a "nice to have?!?!?!" Why would I want a gait trainer for Will if he didn't need it?!

Often times, experiences like these make me want to pull back into myself and our family. I suppose this is where the self-imposed loneliness comes in for me. It is tough to put yourself out there only to feel like you're being judged or have to constantly fight to get what you need. I know this is a way of life for a parent of a special needs child... but that sure doesn't make it any easier!