East meet West

For the past several years, Will has occasionally been seeing a cranial osteopath. This is a doctor (D.O.) who has gone through 4 years of homeopathic medical school and uses minute amounts of pressure in his fingers to manipulate the bones of the skull to enable better flow of cerebral spinal fluid. Sounds scary, right? Especially when your child has a shunt.

The idea of seeing a cranial osteopath was first mentioned to me by Stara, who said that many parents in the Miracle League were doing it with their children with special needs. And while certainly not a miracle cure of any kind, it was helping those children in different ways. I was intrigued, so I did some more digging. My friend's sister is also a D.O. and said that cranial osteopathy is a very subtle experience (she had done it), and wholeheartedly thought that it might help with Will's moods. At this point, I mentioned it to my most trusted of Will's M.D. doctors and neurosurgeons ("western" doctors), who also gave cranial osteopathy a ringing endorsement. They told me it couldn't hurt anything and would most likely provide some kind of benefit.

Will was right around a year old when we first started going. The osteopath's office is located in the holistic health center with chiropractors, massage therapists and acupuncturists ("eastern" doctors). Not a hospital like we're used to! This was a new experience for us both. The guy put his hands on Will's head ever so gently, moved them around a bit between his head, neck, and base of his spine, and Will was just peaceful the whole time. To me, it appeared as though nothing happened. The osteopath said he thought that Will would feel better after the session, and he'd recommend coming back in a couple of weeks.

At first I was skeptical because it really appeared as though nothing had actually happened at the appointment. Anyone who knew Will back then will remember that he was a really crabby kid. Within a week of the first cranial osteopathy appointment, Will's general mood elevated. He was just happier. And then he started sleeping better after the next appointment.

I still thought it could be a fluke. I told people that we were seeing a chiropractor just to avoid funny looks when I explained where we were going. You talk about moving around skull bones and people get freaked out.

After about 6 months of appointments, the osteopath was familiar with Will. Just before Labor Day, he set his hands on Will and was immediately startled. He said that the typical "vibrating" that he usually felt in Will's head was gone. He wondered if Will was finally not nervous to go to the appointments. We just kind of shrugged it off.

That night, Will had his first shunt malfunction. I firmly believe that what the osteopath felt was Will's cerebral spinal fluid NOT moving through his shunt. This is something that typically requires a lumbar puncture or a shunt tap in the ER to diagnose.

After a couple more months of regular appointments, we decided that Will could be seen less frequently. Every couple of months, we would go in for a "tune up" and things would go well with moods and sleeping. After we moved, we were farther away and could go less frequently. But when Will is really having a tough time with being agitated or irritated or just crabby, we know it is time to make an appointment with the osteopath.

Will has his adenoids removed in March 2010. Before the surgery, he was sleeping well through the night. We expected him to sleep poorly for a couple of nights after surgery, however several weeks after the surgery, he was still waking several times per night. We took him to see the osteopath, but didn't mention anything about the surgery. He put his hands on Will and immediately asked if Will had had surgery any time recently. The osteopath could feel where Will's neck had gotten "bound up" when they tipped his head back for the breathing tube during surgery.

Kind of spooky, right?

Over the past 10 months, Will hasn't really needed to see the osteopath. He's been in a pretty good mood most of the time, tolerating changes in life, and continuing to advance. But for the past couple of weeks, he has been really crabby. He spent one whole day at school just screaming. He hasn't been sleeping well again. It dawned on me that Will needed some cranial osteopathy.

We went in today for an appointment. Will laid down and was immediately calm. I think he remembered the office. The osteopath laid his hands on Will's head, then lower onto his spine. He asked me if Will had had a virus in the past couple of weeks, like one with a high fever.

You mean the one that he had less than 2 weeks ago?!?! Seriously. The virus that started Will's night of seizures gave him a fever of 103.

The osteopath manipulated Will's head, neck and spine as I had watched him do for so long. Will was unusually tolerant. And when we left, Will was happy. And he stayed that way for the rest of the day. He was happy through physical therapy, and went to sleep without a peep.

I already have our next appointment set up. We'd like to keep Will at a happy place rather than get to a low place before we go again!

I wish I could tell you what undergoing cranial osteopathy felt like, but I don't know. All I know is that it allows Will to be in the best mood possible to tackle his life. Read about it here if you're interested.

Better than coffee on your Monday morning

I am finally through October in this scrapbook! I have come across so many blog-worthy photos from that time that just never made their way into cyberspace. But this one I just couldn't resist putting up. Hopefully it makes you smile on this Monday morning!

Buttonpushing

It has now been a week since Will's night of seizures. Thankfully it has been a relatively uneventful week (aside from Luke taking a big step in sleeping through the night sans diaper like a big boy!). We all still seem to be recovering though. The nights aren't long enough for all of us to catch up on the sleep we lost and the stress we went through.

After we were released from the hospital, we started to notice that Will was more agitated than usual. This was a bit concerning, because our fear with seizure activity is that they will cause more brain damage in him. Over the weekend, it occured to us that the periods of extreme unhappiness and whining would go away when we fed him. And he wasn't eating his normal amount, he was just insatiable.

So rather than continue with the whining to let us know he was hungry, we brought out Will's old friend, the Big Mac. This is a large yellow recordable button that we have used in the past to enable some very simple communication. I recorded the message "more food please" and velcro'd it to Will's tray.

You could have seen the smile that erupted on that kid's face from the Discovery.

We had to position the button so that Will wouldn't inadvertently hit it. He had to work hard to hit the button, but we were right there with the food when he did. He has been doing well with this over the past couple of days, getting better each day with reaching for the button, and keeping us on our toes because he wants a new mouthful of food so quickly! Chew, swallow, BAM! More food please. Then he'd get just a little loud if we weren't quick enough.

Will's back. Phew!

Name this face - a solicitation

Matt makes this face all the time these days. He particularly enjoys making this face while watching his singular little baby tooth finally come in. He also enjoys making it while refusing to eat food from a spoon and only being willing to feed himself finger foods. He scrunches up his face, squints his eyes, smiles a little... and waits for you to do it back to him.

So, because this Slavik family is all about nicknames and inside jokes, I'd like to see what kind of funny names our constituency comes up with! What would you have us call this face? Feel free to post a comment directly on the blog! Voting is encouraged if you can't come up with something funny of your own.

Eating machine

Since Will was hospitalized in early January, he has been an absolute eating machine. The two days worth of jet fuel laxative really must have kick started his appetite. Around the same time that Will got home from the hospital in January, Oma came to stay with us while Luke and Will tracked out. We sent her to one of Will's feeding therapy appointments, and it became her personal mission for the duration of her 3 week stay to push Will as far as the feeding therapist advised. Perhaps more.

This was probably good for Nate and me. Sometimes as a parent of a special needs child, you feel like you're constantly pushing. Pushing them to do more, reach more, eat more, stretch more, sleep more. It can be exhausting, and can really wear on you sometimes because it is hard to just step back, have fun, and just parent. I am not sure how physical therapists and drill sergeants do it, because constantly cracking the whip and being the bad guy isn't my forte!

So the timing couldn't have worked out more perfectly. Will was more hungry than ever, and he had a motivated drill sergeant... um... I mean major. Sorry Mom.

All of a sudden, Will was drinking 20 ounces of Pediasure during the day without really pushing him. We used to struggle to get him to take 10 ounces, and at that point, we were really needing the g-tube to make sure he got enough nutrition. It was amazing!

In addition to that, Will started trying all sorts of new solid foods. Because we were a little concerned previously to push him too hard with solid food, we were stuck with Stage 3 baby food for like 2 years. Believe me, Gerber doesn't make enough variety of baby foods. Even so, Will liked it, and it wasn't difficult for him to eat. I am sure he liked not being pushed. Though he was eating basically the same 4 foods all the time.

Well now, his diet reads like a strange menu at a leftovers smorgasbord:

• Bananas (cut to the size of a dime)
• Canteloupe (did not like AT ALL)
• Homemade applesauce (very chunky, skin removed)
• Sweet potato (baked and mashed, sometimes with marshmallow)
• Regular potato (baked and mashed)
• Many varieties of yogurt
• Ice cream (liked it once he got over the cold)
• Spinach omelette
• Goldfish crackers
• Mozzarella cheese (cubed small)

And the true kicker,

• Meatball (his Italian father couldn't be more proud)

So because of all this increased calorie intake, Will is really growing! He isn't BIG by any stretch, nor do we want him to be. But for a long time, he was stuck in the 10th percentile for weight for his age (31 lb). In the past two months, he has jumped to 34 lb... almost 25th percentile.

It is crazy to think about, but depending on the next round of regular doctors appointments around his birthday in March, we might be instructed to limit the amount of Pediasure he gets at night in the g-tube. He already doesn't use the g-tube for feeding during the day. I don't want to get too far ahead of myself with that thought, because no one has indicated that would be our next step yet. But you can't blame a mom for hoping.

Oh! And the photo at the beginning is the one I snapped of Will outside of the ER earlier this week, right after his release. He was happy to be going home.

They left his shoes...

Yesterday was a pretty bad day for Will. He still wasn't feeling 100% better from a virus that sent him home from school earlier in the week. He was a bit gaggy with mucus when he woke up. But he was excited to get on the bus and go to school.

After school, Will had a note in his bag from his teacher saying that she thought he might have had a couple of very small seizures that day. He would kind of zone out for a couple seconds, then his eyes would roll back in his head, and then he would be back. It wasn't something that I was too concerned about. It didn't sound like his typical seizure.

Nate and I had grand plans for Thursday night. We have a very long backlog of DVRed shows to watch together. This week has just been so crazy that we were looking forward to sitting down and vegging together. But of course, I had to upload some photos first, so I was in the office and Nate was downstairs waiting for me. Sighing loudly.

I heard Will sputter and vomit from the next room. He's had a couple of seizures that have been all the same, so I know that when that kind of sound comes out of the room within 30 minutes of bed time, Will is having a seizure. I called Nate and we got Will into the bathroom. He had his seizure typical left side facial paralysis.

He continued to vomit for a bit, longer than usual. He calmed for a second, and then seemed to have another seizure. He was so out of it. Wide-eyed. Gaze to the left. Lips smacking. Teeth grinding. Sounds of my fear. Will's left hand started to jerk. That had never happened before.

Will seemed to come around after about 10 minutes, though it seemed like a lot longer. We got Will stripped down to clean off the vomit when he launched into another seizure. Number 3 by my count. This time, Will's entire left arm was jerking slightly, as well as his head. Still, the lips were going and the teeth. Oh, those teeth. I tried to bring him around, but it wasn't doing any good. Nearly 30 minutes had passed. He was naked in a diaper, in my arms, his little body out of everyone's control. We were trying to talk to him, touch him, anything to get him to respond. Nothing. I have never felt so helpless.

When the fourth seizure started, worse that the previous three, I called to Nate to dial 911. These seizures weren't stopping. We couldn't do anything for Will. And I didn't want to risk the time it would take to drive him to the ER ourselves. The fire department arrived first, within 10 minutes (again, felt longer). They drove down the street quietly at Nate's request, as to not wake the other sleeping boys in our care. They administered oxygen to Will, which seemed to slow his racing pulse.

Will's seizures wouldn't stop, though. The paramedics arrived shortly thereafter. We held Will still while they tried to put in an IV. No luck.

They administered versed via a nasal mist. It was enough to stop Will's twitching, though he never truly seemed to lose the wide eyed, large pupil look that he had for the past hour. They strapped his car seat onto the stretcher, strapped him into his car seat, wrapped in a beach towel. We debated having them take him all the way to UNC. The ride seemed so long given how long everything had already been going on. We opted for the WakeMed Pediatric ER, much closer to the house.

By the time they had the stretcher loaded in the ambulance, the fire truck was gone. Will was asleep. Nate jumped in the rig and I kissed them goodbye. They pulled away silently. I stood in the doorway and cried. Useless. Helpless. Torn between wanting to go and needing to stay. Luke and Matthew were still sleeping inside.

When I finally calmed down and peeled myself away from the front door, I turned around to a living room in disarray from everything that had just happened. Feeling as helpless as I did, I started to clean up. I threw away needle covers, adhesive and gauze pads, straightened the couch. I made some phone calls. I went to wash Will's vomit-covered pajamas only to remember we were out of laundry detergent and I had decided to get it tomorrow instead of today.

And then I came upon them. Will's shoes. In all the hustle and craziness, we had forgotten to pack them. Now from a rational perspective, Will doesn't need shoes. For a long time, he didn't tolerate them. He finally tolerates them now, and we put them on as much as we can.

But in my emotional state, Will should have had his shoes. I lost it. Crying again. That helpless, useless feeling. I decided to document the shoes. It seems silly now, but at the moment I did it, I felt like I was paying homage to my son. Like it was somehow honoring him and his strength and growth, his future. His smile. I took out the camera and took photos of shoes. Somehow, it calmed me down.

At the hospital, they gave Will some additional anti-epileptic medication. They got an IV started, drew blood for labs. He still had some jerking in his legs, but the stronger medication stopped that quickly, and Will was finally able to sleep. They did an x-ray to make sure he hadn't inhaled any of his vomit. The doctors admitted Will for observation, though there were no available pediatric beds. Nate spent a rough night in the peds ER.

This morning, I got Luke and Matt ready for day care. Luke was not himself. "Where is Daddy and Will?" he kept asking. I tried to explain that they were at the doctor because Will was sick, and that he was going to day care for a day of fun. He didn't want to hear that.

"Mommy, I don't want to go to day care today. I want to stay here and wait for Daddy and Will." For a kid who has speech and language delays, I was in awe. What a comprehensive and compound statement. And do you know a three year old with that level of understanding and compassion?

Luke really was remarkable this morning. When we arrived at day care, one of his best friends was standing there crying, while Luke walked in crying because he didn't want to be there. He saw his friend crying, dried his eyes, and went over to give her a hug and ask her what was wrong. By the time I left, Luke and his friend were laughing over her Minnie Mouse doll. What a kid.

Back at the hospital. Will's labs revealed that his current anti-epileptic medication was below "therapeutic" levels. We believe this to be due to the fact that Will has been eating like an absolute champ over the past couple of months, and has been gaining weight like never before. So his medication dosage hadn't been increased for his new weight. Additionally, seizure thresholds are lowered when you have an illness. Will just got over a virus earlier this week.

So what happened was basically the perfect storm of seizures.

After the strong medication wore off, Will was back to being himself. Though it took a while, they did discharge him today. He's still groggy, which is to be expected after the huge physical toll his body experienced last night. We got him home, gave him that bath that he was supposed to get last night, and put him to bed. He's now curled up happily in bed, slow steady breathing, and peaceful. Finally truly resting.

Scrapbook mojo

I am perpetually behind on my scrapbooking. It seems like whenever I "catch up" to present, something comes up that leads me to get behind again. It is frustrating because I would love to stay at the point where I am only a week or two behind, but 6 months is more the norm these days.

I scrapbook because I really enjoy it. I don't care that it was voted Maxim magazines most "unsexy" hobby. I hate the idea of pictures in a box or a drawer or stuck on my computer. I like to think that one day, the boys will look at the books and realize how much fun we had and how I seemed to have a camera surgically attached to my face most of the time. I also scrap because I have an awful memory. Taking pictures and writing notes about things that we did really helps.

My 2010 scrapbook had been stuck in late June since about August (the last time I almost caught up to present). Just a couple of weeks ago, it suddenly occured to me that Luke and Will's 4th birthday was coming up. I like to put scrapbooks out at the party so people can thumb through them. I couldn't allow myself to feel the mama guilt with having a scrapbook so out of date (such rules I impose upon myself!).

So suddenly I found my scrapbook mojo. In a matter of three weeks and a couple of trips and night at Archiver's, I am already at the end of September! The party is March 12... I think its gonna be close. The goal is to have 2010 complete.

Here are some photos of some of my most favorite scrapbook pages from the past couple of weeks.

The yang to my yin

Something about mothering a child with special needs has turned this formerly peace-loving Taurean non-aggressive Sheep into a fighter! Ok, not really a fighter in the physical sense, but definitely more assertive, direct, and less tolerant of people's crap.

Will's class was recently befriended by a class of 3rd graders who come in a couple of times a week to play with the special needs pre-K class. Nate and I are so supportive of this program because Will responds so well to it, but also because it is teaching a new generation of kids to be accepting and understanding of children with special needs. I am not sure why they chose 3rd graders to focus on... perhaps this is the age right before the age of the Mean Girl? Elementary school teachers, please, elaborate and educate me.

On Valentine's Day, Will came home with a bag full of Valentines from his 8 year old lovelies. Most were your typical run of the mill $1.99 for 32 Toy Story valentines. One was handwritten on a piece of notebook paper. I thought it might be love.

I was wrong.

The heart-covered note read:

Dear Will,

Hi Will, Happy Valentine's Day. I'm very sorry about you and the others. I sent them a card too, to tell them sorry about all they had.

Sincerely, your friend

PS - I am very very very very sorry.

I know that the author is 8. I know that the author meant no harm. I know that it is entirely possible that I am over-reacting. But something about that note made me sad and really angry at the same time.

I know that Will has special needs. I know that Will's life is going to be a perpetual uphill battle with new challenges each day. I know that in the grand scheme of life, this is a drop in the bucket. I know that when we walk through the grocery store, kids will stare because they want to ask what's wrong with Will. I know that those same kid's parents will stare because we embody their fears. Some will smile. Some will stare. It is how I react that sets the tone. I know all of this.

I also know that we work very hard to create a safe haven in our home. One that is free of stares and fearful looks. And something about this note felt like the outside world wrapping its sinewy pervasive weeds around my happy garden.

My immediate response was to email Will's teacher. Ask her why had she allowed this to happen. Ask if they had even bothered to screen the Valentines before sending them home with the kids. Surely other parents had found the same note and were feeling the same way we had. I had all sorts of fighting type of responses ready to go. Snappy come backs. Statistics. Prejudice. Laws. I was ready.

And then, to my good year of the Rabbit fortune, my cool, calm, collected Leo Snake yang walked into the kitchen and asked me what was wrong. I handed him the note. He read it with a studious look.

"The author clearly doesn't understand the point of the program. She might need some more guidance."

WHAT?!?! No anger? No "mama bear claws," as Julie so accurately put it years ago when going through a similar type of experience with her son Jack? That's it? He was so calm that I was silent. Disarmed. I had been yanged.

We talked at length about how we wanted to be positive about our response to this note. We didn't want to let it go without making mention of it to Will's teacher, but we also didn't want to blow it up to the point that they cancelled the program. It's a fine line. Will and his classmates get a lot out of their interactions with older, typically-developing kids.

In the end, we wrote a letter to Will's teacher, explaining that we thought some additional guidance might be needed for the 3rd graders. The Valentine note made us realize that the author really couldn't see past Will's disability. She felt like she needed to say sorry (repeatedly) rather than simply wish him a happy Valentine's Day. The point of the program is to look past the disability and see that just because these pre-K kids can't walk or talk doesn't mean that they aren't kids too.

The letter goes with Will to school tomorrow. I am hopeful that the response is positive. We went through 3 edits before arriving at the final product. Both yin (me) and yang (Nate) edited. Hopefully it isn't misunderstood. And hopefully I can learn a bit from my husband and find a better balance between passive and aggressive. For Will's sake, I want to be the best advocate I can be.

Prepping for the big day

Who doesn't love Valentine's Day? Who doesn't love cookies? Who doesn't love Valentine's Day cookies?

Ever since we decorated cookies for Santa, we knew we needed another excuse to make sugar cookies and pull out all the sprinkle-covered stops for an upcoming holiday. Lucky for us, Valentine's Day was just around the corner. I bought all the sugary ingredients weeks ago, made cookies this morning in various heart shapes, and we settled down for some decorating fun this afternoon. Even Matt got in on the action (just a little pre-first birthday cake eating test... we don't want a Luke vomit repeat)!

Fun fun fun, followed by sugar crashing all around, followed by three boys sleeping very soundly tonight!

Life gets in the way

Things around here are hectic! Boys in school, parents at work, making time to eat, finding time for all to sleep in between everyone waking up, attempting to scrapbook so I am not perpetually 5 months behind life... sorry there haven't been any Slavik updates over the past week! Hopefully tomorrow I'll have an opportunity to sit down and script about the things that have been going on. In the mean time, a photo of Luke (mid temper tantrum) at Umstead State Park. Sure, he looks pathetic, but it will sure make you crack a smile!