Therapy Works

I intended to write a post nearly 2 months ago when Row actually became a TWO year old. Now I'm finally getting around to it, which is not really so bad because he's got even more amazing things to brag about.





Row is currently logging 4 hours of dedicated Therapy per week: 2 of Physical Therapy, 1 of Occupational Therapy, and 1 of Speech Therapy. Most of his sessions happen at our house, but occasionally we go elsewhere (a park, the library, or even his PT's house), and his performance tends to improve in the different environments. He's starting to really sass it up and go full-toddler when he's working at home: more meltdowns, less productive work. On top of all his therapy he's also just started attending SCHOOOOOOOOL! His speech therapist, along with another Speech Pathologist, runs a speech preschool a few days a week. There are 8 children total, all of whom have some degree of speech delay. Row now goes there on Tuesdays and Thursdays from 8:30-10:30, and is having a blast! He's enjoying the new environment, fun new toys and tools, and little friends, and most of all, from being away from me. He's hitting that age where seeing Mommy means melting into a little baby, but being with a teacher figure makes him remember that he's a big boy. So far he's doing a really great job for his teachers and he's sad to go home with me afterward.

His communication has improved so massively in the last few months. Although he still isn't saying any words that a stranger would recognize, he does have a few consistent words of his own creation and countless words that he understands form us. He's also using so many facial and gestural cues to make himself clear. He asks for Mama ("Ah-Hah") and his toy turtle ("urh-urh")---although he has started flinging "turtle" around to mean all of his little plastic animal toys....so meh. He can tell you what an Elephant says, and he knows a book when he sees one ("-uk"). He can really takes instruction from us well; the vocabulary that he understands is now too much for us to even begin to make a comprehensive list. He can basically grasp anything at this point.



When he is dissatisfied with a game we're playing or something he's being offered, he just flees. He turns tail a wriggles away. This first started with his friend Avie; as she began to get mobile and a little rough with her Rowie-love, he began just "running" away, rather than deal with her. It was funny at first, but now that he's using it against us, it's a bit more, um, un-cute. Many times he'll just wriggle off to his room and be by himself. I suppose he's practicing for the teenage years, when no on will understand him.





Remember when I was sooooooo happy about Row's adoration of my singing? Yeah, I totally created a monster. He now goes through phases where he only wants ONE song. The song itself changes from month to month, but when one song is in favor, it is the only one allowed. At the moment he has chosen The Man that Got Away...so I've got to whip that out ALL THE TIME...luckily it's an amazing song, unfortunately it wears me out. So yeah, I've instilled in him a love for great music, but I've also somehow turned myself into a Mommy Jukebox with and endless supply of nickels. Even his musical toys are getting run ragged. He'll often have up to three singing toys going at once. He'll start one, then the next and and the next and just keep cycling around until I feel I've gone thoroughly mad.

He has been doing some really great work with his standing and walking; he'd be doing even better if he could unsassify himself and stop fighting the process so much. His balance and strength are so much farther along than he likes to admit. His therapy sessions get pretty loud (he's a soprano belter at the moment), but his form and stamina are steadily improving. Motivation is absolutely the key with Rowie (an, ya know, all children). Now that he is finally interested in pulling up and reaching things (like dear old mom and dad...and their dinners), he is frequently trying to get up and when conditions are right can do so without any help at all. He still doesn't like to stand straight up and control his trunk or bear all of his weight through his legs, instead he leans on the couch, or whatever he's pulling up on, which is fair, no sense doing more work than needed, I suppose. When forced to walk sometimes he instigates each step and is really interested in getting somewhere, and other times he just melts and forgets he has legs at all. He's done really well using his Upsee with Daddy (pictured above) it's a great device that allows us to determine how much of his own weight he's responsible for while walking and it gets him up and interested in the walking progress. He likes to be in it and dictate where they walk. He loooooves the POWER!

We get so many kisses and snuggles lately that we're nearly swimming in slobber. When Row is proud of something he's done, or we praise him loudly, he grins his cheezer grin and leans up to us for a kiss, even if we're across the room. It's super adorable and hilarious. We love tickle fights and just looking at each other and laughing. For every wicked toddler meltdown we get we also get some super fun sweetness, so I guess it all evens out.

Eating has finally become more "interesting". He used to eat absolutely anything, but now we're seeing more power struggles (very age-appropriate). He'll love something one day, hate it the next. Lots of turned up noses and tossed spoons around my house. Luckily there are always cheerios. I've never seen him say no to a cheerio. So as long as long as General Mills keeps cranking out those little life saving O's then I know Row won't starve. Annoyingly, he knows from whence Cheerios come, so whenever he hears the pantry door open he lets out a whiny squeak which translates roughly to: "I know there are freakin Cheerios in there, and if you love me at all then you will get me that whole box...or else why are you even opening that door? The door to the Cheerio closet."

His right arm is still very much a limp appendage that he cannot use deliberately, but his awareness of it's presence has increased significantly. He often grabs it with his left and and fiddles with it. When forced, in therapy times, he can use his right arm to press big buttons on toys, or turn pages in board books, by shifting his weight and moving his chest forward and back while we help hold his right arm in position while restraining his sneaky, eager left arm. It's going to be a long process but he's doing well.

Row is really loving the chance to make choices. Everyday we let him pick the shirt he'll wear and then his jammies at night. We hold up two options, he considers them both, back and forth, back and forth, then he grins at me and grabs one, then joyfully helps me get it onto him. He's loving his little accesses to power. He's also becoming more aware of routines. If we get his medicine and teeth done at night then change his diaper and put his jammies on but then DON'T put him into bed, he gets upset. He knows the bedtime order of operations and doesn't care for us screwing it up.

He's a (mostly) jolly and cheerful little man lately, though he is becoming increasingly aware of the power he holds over us and his world, and he is starting to take advantage of his position. He is very much a two year old now. I often feel frustrated with myself because it always feels like we should be doing more: more exercises, more quality educational things, more cleaning the house, more snuggling, more baths, more...everything, but then another day has passed without much tangible evidence that I've done anything worthwhile. So it's important for me to periodically tally up Row's abilities and achievements to see that we are, in fact, progressing, even if it feels, at times, that we're merely spinning our wheels. We are experiencing the same things all toddler parents do, and that, in itself, is incredible. We once wondered if our son would be "normal" in any way, so when we are pulling our hair out over a food-based power struggle or a tantrum two year old meltdown, we know that he's normal, and that we're fine. Like all parents we will take each day's challenges and joys in our stride and keep on keepin' on.

Wait, what? It's been a year?

                          How can it possibly have been a year already since Young Master Norris went under the knife and came out, eight hours later, a Super Hero?

            July 10th, 2013- I spent the entire day desperately trying to think of anything but Rowan. Paul, Joan (Paul's Mom) and I sat silently in our private waiting room surrounded by books, magazines, computers, and phones, seeking distraction from every possible source. We received hourly calls from one of the nurses to let us know how the procedure was going, and each check in was positive, but every time that wretched phone rang my stomach plummeted. After an 8 hour wait the surgery was done and Row was transferred to the PICU for a two night stay before being sent upstairs to the 12th floor Neurology floor to recover.

                   Since coming home from that immeasurable 15 days, Rowan has flourished. He has been working incredibly hard to catch up on all of the developmental milestones that he had gotten behind on (thanks a lot, Seizures!). With Physical Therapy and Occupational Therapy, regular eye checks, and lots and lots of love and playing, this boy has grown and grown, getting cooler, cleverer, and more skilled every day.

                  Nowadays he can sit up by himself, and spin and roll, and stretch, and reach, and wriggle all over the floor to get nearly anywhere he likes. He's working hard on bearing weight through his legs with the help of his ankle braces (which are covered with dinosaurs) and his resident grown-ups, so that one day he'll be ready to stand on his own and then, naturally, walk! And Cha-Cha!

       He can feed himself any food you like, and he likes most of them. He likes a selection of beverages to choose from, so you can usually find him in the company of not one but two sippy cups, taking alternating sips. With only one strong arm to use, he most often decides to go "hands-free" and just hold his sippy with his teeth. No big deal.

Although he has yet to use any genuine words, he definitely communicates, and comprehends and great deal. He knows what it means when we either say or sign "All Done", and for a while it made him cry, since it was typically in reference to food. He can sign for "More" by patting the floor or table (of late this sign has seemed to also mean "Help" or "Gimme-Dat!"). He tries really hard to say "Da-Da" and "Ma-Ma" which are both "AH-AH"...although, we've lately praised him so much for this that he uses it all the time for fun. So I guess it's a bit like "Smurf". He raises his left arm to be picked up and gives me his dirty hand when he sees the post meal clean up cloth.

          He has a passionate concern for the retention of ears. If you hold him on your lap he will promptly push your face into profile and confirm that your ear is intact, either with visual confirmation, or even a manual check, or sometimes, even a digital probe...just to be sure. He also has many ocular worries...so he'll steal your glasses, right quick.

      Speaking of eyes, he's got a lazy one. Since the surgery he has developed a droop on the right eye, and the doctors say that's completely normal and to be expected. If it needs permanent correction there is a common surgery that they can do after he's two, but for now we're working on it by wearing a little eye patch for two hours every day for the time being. I try to decorate it each day, for a bit of whimsy.

   He loves to play peek-a-boo by grabbing our hands and putting them over our eyes, then pulling them down, and putting them up, and pulling them down, and on and on. He'll also peek-a-boo himself by emptying a small toy basket and covering his face with it, then pulling it down as we shout "There he is!". He's learned how to beep his nose to our noses (SQUEE!!!) and has now incorporated it into Peek-a-boo, forming a hybrid game called Beep-a-boo.
   If you try to ignore his nagging request for a game of "Row, Row, Row Your Boat", well, fat chance, he will Row you whether though Wilt or no. He has trouble with boundaries.

He can stack blocks on top of each other both when prompted and on his own.

He is jealous of the kiddos I babysit, and is beginning to learn how valuable Mommy is to him. He's also begun to have very strong opinions about people. He has the occasional stranger anxiety, and when either of his therapists walks in he dissolves into tears at the very thought of having to workout (like mother, like son). Sorry, Kristie and Kim, you really aren't monsters.

Row is mesmerized by music (particularly theme songs, most especially the Portlandia theme:) and will stop what he's doing to stare at the source of a good song (even if it's just his loud mom). He picks and pokes at all of his toys to find the buttons that make songs. Other sounds can just go to Hell as far as he's concerned.

He's already a seasoned traveller: he made the long (22 hr) road trip to Florida last winter with nary a peep and made the same trip but by plane alone with Mommy in March and was stupendously well behaved. He's been to the beach, Walt Disney World, The Wizarding World, St. Augustine, The Temple of Doom,  the St. Louis Zoo, to see the manatees, to see a dancing shark (R.I.P. little Kneivel shark), and to the coolest places in the world (his grandmas and grandpas houses).

Row has done so many AMAZING things that we never felt certain he'd EVER do, and there are more new tricks every day. He's so determined to do things his way and make it work. The silver lining of this happening while he was a baby is that A) he'll never remember, B) his development will suffer less than an older child, and C) he'll never know what he "should have" and what he's "missing". He will do things Row's Way from, virtually, the beginning, and that will rock. 

After our checkup with the Neurologist we have a big Thumbs up on his progress. His EEG came back clean again (on the healthy side, which is the only one that matters now) and after one more year we can start weaning off of his final anti-seizure medication.

He's a superstar, and we are more proud of him than we ever thought we could be. A parent is proud of their child's tiniest achievement, however insignificant, but Row's achievements are ALL significant and impressive. This boy is outstanding, and I'm so lucky that I'm allowed to spend the rest of my life watching him grow, and hopefully, (at least for a while), beeping his nose (SQUEEEE!!!)

One Happy, Happy Family!

A Year Ago Today (Sad)

         Today is February 16th, a day that will live in infamy...at least in our family. A Year ago today,  Daddy, Auntie Rachle and I woke up and planned to have a photographic adventure day with little Mr. Six-Week-Old Rowan, when suddenly...he seized. There began the very long drama that we weren't yet aware we'd been cast in. So this little boy, in his gigantic Penguin jammies, scared the hell out of us all, we rushed to the hospital, and you know the rest...

     Now, a year later, with seizures and surgery both behind us, it's hard to remember the paralyzing terror from that day. What was once a twitching little baby with eyes out of focus and perhaps no hope of winning his battle with seizures is now a beautiful little boy with opinions, likes and dislikes, and smiles that will melt any heart. We're by no means finished with epilepsy, it is a part of Row, but, at least for now, we've triumphed, and that terrifying day holds no power over us. Row has suffered, fought, and conquered, and the future is bright.

I now look forward to the day when Aunt Rachle can repeat her visit and get a well-deserved do-over.

amazing photo by Rachel Sullivan Photography

Reflection

When Rowan Edward Norris was born at 7:22 pm, January 3rd, 2013, my world began anew. Everything I'd ever done or wanted seemed suddenly insignificant, because this tiny (or huge, at 9 lbs 12 oz) human was mine to care for, mine to protect, mine to enjoy and love. Now, all that I just said is very lovely and poetic, and also cliched. Yes I genuinely felt all the boisterous and joyous and silly, happy feelings associated with becoming a parent, but I also felt plenty of the ugly things along the way too; the things no one likes to mention in greeting cards.

For the first few weeks following his birth I felt miserable. After laboring and pushing, then needing surgery, my lazy abdomen was wrecked. I couldn't sit up without astonishing pain for over a month, and let me tell you, when an alarm clock goes off at 3 in the morning to remind you to force your baby to eat, the 90 degree jack-knife sit-up is agonizing to such a tummy. 

Yes, we had to set alarms to wake us all up to force feedings into Row. For anyone who's seen him eat now this may seem a ridiculous falsehood, but I assure you it's true. He barely made the cut-off for amount of weight you're allowed to lose and still get released from the hospital. He failed to gain weight adequately at home, so we were seeing his doctor a couple times a week the first few weeks (during which I could barely stand, and was certainly not allowed to carry him in his car seat).

We tried breast feeding from the start, but little Row just couldn't latch on well (later we'll find out why, ooo). In the hospital we tried every position with pillows and nipple shields and siphoning formula in beside my nipple to make sure he was getting enough liquid for his effort. But nothing worked well. Unfortunately Rowie also just never seemed very hungry, so he was happy enough with the low amounts he was getting, but the scale sure wasn't.  At home, it was a nightmare. We tried every position on both sides, nipple shields became a requirement to get anything at all accomplished. We finally got to where he would drink alright if the following occurred: I laid on my side (on a blanket, obviously, because dribbling and leaking was most definitely going to happen), I used my nipple shield (which is annoying to keep clean when you can't easily run back and forth to the sink, btw), and I needed a burp cloth handy for mess and my phone on hand since I was, at the time, using it to track feedings, diapers, etc. All of this needed to be in place for any hope of success, and if, once we'd begun, the latch was broken for any reason, he WOULD NOT reattach, no deal. So if he had a bad suck that was hurting me I had to deal with it, because repositioning was not an option. I knew that nursing was often difficult, but I thought there was no way it was supposed to be this hard, or how could anyone ever leave there house and feed their baby?

Needless to say there were a lot of tears shed by everyone during these weeks, and a lot of mandatory formula was consumed and sad expressed breast milk was stored and reheated. Those were unhappy times, and I can't say that I'm glad we ever encountered seizures, GOD NO! Yet I am glad that I can attribute our utter failure at nursing to the seizures, and that maybe with any future babies it might be possible to nurse successfully.

Now when a child is born, they already have a long list of expectations that they will either meet, fail to meet, or exceed. It's not really fair, but that's life. And we prepared for parenthood by assuring ourselves that we would be open and accept Row for whomever he was, and we would happily support any life choice or endeavor he made (perhaps not his plans of going to serial killer school, but mostly anything). If he wanted to be a scientist, we'd be happy, or a singer, a teacher, a truck farmer, or *sigh* even an athlete. We planned to happily sit through any game, school play, concert, science fair, math competition, or battle of the bands that came along. We would be over the moon to dance at his wedding, no matter how many states it may or may not be legal in. And we were going to give him as fair and balanced an education on religion and politics as we could and raise him to make his own decisions about his beliefs. We were eager to learn about and accept all these different elements of our beautiful son, and to love him for them.

But I wasn't prepared to accept was the chance that he might be handicapped. 

In the early days of the seizure saga, when we were desperately awaiting answers, and getting him next to no relief, there were a great many scary predictions floating around our hospital room. They didn't know if they'd ever be able to stop the seizures at all, so we didn't know if he'd even LIVE. I have to repeat that: even LIVE! Now that should have been the most frightening to me (and truly, it was) but I hate/have to admit that I was almost as frightened of the potential for him to be devistatingly handicapped. I, since childhood, have had an illogical fear of the mentally disabled (I am not proud of this, but I had a bit of a shock at a girl scout shin-dig once, and it left me a bit prejudiced, for which I am very sorry, but it's true nonetheless). So I have always had a nagging fear of having a handicapped child because I feared not knowing what to do for them, and I feared that if Row was indeed handicapped then his life would be awful (now I'm talking never-able-to-feed-yourself level handicapped, mind you). I forseaw him never learning, never developing, never being able to care for himself, and remaining a child his (and my) entire life. I saw him outliving me and Paul, but unable to go out into the world and take care of himself. I saw him becoming a burden on society, when my dream has always been to breed brilliant children who will add something to the world, not to merely survive it.

I was paralyzed with my fear of what would become of Row, of the baby I'd created. Had I created a being that would be a burden to his family and a drag on society? Or worse, had I created a baby that I would then have to bury? How could this be? I'd only been a parent for six weeks...how could I have destroyed my perfect baby's chances already?

Ah, there's the rub, "my PERFECT baby". 

Whatever our plans and visions for Row had been were gone. The imaginary baby we'd dreamed up for ourselves had disappeared into the reality of who our son actually was. It was time to accept our son the way he was and to see to his needs, whatever they were, as best we could. Our son was not flawless, but he was perfect (and anyone who's met him can tell you that that applies to the present tense too).

When Row first started seizing at 6 weeks old, (really he'd been seizing all along, we just didn't see them, they were small up til then), it was insane. We were in and out of the hospital, trying drug after drug, and I feel like I did nothing but log seizures. I had a notebook and I tallied seizures all day. On some medications they would be small clusters of 3-10 second seizures, and on others it would be clusters of 100s of blink-long seizures. I would just sit there watching him, ticking them down. We got to where we could see a batch coming, and our hearts would just drop. After a few hours of no episodes we'd start to hope that maybe this medicine is starting to really work, now we're getting somewhere. Then we'd get an episode every hour for a while and just feel hopeless. I felt with each seizure, each time he lost focus and couldn't see me anymore, I felt his little brain cells flickering out. I felt him losing the capacity for learning and growing. Each seizure was stealing another grain of his potential, and I couldn't stop it. All I could do was sit there and count, and report back to the hapless doctor. 

If there is anything worse than seeing your children suffer, it is being helpless to stop it.

After the nightmare in Columbia, where we got no answers, we fled to St. Louis, where we found the Neurology team ranked 2nd in the nation, so, score! Suddenly we had answers, almost instantly they knew what was wrong and gave us or options. It's funny, thinking back to the day Dr. Ryther told us about the surgery, how utterly terrifying it sounded, and with good reason.

What Happens During a Functional Hemispherectomy?

A functional hemispherectomy requires exposing the brain using a procedure called a craniotomy. "Crani" refers to the skull and "otomy" means "to cut into." After the patient is put to sleep (general anesthesia), the surgeon makes an incision (cut) in the scalp, removes a piece of bone and pulls back a section of the dura, the tough membrane that covers the brain. This creates a "window" in which the surgeon inserts special instruments for removing brain tissue. Surgical microscopes are utilized to give the surgeon a magnified view of the brain structures. During the procedure, the surgeon removes portions of the affected hemisphere, often taking all of the temporal lobe but leaving the frontal and parietal lobes. The surgeon also gently separates the hemispheres to access and cut the corpus callosum. After the tissue is removed, the dura and bone are fixed back into place, and the scalp is closed using stitches or staples. 

          Needless to say we were petrified at the very idea, but now, safely on the other side, I don't bat an eye. I'd say to any parent in our situation, "Say yes! Sign the paper immediately and get it done as soon as possible!" The results have been astounding, and with time they'll get even better. This kid is soaring! He is making such vast improvements, and in the beginning we thought he would seize himself to death, literally to death.

    

In the days leading up to surgery I kept trying to put it out of my mind, to ignore it. I wanted to enjoy every minute with my man (since he was then taking a stronger, though temporary, medication that was making his seizures almost nothing, and totally unnoticeable to us) and he'd been improving already as far as development and fun times go. We pretended like July 10th wasn't coming and we just carried on playing and learning. Then when I could no longer hide from it and had to start packing our bags for St. Louis I really started to fret about what we'd be told to expect as far as losses. We'd been told he would definitely lose his right field of vision in both eyes (just imagine a horse blinder on the right side of both of your eyes) and his gross motor movement in his right arm would be lost for a while then regained with therapy and his fine motor in his right hand would be lost forever. With that ringing in my ears my eyes lingered over his happy little right arm swinging at toys as he bounced and I stuck my finger into that little right hand and felt his intentional squeeze on the night before surgery. I cried a little, knowing that I'd never receive a reciprocal squeeze in that hand again, knowing I'd be buying left hand scissors and can openers for many years to come.

One last hand hold, in case the worst happens, and I never get to hold any of your hands again.

After surgery, we were, a bit unnerved, for sure, although the doctors had prepared us for all the immediate reactions and recovery time, it still caught us off-guard to see this swollen, puffy face, that didn't look remotely like Rowan, with a tap draining spinal fluid out the top of his head, and a strip of bandage covering an enormous question mark scar running from his forehead around to his ear. His little eyes were puffed shut for days, he had a breathing tube in and was making wretched rattling breaths. He couldn't even really cry because his throat was so hoarse. The worst was watching the Keystone IV teams bumbling to get an IV planted in one (or all) of his swollen little limbs. 12 attempts one night...12! It was agony and we finally had to leave the room. We ended up spending 2 weeks recovering, it would have been one, but one of his may IV sites let a little infection in and his foot was all red and swollen for a while, so we couldn't leave. The antibiotics for the foot made him vomit all the time so we couldn't even leave with the antibiotics because he couldn't keep his food down. *sigh*

Finally we were discharged on July 23rd, late at night, and Daddy came back to rescue us. We went home and tried to figure out what our new normal would be. Rowie was rockin' his baseball scar for a while, until his long lustrous blonde locks started to take over, and now his scar barely peeps out half an inch onto his forehead. That's my little boy wizard.

My dad is silly

   Nowadays, this little goofball is really growing into his own. He is feeding himself (occasionally allowing us access to his gaping maw with a spoon, but usually preferring the cram-my-entire-hand-in-my-mouth-and-maybe-get-some-food-in-too method of eating. He is developing strong opinions about a lot of things, and making them known. His therapy has been going so well from day one. His OT and PT are so proud each week of the progress he's made and are constantly needing to give us new assignments to work on. Row is eager to do things for himself and to explore and examine the world. He loves songs and books, and he loves to get attacked by any kind of tickle monster.

Yeah I sit on the couch...big deal.

Working in my office. I've gotta fire Jenson later.

No! I do NOT like it, sir.

My mom is the dog's end.

88 miles and hour, baby!

What Cheerio?

Posey Christmas, everyone.

In further news: We went for our 6 month follow up EEG (pictured above) and it was a strange experience. It was our first time really back in the hospital since surgery, and being there in the darkness, smelling that old familiar EEG glue and seeing spiky lines dance across the screen really flashed me back to the bad times, to the fear. I was on the bed with Row while he napped his way through the exam and I just thought "WOW! We've been through a hell of a lot, and he's doing so amazingly well now. I almost don't care what these results say. I feel like we've beaten this!" 

Fortunately, my feelings were right. The results came back and his healthy side showed 100% seizure freedom! Now all that remains is to wean him off of his meds (slowly, of course), and so far that's going very well.

     

Someone even had an amazing trip down to Florida for Christmas. He was a perfect traveler in the car and had a fantastic birthday party with all his Florida family and friends. We are so happy that we had a healthy and joyous little boy to share with everyone.

P.S. He likes cake.

We are so happy to have endured this harrowing first year of Row's life, and we are thrilled to know that the next one is looking so very bright!

                               Thank you, and Goodnight!