Monday, January 30, 2012

Pizza peek-a-boo

He won't eat pizza when we cut it up anymore. He insists on eating it whole like his big brother Luke. He lacks the molars and jaw strength to really take a good bite so the cheese just slides off the top and the crust remains unscathed. He doesn't mind. He's a 21-month old big boy. He eats pizza.

And then he plays peek-a-boo with his greasy pizza-covered hands. Pizza night is always bath night. Always.

Sunday, January 29, 2012

...on the loss of an -ologist

Will's sinus surgery is nearly 2 weeks past us now. He had his post-op follow up late last week. We learned that Will had 2 different kinds of bacteria growing in his sinuses, thankfully both of which are common and easily treated.

The fungal results take 4 weeks to come back. Will's ENT felt, though, that because he hadn't gotten any preliminary results back from the infectious disease people, the likelihood of the fungal results coming back positive was very small. We'll keep waiting for this one for the next couple of weeks, just to be sure! A fungal infection would mean that we gain a new -ologist (an infection disease specialist) since they are the ones who treat fungus.

But for now, at least for the next 2 weeks, we are lucky to have lost an -ologist. Based on the fact that Will is doing so well after his surgery, his ENT indicated that we only ever need to come back if Will has further problems. There was no need for him to be followed regularly. I don't know if Will has ever lost an -ologist before... if anything, he gains at least one new one each year. Sometimes two.

Woo hoo! We all can breathe a collective sigh of relief... including Will! Since his surgery, Will has had none of the congestion problems that have plagued him for the past 3 years. His face smells so good - no more 'death breath!' His sinuses now have a new route of drainage, so this ability to breathe should last for the rest of his life. Now when he gets a cold, it should go away in a week or so, instead of turning into a sinus infection each time because nothing could drain away.

So Will's bed time routine no longer consists of taking a long bath, spraying saline up his nose, propping his head up on 2 pillows, turning on a humidifier, spraying him again with saline (and repeating several times through the night). He can finally breathe.

You'd think this would mean that Will is sleeping 100,000 times better now, wouldn't you? Unfortunately he isn't. Though he is not congested and clearly not in any more pain from the surgery, he is still waking several times a night... and pretty consistently too. Each time needing to be adjusted in his bed.

He goes to bed at 8. Wakes up around 10. Wakes up around midnight. Between 2a and 3a, he wakes every 15 minutes. After 4a, he sleeps well. Unfortunately on most nights, this means just 2 hours until most of us in the house wake up.

Will is never awake enough during these times that we worry about him having a seizure. Usually he is back to sleep as soon as we adjust him on his bed. But it is so frequent, and so regular, that it makes us think that there is something else going on. I know that most people ebb and flow in their sleep to a point that they wake up lightly many times a night. And this might be the case for Will. He can't adjust his own position in bed. So for us, his "lightly waking and needing attention" means getting out of bed, walking across the house, adjusting Will, waiting for a few minutes to ensure that he goes back to sleep quickly, and going back to bed. All the while trying not to allow your joints to crack to wake up Luke and Matt, and getting back into bed as lightly as possible to allow your lucky still-sleeping spouse to keep on sleeping!

We thought that Will was waking with this frequency because he was congested and couldn't breathe. Now that we've ruled that out, we've got to think of another cause and proceed down the path of fixing that.

I know I've said in the past that Luke sleeps through Will's nighttime shenanigans. But in the past couple of months, he has been coming into our room several nights a week in the middle of the night. More often than not, he says that he doesn't like sleeping in his room and doesn't like his bed.

It is hard to know if Will's antics are keeping Luke awake. It is tough to think that the best thing for Luke might be to not share a room with his twin brother anymore. Let's hope that Will starts to get the hang of sleeping better, so that all of us might have improvement in that area.

Tuesday, January 24, 2012

Down for the count

On Saturday night, Matt woke up in the middle of the night in the middle of a whole lot of sickness. I whisked him out of bed, stripped him down, and changed his clothes while Nate sleepily changed his sheets. We were all back to sleep quickly, but since then, Matt hasn't had much of an appetite.

I didn't think much of it until yesterday afternoon, I started to get the icks. You know, that feeling in your stomach when you know something isn't right and you're about to have a very long 24 hours ahead of you.

Thankfully it appears as though everyone else in the fam has been spared.

I'm still in bed, in the same pajamas I put on yesterday afternoon. Yep, its gross. I've been holed up in our room for the last 24 hours, a self-imposed quarantine in hopes of sparing the remaining 3 Slaviks this lovely illness that my youngest so kindly shared with me. No shower, no food, no contact (with the exception of Nate sneaking in to make sure I haven't died).

I heard the commotion of last night's dinner, goodnights and kisses, cries in the middle of the night, and the fun of getting 3 boys ready in the morning. All from behind my closed door. It was when I heard Will's bus pull up this morning that I managed to pull myself to the window and sneak a peak through the blinds. Will's smiling face on the lift, ready to start his day. Nate holding Luke back from showing the driver how to operate the lift. Matt's little excited hand waving goodbye to the bus as it drove down the street.

Oh, the heartache of missing an entire day of their lives. As much as life can be hectic and loud, and as much as we say all we want is a break... being stuck on the outside looking in makes you realize how being on the inside is the best place to be.

Saturday, January 21, 2012

Mountain Climber

Jack Murray passed away today. Jack had been fighting a terminal infection for the past several years. I blogged about Jack and his family last year when he had a scare and spent a long time in the PICU. Jack was back in the PICU for several weeks in November, and his parents Julie and Brian decided the best place for him to be was at home in the arms of his loved ones. He spent Christmas and New Years enjoying all their love, and went to sleep early this morning. Peacefully.

Please keep Julie, Brian, Kali, Gabe and Casey in your thoughts and prayers. They have a tough road ahead of them. If you have a moment, visit Jack's Caring Bridge website: Julie and Brian have done such a remarkable job telling Jack's story and keeping themselves grounded through Jack's illness. They are an inspiration and a source of strength for so many going through similar experiences.

Thursday, January 19, 2012

Rapid undulation

The 2 days since Will's sinus surgery have been full of ups and downs. Not high highs and low lows... just small rapid changes.

The night before Will's surgery, he slept terribly. Even by Will standards. He woke up about 8 times in an 8 hour period. This was after sleeping terribly for the better part of the week before as well. Even though we're well versed in truncated sleep around here, this was getting a bit unbearable. Thankfully the night after Will's surgery, he slept much better. I wouldn't call it GOOD... but it was at least back to normal. He woke 4 times that night.

The day after the surgery, we noticed one single remarkable instantaneous change in Will. His face no longer smelled. This might seem like an odd statement. But for the last couple of years, Will has had bad breath. Even after brushing his teeth, he would still smell stale. It kind of overwhelmed his face when you would get close. We never really talked about it before (even in a 4 year old, bad breath is taboo!), but both noticed the change and remarked upon it. Instead of smelling Will's breath, we could tell what he had eaten recently (strawberry yogurt). So odd.

I had high hopes that the second night after surgery, Will would sleep even better than the night before. I like trends like that :) Unfortunately, Will had other ideas. He woke up in clusters, wanting to be adjusted on his bed. The packing in his nose is starting to break down, and he sounds congested (even though we know he isn't, and couldn't be). We were sleeping terribly, and sleeping hard in between Will wakings. At some point in the night, Luke had a bad dream and came into our room. Usually I wake instantly when I hear Luke walking at night, but I didn't notice him until he was in our bed, practically sitting on Nate's face, and sobbing. Nate was so tired that I literally had to wake him up... with Luke still sitting on him.

Will had a good day today. We decided to see how he would do without Tylenol, and he did wonderfully. He had a great eating day, and his thirst for Pediasure is on the rise.

He took a long time going to sleep tonight. So happy in his bed, kicking around and smiling. After a while, I didn't hear him anymore, and was preparing to hit the blog to post about how well he was doing. I checked one last time. You know where this is going...


So the rapid ups and downs, the undulations... well they have ended on a low point this evening. Will responded quickly and completely to his Diastat, and is back to sleep. He is peaceful. I am upset. I had allowed myself to hope that this surgery and the infection that made it a necessity was somehow having an impact on his seizure frequency. Get rid of the infection, get rid of the seizures. Wouldn't that be awesome!?

I don't usually do this. I am usually very tentative, practical, and realistic about our life. But for some reason with this one, I got ahead of myself and didn't tap the brakes. Slow down. Realize that this sinus issue could be and probably is totally unrelated to Will's increased seizure activity. Just an unfortunate coincidence.

Tomorrow will likely be better than today. Over the next week, Will will continue to heal from his surgery, and by Tuesday, he should be breathing and clear like the day he was released from the NICU (I can't say like the day he was born!) This will be an improvement for Will, and will likely dramatically improve his health and happiness. But it is unlikely to change our next couple months of action... Johns Hopkins in early March for the epilepsy surgery consult.

Tuesday, January 17, 2012


Today went pretty well! Nate and Will arrived at the hospital on time, and then proceeded to spend the better part of the next 3 hours hanging out together as they waited for anesthesia. We called it "bonding time" rather than a really long wait. But shortly after the pre-surgery anesthesia consult and a quick chat with the ENT, Will was changed into a lovely gown and big socks and whisked away.

We were told that the surgery would take a total of 90 minutes, most of which would be eaten up with set up. They have to get the breathing tube placed, start the IV, administer the anesthesia, position his head correctly, and then figure out how best to get all their lights, fiber optics, and surgical tools up Will's little nostrils. No wonder he came out of surgery with two larger nostrils than he went in with!

The "your table is ready" pager went off almost exactly 90 minutes after he was whisked away. We could hear Will in the PACU before we saw him. He does not wake up from general anesthesia well. But who does? He was mostly just mad. It was not a pained cry that he was making. It was a "what the heck just happened to me... who are these people... why does my nose feel like it is full of packing material... where are my pants" kind of whine.

When we went to pick him up (in hopes of offering some comfort), Will's nose started to ooze yucky post-surgical stuff. I felt bad, but I had to keep gently wiping his nose to keep the ooze at bay. Thankfully it stopped after about 30 minutes.

We were able to calm Will down and he gulped down a small container of applesauce. I think it made his throat feel a little better after the breathing tube he had during anesthesia. They removed the IV and we started to get Will dressed.

Finally we saw the ENT! He told us that everything had gone as they planned. He did point out that when they opened up Will's sinus, what they removed didn't look like "typical fungus." By that he meant that what came out of Will's face, at least at first glance, looked like a terrible bacterial infection. No fungus. The culture that they took is the only 100% positive way to know exactly what had taken up residence in Will's sinuses, but those take 5 days to come back.

No fungus is good. Bacteria is typically much easier to treat.

So then we were discharged. With a prescription for an antibiotic, recommendations for pain relief (Tylenol!), awareness that they had used a disolvable packing in Will's sinuses and that would start to come out in the next couple of days, and a follow up appointment for a week from tomorrow.

Will was so much happier in the car. And then he spent the remainder of the afternoon a little out of it, but still happier than he was at the hospital. We are keeping up with the Tylenol, and things seem to be going well. Will keeps sneezing! We thought for sure this would be painful to him, but he just thinks it is hilarious.

We already notice that his breath smells better. He ate well this afternoon, though he doesn't want to drink. I think its probably difficult to drink when your face is full of packing material. Hopefully as that dissolves, Will's desire to drink comes back.

Thanks for checking in on us today, and for all the positive energy sent our way! Will proved himself a champ once again. He's on the up and up again! Just a little goopy.

Monday, January 16, 2012

Big day

Tomorrow is a big day for Will. He is on the OR schedule for early in the morning, for a surgery that will hopefully change his quality of life. We've got Will's pump going full speed right now, because he cannot have any more food after midnight. When we have turned off his pump early before previous surgeries, Will hasn't slept too well. I think he's gotten accustomed to sleeping with a semi-full belly.

I'm not too worried about that right now, because Will has been sleeping terribly over the past week. And turning off his feeding pump early isn't the culprit. We know it is another sinus infection, but there isn't much that can be done. No drugs will take this infection away. Sadly, even Mucinex isn't having an effect.

His face is full of something... likely fungus but it could possibly be just a huge mass of something else gross. It has to be painful. And I know it is hard to breathe. He's waking up regularly, with a sharp breath in, then a long pained cry. I feel so bad. We've been taking turns staying up to attend to him, trying to allow the other at least one night of uninterrupted sleep. It has been a long week, waiting for tomorrow morning to arrive.

I'm not scared about this surgery. I know that the days following the operation to open up Will's sinuses aren't going to be fun for anyone. But I feel confident that by this time next week, this surgery is going to make him so much happier, healthier and more rested.

So he'll go in first thing tomorrow morning. Thankfully the hospital schedules kids for first thing in the morning, so they don't have to go without food for too long. The procedure should last less than 2 hours, and as Will is recovering from anesthesia, we're hoping to be able to talk with the ENT. He should be able to tell us a lot immediately about the state of Will's sinuses, their fullness, what he saw, and what he did.

They will send the cultures away to determine exactly what it is that is growing in Will's sinuses and causing him such frequent infections. I am not sure how long those cultures take to come back, but the results will dictate how his ENT will proceed with treatment.

Keep Will in your thoughts and prayers tomorrow. It certainly won't be a comfortable day for Will, but it will hopefully be the first step on a long and airy, breathable, uncongested, fungus-free road for our tough boy.

Sunday, January 15, 2012

Geo genes

My dad has received a new World Almanac as a gift every Christmas of his memory - a cherished annual gift given to him religiously by his mom (Nana Jean). I should say every year but one. I say that because one time many years ago, Nana Jean thought that perhaps she didn't need to buy him an almanac for Christmas anymore. She never heard the end of it and resumed her annual Christmas almanac purchase after much good-natured chastising.

My dad is 58 years old. That's a lot of almanacs. That's a lot of facts. My family has always been into history and geography, and I think that Nana Jean probably recognized and encouraged that when my dad was very young.

We read almanacs and enjoy studying maps. Tell my dad where you need to go anywhere in the United States and he can tell you how to get there... he knows the Eisenhower Interstate Highway System by heart. Unless you like losing quickly at Trivial Pursuit, I recommend you turn down a game with him. Even if you're armed with a World Almanac and he is asleep. He'll still win.

A couple of months ago, Luke asked to see one of the outdated Rand McNally road maps that we keep in the van. I thought it was amusing that he would show interest so young. I told him that Grandpa would be so proud! He asked me to point out where we lived. Then we talked about where all our extended family lives. Afterwards, he could point to different states on the map and remembered who lives where.

For Christmas, Luke got a map puzzle of the United States. Despite our best efforts, Luke has never shown interest in doing puzzles. Not even when he was younger. I was totally shocked when he pulled this new USA puzzle out after New Years and asked if we could do it together. It said ages 6+, but we decided to give it a try.

Luke and I put together the outside of the puzzle together. We looked at the colorful box, and noted how each state had a funny shape and a unique picture on it (peanuts on Georgia, a football on Ohio, and a big boot on Texas). He clearly understood the task at hand. I took a step back to see what he would do.

All of a sudden, he was into puzzles. He kept consulting the box for which color or shape to go after next. He picked the big states around the bottom of the country to start out with, then worked himself north on the eastern seaboard, through the Great Lakes and Central Plains, and finished out the perimeter with the apple state of Washington. Then he filled in the middle. He was good! He obviously doesn't know the names of the states, their capitals, nor does he recall exactly on the map where each state goes... but just give him a couple of months and a weekend with Grandpa. I'm sure its just a matter of time.

It dawned on me that this might have been how Nana Jean felt 54 years ago, when watching her budding spatially-oriented kid and realizing that he too had the geo genes. I kind of got teary, thinking about it that way. Motherhood and pride and amazement still feel the same, no matter what year you exist in.

When Luke was nearing completion on the new puzzle, Matt tried to get in on the action. He would point to a random spot on the box cover, and then pat his hand on a random spot on the nearly-complete puzzle. As long as Matt didn't mess up any of the pieces that Luke had already placed, Luke didn't mind the attention.

When the last puzzle piece went in (that would be the great state of Arkansas), Luke beamed with pride. He completed this pretty challenging puzzle with minimal assistance from me... and I think he knew that his geo geek mom thought that was pretty cool.

Thursday, January 12, 2012

Sinus surgery

We just found out that Will has been approved for the sinus surgery that his ENT recommended. This is a relief. Apparently this surgery is often denied by insurance, but when the reviewers saw Will's sinus CT (100% blocked on the left and 95% blocked on the right), they approved him quickly. I was ready to fight for the surgery for Will but am happy to save that energy for another day... another fight. I am sure that day will come.

So Will's surgery is scheduled for Tuesday. It will take him several days to recover, but we expect that within a week of surgery, he will feel some wonderful relief. I cannot wait for him to experience that! I think this is going to be a great thing for him. Now we just have to wait for the surgery day. Then its a quick 90 minute procedure to go up through the nose, open up the sinuses, get a culture of whatever is growing in there, and clear it all out.

Couldn't come soon enough.... Will is very congested and likely has another sinus infection developing right now. Right on time.

It isn't until the sinus swab culture comes back that we will know how to proceed with Will's treatment. If you've done any Wikipedia searching of fungal infections of the sinus, you know that there are 4 different types and causes of these types of fungal infections. Each one has its own specific treatment. Some are long term, some are short term... just depends on whatever has taken up residence in Will's face.

Tuesday, January 10, 2012

Tough Mudder

Ask me if I am a Tough Mother and I'll gladly flex my biceps for you. Heck, if I am feeling goofy, I might kiss my flexed biceps and invite you to the Gun Show. That's just how I am.

But this Tough Mother ain't got nothing on the Tough Mudder... a traveling 10-12 mile obstacle course designed by the British Special Forces to test strength, stamina, mental grit and camaraderie. Even in my fittest of days, I think the Tough Mudder would have landed me on my rear end. Hard.

I was recently approached by my good friend Jaerid. He and I met when he was a freshman at the University of Rochester, pledging Nate's fraternity. Over the course of the next couple of years, we became great friends. We even got married within 2 weeks of each other back in 2003, and I was lucky enough to be a grooms woman in his wedding to his wife Kirstin. Kirstin is a special needs pre-K teacher, so together they understand a lot of what we're going through daily with children with special needs. They have two young boys, similar ages to ours.

Jaerid has been working really hard in the past couple of years to overcome some serious health concerns and get into better shape. He confessed to me that while he was training and feeling down about himself, he thought about Will and all the challenges that he has faced and overcome. And somehow that gave Jaerid the push he needed to keep going.

As the ultimate test for himself, Jaerid decided to complete in the Tough Mudder competition in Mt. Snow, Vermont in early May. Kirstin happily (haha, maybe reluctantly?!) agreed to train with him. Then Jaerid and Kirstin gathered a group of family and friends to help him train and compete in the Tough Mudder, and asked if they could form a team called Will's Warriors. Their goal would be to raise money to help us put Will into some programs that he would really enjoy, but that we might not be able to afford to do. These would include things like therapeutic riding programs!

Of course we were honored and said yes. We were grateful that our friends thought of Will. We feel blessed to have such caring and thoughtful people in our lives. I only wish that we could be there at Mt. Snow to cheer them through their Tough Mudder competition. They haven't ever had the chance to meet Will in person - just felt an intense connection through phone conversations and blog stories about what he goes through.

So if you have an opportunity, check out Jaerid's blog at Check out the awesome Will's Warriors page that they've set up at If you're so inclined, you can even check out the synopsis that I put together about all the challenges that Will has faced in his almost 5 years! If you're a new blog reader, it might give you some background into our little tough guy. And if you're a seasoned blog reader or have known Will for almost as long as we have, the look back on his life really reminds you how amazing that ear to ear grin really is.

Monday, January 9, 2012


Would you believe it... the reason for my blog silence over the past couple of days has been because I haven't been close to a computer! Somehow the stars aligned, the babysitter worked out, and Nate and I actually got away. Not for a couple of hours, not for an evening... for 2 days and 2 nights. A vacation! I almost forgot what that was.

Nate and I spent the past couple of days at Snowshoe Mountain in West Virginia... the closest good skiing mountain (according to several other northern transplant skiing aficionados we know) to central North Carolina.

We left early on Friday morning and spent the better part of the next 7 hours on county roads and switch backs, making our way first over the Blue Ridge Mountains and into the Allegheny Mountains before making the climb up Cheat Mountain to the resort. At first the skinny curvy roads were fun and the 18-wheelers barreling towards us exhilarating... but after a couple of hours of that, I was honestly just happy that we weren't getting car sick.

We arrived, checked in, suited up in our ski gear (snowboard gear for Nate) and headed to the slopes. It had been 3 years since we last hit the slopes at Elk Mountain in northern Pennsylvania. We were a little rusty, but not too bad!

We did well on the slopes (only 2 falls), braved some more difficult terrain on the second day, had fun shopping for souveniers, eating out, playing darts, and most of all... laughing. Thank you so much Oma for watching the boys, and for Stara, Joe, Michele, Susie and Kemp for helping her!

It was a little strange that there was no cell phone reception on the mountain. We soon learned that due to Snowshoe's proximity to the Green Bank Telescope, there are no cell towers or radio frequencies for a 13,000 square mile area! Talk about radio silence. There were no people walking around on their cell phones, all the kids were skiing instead of texting, and we actually had to use a calling card to call home! So nice in a way...

The boys did seem to miss us (Luke told me that when he "gets 5," he wants to come with us to go skiing) though they enjoyed all the time sans parental law and order. We got home on Sunday just as naps were ending, so we were able to catch up a little that afternoon before the week started again. Apparently they cleaned up the chaos before we got home, because things didn't look too bad around the house.

Of course the biggest concern for us when leaving home for a day or two is Will's care. Let's face it... caring for him is complicated and could easily be intimidating and scary. He is a challenge to feed, takes a number of medications, and has seizures that only Nate and I have experienced. Makes you want to sign up for babysitting, right?

To the best of my ability, but trying not to be neurotic, I developed a spreadsheet of each boy's typical day, including waking times, little habits and -isms, medications, preferred foods, and bed time routine. I gave Will his own page, including the all important sections of "How will I know if Will is having a seizure?" and "What do I do if Will is having a seizure?"

I say "all important sections" because unfortunately Will did have a seizure on Saturday night while we were away. But Oma, Susie and Kemp handled it in stride - they caught it early, read through my instructions, administered Will's emergency medication, and tested for sub-clinical seizures. They called us, of course, but all we could do from our hotel room was offer support and make recommendations for the next couple of hours.

I will be honest. I felt a little helpless and guilty for being away while Will had a seizure. I did not sleep well. My mind kept saying "if I were home, I'd be checking on him now..." But I wasn't home. I wasn't there. But now, a couple of days later when I stop to think about it, I am relieved that we were able to rely on someone else to assist! When you're never sure when the next seizure or shunt malfunction is going to be, it could be fear-inducing enough to keep you alone on your own couch for the rest of your life. I am grateful for the assistance, the confidence, the ability and the willingness of my mother to help us out! Thanks Oma!

Getting out and spending time together is essential for a marriage. A kick in the pants, a push out the door, a reminder that time away is important... thanks Village.

Wednesday, January 4, 2012

Always something

Will has had regular sinus issues - infections, drainage, congestion - for several years. He had his adenoids removed in March of 2010, after which time we saw some improvement. But over the past year, Will has had a resurgence of sinus issues. It hardly seems fair given all the other troubles he deals with!

He's been on several antibiotics, seen his regular pediatrician and the ENT a couple of times. Unfortunately for Will, when he's sick he also has an increase of seizure activity. And if that weren't enough, when he's sick and congested, he doesn't sleep well. It all gets very old for him... and for us. We like sleep too! We just don't seem to get a lot of it.

This last time Will saw the ENT, he recommended that Will have a sinus CT. His issues were just too regular, and the doctor wanted to see if there were any structural sinus blockages causing all of these issues. This didn't seem too out of the realm of possibility, because both Nate and Oma have had to have sinus surgeries in their lives for structural problems.

We got the results of the CT today. I was not prepared for the result!

The ENT said that Will's left sinus under his eye showed some abnormalities. He tried to explain the exact abnormality to me, but I didn't catch all the big words. The long and the short of it is that the specific type of abnormality that Will's sinus showed is (9 times out of 10) caused by a fungal infection.

Huh? What about the structural issues we were expecting? Nope, none of those.

The ENT then proceeded to explain all about fungal infections - the only way to get rid of them is surgery. There are no broad spectrum anti-fungal medications that will work. Under general anesthesia, the ENT goes up through the nose, opens up the sinus and clears everything out. They also take a culture while they have the sinus opened, so that they can understand the exact type of fungus they are dealing with in the case that they need to treat it with specific anti-fungal medications post-op.

I had so many questions. The first being: WHEN IS THIS KID GOING TO CATCH A BREAK?

Of course no Earthly person actually knows the answer to that question. But to my medical questions, I learned that fungal infections of the sinus are not uncommon (they are actually on the rise) and can be caused by any number of things. The fact that this is fungal also explains why antibiotics never really effectively treated Will's sinus issues in the past (it always seemed that the second he got off of the antibiotic, he was congested immediately).

There is a 1 in 10 chance that Will does not have a fungal infection. But whatever is causing these abnormalities on his CT is thick and gross enough to need to come out of there - fungus or not. And of course, they can't take a culture to figure out exactly what it is without surgery.

So... more surgery. By my quick count, this will be the seventh surgery of Will's life.

It's always something.

This is an easier decision than the epilepsy surgery. We can see something wrong diagnostically, and there's only one way to treat it. No brainer. How soon can we get on the surgery schedule? The closer we get to sinus relief for Will, the sooner he sleeps through the night and the fewer drugs he takes. And with Will finally being truly healthy for the first time in a long time, he should have fewer seizures.

I suppose to most people this would be a tough thing to stomach and as a parent, would be pretty scary for your child. After all, it is surgery. But to us, this is a real solution to a persistent problem... one that has its insidious fingers entwined in too many arenas of Will's health.

Where do we sign?

Monday, January 2, 2012

The road most traveled

I always think that the ideas I come up with are unique. I'm always thinking that the plans I make for the family are 'off the beaten path' ideas. I am usually wrong. Remember my perfect Christmas card picture park?

To get everyone out of the house for an afternoon, I thought it would be fun to check out Pullen Park in Raleigh. The park is 66 acres near NC State University and was established as a free public park in 1887, when the land was donated by a local business man. There is an amusement park on the property (the 5th oldest in the United States) which was recently closed for nearly 2 years for renovations. It reopened on Thanksgiving weekend. There is a train ($1 per ride), a carousel ($1 per ride), a small lake for paddle boating ($1 per ride), and several playgrounds. What amusement park is that cheap??

I never thought the park would be packed on New Years Eve. I figured that people would be at home with family, huddled around a fire to keep warm and ring in the new year, and watching football. Surely thousands of people didn't remember that the amusement park recently reopened and would all converge there at the exact same time as us. Too bad it was in the mid-60s and several thousand people DID have the same idea as me. Oh well. I am un-unique. Despite my best efforts, I sometimes choose the road most traveled. It doesn't always work out badly, though!

Once we found parking (took a while even with handicapped tags), we walked through the beautiful rolling hills, past the picnic shelters and the aquatic center and finally reached the amusement park. We could immediately see the line for the train, several hundred people long. Oh boy. Thoughts of turning back entered my mind.

Papa, Nate and Will (happy in a backpack) bought tickets for all of us, as Grammy, Aunt Kylie, Luke, Matt and I made our way to the playground areas. Wow. The renovations were beautiful. There were several playgrounds set up by age-appropriateness, and all of them had recycled rubber underneath them. Luke and Matt enjoyed their playtime. The rest of us chuckled a kid playing near Luke whose shirt read: I tried to be good, but I got bored.

Thankfully the train line moved quickly (at least 100 people fit on the train at a time). Before we knew it, it was time for our ride. Though Luke was excited for the train, I think that Matt might have been the most excited out of anyone. We loaded on the train and took a nice ride around the whole amusement park. Good $8 spent.

As we were deciding what to do next, I spotted the face of a friend from the University of Rochester (and fraternity brother of Nate's) who we haven't seen since 1999. After a couple of seconds of doubt (Raleigh is a long way from Rochester!), we realized that we knew each other. We all had a round of hugs and laughs, and caught up quickly on how we both ended up at this exact spot on the globe at the exact same time. As it turns out, one of their children is the kid with the I tried to be good... shirt that has been playing next to Luke!

Next we walked over the to the merry-go-round, which is a beautifully restored 1911 Dentzel Menagerie Carousel - one of only 23 remaining in the world. The line looked shorter than the train, but it was a little deceptive. Once you got into the building, the line wrapped 3/4 of the way around the carousel before you actually got a ride. Good time for snacks and for getting kids excited as they watched the animals go up and down!

When we finally made our way to the head of the line, everyone was excited to turn in their tickets and find a couple of animals together. Luke assured us that he wanted to ride a horse, and NOT one that stood still. Will stayed in the backpack, and Nate rode a horse with him. I stood by Matt's side to make sure he was doing alright - this was his first carousel ride. About halfway through the ride, he tried to slide off the saddle, so I stood him on the floor next to me. He quickly realized that the floor wasn't as exciting as the back of his magical horse, and put his hands up to get back up.

After the carousel ride ended, we took a nice walk around the paddle boating pond. Though there were thousands of people at the park, it did not seem too crowded. Luke took Will's place in the backpack for a bit. As we made our way back to the center of the park, the sun was starting to set and we decided to end our lovely afternoon at the park. Got to have some time to set up for our Rockin' New Years Eve!

Sunday, January 1, 2012

The day after

Christmas brings out a lot of emotions in people - happy, sad, lonely, loved, humbled, warm, and stressed. I found that even with our three young kids, there was a little bit of stress with the holiday. Between overwhelming gift-opening and being off of the regular routine, there were a lot of tantrums and tears during the day after Christmas.

We decided to get out of the house, spend some time together, release some endorphins, and enjoy the 55 degree December weather. Though we have tried other parks closer to our house, there is still nothing in our area that compares to Marla Dorrel Park and Kids Together Playground in Cary. It is a good 40 minutes from our house, but we find ourselves going back regularly because of the handicap accessibility and the fact that it is easy for Will, Luke and Matt to have a good time for a couple of hours.

Success! Will had a great time being pushed all over the jungle gym by Nate and Luke. Matt tested his chops on the 5-8 year old playground and held his own. And Luke just enjoyed running and squealing all over the place, thoroughly enjoying the change of scenery!

Seems like the truest meaning of Christmas to me.