Theraplay

Jasper is barely eighteen months old but I cannot remember a time when I did not observe his “play” with the eye of a therapist. As a newborn, I watched Jasper constantly for the visual tracking his neurologists said would not happen. I rotated a set of bold, developmental soft blocks back and forth in front of his eyes. I rejoiced the first time, around eight weeks old, he looked at and responded to the Stim-Mobile I had placed above his crib - I knew he could see it and took video for his neurologists. Our vision educator came into our lives when Jasper was three months old. By then, I was already his keen observer. From our vision educator, I learned to observe him even better.

The stroke was bilateral, but somewhat worse on the right. Jasper kept his head turned mostly to his right for the first several weeks. As his body movements developed, I watched for asymmetry, making sure he used both right and left sides equally. He did not. He would cross his midline with his right arm to reach something on his left, instead of simply engaging his left arm. From the beginning, I tended to place objects to Jasper’s left, in the hope of coaxing him - his limbs, his eyes - to the left. I hung a black and white infant toy left of center on the handle of his car seat. A stuffed animal lion charm dangled down on the left side of his stroller. Fortunately, Jasper’s gross motor asymmetry was mild and only affected his upper body, and seemed to resolve on its own.

Last week was Jasper’s eighteen month check up. The check up appointments are becoming more difficult. When there were only three things he was supposed to be doing, Jasper was doing great. His therapists told me he was doing great. Now the list of things he should be doing has grown, along with the list of things he is not doing... yet. In addition to the list, his pediatrician asked about other skills. Can Jasper follow a command, if you ask him to go get his shoes? Does he bring things to show you? Does he clap his hands? No... not yet. I add, he does not wave bye-bye or point either... not yet.

At school, Jasper’s teachers and therapists work to diversify his functional play, and to increase his attention span. At home, I sit down to play with Jasper and automatically choose ring stacking, which Jasper can do, though his limited depth perception sometimes gets in the way. It occurs to me we should be working on more challenging play - stacking blocks, putting a puzzle together, pointing at simple pictures in books - play that Jasper has not yet mastered.

Jasper and I do not “play,” we theraplay. It is difficult to shut it off. When watching him, I can’t help but notice the quality of what he is doing, how he is or is not using his vision. He doesn’t get the ring quite right on the stack. (In our house, there are lots of re-dos.)  He does not track the ball as it rolls past him, but he still knows where to find it. He can almost balance one block on top of another. Again, depth perception interferes. I sometimes wonder what it must be like to watch your child play innocently, without anxiety, expectancy. To watch your child grow, develop, hit milestones easily, effortlessly. And think, When will Junior do this or that? Instead of thinking, Will my child be able to do that?

Right now, we are on summer break from school. Summer break from therapists. Time to run in the grass, go swimming, bike with momma. And plenty of time for theraplay. All I can think about is crossing some things off the list by the time Jasper goes back to school in mid-September.

Strabismus Surgery

It is hard to say how much sleep I got the night before Jasper’s eye surgery. Jasper fell asleep early - earlier than he had in weeks, allowing me time to prepare physically - pack his baby blanket, his favorite g-raff (giraffe), his radio. And time to prepare emotionally. Surgery had been on various parts of my mind since January, and on the calendar since March. Now I felt oddly calm, ready. I had done what I could to prepare. The week before, Jasper and I went on a surgery pre-tour at Swedish First Hill. I knew the layout, the sequence of events. On the morning of surgery, I would not waste energy being discombobulated.

My best calculation is four to five hours’ sleep. In spite of preparation, I lost at least a few hours to worrying. The sound of the alarm came too soon. I let Jasper sleep as long as possible. It wouldn’t take much to get him ready - no milk, no food, the hospital would provide garments. When I woke Jasper, he woke without fuss. I changed his diaper, put a jacket on over his sleeper, and we left.

Surgery is scheduled by age. Jasper was second, 8:30 a.m. Check in no later than 6:30. The sequence of events went as expected. Upstairs, waiting room one (toy room). Review medical history with nurse (“No, this is not our first hospital experience...”). Then downstairs, to surgery, and waiting room two, where we would wait before and during Jasper’s surgery. Throughout surgery, there would need to be someone in the room who could sign a consent form.

By now, Jasper must know we do not wake up that early for anything good. By the time we got to waiting room one - and attempted to do vitals - he knew something was up. I put him in his surgery garments. A dull yellow top with equally dull, but not quite matching, yellow pants. Both were at least two sizes too big for him. From this point, in his clownish outfit, until just before surgery, there was almost no consoling or distracting him.

Waiting for 8:30 was almost as excruciating as waiting during surgery itself. Waiting room two also had toys, but Jasper wanted nothing to do with them. For a short time, I distracted him by blowing bubbles. Aside from that, he only wanted to cling to me. He wailed when I ducked into the restroom for a few minutes. I kept calm, knowing I would feel better as soon as we saw our ophthalmologist, Dr. Hope.

The first strabismus surgery of the day was a seven month old baby girl with crossed eyes. Her surgery ran long, meaning ours would be a little late. Shortly after 8:30, our doctor came in with a report for her family: “She did great...” he began. As soon as I heard those words, I started visualizing him delivering the same report to us: “Jasper did great...” In my mind, I repeated this over and over - the same way, when traveling, I visualize myself safely arriving back home.

Jasper was next. The doctor again explained the surgery, what to expect. Blood red eyes, bloody tears. I brought him photos of Jasper, so that he could double check the angle of correction, forty degrees. The anesthesiologist came over then. He described his role, the process. He told us Jasper was at greater risk riding around in the back of the car than he would be on the table. I believe you, I said. My job was to stay with Jasper, hold his hands, talk to him, sing to him, while the anesthesiologist held the plastic mask firmly over Jasper’s face. As soon as he falls asleep, I will kick you out, he told me.

Our Child Life Specialist returned for Jasper shortly afterward. Jasper had fallen asleep while the doctors were talking to us, and I’d hoped he’d stay asleep. He did not. I got up, Jasper in my arms, and we followed her down the hallway through heavy double doors. I walked into the room and lay Jasper on the table as I was told. Hold his arms down, the anesthesiologist reminded me. I held Jasper’s arms and cried, singing “Willie Was A Whale,” without even thinking.

            Willy was a whale and he walked on the water

            And he tried to be wough and he tried to be tough

            But Willy wasn’t weally wough he wasn’t wough at all

            He was a willy white whale and he walked on the water, oh yeah

Jasper’s arms eased up, then relaxed and were still, and I was told to leave. You did great, the anasthesiologist told me. I left the room crying, guided by our gal. I went upstairs to the main lobby, found my friend who was there for support. I hugged her and sobbed.

I brought a book to read during surgery, Little Bear Sees, How Children With Cortical Vision Impairment Can Learn to See. CVI is our greater concern, and it made sense to me to focus on this - the future - during surgery. I hadn’t finished the introduction before we heard muttering at the front desk outside waiting room two, about Jasper. A few minutes later, our doctor came in: “Jasper did great...”

Only one person is allowed in recovery one, still downstairs. The nurse said Jasper was starting to wake up. He’s sooo cute, she added. Jasper sat up and was flailing his arms. I forgot to mention, Jasper gets restless when he’s close to waking up, I told the nurse. Jasper lay on the stretcher, eyes closed. In the outer corners of each eye were pink-red tears. I knew his eyes would be totally bloodshot - bloody - after surgery. The nurse picked him up, carefully gathering his IV and oxygen cords, and put him in my arms, the same way I had held him in the NICU as a newborn. Though not nearly enough. I offered Jasper a bottle of sugar water, which he sucked down, then cried for more, eyes closed, and sucked down a second bottle. Contentment followed. Wrapped in his baby blanket, he fell asleep in my arms.

Hope.

Hope arrived in the mail yesterday.

A few weeks back, Jasper and I had a particularly hard day at Children’s. Two opthalmology appointments that would give a better idea of Jasper’s vision. The moment of truth, I thought. I now know better - there is no one moment of truth with Jasper - it is a long, drawn out process.

I told Jasper we were going swimming. Children’s has a pool for children and family to use on the day of an appointment. After Jasper’s dismal ophthalmology test result, I was numb. I wanted to go sit somewhere by myself and cry. I held it together enough to visit a friend and his daughter, who was recovering from surgery. Open swim was at 4 p.m. After seeing our friends, we had a good half hour longer to wait. I debated skipping the swim. But I had promised Jasper. I had enjoyed packing his new swim diaper, his towel, a comb for his wet hair.

It was almost snack time. We cruised through the cafeteria then found a table in the lounge next to the gift shop. There is always a vendor alongside the gift shop. I fed Jasper his snack, and kept peeking over at the jewelry set out on tables. When he was finished I made my way over to browse. The jewelry designer had a selection of silver wire bead necklaces, bracelets... and charms. It was the charms that caught my attention. Assorted shapes of flat silver with hand etched designs and words. I pored over them for a long time. Walk on the beach. Hearts. Swirls. I decided on a charm with a heart and star. I paid for my purchase and Jasper and I made our way to the pool.

I began wearing my charm as soon as we got home. A few days later, I sent the jewelry designer the following message:

             

Dear Halina,

            

This past Tuesday I was at Children’s Hospital and purchased a charm from you. My 16 month old son had two opthalmology appointments that day. Afterward, we hung around, waiting to go swimming at four.

Our appointments were disappointing. At birth, my son had a stroke in the occipital lobe (vision area) of his brain. That day, the opthalmologist had nothing good to say about my son’s vision. I looked at your charms for a long time before selecting one with a star and a heart. What I was really looking for though, was hope. You should have some charms that say hope. Because that is what parents at Children's need.

Halina replied:

Dear Brenda,

I am very touched that you took the time to write to me and suggest that I have Hope charms available at Children's. You are absolutely right, and I had not thought of that. Thank you so much.

I am very sorry to hear about your son's diagnosis. It is so difficult to see challenges put upon our children and be powerless, no matter how much effort we are willing to put into it, to change it. My heart goes out to you and your family.

I would be delighted to create a charm for you that says "Hope" as my gift to you. It will be in sterling silver, but it may be slightly larger so that I can fit the word on it.

Hope.  

NW Run / Walk for Epilepsy

On Saturday, June 16, Jasper and I ran in the Northwest Run / Walk for Epilepsy 2012. We ran because Jasper has had seizures, and because we know other children and babies who live with seizures. Seizures in children cause developmental delays. In the worst cases, seizures end young lives before they have barely begun. I do not know whether Jasper is considered to have epilepsy. As a newborn, he experienced subclinical seizures, which led to the discovery that he had suffered infant stroke at birth. Doctors called his seizures “difficult to control” - at two weeks old, he came home from the hospital on three different anti-seizure medications. He did not have a normal EEG until almost six months old. He tapered off his last anti-seizure medication when he was eight months old. Jasper is at risk for seizures for the rest of his life. Having seen the damage seizures can cause - from delays to worst case scenario - I consider us extremely lucky.

I don’t know the official walk participant count but it was not what I expected. I had hoped for a huge turnout - a crowd that would absorb us. Gatherings of diverse people coming together for common cause - cycling, music, epilepsy - is powerful and always moves me deeply. As Jasper and I started out, running, moving ahead of the purple walkers, I swallowed several times to hold back tears, maintain my poker face. I maneuvered Jasper’s stroller between walkers, passed a few other runners. A short run, but it felt good, and I put all my energy into it. We made it around the lake easily - Jasper napping the entire time. As we approached the end - also the beginning - an organizer told me, “You’re the first runner to finish.” The NW Run / Walk is not a competitive event, but I leaned down anyway and whispered to a sleeping Jasper, “We won, baby.”

Visual Evoked Potential

Visual Evoked Potential. It was the word potential that gave me hope. VEP is a kind of EEG. It involves fewer probes and  focuses on the back of the head, on the vision center of the brain. Also the site of Jasper’s stroke.

The pediatric opthalmologist at Seattle Children’s - not our regular eye doctor - recommended Jasper have a VEP prior to strabismus surgery. Results would show the strength of Jasper’s visual pathway, is it an open or a closed circuit? It could also help determine, is strabismus surgery a good idea? Would it be effective, would it take?

Jasper’s vision is inconsistent. Sometimes, he seems Ok. He sees his toys, he doesn’t run into walls, he imitates my facial expressions. Other times, he struggles. He searches for me against a complicated background, his tracking doesn’t match the velocity of objects, he looks at lights too much. In spite of his visual inconsistencies, I had high hopes for strong signals, sufficient activity, a closed loop. At the recommendation of both Jasper’s regular ophthalmologist, and our former vision therapist, I had decided on surgery regardless of VEP results. Because, as our regular doctor told us, “it is worth doing,” to give Jasper’s vision the best chance. After our VEP attempt in February, I didn’t expect Jasper to tolerate the test. Jasper’s cooperation yesterday was a blessing and a curse. Because I had hope - because I can see that Jasper can see - I didn’t expect a poor result.

The Children’s ophthalmologist is one of the top pediatric opthalmologists in the world. He is notorious among parents for his crude bedside manner, his tactless nature, his harsh choice of words. He was an hour late for our 1 p.m. appointment. The exam room was dim. He showed me a printed out graph of Jasper’s results. There were two graphs, each representing a different pattern that was displayed on a screen during the test. The first test was pretty flat, and the esteemed doctor dismissed it. The second graph was a little more lively, but nowhere near the spikiness a typical kid has. I swallowed hard. And breathed. I wanted to cry. But didn’t. Jasper’s result showed low activity, a pretty open loop. As the doctor talked - this man who had diagnosed my nine day old newborn with cortical blindness - he continued to refer to Jasper as cortically blind. He could not recommend surgery, because it might not take. I told him I already knew that. He told me Jasper had “taken a hit.”

Yesterday was a hard day. It left me drained, sad, confused, questioning. Jasper’s results are not consistent with Jasper’s behavior, at least the doctor gave us that.

For the past month, I have agonized about sticking with our regular ophthalmologist, and having surgery done at Swedish First Hill. Or staying within my comfort zone, and having surgery done by Children’s ophthalmologist. Stick with our guy, who is optimistic, positive, hopeful, top notch. Or have it done at Children’s, by someone who has nothing good to say about Jasper’s vision. A doctor who has no hope for Jasper’s success.

Today was about recovery. I finally feel at ease with my decision. Jasper will have strabismus surgery at Swedish, with our regular guy. I look forward to a new environment.

Surgery

I’ve known for a long time that Jasper would need eye surgery. Strabismus surgery, to straighten his eyes - strabismus is the condition where the eyes do not line up, they do not work together to look in the same direction, at the same object. I cannot remember if his doctors first mentioned surgery at three weeks... or three months. Then, it was described as distant, something I would not have to worry about for a few years. Last January, Jasper’s ophthalmologist told me otherwise - surgery should happen by summer. Looking at the calendar, summer is officially a few weeks away. Jasper’s surgery will follow nine days later, on June 29th.

Structurally, Jasper’s eyes are perfect - more perfect than mine. I am so severely nearsighted that, if not correctable with lenses, I would be considered legally blind. Jasper’s impairment occurs in the brain, when it receives visual information. Strabismus surgery is not a cure for his cortical visual impairment. It will simply - hopefully - straighten his eyes so they can work together, and give him a better chance of developing stereoscopic, three-dimensional vision. The earlier this is done, the better the chances for success, before the depth perception area of his brain is set. Surgery is not a cure for his impairment. My hope is that we might at least check off a few boxes.

There are other options besides surgery. Time consuming therapy, time we do not have. Ever since Jasper was born I have been keenly aware that with each passing day, we lose time. As if the Wicked Witch of the West had turned over her hourglass as soon as Jasper came into this world. Each day, we work on making as many synaptic connections as we can, but is it enough? Enough for his brain to compensate for stroke? Not having surgery is another option. The risk is that one eye weakens, and eventually the brain forgets about it. Blindness in the weak eye is the result.

Strabismus surgery does not always take, and may need to be repeated. The eyes are straightened by repositioning the eye muscles, which are accessed by pulling down the lower lids. Surgery will be done on both eyes. Afterward, Jasper’s eyes will be blood red. His brain will decide whether it takes.

I spent a few weeks vacillating between having Jasper’s regular ophthalmologist perform the surgery at Swedish First Hill, or having it done by the pediatric opthalmologist at Seattle Children’s Hospital. Although I am strongly attached to Children’s, I opted to stick with our guy. Today I received information from Swedish on surgery procedure and prep (no hairspray or cologne for Jasper, day of surgery). Reading through the literature, all I could think was, I wish we could do this at Children’s... Being in familiar surroundings would be a tremendous comfort.

One of my biggest fears is anesthesia. I can stay with Jasper until he is asleep. Surgery typically lasts 45 minutes to an hour. As soon as it is appropriate, I can be with him in recovery. I worry about the interim. I worry about seeing my baby asleep in the hospital, and going through PTSD, back to when Jasper was a newborn in the NICU.

Maybe the new setting will help after all.

Rob

Laughing, April 2012

It was a busy week. I scheduled alternative “intensive” therapy for Jasper, in addition to his usual grind. This added one appointment each day to our schedule, which meant that on a few days last week, we had three appointments. It may not sound like much but it consumes your entire day and nearly all of your energy. On Tuesday, one of our appointments included neurology at Children’s Hospital, our last appointment that day. Jasper and I have a friend who has been at Children's for over two months now. So after neurology, we paid our six year old friend and her momma a visit.

Before Jasper was born, my only association with Children’s Hospital was riding by on my bike about a thousand times - on my way around Lake Washington, or to the hills of Kirkland, or en route for a long rural ride in Snohomish County, what would be a century ride by the time I got back home to ballard (I often did “century,” or 100+ mile rides then). I would pass by the hospital, contemplate it for a moment - pay my respects - then move on as my legs propelled me to the crest of the gentle hill on Sand Point Way. My first time at Children’s was when Jasper was transferred to the NICU as a newborn. I wasn’t yet comfortable with the role of parent, mother... let alone primary caregiver. My mind was spinning with so much information, so many decisions, emotions - so much out of my control. Jasper spent most of his week there in the NICU. Children’s provides limited (and spare) accommodations for parents whose children are in intensive care. Nursing mothers get first priority. So I moved in for what felt much longer than one week. The closet sized rooms are on the fifth floor, above the NICU. There is a common room and a corridor leading to it that affords a distant view of downtown Seattle, and the Space Needle. I remember being there that Saturday night, walking along the corridor to my room and catching a glimpse of the Space Needle. I’m still in Seattle?? I thought. My emotions had been on high since Jasper's birth, and had taken me away. At that point, my life felt utterly unfamiliar. The Space Needle grounded me, brought me back to earth. I had been transported to a new level of adulthood... but I was still in Seattle. After all.

Jasper was at Children’s for a week, though it felt like weeks. One week is nothing compared to stories I have heard from my special mom friends. I remember when I got to the hospital and was given my plastic caregiver identification badge. It was good for one week, from February 17th to February 24th. We will be out of here by then, was my only thought. That was my goal. It happened to work out that way. Jasper spent the first five days in the NICU. His neurologists were trying to control the subclinical seizures that resulted from his stroke. Progress was sketchy - good one day, lousy the next (his seizures were categorized “difficult to control”). After a holiday weekend long AEEG - a continuous EEG, with fewer probes that attach to the scalp with small pins instead of adhesive, meaning I could not hold my newborn for three days - Jasper graduated to the medical floor. Until then, I hadn’t met any other parents and it was there that I met Rob. Rob had noticed Jasper - there weren’t many other babies on the medical floor. I don’t remember the exact details of our meeting, but Rob must have introduced himself and asked about Jasper. He was there with his 15 year old daughter, a few rooms down from ours (at that point, Jasper and I shared a room). Rob had this bright smile and was super positive, he breathed hope. He had been at Children’s with his daughter many times. At one point, feeling sorry for myself, I said, “I never thought I’d be spending our first weeks here...” Rob replied simply, “No one wants to be here.” All at once, I was humbled.

I did not see Rob again after Jasper was discharged. I friended him on facebook and we occasionally said a virtual Hi. Last Tuesday, Jasper and I left our friend’s hospital room at Children’s and walked down the hall to leave. Jasper was laughing especially loud - he has the best laugh, I never hear other kids his age laugh like that - as I pushed his stroller down the hallway. A man was walking toward us and I could see he was smiling at Jasper’s laugh. As soon as we passed, I knew, and turned and said, “Rob??” We both smiled and laughed at meeting each other again so spontaneously. Rob asked about Jasper and that was when it hit me. At first, a lump in my throat that I immediately knew I couldn’t control. “He’s fine...” I said, shaking my head, my throat closing. A few embarrassing tears, attempts to wipe them away. And then overwhelming emotion - sobbing, body shaking. Rob hugged me while I cried. It all came back. My only association with Rob was Jasper’s traumatic beginning. I thought I had healed. Or mostly healed. Seeing Rob again made me realize it is still there. I am still healing.