Tuesday, May 31, 2011

When "having an adventure" is overrated and should be put out of its misery

We went to Maryland over Memorial Day to catch up with good friends and celebrate a very special first birthday party. On Sunday, we decided to hit the Metro and take our boys to the National Zoo. We decided beforehand that we were going to treat the Metro train ride as part of the adventure. Good thing we did.

We got onto the train at New Carrollton as early as we could on Sunday. It was supposed to be hot. Luke enjoyed the elevator up to the raised platform. When we boarded, we learned that four stops on the Orange line were closed for scheduled maintenance. On the holiday weekend?! So at Minnesota Avenue, we took two elevators up to the street level and boarded a bus. Thankfully the bus was well-equipped for riders in wheelchairs. We tried to make the most of the ride to Federal Center SW. At every red light, Luke would ask why we were stopped and Will would whine.

Grin and bear it! This is a blip in the road.

At Federal Center SW, we took the elevator back down into the station. We got onto the next train for 4 stops, before getting off at Metro Center to change to the Red line. We went up the wrong elevator. We had to go back down to the Orange line platform, walk further, and take the correct elevator up.

Elevators are fun, right?! This is an adventure! Who cares if the Metro elevators are small, slow and smell like pee.

The next Red line train to Cleveland Park station was delayed by nearly 14 minutes. We attempted to appease annoyed boys by shoving food into their mouths. You aren't supposed to eat on the train system. Like I cared at this point. Three boys on the verge of emotional collapse. It was nearly 2 hours since we started our Metro adventure.

If just ONE MORE thing goes wrong, we're going to call it a valiant effort and turn around and go home.

We eventually made it onto the train, and walked a good clip to the zoo. We had grand visions of getting to the zoo early when all our similar-minded parents would still be sleeping. Unfortunately by the time we got there, things were getting crowded and it was getting hot. We stopped at the panda eating place and shelled out $22 bucks for a couple of drinks and pizzas. Luke and Matt happily ate. Will refused to eat or drink anything and proceeded to cry. Loudly.

Joy of joys.

We put Will in the backpack, and Matt and Luke in the double stroller and started off to see some animals. We saw an elephant. Luke was unimpressed. We saw a panda. No one seemed to care but me.

Within 20 minutes of starting our walk through the zoo, all three boys were asleep. ASLEEP.

Nate and I could do nothing but laugh. All our best efforts had been dashed. Most parents would have turned around at the idea of riding the bus. But not us! We were determined to get to that darn zoo. Nothing was going to stand in our way! We've had larger hurdles than this in our day! (insert valiant superhero theme music here)

Eventually we decided to treat our trip to the zoo like a date. With three sleeping, sack of potato chaparones.

After a couple of hours, many photos of beautiful jungle cats, and a large lemonade later, we headed towards the park exit. Everyone woke up as we were walking to the Metro. They were in fabulous moods. Nate and I were tired and sweaty from carrying/pushing 120 lb of sleeping boys and gear up and down the hills of the zoo.

We had to take the same number of elevators, trains, and busses to get back to the van. Because we knew what to expect, it didn't seem so bad. The boys all loved the train rides and the bus. To them, the adventure WAS the Metro, with a couple of hours of sweaty napping in between.

It was a valiant effort. We are stubborn. We want our kids to have good memories. We can already laugh about our trip, our bullheaded attempt to get to the zoo despite all odds being stacked against us. Sweaty clothes have been washed. Sore muscles have almost eased.

But I totally could have done without the parking ticket on my windshield when we returned to the Metro parking lot. Can't laugh about that one yet.

Thursday, May 26, 2011

I love cookies, yes I do... I love cookies, how 'bout you?

Wednesday, May 25, 2011

So sweet

Once per year, we load up the van and drive out to Bunn to pick strawberries at Vollmer Farm. Last year we went with Will's class. This year we went on our own. For about 3 minutes, the boys were into picking strawberries. We took a load of pictures during those 3 minutes, so it at least appears as though we had a good time.

After all the little ones had gone to bed, I started turning those strawberries into jam. Oh how I love strawberry jam. Every year, I make more and more. Something about gleaming jars of jam makes me very proud. Call me a renaissance woman. I'll be even prouder.

Monday, May 23, 2011

Swallow study

Matt's swallow study was this morning. All in all, it went better than expected. Phew!

Matt tolerated not having anything to eat or drink for the 2 hours prior to his study. When the time came to consume, he consumed! That was the goal, as they mix a "yummy" barium beverage for him to drink, and watch via x-ray as it makes its way down his throat.

Though we have to wait for the official read from a doctor, there was a speech therapist present at the study. She told Nate that when Matt drinks thin liquids such as water and milk, the muscles and nerves in his neck aren't responding quick enough to stop the flow of fluid into his vocal cords. Thankfully, his nerves are reacting quick enough so that he isn't getting any fluid into his lungs. Also, even more thankfully, this is something that Matt will grow out of. The nerves in his throat just need to develop further, and that happens with time.

When Matt drinks thicker liquids, he does not have this issue. So in the mean time, in an effort to stop him from sounding like Darth Vader, we are going to be thickening his liquids with the same thickener that we use for Will. We certainly have a lot of it!

It is good to know what is going on, and especially to know that although it sounds bad, what Matt has is not serious. So tomorrow we'll start thickening liquids and see what happens. Not sure what I'll do when I can't figure out where Matt is in the house, simply by listening for the direction of his noisy breathing.

Friday, May 20, 2011

Crackly Matt

Ever since Matt started going to day care, he's had a crackle. He kind of purrs sometimes. You listen to him, and you just want him to clear his throat. Only babies don't take direction like that, and they laugh at you for the funny sounds you make.

At first we thought it was a cold. But it didn't go away. We had one doctor tell us it was RSV, only the test revealed that it wasn't RSV (or any other virus for that matter). The crackle seemed to be in Matt's throat. Not his chest, not his head. He wouldn't have it in the morning upon waking, and it would get progressively worse during the day. After several attempts at different antibiotics didn't make any dent in the sound, we decided to go to the ENT (the same one we went to with Will.)

The ENT did a thorough exam of Matt, but of course because the appointment was in the morning, the crackle wasn't too bad. Towards the end of the appointment, though, Luke did something to make Matt angry, Matt started to cry, and the crackle started up. The ENT immediately got a scope, and looked up Matt's nose/down Matt's throat.

He couldn't really see anything, though. So he gave us some nasal steriods to see if they would help. We tried them for a couple of weeks. No change. We had to go down a new path.

After some careful ENT questioning and watching on our part, we realized that Matt coughs after he drinks. The tie in to starting day care is that is when he started using sippie cups - much higher flow than breast or bottle.

There are two trains of thought right now. The first is that there is something structurally wrong with his epiglottis and it isn't keeping fluid from going into his lungs when he drinks. The second is that there is some nerve immaturity in his throat, and he isn't clearing all of the fluid out of his throat when he drinks.

So the first step is a swallow study, to determine if he is actually getting any fluid into his lungs. I am actually not sure what the second step is right now. The swallow study is scheduled for this coming Monday. Yum, barium. We're old pros at swallow studies, having completed 2 with Will in the past couple of years. This will be a first for Matt though.

Though this might sound serious, neither us nor the ENT seems too concerned. If there is an issue with his epiglottis, there might be some minor surgery involved. If it is the nerve thing, then likely Matt will just grow out of sounding like a crackly cat.

Perhaps if we were different parents with different kids with an easier start to life, we would be concerned right now... but this just seems like a speed bump in the road. It is worth investigating, but nothing to be nervous about.

Wednesday, May 18, 2011

Mary, Mary

This is my Grandma Mary. Luke and I took a quick trip to New Jersey see her this past weekend, and celebrate her 80th birthday (a little late). She's a spry 80 and will probably be upset with me for broadcasting her age to the entire blogosphere.

She's been dealing with some heart issues recently. Yesterday, she underwent a cardiac catheterization to determine the extent of damage. Today she is having open heart surgery to replace her aortic valve. This is a long procedure and recovery, so please keep her in your thoughts today and through the next couple of weeks as she recovers.

Update at 5:00p: Grandma Mary came through her surgery well earlier today. She will be in the ICU for the next couple of days, and then will spend the next many weeks recovering. Please keep her in your thoughts any prayers through these next weeks of recovery.

Tuesday, May 17, 2011

Easy Silence

When I was little, I had one friend whose parents were divorced. Only one. I remember that at some point in the 6th grade, she told me that 50% of marriages ended in divorce. I didn't believe her.

As I moved through high school and became a child of divorced parents, I learned that the actual divorce rate was something closer to 66%. I believed it.

Since becoming the parent of a special needs child, I have learned that although the 66% American divorce rate is high, the 80-90% divorce rate for parents of a child with special needs is even higher. And even scarier. But totally believable.

Between doctors appointments, therapists, therapies, research and reading, IEPs, surgieries and medications, it is easy to lose yourself in the day to day, waxing and waning hope, and seeking solace in any place possible.

Nate and I are aware of this scary statistic. We've had conversations on how to avoid the feelings of blame and guilt. We try our best to make even a couple of minutes for us each day. We laugh. We share responsibilities. But I don't necessarily think we were this good 5 years ago. We grew here. When I look back at our path to this point, I try and find the turning point in each situation. The good thing that came out of the bad. The spark.

Our 75 days living in the NICU were long and sometimes depressing. But each day when Nate and I left, having just loved on our little babies, we walked out hand in hand. Sometimes we talked and were happy. Some days we were silent and so scared. And one lucky day, we left with babies in our hands.

Through those days, we learned that whatever we were feeling was ok as long as we were honest and open about what those feelings were. Its hard to judge how you would feel in any situation, much less put expectations on how your partner would feel. We learned acceptance. Silence. Compassion for each other. Trust.

Nate and I often find ourselves defining parts of our lives by songs. For me, this period of relationship advancement and maturity is defined by a Dixie Chicks song called Easy Silence. Feel what you want about the Dixie Chicks. They write some good songs. Here are some of the lyrics that still make my eyes well up with tears. In a good way.

When the calls and conversations
Accidents and accusations
Messages and misperceptions
Paralyze my mind

Buses, cars and airplanes leaving
Burning fumes of gasoline
And everyone is running
And I come to find a refuge in the

Easy silence that you make for me
Its okay when there's nothing more to say to me
And the peaceful quiet you create for me
And the way you keep the world at bay for me

Thursday, May 12, 2011

Go Red Dragons!!

We, the Slaviks, are the biggest SUNY Cortland Red Dragon lacrosse fans in North Carolina! Though we're 500 miles away, we're hoping you can hear us, Cousin Joe! Good luck in second round of the NCAA Division III tournament this weekend!

Wednesday, May 11, 2011

Why I can't bear to cut his hair

Baby girl, Baby Bieber, baby mullet, cabeza gordita, little fathead, baby shag... call him what you want. Matthew has long hair. And I can't bear to cut it.

I never had any opposition to cutting Luke or Will's hair, so I set out on a pictorial inquisition to figure out why. Here is a picture of Luke and Will near their first birthday.

They had super short hair on their first birthday... through no fault of genetics! By the time Luke and Will reached a year, they had undergone two shunt surgeries each. Because of the extent of those surgeries and their small baby heads, they had been practically scalped. Twice.

I never got to choose when they received their first haircut. A neurosurgeon chose the date for me. One thoughtful one even saved a lock of Luke's hair for me. Will's was still too fine and short to save. It seemed to take forever for their hair to recover from its early, harsh chop job.

So now that Matt's hair has never been touched, I think I am savoring the fine, beautiful, long baby hair. I will eventually warm to the idea of cutting his hair into more of a trimmed little boy style. Yes, I have to style his hair over his collar. And around his ears. And am continually pushing it to the side so it doesn't hang into his eyes. But for now, just allow me to love the mullet.

Tuesday, May 10, 2011

Mind dump follow up.

Blogging is very one-sided communication. Sometimes this is good. I get to tell my side of the story without complicated interjections. My blog can be like a serene, smiling, head-nodding psychologist on my bad days. Sometimes blogging is bad. You never really know who is reading. You never really know if they like, dislike, or care what you write about (unless they comment!). And you're never sure if once you tell stories, they wonder how those stories end.

In the belief that there are folks out there who read these stories and want to know how they turned out, here are some follow up to recent posts.

- Jack Murray is a fighter. He always has been a fighter. And he continues to be a fighter. After a week of good-byes, Jack turned the corner and spent the last day saying hello again. Remarkable. Though he isn't out of the woods yet, he is making amazing strides. Thanks for all the warm thoughts and hopeful prayers sent his and his family's way.

- Will's sleep study. That was a night poorly spent! Will hated those things poking him in the nose, sticking to his chest, and making it tough to turn his head because of the ponytail of wires. He woke up a lot. The point of a sleep study is to figure out why you don't sleep, not make you sleep worse (or maybe that is the point - be happy with the sleep you have at home without all the crap on you!). The final report recommended that we raise the head of Will's bed, noted some muscle contractions in his legs that woke him just a quarter of the time, and some extra brain wave activity that did not surprise us.

The true surprise from the sleep study came after we finally fell asleep around 3a. At 5:30a when they came in to wake us up, Will had wiggled himself under the covers of the bed. Since Will was put on neurontin several years ago, he has always seemed warm to us. In all the throes of trying to get him to sleep, it always appeared as though warm covers made him mad. So we stopped putting covers on Will. He seemed to sleep slightly better, he never seemed too warm or too cold, and never had goosebumps.

Fast forward again to the sleep study. I made a mental note of the covers in case the sleep study report showed nothing. After it did show nothing, we attempted to cover up Will at night.

Wouldn't you know it, the kid has slept through the night ever since (with the exception of one night when he had a stuffy nose... but one night? One night I can handle). TALK ABOUT FEELING LIKE A CRAPPY PARENT. Mom, you thought this was all neurological, CP related stuff... turns out, I was just cold! Ugh. I am glad to have it all solved, I still feel bad about this, weeks later!

- Mothers Day was a bust around here. Three boys in bad moods = one mommy in a bad mood. Never mind that I also broke my toe the day before. But hey, at least my eye isn't all red anymore. I wonder if that means my stress level is decreasing? Ha! Not.

- We finally finished that last 2% of moving! That is NOT to say that we've unpacked any more... just that all our boxes are in the same house :)

Wednesday, May 4, 2011

When there are no words

Nate and I heard the sad news today that Jack Murray, a beautiful and wonderfully loved little boy that we know, was admitted to the pediatric ICU in very critical condition. We link a Caring Bridge journal that Jack's mom Julie keeps on the right side of our blog at http://www.ncslaviks.blogspot.com/. I recommend that you read Jack's story.

Jack is fighter. He has been fighting a tough fight for a long time. His body is tired and he is having a hard time fighting this most recent fight - double pneumonia. His parents have said that they hope that he makes it through tonight. We are heartbroken for our friends.

Nate met Jack's dad Brian several years ago when they were working on the same construction project. Somehow they got around to telling their family stories. We felt an instant connection. We were fortunate to attend a fundraiser for Jack in 2008 and meet the whole family. The photo below is Jack meeting Otis at that fundraiser. Jack loves dogs and was so excited to meet Otis! We were so happy to share in such a special, important day.

Please pray for Jack's family - his mom Julie, dad Brian, big sis Kali and little brothers Gabe and Casey - as they travel this next step together. I wish I could offer words of hope or guidance, but there are no words. There are thoughts and prayers, quiet solace, friendship, admiration and affection, grief... and ultimately, peace.

Tuesday, May 3, 2011

The gross things we do for our kids

I can't believe I am actually sharing this...

Raising children is inherently messy and gross. Giving birth - no additional explanation necessary. Changing diapers, acid reflux, first feedings - all gross.

I thought we were past all of this with Luke. But in recent months, he has raised the grossness ante. I have three gross stories to share. Pity me. And only me. None of this stuff seems to happen to Nate.

1. Like all kids, kisses make Luke's boo boos feel better. I don't mind kissing knees, elbows, fingers, heads, etc. Unfortunately for me, Luke recently bit his tongue. He stood there, crying, pointing to his tongue. "Kith it Mommy." Oh buddy, please don't make me do that.

2. When Luke wakes up in the morning, he has to pee like a race horse. He also does not like getting his hands dirty or wet. The other morning, he was standing near me, using the potty first thing in the morning. He let out a wimper. I went to see what was wrong. I crouched down to his level in front of the potty. He immediately put his hand on my lips. "Look Mommy, pee."

3. See bullet 1 above for kissing boo boos. Luke has fallen a couple of times over the past week, and has a skinned knee and a skinned elbow. On Sunday night after baths, he pointed out that his elbow still hurt and that he needed me to kiss it. No problem right? First, remember what scabs look like after a bath. Then imagine kissing that.

When you finish laughing, feel pity for me. I'm still brushing my teeth.