Tuesday, June 29, 2010
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.
Sunday, June 27, 2010
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.
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!
Hey, wait, who hijacked my camera?!?!
Friday, June 25, 2010
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!
Tuesday, June 22, 2010
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:
- 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.
- 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.
Sunday, June 20, 2010
Tuesday, June 15, 2010
Sunday, June 13, 2010
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.
Friday, June 11, 2010
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.
Wednesday, June 9, 2010
... look at my brother Luke disapprovingly when he does something bad.
... practice my walrus impersonation.
... feel embarassed when I toot.
Sunday, June 6, 2010
It takes a tough dog to look vicious while exposing your underbelly to the world AND snoring at the same time!
Thursday, June 3, 2010
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.
Wednesday, June 2, 2010
Tuesday, June 1, 2010
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!