Wednesday, January 28, 2009

The Swim Kid

Some of you ex-GMST swimmers out there might recognize the name of this post as the title of our most classic summer home movie. A witty reflection back to The Karate Kid, where Mr. Mi-agua (me!) caught imaginary flies with swim flippers rather than chopsticks. That was the summer that Gail was in Germany and Scott from RMSC was our coach! Oh fun times...

But now, a new Swim Kid is born! Just check out these recent pics of Will in the pool with Nate. He totally loves the water... kicking... gliding... everything about it. Its a fun way for us to do some of his physical therapy. And he cheers up all of the grumpy people at the therapy pool when he gets there, cooing and squealing up a storm.

Since we started with aquatic therapy last year, Will's shown us an incredible increase in activity level! And bath time has become even more fun while Will does his "kickies." So in addition to the pounds that he has been putting on with the Pediasure, he's also developed some serious muscle definition in his legs. The joy he feels when he kicks in the water or in his chair or while doing tummy time is infectious. I bet you're smiling right now, looking at the grin on his face in these pics!

Thursday, January 22, 2009

A day to remember, a day to forget


We had a slew of doctor's appointments scheduled today. Rather than make the drive back and forth multiple times a week or month, if I have help, I'll make appointments back to back on a single day. And while this is never the easiest thing to do for the boys and their moods, it does save on gas and my time off of work.

So today, Oma and I piled the boys into the van around 7:45. We made it to the hospital in good time (the ice from the past couple days is gone). Will needed to get some blood drawn for his nephrologist. She wanted to make sure that all of his electrolytes were in order. Mainly they are concerned about his potassium level, because the blood pressure medication that he is on can sometimes make the body store too much of it. Thankfully we had a good phlebotomist, and they were able to complete Will's blood draw with just one arm stick. He wasn't too happy with us for sticking him and holding him down, but it was a lot better for me as the mom to only have him stuck once.

After the blood draw, we were scheduled for a clinic that is set up to keep an eye on former-NICU babies. We go about once every six months, and they look at development, communication skills, and hearing. Our pediatrician also looks at these things more often than every six months, and we have a lot of other -ologists and -erapists... but I keep going because I like the couple extra sets of eyes on the boys.

Almost immediately upon arrival, we were told that the cardiologist called and asked if we can get Will's echocardiogram done early (we had an appointment right after the NICU clinic). Will was scheduled for the echo also by the nephrologist. Apparently the blood pressure medication that Will takes can also have negative affects on some organs, particularly the heart. So once every two years or so, they want to make sure there has not been any heart damage. Although we were doing the cardiologist a favor and coming early, we still managed to wait for 30 minutes before they called us back.

An echocardiogram is basically an ultrasound of the heart, with a little bit of an EKG mixed in. We were concerned that the tubing from Will's shunt was going to cause a problem with the ultrasound, but everything worked out well. Will did not like the ultrasound though... he cried whenever the tech doused him with more ultrasound lube. It was slightly dramatic, and I sang "Michael Row Your Boat Ashore" like 800 times to try to keep him calm. Thankfully, everything with Will's heart looked wonderful! No damage and no heart muscle thickening.

While we were gone, Oma and Luke went to the ENT and Luke's hearing was tested. He passed with flying colors... this wasn't a surprise, considering the kid can hear the opening of a bottle of soda from 25 yards and comes speed-crawling to get the bottle.

Once Will and I returned from the cardiologist, it was feeding time. When Luke was done, I went with him to see the occupational therapist. She does a sort of baby standardized test called a Bayley, where she presents him with all sorts of challenging toys and situations, and sees how he reacts. Once we let Luke turn on and off the lights for a couple of minutes, and open and close the filing cabinet for a while, he was ready to go. He did pretty well, though it was odd for me that some of the things he does so well at home, he sort of freezes on when out of his element (like playing with blocks). The OT was impressed with Luke's vocabulary and how now he is this-close-to-walking.

The last time we saw her was when we realized that Luke had a developmental delay of 2-4 months, and that appointment is the reason he started seeing a play therapist. But guess what... today, Luke showed us all that he has overcome his former preemie delays! The Bayley showed that he was at the development level of a 22 monther!! Considering the boys will be 2 in March, this is great news! They didn't even have to use his corrected age (which would have put him at a little over 19 months right now). Way to go Luke!

When Luke and I returned to our exam room, the speech therapist, nurse practitioner and attending doctor were all doing some testing on Will. Oma told me that Will had his hearing test while Luke was with me, and that Will did exceptionally well on his hearing test. Cool!

The doctor tells me that she wants to talk with me a little bit about Will, and would it be okay if Luke goes with Oma and the speech therapist to see how he's doing with speech. I say sure. I assume that before I got into the room, she has examined Will. Here is our conversation (only slightly paraphrased).

Doctor: I think it is time that we start re-evaluating our goals for Will.
Me: What do you mean?
Doctor: Well, babies like Will... babies who have significant motor control issues and visual impairments... multiple disabilities... they just aren't able to do all the things that we want them to.
Me: Yeah, I know that. But we work hard with his therapies on a regular basis. He's making quite a few significant strides.
Doctor: I think its really important that you get him involved with an augmentative therapist [assists with communication for kids with special needs] and that you make sure that all of Will's service providers are working together.
Me: We have worked with a communication therapist as a part of our therapies. And yeah, I have arranged for quarterly meetings with all of his service providers. It took a lot of work, but I finally have everyone on board.
Doctor: Babies... like Will... with so many disabilities... you really need to make sure that he's getting everything he needs. Its a lot of work and a lot of heartache... we have a lot of concerns about his multiple disabilities and his ability to function. We don't think this clinic can do Will any good moving forward.

At this point, I totally zoned out. She kept talking about something.

In my head, I started freaking out... what other bad news could she tell me? Will has recently been seen by his ophthalmologist (who thought he was doing really well), as well as the physical medicine/rehab clinic where all the children at UNC who have cerebral palsy go (and he was happy with Will's recent increased level of activity). What did she see when she examined him that made her so more concerned than they have been?

At some point, she realized that I was crying and not listening to her anymore, so she got up. She went over to where the nurse practitioner was feeding Will on the exam table. And then she started to examine him.

As my friend at work says... just let that marinate for a minute.

She gave me that whole spiel about Will and his needs, and his difficulties and his multiple impairments without having laid a hand or eyes on him.

And as the nurse practitioner ran through her battery of tests, Will did wonderfully. The nurse practitioner squeaked with excitement. The doctor looked impressed. And as the speech therapist ran through her battery of tests, Will rocked her tests. The doctor looked happy and slightly intrigued. And as I explained about the recent appointments with ophthalmology and physical medicine, and the nurse practitioner and speech therapist gave Will an "atta-boy," the doctor proclaimed:

Will has really come so far in the past 6 months! You all are doing a wonderful job and we are so proud of him. He's doing so well with his eyes, and since he got his new equipment, he's taken remarkable strides with his level of activity and interest in the world around him. Wow...

I was so pissed. And shocked. Was she reading me some kind of doctor script when we talked before she examined Will? How could she say all of those things, and then change her tune 100%? Flabbergasted is an understatement for how I felt. So much for the accuracy of the "Will Slavik Cliffs Notes" that she read prior to seeing us...

I didn't even look at her again after she said that. I really just wanted to get out of the clinic. The best part of seeing her was when they told us that the boys have aged out of the post-NICU clinic. We don't have to go back again!

So really, all in all, it was a good day. Will's heart is in good shape, Luke's developmental delay is gone... but for some reason, that doctor really set me off... made me truly question if we are doing enough of the right things for Will. In my head, I know that we are. We do so much with him with his various therapies and doctors and Brainwave... maybe I am most upset that I let her make me doubt that. No one can tell us where Will will go, what he'll be able to do... the sky is the limit for our son, and we're going to be there, right by his side... giving him whatever he needs along the way. Its just goes to show you that doctors don't always know best... moms do.

Tuesday, January 20, 2009

Snow Day Part 2...

As I promised, photos from today! When all was said and done, we got about 4 inches of snow at our house. By the late afternoon, the snow that had gathered on the roadways was melted into slushy piles. Bad news when the low temperature tonight is 19 degrees! We might just be "snowed" in again tomorrow if the roadways are icy in the morning... I had grand ideas of taking the boys on their first sled ride today, but that didn't really materialize. Mostly because no one in North Carolina has sleds... but the second reason was because Luke didn't really seem to like snow at all! See the pic below.

Will, Nate and Luke huddled together for warmth... just kidding. By the time we took the boys out to enjoy the snow, the temperature had warmed up to about 36 degrees.

Will and Nate enjoying our first real NC winter weather... Will really seemed to enjoy the breeze on his face. I think he was a little taken aback at first by the cold, but he quickly got used to it.

This was as close to the snow as Luke was willing to go. Every time I tried to put him down, he cried and wanted "up." He enjoyed crawling around on the driveway, though, and was the first to head to the front door... as if to indicate "play time is over!"

Otis is truly a snow dog. He did laps around our yard every time we went outside! He probably got more exercise today than he has in a while, which is why right now, he is a completely useless, snoring, dreaming lump on the floor!

Snow day!

Its a rare day when we get snow in North Carolina, much less an actual accumulation of snow. So imagine our New York-ian excitement when we were predicted to get 2-4 inches between last night and today!

The snow started around 2am, and didn't seem like much at first, but now it seems to really be flying. Oma made it to our house safely, thank goodness, though the roads were not very good. I am working from home today because I don't feel like being snowed in at work, or worse, on the side of the road! The last time there was accumulating snow in NC, it took people 8 hours to drive 5 miles. Nate drove in to work, though... I think he wanted to test out the 4 wheel drive on his truck!

We haven't taken the boys outside yet, Oma and I are planning on doing that right around lunch time. I'll post some pics of them in the snow then. But in the mean time, here is a pic of our house and Otis loving the snow!

Wednesday, January 14, 2009

Ophthalmologist - yay!

In the past two years, there have only been a handful of times when I have been truly happy coming back from any of our many -ologist appointments. Typically we get some good news sandwiched in with bad news. But today's trip to the pediatric ophthalmologist was different!

In July, doctors at the Duke Eye Center diagnosed Will with Cortical Visual Impairment. He did alright, but not great, when presented with some toys and lights to visually track.

Well today, Will totally ROCKED the visual tracking tests. He did so well, in fact, that they brought in another technician to do the next round of vision tests. We didn't even get to round 2 in July.

So the tech brought out these white boards with black stripes on them to do a Teller Visual Acuity test, also known as a preferential looking test. Will did really well, and when they charted his progress, he was below "normal vision" (which was not a surprise), but the wonderful thing here is that HE MADE IT ONTO THE CHART! Way to go, Will!!

When the visual acuity testing was done, we saw the doctor. His eyes nearly bugged out of his head when he saw the progress that Will has made in the past 6 months. He was genuinely impressed, and even told me that he thought Will's CVI was "mild." He ALSO told me that because of the continual progress that Will has made with his vision, he expects that trend of improvement will continue steadily.

We go back again in 6 months, at which time they'll do the same visual acuity tests to determine if Will has made more progress, and will also test his actual vision again. A lot of children with CVI benefit from wearing glasses. Last time they checked Will's vision, he was slightly near-sighted (damn Baldauf-Loss genes! ha) but nothing that warranted corrective lenses. So we'll see what happens (no pun intended).

Hope you are having a good day. We Slaviks are floating on Cloud 9 with the exciting news about Will's vision, and the amazing amount of pride we have in him! And thanks to Kathy, Will's Governor Morehead pre-school teacher, for all the hard work. Your dedication and enthusiasm helped us get to this spot!

Monday, January 12, 2009


As the parents of twins, and one with special needs, Nate and I are often asked how we do it... how do we hold it together, keep track of things, keep our motivation up when things are looking down... What we find is more often than not, we find our inspiration in our children.

We always knew that Will wanted to move... since we started with aquatic therapy, he just can't get enough kicking and bouncing. He also showed us early on that he knew the motions to crawl, he just didn't have the muscle control to make it happen. So our physical therapist Ilana (hi Ilana!) brought over a new "toy" for us to play with on Friday. Its called the Creepster Crawler, and it basically holds Will in the right position to allow him to crawl, but provides him the support and the wheels necessary to actually get up off the floor and go somewhere.

Now keep in mind that whenever a new piece of equipment shows up, Nate and I find ourselves less than thrilled. We know that it is the best thing for Will, but it also represents one more step away from "normal." It also represents our dining room turning more and more into the "Will Equipment Room."

But we LOVE the Creepster Crawler, and I think that after looking at the pictures, you'll understand why. It took Will a little while to get used to the contraption, and to feeling secure and safe enough to hold up his head. But after a while, he really got into it. For those of you who know our house, he went from the dining room to the front door with some assistance in less than 5 minutes!

There wasn't a dry eye in our house as we watched our little guy push his way across the floor. We were just so proud of him. You can see in the photo of Will and Nate the sheer excitement and joy on both of their faces. It was truly inspirational.

Now we're on a search for some type of grippy sock or shin guard or knee pad to put onto Will's legs so that his socked feet don't just slip across the floor. We can't wait until it sounds like a basketball court in our house!

Thursday, January 8, 2009

Surgery... just say no!

So I have been having this internal battle about how much is too much to share on a blog... but Karen aptly pointed out that I had earlier discussed the need to take Will to the pediatric urologist for a potentially undescended testicle, therefore I am supposed to update you on the result!

Will had an appointment on Tuesday to review his testicular ultrasound and to meet with the doctor. Poor guy didn't know what he was in for. Every time the doc or the resident would "examine" him, his eyes got very big, his mouth got very little, and he got very quiet. But thankfully, the news was good!

Will has a "retractible" testicle, not an undescended one. If you look up "undescended," you get scary words like "cancer." If you look up "retractible" you find out that his little parts just like to hide out sometimes. They'll see us back in 18 months just to make sure everything is still ok. So yay! One less -ologist for now. And no more eye-bugging exams for Will!

Monday, January 5, 2009

Baby's first shiner

Your eyes aren't deceiving you... Luke DOES have a black eye. On Friday morning, he took a tumble off of a chair and his right eye met up with the arm of the chair on the way down. It didn't seem so bad on Saturday, but now it does! He is doing fine with it, it looks worse than it feels I guess.

And of course, as luck would have it, we had an appointment with the pediatrician this morning for the boys' third Synagis shot! "Yes doctor, my son has a black eye. Yes doctor, I know this looks bad..." Actually, the doctor and the nurses thought it was funny.

Will continues to gain weight at a great rate! We are so excited about this, because our efforts are really paying off. Will had been stuck at 20 lbs for so long, and now weighs 21 lbs 3 oz. Good job, buddy! He's almost back on the growth chart for weight. Luke actually has jumped a percentile since we have started with Will's feeding therapist (he gets to eat all the high calorie stuff that she prepares too) and now tips the scales at 24 lbs 6 oz. No wonder our arms are tired at the end of the day!