Wednesday, December 28, 2011
Over the past couple of weeks, Will has been sleeping well, which means that the rest of us sleep well too. Luke didn't come into our room until 7am - just like last year's Christmas miracle! He didn't say anything about the Christmas presents under the tree, or the full stockings, or the bites taken out of Santa's cookies. He told me that he just went to the potty, could he sleep with me, and by the way, Merry Christmas!
So funny. He crawled into our bed and I tried to impress upon him how exciting this morning was! I told him that Santa came last night and left presents for all of us because we were so good this year. He seemed a little interested, but cared more about the fact that it was nearly 7:30, and did I know that Mickey Mouse Club was about to come on Channel 200.
Eventually I convinced him that this was an important morning, and there would be plenty of time later for Mickey and his pals. All of a sudden, it seemed to sink in that he wanted to get out of bed and wake everyone up. He and I snuck out to the Christmas tree. Luke gasped when he saw the gifts under the tree (which he had walked right past just 20 minutes before with not a glance). I showed him the stockings - another impish gasp. And the final gasp came when we saw where Santa had eaten his cookies and left a note for each of the boys!
Luke: Santa was here! (pointing to the exact spot where we were standing) And he brought all these presents (motioning grandly towards the Christmas tree) for ME!
Finally, the excitement we mothers hope for! I had to explain that Santa brought gifts for everyone and we needed to look at the tags to see who they actually belonged to, but this didn't seem to deter Luke. He was all about Christmas now!
By this point, Oma and Opa were peaking over the railing at Luke and me down below. I started the coffee and woke up Nate. Though Luke wanted to get started with gift opening, we told him that we needed to be all together to start on the gifts. He reluctantly told his yawning brothers good morning and waited patiently while diapers were changed.
At long last, we gathered in the living room with caffeine and excitement abounding. First things first, though. Santa came for Otis too, and Luke was the happy giver of gifts.
Luke: Otis, Santa brought this for YOU!
Otis grabbed that raw hide, did a little happy dance for all of us, and then ignored us for the rest of the morning as he chowed down on his gift.
All year long, I keep an eye out for gifts for Will. He is the hardest one to buy gifts for because most toys and games don't match up with his abilities. And I feel like we already own just about every musical baby toy that can be activated with limited hand control!
Will has a difficult time holding things. This makes drawing and painting really difficult for him. Back in October, I happened upon a switch operated, remote controlled Color Bug. There are two parts to it - a switch on his tray and a lady bug on a nearby table or floor (holding a marker). When the user operates the switch, the lady bug draws for you. Will loves using switches, so this seemed like a good fit.
He really liked it! I was a little nervous because Will typically doesn't like the sound of remote controlled cars, and that is what this little Color Bug sounds like when she's whirring away on the floor. But it didn't seem to bother him. I don't even know if we need to set it up with a marker, Will has his own remote controlled "car" to play with his brothers now!
The second toy I was excited to give Will was an FAO Schwartz piano - a miniature version of the famous piano from the movie Big. It is 7 feet long and I thought Will would enjoy laying on it and making music as be moved and rolled around. Will did not share my excitement. Epic fail. Mommy bats 1 for 2 when it comes to Will this year.
Matt received a couple of toys that cannot be broken. He's 20 months old, all brute, and he runs everywhere. Toys need to withstand that. Can't go wrong with a solid metal Tonka truck and a little foot-powered ATV (like Fred Flintstone's car). Maybe this will stop him from stealing Luke's tricycle for a while... at least until Luke gets his first bike on his 5th birthday in March!
Luke has loved all things electronic since the day he was born. When people visit us, they let him play with their smart phones out of the goodness of their hearts, and he proceeds to change their ringtones and post a picture of himself on Facebook. It was obvious to us that Luke needed his own smart device - one with more learning potential than an iPhone! We had him open this last, and were happy that we did... he was so engrossed with his new "iPad" that he didn't respond to sound for the next 2 hours.
He did come out of his computer coma for a snack and broke out his second favorite Christmas gift for a test run. That's Spiderman on the handle.
Christmas is always magical, especially when you have kids to share it with. They don't actually have to be young to be kids though... sometimes 34 year old husbands and aunts from Connecticut have just as much fun as Will, Luke and Matt!
Tuesday, December 27, 2011
This year, we opted for something a little different. We invited local friends with true Santa-believing age kids to our house on Christmas Eve to share in our tradition with us. We expected that most people would already have plans for Christmas Eve, but were excited when we got a good little crowd of revelers to join us. Nearly all of our guests had ties to central New York, so it was funny to hear the stories of snow and bluster and Christmases past when we were having a 60 degree Christmas.
We also spent some time writing letters to Santa, a last ditch effort to ensure positions on the Nice List. Good friends, hot chocolate, spiced cider, and cookies, cookies, cookies. Can't go wrong.
Somehow Matthew managed to sleep through the whole thing.
Thursday, December 22, 2011
Fast forward to yesterday. My manager set up a meeting with me late in the day to discuss a new project. I asked her at one point if she wanted to schedule it earlier in the day - she had a quick, non-suspect answer so we kept the late meeting. About 10 minutes before our meeting, I walked by the conference room where she and I were to meet and saw my friends sitting there. They looked engrossed in conversation, and I hoped that it was nothing serious.
I showed up for my project meeting on time and prepared. But I wasn't actually prepared for the meeting that was truly scheduled. There around the table sat 7 of my friends, and behind them was a large white cooler, decorated with Christmas garland and a bow.
After reading the blog post that I mentioned above, my friends wanted to do something for us. They got a big group together, made trays of freezable food and collected gift cards to restaurants and supermarkets, and presented them to me - "to give me back some time in the day."
What an awesome, unexpected gift. We are so grateful!
I love a good surprise. But I am usually the one surprising someone else (just ask my husband about our 6 month wedding anniversary or his 29th birthday). Surprises just don't happen to me. And certainly not on this scale.
My friends proceeded to tell me how they love the blog, want me to write a book (funny!), and are amazed with how much Nate and I are able to do, how we inspire them, and how they wanted to do something to make our crazy days a little easier.
They certainly achieved that. Our freezer is now fully stocked with hamburger soup, white bean chili, and spaghetti and meatballs - all packaged in reheatable containers, covered in notes, and complete with reheating instructions. In times of craziness or need, this frozen food and the restaurant and supermarket gift cards will come in remarkably handy. I always want to make my family home-cooked, love-filled, inspired meals. With so little time in the day and with us going in so many directions, this goal often goes unfulfilled. I feel guilty for the nights when we eat left overs 3 nights in a row, for meals that center on chicken nuggets or hot dogs because they're the quickest thing to cook/defrost, and for all the frozen ready-to-eat manufactured meals with which we end up filling the void.
I feel very blessed today. From the bottom of my heart, thank you Talya, Mary, Karen, Evelyn, Linda, Delores, Steve, Jean, Vickie, and Gail! You should see our freezer now!
Wednesday, December 21, 2011
Mine used to be like that. Between Oprah's Book Club and my interest in environmental litigation, my bed side table used to be stacked with a random mix of heartfelt and science, She's Come Undone meets Cadillac Desert, free time and free brain cells. But over the past 4 years, those books have slowly been replaced with reading of a more practical nature. And sadly, I don't get to it all, even what I plan to read in the summer time.
Although I am not a new mother, I keep the Meditations for New Mothers - a book of random motherly quotes - on my table for a laugh and a smile... and sometimes for irony.
The sarcastic: Kids, yeah, I like kids... medium rare. -- W.C. Fields
The touching: The supreme happiness of life is the conviction of being loved for yourself, or, more correctly, being loved in spite of yourself. -- Victor Hugo
The reassuring: Wrinkles should merely indicate where smiles have been. -- Mark Twain
The hopeless: Keeping house is like threading beads on a string with no knot at the end. -- Anon
The motivational: A single event can awaken within us a stranger totally unknown to us. To live is to be slowly born. -- Antoine de Saint-Exupery
The other fluffy book on my table is All the Ways I Love You - another Hallmark recordable book - read to the boys by my Grandma Jean. I will admit that I read it more than they do! Even at 32, its nice to have someone read you a special book and tell you that they love you as many times as you want... all you have to do is turn to the right page.
The remainder of my books aren't fluff. I've read the books about parenting a child with cerebral palsy each several times. But I keep them close at hand for reference and ideas.
The new books on my stack are the ones about the ketogenic diet. I hit up Amazon three weeks ago for some keto reference material when Will had his latest seizure and we started walking through next steps.
While not an expert on the ketogenic diet, I did promise an explanation on it a couple of weeks back.
The ketogenic diet was created in the 1920s. Somehow, doctors started figuring out that when their epileptic patients ate a low-carbohydrate, high-fat diet, their seizures lessened or went away all together. Though the diet lost its pizzaz during the middle part of the last century, there was resurgence of interest and research on it during the early 1980s, and now it is widely accepted as a treatment option for children with seizures that cannot be controlled by medication. When a child follows this no-carb diet, their body utilizes fat for an energy source. When the body breaks down fat, ketones are released and ketones are a natural anti-epileptic. Research has shown that 50% of children who try the diet for 2 years will not have any seizures after the diet period is completed. Somehow because of the diet, the brain literally forgets how to have seizures.
The diet is kicked off with a hospital stay, during which time a dietician and neurologist slowly start the patient on a high-fat, zero carbohydrate diet. Sound familiar? The patient is hospitalized during this time, though, because some patients don't handle the diet well, and it also allows the dietician to calculate and create recipes for the patient to follow at home.
This ain't your husband's Atkins. And it certainly isn't homeopathic. This is a medical diet.
There are some risks and concerns with the diet. One of the major ones is that when you are in this high-fat, low-carb state for months on end, the body becomes acidotic. This means that the pH in the body changes to an acidic state, and you can actually have degradation of bones. When your body excretes this calcium, kidney stones can form. Fun!
Because of the lack of nutrients that come from carbohydrate-rich foods, you meet regularly with a hospital-based dietician weekly for blood work and to adjust your intake of nutrient supplements of vitamins. Awesome!
Daily food intake is strictly regimented. No snacking. The child often feels hungry and cranky, though their calorie intake is being met. The diet is easiest with children who are solely fed via g-tube formula. For kids who eat by mouth (like Will), food must be measured to the gram before being served. I am actually nervous about this... we are sleep deprived folk. How good would I be measuring a kitchen scale when I mistake ranch dressing for coffee creamer in the morning?
This isn't something to be taken lightly. But the results can be great. A life with no or very few seizures medications, no surgery...
The main components of the diet are cream, oil, butter, eggs... you know, all the stuff that most of us try to limit. The recipes in some of the books on my bed side table would make you feel sick to your stomach with their richness.
Before Will got his g-tube, we were desperate to increase his caloric intake. We used to mix heavy cream in with his baby food fruits and oil in with his baby food meats. He responded with swift and passionate vomit. On every occasion when we fed him this doctored food. He just does not tolerate high concentrations of fat well. And the basis of the ketogenic diet is high concentrations of fat.
We still have a lot of discussions to plan before we decide whether to do this diet. It is a serious commitment. Concurrently we are having conversations about epilepsy surgery. After talking with physicians, weighing options, etc. we have decided to pursue surgery at Johns Hopkins in Baltimore, close to where I grew up. We have an initial consultation in early March. Until then, I'm hoping to dig my way through this stack of books and maybe catch up on something a bit less cerebral. A Nicholas Sparks novel sounds like a little bit of mama heaven to me right now.
Monday, December 19, 2011
Two years ago, when Will started attending the Jordan Center for day care, we were a little nervous how he would act around typically developing peers. Will surprised us and did exceptionally well - often enjoying the special times when his teachers weren't looking and his friends would climb up with him on his chair to share a toy.
Will was the only kid in his day care class with special needs. He loved it. He got so much love and was just a regular member of the class. He used to laugh so hard when he would hang out with those kids. Laugh. He was doing so well, in fact, that when the time came to move on to pre-K at an elementary school - in a class that was a better fit to his needs but surrounded by other children with special needs - we were nervous that he would miss the interaction with his typically developing peers.
The first couple of months of Will in pre-K went like a blur for us. Will had his adenoids out. Matthew was born. Will's seizures started. Between all of this, he got a bit more crabby. It is hard to know why. He's was sick a lot, got less attention with a baby brother around, and the seizure medications are notorious for making the user feel cruddy. We tried to supplement his mood with special parent time and a cranial osteopath. The effects were short-lived.
Though not much at the beginning, over the past year Will's moods, his propensity to cry loudly and let you know he doesn't like what you're doing (or not doing), and his gagging have led to many notes between us and Will's teachers. His quarterly IEP results revealed that his attitude was affecting his ability to learn in the classroom.
We were all left kind of scratching our heads. We tried many things to make Will happier, but nothing was changing. We went the opposite direction and tried to put him in time out (like his brothers) if he misbehaved. We ignored his protest cries. We sang and tried to make him laugh to get the protests to stop. No change.
Will gets upset when Matthew climbs on his chair. He doesn't mind it when Luke plays with a toy or snuggles with him, but that seems to be a special 'twins thing.' Since Will left the Jordan Center, no other young person is allowed to encroach on Will's space without some very loud, very angry sounding cries from Will.
That is, until Joey entered Will's life. Joey is the 8-year old son of Will's teacher, and he often spends time in Will's classroom. Though there are several children in Will's class, Joey started spending a lot of time with Will. After the touchy issue earlier this year with older kids in the classroom, I was a little nervous at how the whole thing would work out.
But imagine my shock, surprise and JOY when we started getting notes from Will's teacher about how Joey told her which toy was Will's favorite, started bringing CDs in to school for him to listen to because "surely Will would enjoy this," and just makes Will laugh all the time. Laugh. Like he hasn't laughed in almost 2 years. It doesn't seem to matter to Joey that Will can't talk, or run around on the playground, or get himself a drink from the water fountain. They've found a way to communicate.
They're buddies. This might sound strange, but I don't know if I ever allowed myself to believe that Will would have friends outside of his brothers. I suppose at times I sell humanity short, and believe that there won't be anyone in the world outside of his brothers who takes the time to actually get to know the beautiful Will soul and befriend him. Know his likes and dislikes, what makes him laugh, the music he enjoys... all of that.
Will still has his cruddy days. He still has bad moods and protests the things that he doesn't like. But the difference now is that isn't all the time. When Joey comes around, Will gets to blow off some steam with his pal. And who doesn't feel better after that?
Wednesday, December 14, 2011
I have finally managed to wade through the many boxes and crates of Christmas decorations. Our tree is up and decorated, the outside lights are twinkling, and the mantle is dressed with a garland, stockings, and candles galore. In the search through these goodies, I came across two special gifts from last Christmas.
I am a big fan of Hallmark's recordable books. Last Christmas, I bought The Night Before Christmas and Frosty the Snowman, and sent them to my grandparents in New Jersey to record. They recorded their voices reading these Christmas treasures, and sent them back for the boys to open on Christmas. After Christmas, I put them away with our decorations, to be a special treat this year.
I left the books on my night stand, thinking that I would have to do some encouraging to get the boys to look at the books and pay them a lot of attention... to love them as I do.
As I stood in the kitchen, I thought I heard my Grandpa Milt's voice. That seemed odd. Then all of a sudden, Grandma Mary's voice was there too... the stockings were hung by the chimney with care, in hopes that Saint Nicholas soon might be there.
What a cool feeling. My hope in purchasing those books and having my grandparents (my kids' great-grandparents) record their voices was that these books would become treasured holiday memories, shared with family far away. All my grandparents live in New Jersey, and with our various difficulties traveling, we don't see each other nearly as much as we'd like. The books seemed like a way for Will, Luke and Matt to sit and enjoy a story with a special great-grandparent... a voice than they are used to hearing, with a special message to them personally and a wonderful story to share.
Luke was the first to pick up the books. He loves both stories. He understands the way the books work and know what page you're on - so he always sits by the brightest light when he's looking at the books. He repeats the pages that he likes. I think his favorite is Nana Jean's page in Frosty the Snowman when Frosty led them down the streets of town right to a traffic cop. He finds a way to lay the book on the ground so he can physically participate when he heard him holler STOP!
Now Luke has gotten Will and Matt to get excited about the books. We try to keep the books out of Matt's hands, though, since he doesn't quite love them how we'd like yet!
Every night before bed, Luke pulls out the two treasures and sits on Will's bed to read them together. Will enjoys looking at the pictures as Luke turns the pages. But I think Will's favorite part is that someone is actually reading a story to him!
Grandma Jean, Grandpa Milt, and Grandma Mary - I know that it took a little tech savvy to record these books, but you've done good! Your voices (and swallows and burps - love it!) resonate through our house each day of this most wonderful of seasons. I hope you know that although we're very far away, there are 5 people here who love you very much and enjoy the sound of your voices more than you can even know.
Monday, December 12, 2011
Will isn't much of a hand holder. I always figured that he didn't want to hold hands because he didn't want to be held back any more than he already is. He doesn't have much control over his body but is able to move his hands around on his own, so to him, hand holding could be more like an act of aggression than an act of love.
Imagine my surprise a couple of weeks ago when I looked into the back seat of the van and saw Luke reach out to hold Will's hand, and Will not minding. And this moment was not fleeting. It went on for a long time, and Will was just as happy as could be. Calm and happy to be holding hands with his protector, caregiver and moderator. It was breath taking.
I wish we could extend those hand holds to watch over Will all the time.
We're losing the battle with controlling Will's seizures. Early one morning this weekend, Will woke up around 4am. I could tell he was still tired, and so was I. So I coaxed him back to sleep. I wish I hadn't.
I woke up about an hour later for no reason. No sounds, no gags, no vomit, no thrashing. But I went into Will and Luke's room, and there was Will. Eyes wide, bulging open, fixed to the left. Pillow covered with vomit and mucus. I could tell he had been seizing for a while because his head and left hand had started to tic. Rhythmic and jerking. Not stopping.
We administered the Diastat, and for the next 8 minutes while it took hold, I watched in anguish and fear as Will continued to twitch. Those minutes go by so slowly. Thank God that medicine works as quickly as it does.
I feel like this is one that I could have prevented. I should have known. I shouldn't have coaxed him back to sleep. I feel so much guilt, my heart is heavy and breaking open with these thoughts. If he had only stayed awake, he would not have suffered this seizure. Instead, he suffered through a seizure in his bed, by himself... all alone. Unable to cry out for help, unable to alert us that something was amiss. I shouldn't have gone back to bed. I should have known.
This morning Will woke up again at 4am. I woke up with him. I laid in his bed, and we sang hushed songs for an hour until it was time to wake up Nate. We shared that special time together, and he did not seize. I wish I felt relief, but I still feel so much guilt.
From a neurologist perspective, this last seizure means that we again bump up Will's dosage of Lamactil. But for me, this last seizure means even deeper delving into some of the options in front of us. We're probably going to be putting Will on a ketogenic diet in the near term (future blog post to explain) and also starting initial consultations with neurologists for surgery.
It is with the heaviest of hearts and fearful paths that we find our deepest strength and passionate purpose. It is with tearful eyes and prayerful souls that we ask for love, truth, support and guidance.
Sunday, December 11, 2011
1) We actually left home on time and arrived early at the Railway, thus eliminating the drama with arriving late and getting yelled at. Ironically the same angry dude that repeatedly told us we were late last year and then apologized when we returned at the station was the same person we had to talk to about getting Will's wheelchair onto the train. He got flustered and upset when we told him that we had 13 people in our party and we all wanted to sit together. Thankfully all we got was a sigh and a head shake before he sucked it up and figured out how to get us on the train without any bad words. Everyone else we encountered was very accomodating.
2) The weather last year was cold (35 degrees) and snowy. This year we had sunny weather and the high was about 54. This made a huge difference. Last year we sat in the caboose, which is enclosed. This year we sat in an open air train car, because Will's new wheelchair is too wide to fit through the doors of the caboose. We will have to keep this in mind in future years. The open air was good because the weather was mild, but in the case of cruddy weather in future years, we don't have the option of the caboose anymore.
3) We took friends this year! We met up with two sets of friends who each have 2 boys. There were a lot of boys who love trains. And Santa. Can't beat it.
4) Santa was actually in a good mood! Last year, we were the last people he saw before the day was out. He wasn't very jolly. Thankfully no one cared. I think Luke's heart would have been broken if Santa hadn't been enthusiastic this year. He was SO excited to pull a Clark Kent and show Santa his 'Nice List' shirt under his coat. Santa was appropriately excited about the shirt, and really talkative and inquisitive with all the kids in our party. Will wasn't really in a mood to see Santa, and when I attempted to put Matt on Santa's lap, he proved his age and angrily wiggled away. So only a picture of Luke with Santa this year.
5) I turned down the coal when the elf tried to give it to me. I also warned everyone around me to beware that the coal was real, and would leave coal dust everywhere! Perhaps I wasn't supposed to let the cat out of the bag. Perhaps its a big elfish joke to give the unsuspecting kind-hearted, city-living, 21st century mother a lump of coal, and laugh when she puts it in her pocket and smudges her unknowingly coal-covered hands all over her face. Not that that's what happened to me last year... I'd never touched coal before, I didn't know what would happen after I touched it, and none of the mothers around me on this train did either! I considered the warning my civic duty.
Wednesday, December 7, 2011
Luke: Matthew, do you want to try to go to the potty too?
Apparently Matthew indicated yes. The clothes came off. The diaper came off. Luke got Matt a stool from the closet. Luke helped Matt onto the stool. Matt grinned. Big time. And then let loose a big pee, past the toilet bowl, and right onto the floor.
Teacher Luke was mortified. Such a look of disappointment on his face. I couldn't contain my laughing. Ran to get the camera through laughs and tears. Got this one shot before the moment dispersed and Luke insisted that Matthew clean up after himself.
Monday, December 5, 2011
Luke understands a lot for a 4 year old. He understands that when Will doesn't feel well, he goes to the hospital. It isn't uncommon for him to ask to accompany Will to physical therapy so that he can cheer his brother on. Luke leads the clapping charge when Will plays "Row Row Row Your Boat" on his computer and we all clap in unison. He knows the buttons to push to start and prime Will's feeding pump. He asks for Will's opinion when choosing an Elmo DVD to watch. Luke knows that when he pushes Will in his wheelchair, Will will laugh.
Because he's the oldest, though, we do expect a lot from him. There are consequences for not finishing his dinner and for making Matthew cry. He still goes to time out for not listening and following directions. We expect him to share his toys and walk away from a situation when someone hits him or makes him frustrated. He dresses himself each morning (including his orthotic braces on both feet), tells me what he'd like for breakfast, clears the table when he's done, and pushes in his chair. Sometimes I wonder if we expect too much. Sometimes I have to remind myself that he's just 4 years old. And although he doesn't have the severity of disability that Will has, he has his own set of challenges. Speech and developmental delays, behavioral problems and shunt malfunctions are very real, very present, and very possible issues with him.
It is easy for us to look at Luke and look at Will, and think that Luke is fine because he is more physically capable than his brother. We got caught in this last year when we were transitioning Luke into his pre-K program. We were totally surprised when we got the report that he was almost a year delayed in his speech.
Since that time, we've been more vigilant about his development as a preemie in his own right. Luke continues to have some issues with distractability in the classroom and following two-step directions. These are things that we will work on until the next issue arises. I talk to his teachers regularly, and for whatever reason, always expect for them to drop the next shoe. For a while, they expressed concern with his speech, his apparent lack of focus in the classroom, his desire to only ever play with the computer, and his dissatisfaction when he had to relinquish the computer to another student. Recently, the tone has changed. Luke is maturing, and to their and our delight, they now describe him in these wonderful words:
Kind. Chivalrous. Mild-mannered. Friendly. Inclusive. Social. A friend to all. Calm. Talkative. Descriptive. A joy. Smart. Attentive. Hilarious.
Wow. What a kid! We're so proud of him in so many ways. I hope we tell him enough. I hope he knows just how wonderful he truly is, and how blessed we are to have him.
Everybody wants to be somebody's favorite something. When Luke and Will were born and Will had blonde hair, I called Luke my favorite brown-haired son and Will my favorite blonde-haired son. Since Will's hair has darkened and Matt came out with brown hair, I had to rethink my favorites. One night at bed time, it just came out as I was saying goodnight:
You're my favorite Luke.
There's no comma in there... saying "you're my favorite, Luke" would have another meaning (a big no-no as a mama of 3!). But in the whole wide world, this little boy with the biggest heart around owns the tag as Mommy's favorite Luke. There is no other Luke that compares.
Not too many nights ago, I was kissing Luke goodnight and whispered my Luke-favoritism into his ear. He hugged my neck tight and whispered back:
You're my favorite Mommy.
Oh, be still my heart.