Be It Resolved

The new year has arrived! We missed our usual parties; though Will was feeling better, Maggie's feet continue to hurt and prevent her from going anywhere.

My primary resolution this year is to procrastinate less. This will affect so much of my life: completing tasks and projects, losing weight, improving finances, reading and writing more, and being a better father, husband, and person. Maybe I'll even find more work in theaters and libraries!

On the Mend

Maggie and Will are both getting better.  Will's nose is runny and he still coughs occasionally, but the humidifier in his room runs on high every night and he sleeps very well.  Maggie's swelling has gone down and though the pain remains, I'm sure it will reduce soon.  At present, she's stuck sleeping on the sofa since stairs are bad.  I've joined her so if she needs anything or hears Will on the monitor (How bad is it that I usually sleep through his cries?), I'm readily available.

I'm spending my time caring for both my loved ones and trying to stay ahead of the household chores.  Yesterday and today were dishwasher days, plus I ran some errands (fitness club, bank, pet store, supermarket) and worked on our finances.  Maggie even joined me to cook dinner, a delicious, quick, easy, and inexpensive recipe--garlic shrimp with spaghetti--that we really like and have now made twice.  I'll work on laundry tomorrow along with running more errands and making some phone calls.  Maybe I'll even get some tasks completed around the house.  I need to seal a window, replace a door closer, trim a tree, and store our firepit.  Will any of these get done before the end of the year?

A Day Off

Today was a lazy day for us, and a welcome one. Will slept through the night and we got to sleep late, too. We even spent the day in pajamas! Will's cough has diminished and his nose seems to be less runny, so he seems to be getting better (again). Once Will was awake, we brought him the living room, had breakfast, and opened his Christmas gifts. It was nice to see that he grabbed at some of the wrapping and pulled at it. It could just be a response to bright red paper, but it's a step in the right direction. After we opened all the remaining gifts, we tested Skype on the tablet computer, calling a friend in Florida. We chatted a bit and got used to aiming the computer and using both the front and back cameras.

Maggie cooked a tasty ham dinner with mashed potatoes, then we used Skype again to chat with my parents and tried to use it with my brother (but he was out, so we resorted to mobile phones). It was nice to give our thanks to everyone for their gifts quickly and to show Will using his new musical instruments: another toy guitar and a toy keyboard from Grammy and Grampy. My brother and his family got us an Apple iPod Touch which will be a nice replacement for my defunct planner and complement the iPad with apps for Will.

Tomorrow looms as Maggie reports for foot surgery at 6:00am, so it's time to get ourselves to bed and tackle cleaning our office/guest suite tomorrow when we get home. It's on the first floor, so we'll be sleeping there until Maggie feels comfortable with the stairs.

Christmas Countdown

After church on Sunday, we hosted our friends, Cheryl and Greg, for lunch, which they kindly brought.  We always enjoy each others' company and always find ourselves saying that we should get together more often!  It's especially crazy since we live only 15 minutes apart.  Once they were gone, we relaxed and enjoyed a nice evening.  Monday morning saw Maggie up early for work and I took Will to school, then tried to have my car repaired, but our mechanic was home, sick.  He called the next day and we rescheduled for Thursday.  Tuesday was a fairly "standard" day, with nothing to report.

Wednesday, on the other hand, was tough.  Will was scheduled for a sedated MRI and blood tests to see if his seizures were caused by something physical and if his medicine was working properly and not affecting other systems.  Maggie left work early and I collected Will from school early and after meeting at home, we went to Philadelphia for our 3:00pm appointment.  Both of us were hungry as we'd missed our lunches, so Maggie stayed with Will and began his intake while I dashed to the cafeteria and got us some food.  When I returned, the anesthesiologist was checking Will's health and readiness for the sedation.  While he had been symptom-free for the entire visit, he now coughed a couple of times, alarming the doctor and giving her cause to cancel the MRI to protect his airway.  Maggie and I both feel that he would have been fine, but we could not convince her to continue.  After the blood draws, we headed back to the car, stopping to call and schedule a new MRI for 12 January.  We need to call the neurologist, too, and explain what happened and see if he can get an MRI under anesthesia scheduled instead so we won't have to worry if his cold lingers, which they have a tendency to do.  We stopped at a new diner for dinner on the way home and only compounded our disappointment as the food wasn't very good.

Thursday was better, at least for a while.  Will finally seemed to be adjusting to the anti-seizure medicine--it wreaked havoc on his stomach, causing him to vomit every morning and some evenings--as he gagged a couple of times while getting ready for school, but didn't heave.  He stayed hurl-free throughout the day, too.  Maggie worked late, though not as late as she expected and I got my car repaired while Will was at school and our home's water meter was replaced since the old one said we weren't using any.  It would keep the bill low, but eventually I'm sure it would have come back to haunt us.

More immediately haunting, though, was Will's cold.  His nose got stuffy and runny and he vomited after his dinner, so I bathed him and got him into bed.  He was still rather congested and even with the humidifier on, he was waking every couple of hours.  This morning, I toyed with the thought of keeping him home from school, but today was the big Christmas concert and party.  His teacher had told me earlier in the week not to worry about getting him in on-time in case he was a bear and it was a good thing that she did.  I showered while he slept, then got him up and got him ready, but some of his breakfast was not going to be coming with us.  He arrived at school an hour late, but it was still 30 minutes before the party, so all was good.

The concert was a treat, as each of the four classes performed a tune and then everyone sang "Jingle Bells" for the finale.  The small room was packed with children, teachers, aides, nurses, parents, grandparents, siblings, and a group of local high school students who volunteered to help.  Post-concert, we split into two rooms to enjoy pizza, soda, and some chatting with the staff.  The high school students also presented the Easter Seals students with Christmas gifts.  I was heartened by their efforts and surprised by the quantity.  Will was given a percussion set, a dog-shaped toy "guitar" that he liked right away, and five (!) pieces of clothing.  Even more surprising was overhearing one of the students explaining that around 50 of them were involved, but only a few could attend since that's all that could fit in their 3 cars.  On top of that, their trip wasn't sanctioned, so while their teachers knew about it, they simply skipped school to perform their good deed.  We will write to the students with our thanks and I will volunteer to drive so more of them can attend next year.  I think I might be able to find a second driver and two vans, too.

After the party, I returned home to get ready for the rest of the day.  Maggie went to pre-admission testing for her foot surgery while I went to get Will.  We met at Toys-R-Us and shopped for nieces and nephews, plus looked for Will, but failed to find what I wanted to get him.  Will spent much of the shopping trip sleeping, as the party and his cold conspired to exhaust him.  We had an early dinner at Ruby Tuesday, then got Will and Princess fed.  Maggie quickly fell asleep while fighting a migraine, Princess fell asleep (but that's standard practice for her), and Will spent some time on my lap playing with his iPad apps.  He began fading, so I got him ready for bed and he quickly fell asleep, too.  Now it's my turn.  There's a lot to accomplish before Christmas and I need to get rested!

Busy Week

Tuesday was fairly uneventful for Will, while I attended my first parent-teacher organization meeting at his school.  I knew one parent and the other two seemed nice.  Our next event is a snack break for the staff in January to welcome them back from the winter break.  Once home, Maggie and her sister, Marie, made cookies while I watched Will and began setting-up the iPad.  My primary tasks Wednesday were to deliver Will with cookies for his teachers and deliver cookies with a thank-you card to our church staff.

On Thursday Will had a half day at school, so I dropped him off and then went out to breakfast at Panera Bread and shopped nearby for the three hours he was there.  I browsed Becker's (a parent and teacher store) and Redner's (a local discount supermarket), and spent money at Marshalls (some board books for Will), Lowe's (pipe insulation and a storm door closer), and BJ's (pot stickers, mini pizzas, and two DVDs).  I even went to BatteriesPlus and used their grand-opening coupon for eight free AA batteries.

When I returned for Will, the physical therapist told me that Will's orthotics were taken away for cleaning and refurbishing, to be returned the following week.  We don't want him to be without his braces that long and I got a bit upset at having it happen without knowing ahead of time.  She offered to call the man who had them and asked for a rush job, so they could be ready on Monday.  I held firm and asked that I be able to meet him and get them back into service--I did not believe that any repairs were necessary.  She called him again and I talked with him; he offered to rush them back the next day and I acquiesced.  I don't think we'll have this problem again.

The afternoon was a bit rainy and we stayed home, which was lucky since Alison, Will's orthotic maker, coincidentally called to say she had found an even smaller hinged knee brace (earlier in the fall, we tried the smallest one she could find and it was too big) and that she was in the area and would bring it to us if we were home.  I told her we were home, but that his braces were unavailable until tomorrow.  It wasn't a problem, so within 30 minutes, she delivered and adjusted the new brace.  It's a nice fit.  She's been great with him and I'm impressed with home service whenever I find it.  She also said she'd call her colleagues to make sure that his ankle braces were back to us on Friday.

Friday arrives and brings what we knew was coming, but dreaded nonetheless: Will's first school cold.  He slept poorly Thursday night, fighting an upset stomach and some coughing.  He had a nice day at school, though, so only Maggie and I were affected by the lack of sleep.  I spent the morning having another Panera Bread breakfast, then shopped at Bargain Books, where every book is $5.00 or less.  I made a nice dent in my Christmas gift list.  Maggie called while I was leaving and I met her at our optometrist's office.  Her right eyelid has been sore and with her foot surgery looming, she decided to have it checked to get rid of the problem before it could get worse and/or cause the surgery to be postponed.  Following school, Will returned to being cranky and upset for a lot of the afternoon and evening.

Finally the weekend arrives!  One shouldn't get too excited, however, since Will was a bear for much of the day, vomiting at least four times.  His cold is mild, but making him simply miserable.  When the symptoms are all gone, he is his usual self, but when a gas bubble rears its ugly head, or a cough wakes him, watch out.  Crying begins and is soon followed by a loss of formula.  Even so, maggie got a lot done and let me sleep until 10:00am, a treat I haven't had for a few weeks.  She was extra busy today, washing clothes and dishes, preparing Christmas cards, and baking cookies.  I worked on our computer, downloading our camera's photographs and organizing the 2011 images.  Then we spent the evening out at two holiday parties and Will was great for most of the first one and (surprisingly) all of the second one.  He began melting again when we got home, but he quickly fell asleep and is sleeping soundly with only occasional crying.  I feel badly for him and hope that he gets better soon.

Why Is He Upset and How Long Will It Continue?

Will spent much of the weekend's nights crying, thrashing, and vomiting as he fought some intense abdominal pains.  It may be due to the anti-seizure medicine, so we're hoping he gets used to it soon.  He was a bit of a bear this afternoon, too, but napped for two hours (albeit interspersed with crying, thrashing, and vomiting) and has now gone to sleep peacefully and soundly so far.  May he get a good night's sleep so Maggie and I can do the same.

I spent much of today searching for a particular piece of paper, but to no avail.  Its deadline is nearing, but I'm confident it will surface.  I also shopped using store credit at Home Depot for a nice tree skirt and using coupons at BJ's Wholesale Club to resupply our pantry with, among other things, dishwasher detergent pouches and dog biscuits.  Our storage unit is slowly getting its contents removed, too.  Today saw gift wrap, a couple of books, and some foam floor tiles for Will come home.  On the way, I stopped to visit our mechanic to ask him to check our 2002 Subaru Outback.  It has an exhaust leak (again) which was just noisy, but now is making the cabin smell, so I'd like to have it repaired before I fumigate ourselves.

Will was upset at the end of his nap which coincided with the completion of his dinner, so I got him up, tried to soothe him, caught most of his vomit, changed his diaper, and was carrying him downstairs to strap him into his chair when I noticed a vehicle in our driveway.  Maggie was out having dinner with friends, so I though she was home, then I thought it was probably Marie and/or Glenn, stopping by to deliver something or get something, like their leaf blower that currently resides in our shed.  Instead, I find that our pastor and his wife have come to visit and bring a Christmas gift.  I got Will into his chair and stuck a toy on his tray (industrial-strength Velcro is a wonderful thing!), then warily toured them through the house as they haven't seen it before.  It was sadly not very presentable, but I told myself that friends don't care and understand.  Maggie arrived as they were leaving, so we all talked for few minutes, then she and I settled into the living room to be with Will, finish decorating our tree, fold laundry, eat some dinner, and see what gift was just delivered.  We find ourselves truly blessed as in the bag they left under our tree was an Apple iPad with a cover, a dock, and a monitor connector.  It's impossible to say anything other than that we are very, very thankful.

Errands, Errands, and More Errands

Will overslept again and while he had a dry diaper getting up, he didn't after I dressed him, noticed since it leaked like a sieve.  His desire to go back to sleep made him fight the whole dressing and changing process and he didn't relax until I strapped him into his car seat.  He also smiled when his teacher met him at the entrance.  Apparently, he likes school!

I spent the morning running errands.  At three years of age, health insurance pays for 200-300 diapers per month.  I got the first batch today on the way home, then stopped at our storage unit to measure some stuff and gather some files.  Once home, it was time to pay bills, send and check e-mail, make lunch, and store our outdoor furniture and hose for the winter.

After retrieving Will, I prepared my guest lecture presentation tomorrow morning on plagiarism and academic honesty for a friend's business ethics and law course that he's teaching at Holy Family University.  Once Maggie got home, we cooked chili and set-up our Christmas tree.  Will was upset this evening, probably due to pending messiest poop to date.  He was entranced by the tree though, and between fighting off tears and sobs, he'd look intently at the lights and glittering ornaments.  Once he calmed and finished his dinner, Maggie held him while we watched some television, waiting for the inevitable.  We're not sure how, but he seemed to have pooped more on the outside of the diaper!  After his necessary bath, we also replaced his G-tube, read a couple of books, and he fell asleep very quickly.

First Class Trip

He missed the swimming trip last week, but today Will's class went to a local mall to see the decorations.  His teacher reported, as expected, that he loved the lights!  I told him not to buy anything (especially since I didn't give him any money and he doesn't have a job yet), but I heard a rumor that he got us a gift anyway.

I spent my day bagging leaves (one last time!) and finished before the collection truck arrived.  Hooray!  I stored the remaining bags for next year, put the rake away, and brought our Christmas tree into the house.  The box has begun to get moldy from rain getting into the shed, but I think the tree will be fine.  We'll probably store it in a bag next year and recycle the box.  With the living room rug freshly vacuumed, I'll set it up tomorrow.

Maggie had a dinner meeting tonight, so I had dinner alone, then Will and I enjoyed a video chat using Skype with my parents, who are visiting my uncle and his family in Illinois.  It was nice to see them all and they commented on how big Will's getting, how expressive his face was, and how red his hair looked.  All while he wiggled and squirmed on my lap.  He didn't nap today and spent much of last night awake, kicking his legs, laughing, squealing, and generally having a good time (but keeping Maggie at least semi-awake).  I expected him to sleep in the car on the way home, during his afternoon snack, or any time this evening, but no.  He finally started to melt just before Maggie got home, so I stopped the chat, got Will ready for bed, and once he and Maggie were settled, she and I reconnected for a little while before relaxing with tea and television.

Rain, Rain, Go Away

Today seemed like it could be a "normal" day.  Will off to school (albeit late), me working at home sorting papers and bagging leaves (in the rain).  Once I brought him home and fed him his "snack" meal, I called my sister-in-law, Marie, and asked if anyone was available to watch him while I went to the supermarket.  Jessie obliged and I bought missing ingredients needed for tonight's delicious dinner: garlic shrimp spaghetti.  I also bought some staples (eggs, flour) and some needed ingredients for chili.  Next is to make it, but I'm preparing two batches: one with beans for Maggie and one without for me.  There isn't much more to report today.  The sump pump is keeping pace with the basement inflows and my only worry is if we lose power since we had one lighting flash, but it was a while ago so I'm hoping we're safe.  I hear some fresh-baked sugar cookies coming out of the oven, baked from scratch by my beautiful and loving wife, so I'm off to see if I can have some!

A Good Day

Will was restless for much of the night, and even though he was awake early (before 7:30am), we still managed to be late for school!  Once I got him dressed and ready to go downstairs, he decided to poop.  Luckily, no clothing was affected.  Once that was done, I still had to shower and had only 15 minutes to do so, plus dress and load the car.  I spent my day with more yard work, some television viewing, paper and ink/toner cartridge recycling, a little shopping, and some reading in the car while I waited for Will's dismissal time: 2:00pm.  At the appointed time, I went to his classroom to get him and ask what his clothing needs were (they keep a change of clothes in his cubby).  I had a very nice, composed, friendly, and sensible conversation with his teacher and physical therapist about his G-tube, his sleeping position, his physical abilities and tolerances, his ankle-foot orthotics, possible equipment needs, and his handedness.

In addition, we heard from my sister-in-law, Sue, that an anonymous person or persons wanted to gift us with an Apple iPad for Will!  Will's cortical visual impairment (CVI) specialist in Pittsburgh recommended that he get one for communication and education.  She tried some apps on hers with which he was quite successful from the beginning and he was eager to keep playing/learning as evidenced by his lunging toward her when she would pull the tablet away to change apps.  We've been hoping for a while to buy one or find a donor organization, but I haven't pursued it as diligently as I should have.  Two of his early intervention therapists have iPhones and they used them with him, but they no longer work with him since he's now served by the "Intermediate Unit" (a meaningless, euphemistic moniker).  My parents have iPhones, too, but since they live in Florida, he only gets to play with their phones a few times per year.  The bottom line is that he likes it, it's good for him, and he misses using it.  The wait will soon be over, my little technophile!

No nap this afternoon nor evening; tired as he was, he fought it off valiantly and successfully, much to my dismay since, unlike him, I wanted to nap.  Once Maggie got home for the night, we quickly got him ready for bed and he was sound asleep within a few minutes.  Maggie's napping on the living room sofa as well.  Now it's time to give him some medicine and set-up his "dessert" feeding, then I'll wait until it finishes before I can finally get some rest, too.

Another Week Begins

Will slept late again today, then spit up as I was wrestling his coat on, necessitating a shirt change and making us late.  Not a big deal since it's pretty casual at preschool, though I'm feeling a little at odds with the staff at times.  I'm sure the kinks will get smoothed over the the next few days and weeks as everyone adjusts to Will (and Will's parents).  They had to change his clothes twice today since it seems a diaper leaked a bit, but otherwise, it seems to have been a regular, mostly uneventful day.  His vision teacher's notes were tough to read as her penmanship is not very good and we don't receive the original.  Alas!

I sorted papers today, paid a bill, bagged leaves for this week's collection, and prepared dinner once Maggie called when she was on her way home.  We had baked tilapia with rice, steamed broccoli, and salad; the rice cooker (an anniversary gift) continues to perform like a champ.  I'm still fighting a tenacious-but-mild cold, so Maggie made tea for us.  She had hers with cranberry scones that my sister-in-law, Marie, made using Maggie's recipe.  They didn't turn out as good as Maggie's, so she's coming over to bake them here with Maggie's guidance after church services on Sunday.  I had my tea with cookies.

Speaking of weekends, we had a nice one.  Saturday was spent with a brief appearance at a friend's daughter's first birthday party, then at a luncheon at the William Penn Inn with Maggie's former HealthLink (a local clinic) colleagues.  Will was cranky through the lunch, so I spent a big portion of it singing quietly to him, trying to get him to take a nap, and eating when I could.  My song, sung to the tune of "Frere Jacques," has custom lyrics: "Little William, little William,/go to sleep, go to sleep./You are very tired, you are very tired./Dream, dream, dream.  Dream, dream, dream."  I find that at the very least, he'll calm down and listen to me, sometimes relaxing enough to forget what he was upset about and perhaps even drift off to sleep.

Yesterday, we attended church, but remembered as we arrived that the annual budget meeting and potluck lunch was following the service, so I dashed back home and made Swedish meatballs (from IKEA) and grabbed a box of oat crisps (yummy cookies, also from IKEA).  The newly renovated fellowship hall looks very nice and is a big improvement.  Perhaps we'll be able to start a Scouting unit there in a couple of years.  After lunch, we headed home and regrouped, then headed to New Jersey for a semi-regular "Soup Supper" that friends host every couple of months or so.  We've missed a few due to sickness and travels, so it was nice to see everyone who was there.  Will was a perfect little gentleman, dining on his formula and not fussing at all until we got in the car and headed home.  He was very upset for around half of the 45-minute trip, probably due to a wet and dirty diaper.  After his bath (guaranteed to make him happy and calm, as well as fairly clean), he settled to sleep quickly, as did we after watching a bit of television.

Day 3?

No school today for Will and it's unfortunate because his class went to Newtown for their monthly swimming trip.  Why wouldn't we (I get to go, too) go swimming?  Today was a medical day and not because he had a cold.  While we were in Florida, Will had two "episodes" that we and his pediatrician wanted to get checked.  He vomited a little, then stared to the right with his head turned and was unresponsive to stimuli.  The first time was at night, while he had been asleep and after a diaper change and little crying, he was sound asleep again and remained so all night.  The second time was in the afternoon, five days later.  Same presentation, though he didn't need a new diaper and napped for around an hour.

We'd seen the neurologist one year ago and he mentioned to watch for seizures (since that's a big thing for neurology), but neither we nor he expected them since Will's diagnosis is still unique--we're still pulling for Dunham syndrome.  Today's visit included an electroencephalogram (EEG) and it confirmed our suspicion: Will had "partial seizures" (named partial since they originate in "part" of the brain).  The electrical pulses that are the cause are found in Will's occipital region and are stronger on the left side, which caused his right-looking reaction.  The neurologist expects Will to have more, but optimistically, he noted that some children grow out of them as their brains develop.  In the meantime, to prevent more scariness and keep him in better fitness for learning, Will's now taking a seizure prevention medicine, called Trileptal.  We'll have an MRI done this month, then follow-up with another EEG and neurology appointment, probably in early February.

So, we had an eventful day traveling to the Children's Hospital of Philadelphia satellite offices in Chalfont.  It's about the same distance as the main campus in the city, but there's less traffic and parking is free, plus Maggie's office is around one-third of the way there.  She left work early so we could both be with Will for his first EEG and I'm very thankful since she asked very good questions (none that I would have generated) with the doctor.  His responses were all good, his plan makes sense, and Will's prognosis is uncertain (it's hard to tell at this point since it's so early), but I'm optimistic.  With appropriate management, Will should have no restrictions, so we're still hoping he can drive a car someday!  It's a big jump from swimming, but I think we'll get there.  For now, he was super excited about his bath tonight (his hair looked very punk from the goop from the EEG leads) and we'll go swimming with his class next month.

Day 2 at Preschool

Will may be falling into his father's habit: sleeping late. He slept through his breakfast and I loaded the car with his stuff, then finally got him up and dressed moments before we had to leave. He seemed to have fun again today, so I left him with no worries and went on a short series of errands: returns to Home Depot, eyeglasses repair at the mall, bank deposits, paper recycling, and mortgage payment. Then while home, I bagged some leaves for today's yard waste collection.

I need to get to Easter Seals a little earlier in the afternoon so I can park...it was a bit of a traffic jam in the school's small lot. The staff brought Will out, along with his bags, and we merrily returned home for his snack. He seems a bit tired again and I'm hoping he'll want to nap soon, but he also seems pretty active, so he may just sleep in the car later, when Maggie has a podiatry appointment.  So far, he's in his room and happy, but definitely not asleep.

Tonight's agenda is dinner, Maggie's appointment, some grocery shopping, and finding television episodes on-line that our TiVo deck didn't record in full due to game delays.  I know it's smart, suggesting things we might like, but I want it to be smarter and know when there are delays and act accordingly!