Wednesday, November 30, 2011


We met with Will's neurologist today. First to discuss his seizure on Monday, and second to put together a plan for managing the next couple of months.

Our neurologist is a very no-frills kind of guy. Serious. Statistical. Stoic. First thing he has me do is explain Will's seizure on Monday. Then we walked through his seizure disorder progression from June 2010 to present. He nodded and took notes. I felt emotional.

So after taking him through a description of the seizure, we start to discuss the seizure medications that we have tried with Will. Medications that haven't worked. Neurontin. Keppra. Carbatrol.

Though it seems impossible, Neuro Doc's face turns even more stoic. Then he tells me:

When treating seizures, after you have tried and failed with 2 different medications, the likelihood of actually finding a medication that controls the patient's seizures is less than 10%.

This is not the news I was hoping to hear. I wanted options, plans. I don't expect promises. But I was certainly deflated by this news. He turned back to his notes for a minute.

When you deal with bad news regularly and doctors who aren't always sure how to give it, it would be easy to get upset or implode or deflate when getting MORE bad news. But I came for a purpose. I reinflated.

OK so maybe we won't ever find the perfect medication for Will's seizure disorder. But what are the other options. Surgery? Diet?

Immediately, he loses his stoicism. He became animated, excited. He starts telling me what when you've gotten to this situation with medications being ineffective, surgery is the next option to discuss. Though the thought of more neurosurgery is scary, part of me felt some relief that after multiple failed medications, we were not out of options.

Neuro Doc goes even further to tell me that whenever we make the decision for surgery, he would support it and would start the referral paperwork. I guess statistics and history are really against us coming up with a medication combination that will control Will's seizures.

As you would expect, the epilepsy surgery is very involved, comes with risk, and takes months to prepare and plan for. I will go into the details of the surgery in a later post, because at this moment, I have a lot of research to do before I will feel comfortable explaining it.

In the mean time, we decided to keep Will's carbatrol dosage the same and increase his dosage of Lamactil. Will currently takes 5mg of Lamactil per kilogram of body weight. The maximum dosage allowable is 20mg of Lamactil per kilogram of body weight. Therefore, we have a lot of room to increase his dosage, but we have to do it slowly to avoid potential side effects. If we get to the point where we exhaust the maximum dosage of Lamactil before we've made the decision about the surgery, there are 2 other drugs remaining that would be good candidates for Will's seizure control. Unfortunately they have intense side effects and that whole 10% chance of working makes things seem a little futile. But of course that won't stop us from trying.

There are a lot of very good hospitals that do the surgery that was proposed for Will. The 'best of the best' in the eastern half of the US is the Cleveland Clinic. Do we have any followers who have experience with the Cleveland Clinic? I would welcome any insight into the hospital, surgeons, etc.

We have so much to think about. And for the third time in the past 4 years, we're in the uncomfortable position of having to make a decision about a potentially life-altering surgery for Will. I am happy that we have options, thankful that we have time to research those options, and glad that we've had time to develop an understanding of medicine over the past couple of years, so that we're able to think this through and really understand the ins and outs of the surgery.

Monday, November 28, 2011

Day of drugs

It is 7:45p. All the boys are asleep. It has been a long day. I am afraid I am sounding like a broken record.

Will had a rough night of sleep last night. He has never been a good sleeper. Heck, I wouldn't even ever classify him as a fair sleeper. Will just does not sleep well. But over the past several nights, he has gone from waking 3 times per night to waking 8 times per night. This is not only tiring for Will, but for me, Nate, and Luke - who shares a room with his twin. Thankfully, Luke has learned to sleep through most of Will's nightly noises. But this morning, I could tell by the circles under his eyes that things were starting to wear on him too.

Will is typically the last one up in the morning. Luke usually walks into our bathroom around 5:45a. Matt is ready to rise around 6:15a. I usually go in to give Will his morning medicine around 6:30a, and wake him up about 15 minutes later.

Things went almost typically this morning, except we were all yawning a lot. I hadn't finished my first cup of coffee yet when I went to wake Will up. But he was already awake. Eyes and neck fixed painfully to the left.

Dammit. Seizure.

Thankfully I had been in the room less than 5 minutes beforehand, giving Will his medicine. He was not having a seizure then, so I know he had not been seizing long. But Will's seizures usually happen at night time, in the 30 minutes after he goes to bed. To have one in the morning upon waking is really very strange. New. I don't like new.

Without thinking, I grabbed Nate, got Will's intranasal Versed, started Luke getting dressed and got Matt a waffle. The brothers were none the wiser about what was going on.

We administered the Versed. Will started to gag. He vomited a little. Not a lot. But just enough that I wasn't sure he kept the medicine down. I pulled out the rectal Diastat, our second line of defense. Thankfully it works quickly - typically in 8 minutes.

Will was out to the world. We checked him for subclinical seizures (he had none). Nate took Luke and Matt to school and I waited it out with Will. It takes hours for him to rouse after a seizure, and the emergency medications. I got in contact with the neurologist.

He slept noisily. He finished up a 14 day course of antibiotics for a sinus infection on Thanksgiving. He was doing pretty good. But here we are, 4 days later, with a nose full of thick green goo. I was hesitant to give him a decongestant, given the meds in his system. I called the ENT.

Oma took over duty around lunch time. Will had come to, but was very low tone. He drank milk and ate, thankfully, and seemed back to himself. I heard back from the doctors.

The ENT could see Will this afternoon for a nasal swab. Yum. Unfortunately it takes 3 days for the culture to grow and the ENT doesn't want to prescribe any more of the "wrong" antibiotics to Will. So we have the go ahead to give him Mucinex until they know exactly what bug he's harboring in his sinuses.

The neurologist indicated that we will likely increase Will's Lamactil dosage again. We have an appointment on Wednesday to go over the plan, and to see if there is any way that Will's shunt is playing a part in this ever increasing seizure drama. Seriously. We have gone from 1 seizure per month to 3 seizures in less than a month. It is too much. We have to figure out what is causing them and do a better job controlling them.

So Will is back asleep, happy for the relief that the Mucinex brought him tonight. He's had a day full of drugs. I wish it wasn't this way. I wish we could do more, figure out the unknown, and make it all better... more manageable. I am not asking for a miracle. I'm just asking for relief for this boy.

Sunday, November 27, 2011

Giving thanks

We're thankful for...

Grammy card games

Cooperative, loving brothers (if only for a moment)

The only picture of Papa woodworking... ever

Smiles (the ear to ear variety)

Opa's ear scratches


Oma's pies

A wonderful, supportive family... around the table and beyond

Tuesday, November 22, 2011

Will the Champ

I think the post title says it all. My boy was so brave and strong today, and he was amazing through his Botox injections. Collective sigh of relief before I continue with the story. 1-2-3... deep breath. OK. Better? I finally do!

I picked Will up from school in the middle of the day to get to his appointment. He was having a great day. I felt bad to be messing with that! We drove to UNC and arrived right on time for the appointment. I was full of anxiety, mostly just because this was a new experience for us. Will seemed a little anxious too. Normally I would have fed him while we waited to be called back, but I thought it was a bad idea to feed him right before he got several shots. I didn't want to have him vomit on top of all the needles and pain.

When we got into the room, Will's mood plummeted and he was very loud and unhappy. I am pretty sure that he sensed that something 'not so pleasant' was about to happen. Thank goodness I recently learned about the beauty of YouTube Mobile. I found a couple of Elmo's World shows and Will was as happy as could be.

The doctor came in with three assistants. This was serious. They walked me through the plan - basically based on Will's weight and measurements of his muscle size, they injected a very calculated, therapeutic dosage of Botox into the center of each hamstring and hip adductor. They said the whole thing would be over in less than 2 minutes.

They did one last check of Will's muscle tone to ensure that he needed the Botox. His hamstrings were so tight that the doctor could barely lift Will's legs. This was the right course of action, without a doubt.

One assistant held Will's right leg, another his left, and the third readied all the syringes. I sat by Will's head, diverted my eyes from the doctor's penetrating needles, and focused on laughing with Will over Elmo and Mr. Noodle. As the assistants held his legs tight, he knew something was up and tried to tense up. Thankfully I had taught them how to roll Will's foot into the middle so he couldn't push out and hurt himself with the needles in his legs!

When Luke and Will were little, we took them into the pediatrician once per month during flu season for a shot of Synagis, to prevent RSV. Between that and standard immunizations, I am used to the crying that accompanies them. But today was a little different in that there were 4 shots, back to back. With the pediatrician, they try to inject all at once. Because the Botox is so calculated and exact, this was not possible.

The first needle penetration shocked Will at first and he did not cry. He tried to focus on Elmo. I think that if that were the only shot, we would have gotten through the whole thing with no tears. With the second needle, Will's volume went through the roof. Elmo was no help. The Wheels on the Bus couldn't move that mood. Will definitely was hurting. I kept singing and hugging his head, wiping away tears, and counting down with the doctor as they released the Botox into his muscles one by one.

Finally, the last needle was out. They put 4 very cute, very special Sesame Street bandaids on the 4 puncture marks. I kept hearing comments like "Will did so well!" and "What a brave boy!" I couldn't agree more. Will cried for another minute after the needles were out. I think he just wanted to be sure they were done before he stopped. I got him up on my lap, and together we watched the last Elmo's World episode. Will was attentive and laughing. He was good. I was forgiven.

The Botox is supposed to take about 1 week for results to be noticeable. The peak effect is reached around 1 month after injection, and after that time, the effects slowly fade until 4-5 months from now, when Will returns to being stiff. During this time, we need to really push Will to stretch more because his muscles are not tight and we can make headway with stretching them out. If he is limber enough, then Botox isn't necessary anymore. Not sure if this is possible with Will, but it is at least the goal.

As I was putting Will's shoes on, I could already feel a slight improvement in his tone. Maybe I was making this up because I WANTED there to be an improvement. Who knows. We stopped at Oma's house on the way home to see how their unpacking was going. Will sat comfortably on Opa's recliner and Oma fed him Cheetos. His legs were all tangled up in each other, completely relaxed. Completely abnormal. When we got home and I laid him on the floor, Will kicked like he used to back when he was 2. He hasn't done that in years. Perhaps his muscles have just been too tight. I wish he could tell me.

There appears to be no further pain from the shots, except when I removed the Sesame Street bandaids. Will was definitely not a fan of that! But it is over, it is done for now. For the next couple of months, we will have an easier time of stretching Will and are looking forward to seeing his progress and excitement as he is able to move his muscles with less difficulty. Thanks for keeping him in your thoughts and prayers today!!

Monday, November 21, 2011

On pins and needles... but mostly just needles

Will is having his first Botox treatment tomorrow. No, he isn't getting his crows feet taken care of... he's having injections directly into his hamstrings (back of thigh) and hip adductors (inner thigh).

Botox reduces the transmission of nerve signals, which causes the surrounding muscle to relax. In your face, this allows your muscles to relax and thereby reduce the look of wrinkles. In larger muscles, the Botox causes the muscles to lose rigidity.

This would be bad for most of us, whose muscles tighten and relax when we want them to. But for someone like Will with spastic cerebral palsy - when the muscles are uncontrollably tight all the time - the ability to loosen muscles can be a God send. Imagine trying to walk around all the time with the worst Charlie Horse in both your thighs. Think that might be tough?

Will's last x-ray revealed that the tight muscles that he has in his hamstrings and hip adductors are causing his hips to deform slightly and pushing his knees closer together. This really makes walking difficult, and if left untreated for a long time, would make it impossible for Will to ever walk. We can treat this now and the Botox will release these muscles - allowing Will's hips to continue developing normally.

In recent months, Will has made enormous strides in physical therapy. He is clearly motivated to walk with assistance, and is initiating steps on his own. He knows what to do. But because his muscles are so tight, he can't seem to stop his legs from getting tangled up in each other. His doctors and physical therapists all agree that if we can loosen Will's legs, his progress in PT will increase dramatically. And with success comes confidence. It is a win-win.

Of course there are risks with Botox injections. It is a toxin, after all. There are a lot of strong opinions about its use in medicine because of this. But before you pass judgment, I ask you which is worse? Using small amounts of Botox to allow Will to feel walking success and less pain OR allowing his tight muscles to continue to stress his hips to the point where he needs painful surgery to correct it?

The treatments last 4-5 months on average and results are best in the first couple of years. This is not a "forever" fix. But this is a critical time in Will's bone and joint development, and we need to do what we can when we can.

Please keep Will in your thoughts and prayers tomorrow as he very bravely undergoes 4 long needle pricks. It won't be the most comfortable thing for him, but in discussions with other mothers of children with CP who have gotten Botox injections, there have been nothing but positive comments and smiles from their children (smiles with the results... no one really likes getting the shots of course).

Sunday, November 20, 2011


We took Christmas photos today with my cousin Stephanie. I found the perfect park several weeks ago, just a couple of miles from our house. A kind of vacant park with an old pecan grove, a barn, stone wall, and several abandoned tobacco curing buildings. Seemed like they would be a nice backdrop to a family photo. Very out of the way. Very few people.

We arrived this afternoon in our winter finest... though the temperature was a cool 72 degrees. We were overdressed for the day (sweaters, button-down shirts... you know, winter wear) but looking pretty good. I was ready to show off my perfect, out of the way, and "nobody knows about it" park.

Only apparently everyone knows about it. And everyone brought their photographer today. To do their Christmas photographs. With the pecan grove and the stone wall and the tobacco barns as their backdrops. Everyone. Including Santa - though I think he was shooting promotional photographs, which is in and of itself funny.

So we waited our turn to take photos at various places. The boys were as good as the boys could be. As with other years, Steph does her best to get all of us looking at the camera. If we're really lucky, everyone's smiling. Matt got grass stains on his pants. Will tolerated us for a while before letting his true feelings be heard. Luke was distracted by Santa. It was a photo shoot with 3 kids under the age of 5.

Christmas cards are still several weeks away... so here are a couple of teaser photos that didn't make the card cut. Some good, some bad, some downright laughable.

Thursday, November 17, 2011

Sharing the love

Biologically, Nate and I are not an uncle or an aunt. But as I have posted about before, we're lucky to have some very good friends whom we consider to be like siblings. And therefore, their kids are our nephews. In the past year, our two best couple friends have become parents for the first time (joining us in the chaos).

We invited these friends to our house this past weekend - not really an easy feat as one set lives in Charlotte and the other in Binghamton, NY. But, everyone was willing to travel and we were excited to host. We moved around beds, set up cribs, and that was pretty much it. Everything's already child-proofed. Bring on the extra kids!

By Friday of last weekend, we had a very busy house. 6 houseguests, but good thing for Luke, there were really only 4 names to remember (we had 2 Jennifers, 2 Andrews, a Martin and a Chris). It was a lot of fun, so low key, and surprisingly relaxing... how? Not quite sure, but it was! At any given point, you weren't really sure who was going to be holding onto which child. And for the first time in a while for us, we returned to having adults outnumber children.

We tried to take as many group shots of the boys as we could. We took them all to Hill Ridge Farm for the last open weekend - everyone loved the corn crib, slide, and train. Jen, Martin and Andrew brought Binghamton Senators t-shirts for all the boys, so we got a shot of that too. Point, cheese, flash... so many cameras! So what if no one is ever looking at the same one...

After Will's seizure the night before arrival, it was great to have good friends around to share the experience and have a little distraction. It was so fun! There were 2 bad things about the weekend though... the first was that it went by too quickly! It isn't often for us that we're surrounded by such great friends. The time went fast and before we knew it, everyone was loading up cars to get on the road and we were staring at 8 loads of laundry.

The other bad thing was that several were sick in our party, so by the end of the weekend, the remainder had caught whatever "crud" the others had. Like I called this post... just sharing the love. Oh well. Totally worth it.

Wednesday, November 16, 2011

And still no balance

Will has had 3 seizures in the past week. The first two were on the same night, and Nate took Will to the ER. The third was less than a week later. Will has never had this frequency of seizures before. He never had any before last June, and since that time has been averaging one per month.

We caught the latest seizure early, as we have been lucky to do recently. We administered his nasal emergency seizure medication, but because Will has had so much nasal congestion lately, it appears as though he didn't really absorb any of that. We had to go with the second emergency medication - rectal Diastat. The seizure stopped within 8 minutes of administering it, and Will slept through the remainder of the night.

We were on the phone with the pediatric neurologist on-call during the whole thing. Once it appeared as though the Diastat was working, he had me administer a brief neurologic test to ensure that Will wasn't having sub-clinical seizures that wouldn't be obvious by looking at him. For those of you who thought "neurologic tests" were impressive and difficult to give, forget about it! I just had to pinch the insides of Will's lower arms and tickle his toes - just enough to get a response. If Will didn't respond, then he was likely having some small underlying seizures and would have needed to go to the hospital.

Thankfully he got annoyed with me (in his sleep) for bothering him, and moved all 4 limbs.

This whole situation is frustrating, as you can imagine, and seems to become more impactful with each passing month. It is hard to believe now, looking back, that when we started this CP journey, seizure disorder was something we were thankful we didn't have to deal with. Now it is our predominant concern. I guess situations are always changing and evolving that way, even if you don't want them to.

The neurologist increased Will's dosage of Lamactil by 25%. Just like all the other times, now we wait and see. In the mean time, I took Will back to the ENT to see what was up with the congestion. Will had been sneezing and gagging like the old days, before his adenoidectomy. He was sleeping for less than 2 hours at a time, before waking up angry and unable to breath effectively though his nose. It was getting old to all of us.

Published data on Lamactil shows that nasal congestion is a potential side effect - one that we could live with if the Lamactil was working. But I needed the ENT to determine what we could do to combat the congestion. Will already has a humidifier next to his bed, we spray his nose with saline, he sleeps with the head of his bed elevated, and he has recently completed a course of Suprax - an antibiotic that always seems to work to knock out his nasal bugs.

The ENT scoped Will and determined that he has another sinus infection. He prescribed something stronger and broader than the Suprax, and said we could re-evaluate the congestion issue after the 10 day course of Augmentin. At 5 days into the Augmentin, Will's congestion has lessened significantly, so hopefully the new Lamactil dosage works to stop Will's seizures and the congestion goes away!

Hope! Pray! We all desperately need sleep!

And moreover, we really need to get Will's seizures under control. Every day is a new day and a new chance to be seizure-free... I remind myself of that each morning and feel hopeful that things will start looking up for our little boy. But I have started to dread the nights. In the 30 minutes after Will goes to bed, I am on pins and needles listening for any sign that something is amiss and a seizure is nearing the surface. Once that time has passed, I ease a bit but know that in the early hours of the morning, I'll be rising regularly - sometimes several times in a single hour - to readjust Will in his bed, as he tries to sleep but just can't because of nasal congestion or muscle spasms in his legs. And that alarm at 5am sure does come early when you've had a truncated night of sleep. No wonder we're all a bit crabby.

Tuesday, November 15, 2011

TKD trial

You all know that we have been looking for activities for Luke that he will feel some success and confidence in. Something that will be fun but also help him strengthen his left foot and ankle. I decided to take running into that family at the grocery store - the one with the 4 year old boy in a taekwondo outfit - as a sign. So at the next opportunity, I looked up the local taekwondo school and emailed the owner.
He responded quickly to my questions and indicated that they had students with all kinds of abilities, and that he had experience with children with special needs. What the heck, we went to check it out last week.There were only a couple of little boys in the class, and three instructors - pretty good ratios - but also totally necessary when you're trying to get young, easily distractable and unpredictable 4-5 year old boys to listen, follow instructions, and make some martial art.They had numbers on the floor on which the boys were to stand and stay - a pretty good system for keeping the kids apart and right where you want them... if they listen and follow directions. They put Luke on the 4, right in front of the instructor. Good move?Luke: Hi!
Instructor: Hi! Please stand on your number.
Luke: But I don't like number 4. My favorite number is 10. What is yours?
Instructor: 4
Luke: Oh. (then he decided that standing on 4 wasn't so bad)
Instructor: Luke, can we begin?
Luke: No, I don't have the right clothes on (grabbing his camo pants and t-shirt and looking around at his comrads in crisp white doboks)
Instructor: Luke, it is time to listen and have some fun! And begin...The instructor then took the boys through some warm ups. Jumping jacks, sit ups, push ups, various taekwondo punching and yelling combinations. The boys liked the yelling part. It took Luke a couple of minutes to catch on, but he seemed to have fun. This was not without a lot of patient correction on the part of the instructors, mostly aimed at Luke. During this time, I chuckled to watch him figure out how to behave, and the other mothers clucked to me that their sons had been in the same boat in the not-too-distant past. I wasn't concerned.They moved from warm ups to a obstacle course. They worked on punching while stepping on numbers 1 through 8. Then they worked on their left high kicks. Then they moved on to sit ups, and on to right high kicks. After that, they went to an army crawl station, followed up by jumping 30 times on a small fitness trampoline. Thankfully there were reminders of what to do next at each step of the way.All I had to take pictures was my camera phone, and I wasn't right up on the action because I didn't want to distract Luke. So my photo quality isn't up to par, but you can definitely get a handle on how much fun Luke was having even with all the grainy images.With the holidays coming up, we don't want to start the taekwondo right away, and I still want Luke to try the dance class and maybe the ice hockey league that Stara mentioned. We'll let him be the gauge of what he likes the best. We're off to a good start with the taekwondo - Luke told me that he wants to go back soon.

Monday, November 14, 2011

Give me your tired, your poor, your ripped up linens

Will is learning how to bite. Anything he can find... not just food. He used to just grind his teeth, but now he has moved on. It started with him getting his shirt to his mouth and biting the sleeve. Then a couple of times he used his teeth to remove his hand splints. When he gets limber and adventurous, he gets a finger or thumb in there and bites. Then he giggles and does it again and again.

His most recent biting adventure came at the expense of his bedding. When we lay Will down to sleep, he goes on his left side, in the fetal position. If he isn't totally sleepy yet, he lays there for a while. His mouth is usually open and he's usually smiling, eyes wide in the dark. And that mouth open leads to a lot of drool and a wet pillow.

Enter biting habit.

Three times in the past month, I have gone to wake him up in the morning and found that he has bit and pulled on his wet pillow case and ripped a hole right in it. I am not talking tooth sized hole... I am talking that he gripped with molars and pulled. A couple of inch rip each time.

He's so proud of himself. Its hard to get upset about it when the answer to my question of "why are you destroying your pillow cases?" is met with an ear-to-ear grin.

I've given up on matching bedding. At this point, anything will do. If you've got any home- or partner-less pillow cases, send them our way! I'll post a picture for you when Will rips your pillowcase too :)

Sunday, November 13, 2011

Fall bonfire... a week ago!

I am a week behind with blog posts! Life is eventful these days - full of school, appointments, regular and unexpected drama, and more recently, illness! Ugh!

Last Saturday, the day after Will's seizure, we had plans to travel to Greensboro to attend my cousin's annual bonfire. We weren't sure if a late afternoon around a chilly fire ring was the best thing for Will, given the night before. Nate and I agreed that Will would be happier to take it easy at home, and I would take Luke and Matt to the bonfire to blow off some steam and hang with their cousins.

Will and Nate did well at home, and for the first time, I didn't feel any guilt about separating the family. We all had a great afternoon! But I have a feeling that this is something we'll address more and more as these types of social or stressful situations arise. The goal is always togetherness, but solo happiness also comes into play!

The bonfire was great! The weather turned very cold that day, so everyone was bundled up tight. Around the fire was a hustle of activity and cooking hot dogs. Luke took part in cooking his, and then took part in eating it. He was pretty excited about the whole thing - which prompted someone to ask him if he had ever been camping before. He said no, confused about what camping was... which made this former Girl Scout a little embarassed! I WANT to take these boys camping, but haven't quite gotten my head around the logistics of that yet. If a Kangaroo feeding pump beeps off of battery power in the forest, do you still hear it?

Matt couldn't be bothered with standing near the bonfire. Nor did he allow me to put mittens on his hands. He insisted on being a cold-handed, but grin and bear it kid on the playground! But he had a blast running with the older kids and was the saddest when it was time to go inside and get warm! Thanks to "Aunt" Pam for helping me keep him safe from himself!

And I wanted to just throw this photo in because it cracks me up. This is my cousin's 16 month old son, Ty. He's standing by the fire with the adults, drinking apple cider and wearing his older sister's pink gloves. But doesn't he look like a little old man!?

Tuesday, November 8, 2011

Rod Stewart

Next year for Halloween, I'll dress Will up with a t-shirt that either says "Wake Up Maggie" or "Do Ya Think I'm Sexy" or "Just the Same on a Downtown Train" and see who gets it. But hopefully his hair recovers before I actually have to follow through on this promise/threat (depending how you feel about Rod Stewart).

Monday, November 7, 2011

Face first

History has shown us that after Will has a seizure, he tends to get... backed up for a while. We aren't sure if it is medication related, or somehow a physiological response. But whatever it is, it has caused Will some trouble in the week following a seizure, so we've learned enough now to start administering Pedialax in the day following a seizure to counteract this effect.

This past weekend, after Will's seizures on Friday, we ran out of Pedialax. I took Luke on a trip to the pharmacy to get some more. They didn't have what we wanted, so we turned to leave. Luke was in a great mood, skipping and laughing. We headed towards the door, me ahead of him in hopes of stopping his certain gallop towards the door. He usually beats me to the doors, gets a thrill out of having them open automatically, and then I panic as he is closer to the parking lot than I am.

The gallop never came. I turned around to see where Luke was just as he landed - face first - on the floor in the pharmacy. He was shocked. I was shocked. There was nothing on the floor to trip him. He started wailing. Crying, so hard. He had really hurt himself. I sat on the floor with him, hugging, just trying to get him to feel better. It never really occurred to me that we were sitting right in front of the entry door, next to the check out stations, and people were walking past us.

Luke eventually felt a bit better. I checked out his hands and knees. He seemed to be ok. Just still a little shaken, but focused in his renewed desire not to fall again and to also find Will's medicine. We eventually found the Pedialax at another store, which made Luke pretty happy. He probably hasn't thought about his trip in the pharmacy again. It has been on my mind, though.

The fact that we don't have two children with severe cerebral palsy is quite honestly, a miracle. Will's brain hemorrhages really weren't much worse than Luke's. They were born at the same time, under the same circumstances. Luke has had more shunt malfunctions than Will, which means that he has more brain trauma risk. It just appears that Luke's brain hemorrhages, while similar sized to his brother's, either affected different areas of the brain or affected the same areas less severely.

It is easy to look at Luke and see a typical 4 year old. Sometimes, even we forget everything that he has been through. It just isn't as obvious. He walks, he is developmentally and mentally equal to typical developing kids of the same age. He is a little small for his size, but still on the chart. And with all the school programs he does, his speech delay is nearly gone. When his hair is long enough, you can't see the shunt bump or the large J-shaped scar on his scalp.

The one area where we see Luke having the hardest time is with his feet. Those feet give him away. Luke's left side is weaker than his right side - likely from his brain hemorrhage at birth, and likely a very mild, undiagnosed case of hemiplegia. When he walks without orthotics, his left foot rolls painfully in, and his knees knock together. His orthotics really make a big difference, though even with them on, he can't lift up his left leg quite as high and he has a slightly odd gait. Maybe I am more aware of it than most people would be, but it is noticeable.

Luke has had weekly physical therapy since coming home from the NICU to help with his left side weakness, which shows itself most obviously when Luke runs. That left foot rolls and just can't keep up, and he holds his left arm close to his body as his right hand pumps in time. The likely cause of Luke hitting the floor at the pharmacy was his left foot not lifting up as high when he walked as his right foot, causing him to trip.

To watch Luke on the playground, you also realize he isn't as confident in the things he does. He climbs slower on the jungle gym. He can't catch anyone when playing Duck, Duck, Goose. He doesn't jump using the balls of his feet - he jumps just by flexing his thighs. These things don't seem to bother him now, but I can foresee a time when they will. These things don't bother us, because we know how incredibly well he's doing from where he was and what his prognosis was at that time.

Luke's physical therapist indicated that Luke could train his feet to be more responsive by increasing stimulation. My first thought was to put him in soccer. That is what I played when I was Luke's age. But we want Luke to have fun and be successful in these alternate type activities, and soccer might not be the best first thing to try. This is one of the reasons that we try to get him out hiking. Some other ideas were dance class and taekwondo. I know that there is a certain unspoken stigma when you put a little boy in a dance class. You get a lot of questions... ignorant questions. But I was actually amazed to find a dance class locally that is focused towards 4-6 year old boys. They do jazz, tap, and acrobatics. I think he might like that. I also found a couple of local taekwondo places. We even ran into a 4 year old boy tonight in the grocery store, still dressed in his dobok. I struck up a conversation with the dad - apparently the little boy had just come from his very first taekwondo lesson (less than a 5 minute drive!) and he loved it!

So we are definitely going to check these things out... and hoping to give Luke some confidence in his physical abilities before he gets to an age where he's too self conscious to try out some new, fun, strength and agility-building activities!

Sunday, November 6, 2011

Heart songs and heart strings

I'll open this blog with a photo I shot this afternoon. We had such lovely weather. Nate, Luke and Matt were out in the yard, picking weeds and shoveling dirt around. Will and I hung out together on the porch. At one point, Luke came up to visit and see how we were all doing.

This was the high point of the weekend for us! It started off kind of rough. Nate called me on Friday afternoon and joked if I wanted to go out that night. I just kind of chuckled, we thought we were in for a slow night and a weekend of doing things around the house.

We settled in to watch some DVR'd shows after all the boys went to bed. I got up to get some water, and checked on Will. He has had a bit of a cough over the past week, so I had heard a cough and wanted to see if he was ok. Unfortunately he wasn't. He was in the early stages of a seizure.

Within the past couple of days, we have completely weaned Will off of Keppra. He's almost up to his final dosage on the Lamactil. Between the drug changes and the cough, it was impossible to tell what had caused Will's seizure. Thankfully he was in the early stages. The seizure ended and he went back to sleep within a couple of minutes of getting the emergency seizure medication. He slept peacefully next to me out the couch as we settled back into our DVR'd shows. This is kind of normal for us, I guess.

Something in me said not to leave Will alone, though he seemed to be sleeping completely normally. We tucked him back into bed, and I snuggled in with him. A couple of hours later, I awoke just as Will was going into another seizure. Having a second seizure like this is unusual for him, especially since the emergency medication would have still been in his system. We gave him a second dosage, which he subsequently threw up.

Because it was all pretty abnormal, we decided that he should go to the ER. Just to check things out. They ran labs, called the neurologist at UNC, and Will didn't have another seizure. After a couple of hours, Nate and Will were released.

We had used up the remainder of Will's emergency seizure medication, and because of the way the night had gone, didn't want to be without any. There is one 24-hour pharmacy about 15 miles from our house. The ER called in the prescription and Nate and Will made their way, arriving right around 3am. As they rolled up to the window, the pharmacist greeted them and asked if they could come back in 30 minutes.

Is that a joke? Seriously?

Unfortunately, the pharmacy's databases and computers automatically reboot themselves every night at 3am. There was no way the pharmacist could give them the medication. Nate and Will drove around for a half an hour before getting the medicine and heading home.

We all spent most of Saturday recovering. Will seemed to be doing well, and Nate took a nap while the rest of us watched Mickey Mouse Clubhouse. Today everyone seemed to be doing much better.

Will steps up to the final dosage of Lamactil tomorrow. Just like before, though, this is all wait and see... see if the Lamactil does the trick. If it doesn't, I don't know exactly what we do next. At some point we run out of medications to try. I don't think anyone wants to resign themselves to the fact that Will could have a seizure once a month, regardless of which medication he is on... but it could come to that.

Thursday, November 3, 2011

Blank slate baby

It occurred to me today that when most people in the world have a new child, that child is a blank slate. An empty canvas. A new little person to explore who is - at least for a moment - perfect. As they age and start to experience new things, that is when you learn that they need glasses or have allergies to cats or a learning disability or a mental illness.

From day one - at 29 weeks and 2 days gestation - Will and Luke never were those blank slate babies. Not that I mourn that time anymore, but I acknowledge that their birth was early and traumatic, and from very early on, we were afraid for them. First for their prematurity, then for their bleeding, then for their breathing, then for their brains, then for their surgeries.

I've never really stopped and thought about how much trauma and drama we took on during those first couple of months, and how quickly things that were pretty scary became commonplace for us. Yep, our kids had VP shunts and were followed by neurosurgeons from the time they were less than 5 lbs a piece. Doesn't everyone? Every three years, I fight for Will to get a new wheelchair... you too, right?

When you deal with those kinds of serious things each day, you become indifferent and unimpressed by more of the regular, blank slate types of pediatric issues. I don't mean to sound heartless, but acid reflux? Zantac. Sinus infection? Penicillin. Broken bone and an x-ray? Give 'em a cast and see you in 6 weeks. Bee sting? Hmm... not something I thought or worried about before today.

I got a call from Luke's day care that he had been stung by a bee on the ear right before his bus came to pick him up to go to pre-K. The ear was red and getting a little puffy. What did I want them to do? Was Luke allergic to bee stings?

I can handle shunt malfunctions. I know how to work a Kangaroo feeding pump and a nebulizer in the dark with my eyes closed. I can replace a g-tube button and know what to do in the event of a seizure. But a bee sting... never really thought about it. Never had to.

At first, I wanted to pretend like it wasn't a big deal. Luke was acting fine at day care and the ear seemed to be bothering the teachers more than it was bothering him. After 15 minutes of close observation, we decided that it was unlikely that he was going to go into anaphylaxis. Away to pre-K he went. But as Luke was on the bus and I couldn't get an update on him, I started to get worried. What if he went into anaphylactic shock? Got hives? Couldn't breathe? Is it really possible that even with everything we have dealt with up until now, there could STILL be things to worry about?

Of course there are. Will and Luke are actually still blank slates when it comes to most of these things. They will still develop the same medical conditions that any other child might - full term or not. Seems unfair sometimes. I'd like to believe that they got all their "crappy medical conditions" chits back at the time of their birth. But I know... no such luck.

But by the time Luke got to pre-K, the ear was swollen further. It got redder and hot. His teacher called me, frantic. What should she do? Was Luke allergic to bee stings? She had never seen this bad of a reaction to a bee sting before.


I did what every parent I know would do... I Googled 'bee stings.' I had them put ice on the ear to reduce the swelling. I had them look for hives and for a stinger to remove. He had none, and his teacher got him to laugh and hold the ice to his ear by putting it in a sock. Go figure.

He was fine. He is clearly not allergic to bee stings. Collective NCSlaviks community sigh of relief...

The pediatrician told me that because the sting was on the ear, there was no easy place for the inflammation to go. The body's natural response to a bee sting it to swell up. The ear would likely swell up to the point where we thought it might be dangerous, but it was going to be fine. Ice and Benadryl were really the only things that might help, if he continued to be uncomfortable.

By the time Luke got home today, the ear was noticeable but didn't look too bad. Luke was happy to tell me that the "bee got him on the ear" and laughed about the ice in a sock.

Luke got stung on his right ear. From the front, it doesn't look that out of the ordinary. Don't mind the lick marks around his mouth... not sure how to stop him from doing that... blank slate moment.

When comparing the left to right ears, you can see that the right one looks more red. Doesn't really seem like too much though.

But the true measure of the day is in the photo from the back. You can see that Luke's poor right ear is swollen out about an inch from the side of his head. Thankfully it isn't bothering him at all... but it does still look painful! The pediatrician said that it will look bad for a day or two, but we should see a marked improvement by Saturday. Phew!

Tuesday, November 1, 2011

No candy for the weary

So much for 30% chance of rain they were predicting for us for Halloween! It started right around 5pm, and got progressively heavier until about 9pm... prime trick or treating hours! Boo!

I had half a mind to try to convince Luke not to go out in the rain. I knew Will and Matt wouldn't care... but Luke had put on his Buzz Lightyear costume earlier in the day for his day care costume parade and refused to take it off. He was in a zone. Trick or treating was on his mind... partially my fault. After two years of him kind of being into it, I really tried to talk up trick or treating this year. Plus, we were going out with our next door neighbor (love of all my boys' lives), who was ready to hit the road for her candy haul before we even got home.

We were going to have to grin and bear it. Get soaked. Take one for the team. Child joy and Snickers bars were our only rewards.

Got the boys fed. Rain fell harder. Got them into full costume. Outside, it just got more and more dreary. Took some individual pictures before everyone turned into drowned versions of their Halloween glory.

Luke - Buzz Lightyear from Toy Story 1, 2, and 3. Thanks Grammy for the glow in the dark sword - big hit!

Will - Army ranger. The costume came with a hard dark green WWII type helmet, which doesn't really work too well when you have a head rest on a wheelchair. We improvised - and turned Will into an Army MASH surgeon - with a surgical headwrap that my mom bought Nate years ago!

Matt... oh Matt, the funniest costume ever. The garden gnome, complete with white bushy eyebrows on the hat and elfish red shoe covers. The costume also came with a white beard, but Matt wasn't having that. It was enough just to get him to keep the hat on!

They even agreed with me enough to allow a couple of group shots before we headed out! Nate was standing behind me, though, with promises of candy and door bells in an attempt to drag one mostly smiling photo from the gaggle. Success!

There are no photos of trick or treating. I'm sorry. I just haven't sprouted enough hands yet. Nate had Will in the backpack (good move - wheelchair would have been a nightmare in the rain), one hand on a big umbrella, and the other hand holding onto Luke and two candy bags. I had an umbrella in one hand, and Matt in the other... when he wasn't squirming to get down.

All three boys enjoyed themselves immensely. For them, it wasn't so much about the candy as it was getting to run around after dark and ring everyone's door bells. We were out for about an hour before we decided that we'd had enough. The candy pull was good. Luke's shoes were soaked completely through. After multiple times of picking Matt up out of the puddles, his shoes had completely soaked my pants. Nate had missed a couple of times with getting the umbrella over the back of Will's backpack and had sent rain down the back of his neck. We were done!

Got home, peeled costumes off and laid them out to dry, put shoes in the dryer. Took inventory of the candy. Some of the M&Ms had to be tossed because their paper wrapper had gotten soaked through. But all in all, we got both our rewards... kids were thrilled, and Nate and I will have candy to last us a while... or not :)