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.