Saturday, December 29, 2007

The Mother at the Swings

Eva's mom Crystal posted this, and it is so beautifully written I had to share it too.


The Mother at the Swings
by Vicki Forman

It's a Sunday afternoon. My nine-year-old daughter Josie is at home drawing cartoons with my husband and I'm swinging my six-year-old son Evan at the park. Evan laughs and giggles and with each wide arc of the swing, his smile grows ever larger.

The mother next to me smiles herself and says, "Boy, he really loves that, doesn't he? I mean, kids just love to swing, don't they?" Yes, I think, kids do love to swing. But the reason my son loves to swing isn't the same reason her daughter, in the swing next to us, loves to swing. My son loves to swing because he is blind and non-verbal, because he has what is termed "sensory integration dysfunction" and requires enhanced "vestibular input." Swinging gives my son the kind of stimulation other kids, those who can see and talk and run and ride a bike, get by simply being and doing. And, yes, he also loves to swing because all children love to swing. I smile back at this mother and I swing Evan higher and he laughs louder, his squeals of delight growing bigger with every push.

"He really loves to go high," the mother at the swings says. "He's not afraid at all."

"He's not afraid because he can't see," I say. "He has no idea how high he's swinging."

"Well, he must have other ways of knowing," she says. "Because he definitely loves it."

My son was born at twenty-three weeks gestation, weighing only a pound. His twin sister died four days after birth when we removed her from life support. Evan was hospitalized for six months and came home blind, with feeding difficulties, chronic lung disease and global developmental delays. Soon after that, he developed a serious seizure disorder and was on medication until his fourth birthday. He did notwalk until he was five, still does not eat anything other than pureedbaby food and formula from a cup, and has only a word or two -- variations on "muh muh" -- which he uses indiscriminately for "more" or "mama" or "open."

I have watched my friends' newborns become toddlers and school-age children who can walk and laugh and talk andread, all while my son continues to function at the level of a two-year-old. And yes, he has a beautiful laugh and a beautiful smile which grow only louder and wider on the swings.

When Evan was still in the hospital, a social worker gave us a handout, a road map for the potential reactions of friends and family members to our new status as parents of a super preemie. Potential support people came divided, according to the handouts, into the following categories: "the rocks," "the wanna-be-theres," and "the gingerbread men." It warned us that people we might think were rocks could unexpectedly turn out to be "gingerbread men." Just like the story, they run, run as fast as they can from you when they hear of your baby's birth. I quickly found that the guide was right, that I was supported by only one or two rocks, and that the rest of my friends and family members had become gingerbread men. As Evan's disabilities became more obvious, after he left the hospital and in the time that followed, I found new rocks and said goodbye to the gingerbread men. And I found a new category for the characters in the social worker's handout: "the mother at the swings."

The mother at the swings wants to know. It's why she makes her observations, and why she pretends there is nothing different, nothing dissimilar about her child and mine. All kids love to swing. The mother at the swings would like for me to tell her what it's like, how my son is different, and how he is the same. She wants to know about the cane he uses, and the challenges of having a non-verbal child, and how I manage to understand my son and communicate. She'd like to ask, What does his future look like? And How are you with all this? She wants to know but she doesn't know how to ask. And so she tells me that all kids love to swing.

It has taken me years to know what to say to the mother at the swings, and how to say it. To reveal the truth, graciously. To let her in and help her understand. To tell her that yes, all children love to swing, and my son loves to swing and the reasons are both the same and different. That it's hard to watch her daughter, with her indelible eye contact and winning smile, and not mourn for what my son can't do. That some days my grief over my son is stronger than my love.

It has taken me even longer to appreciate the mother at the swings, to know that she and I have more in common than I once thought. To know that her curiosity is a mother's curiosity, one borne out of love and tenderness and a desire to understand a child, my son, one who happens to be different. That she will listen and sympathize when I offer my observations. That her compassion and thoughtfulness mean she will take the knowledge I share and use it to understand other mothers like myself, some of whom could be her neighbor, her cousin, her sister, her friend. And, finally, that she wants to know so that she can teach her own child, who also loves to swing, how to embrace and treasure what makes us all different. And the same.


"The Mother at the Swings" is really out there, walking among us. Every so often--and it's usually when my spirits are particularly in need of a lift, so I can't say I believe it is strictly coincidental--she, or a variation of her, will come and find me. And these mothers can be more than just brief encounters--I am lucky enough to call one a close friend.

Most recently, Jeremy and I had an encounter with "the mother at Miner's restaraunt." We were eating hamburgers, and Evan was sitting in a high-chair, playing with curly fries between episodes of being totally enthralled with the overhead light (aka "stimming"--I'm sure Evan has some degree of sensory processing disorder and craves extra stimulation also). "He sure likes that light," she said. Then she asked how old he was. "My two-year old wouldn't sit still like this. He's such a good boy. And he really does like that light." Just like the story--there is a pattern to these mothers (or dads--they are out there too): they make an observation about your child, compare or contrast their child in a complimentary way, and then leave the door open for you to tell them more...if you want to.

The other day I was reading an editorial talking about Christmas not being about what we get, but appreciating all that we have. To the "Mother's on the Swings" in my life (and I think you know who you are!), please know that I count our friendships as a very special everyday blessing.

Tuesday, December 25, 2007

Merry Christmas from the Storrs Family

Belated wishes from us...I just wanted to post some pictures from our extended Christmas weekend. On Sunday, Evan and I traveled with my parents and sister to visit Great-Grandpa Key, Aunt Nancy, Aunt Julie, Uncle Dennis, and Cousins Becky and Matt. It was a long day of traveling, but worth it to see family we don't visit very often (some meeting Evan in person for the first time!). Christmas Eve, Jeremy, Evan, and I just stayed home, opened some of Evan's presents and relaxed. He still doesn't really understand the whole "present" concept, and prefers to play with his familiar toys. I'm sure the new ones will grow on him. Today, we had Christmas dinner at my mom & dad's. Our visit was cut a little bit short by what I am hoping is just a 24-hour flu for Jeremy. He's feeling better this evening, resting in bed. We hope everyone got to spend time with family and had a wonderful holiday.

PS If you want to see something really cute, go to Eva's blog (link to the lower right) and watch the "CHARGE Snowball Fight." It's hilarious, and features our CHARGE friends Max, Eva, Alissa, and Luke. Great job Crystal!

One toy Evan took right to...he knows what to do with a ride-on!

I love how this picture shows Evan's reflection so clearly.

Walking with some help from Uncle Dennis.

Snuggle time with mommy.

Cousin Becky and Auntie Jen joining in.

Nothing like sitting back, with your feet up.

Typical 2-year old behavior: Does not want to take pictures in front of the Christmas Tree.

The compromise: a picture next to the tree.

One family picture (the 10 seconds on the timer feels like an eternity with a squirmy 2-year old on your lap)!

Saturday, December 15, 2007

An Ordinary Saturday

Two activities were on the agenda for today: attending a 2 year-old friend's Birthday party and visiting Julie & Gabe's house to wrap Christmas presents.

The birthday party was at the Children's activity museum. Evan had a good time, although he really just likes to play by himself or with us (most of the kids there were in the 18-months to 2 1/2 age range, so they weren't really playing with each other either). He had the most fun in "the bubble"--there was an indoor play structure with a clear, half-sphere window. Evan knew enough about windows from previous experience that he was a little leery of this one--he would reach out to about where glass would have been if the window was flat and "feel around" in the air. Gradually, he leaned far enough out to find the solid surface of the window. From that point on, he was hooked.

The most exciting thing happened this afternoon at Julie's house. Evan wanted to play with her remote control. So I signed "want" to him. He made his sign for "want" (it's actually a pretty close approximation), so I gave the remote to him for a minute. Then I signed "mommy's turn" and took it back. After a bit, I asked him if he wanted it again, expecting him to sign more "want." Instead, Evan signed "yes"--he only did a couple shakes of the "yes" (if you are familiar with ASL, you know what I'm talking about) and I could never get him to repeat it. But it was most definitely a "yes."

This is a huge deal. Up to this point, I have only seen Evan copy a sign that one of us is making simultaneously. This time, not only did he make a sign that was different from the one I was making, it was contextually appropriate in our "conversation"! I realize that communication is still going to be a long, uphill road. But, Evan, you sure know when your mommy needs a little bit of positive reinforcement. It was only a couple weeks ago that I was questioning Evan's teacher, Kat, about whether she thought he was "getting it," and when it might be time to start looking at some other strategies. She was very positive, and assured me that although she had her share of doubts when she first started working with Evan because things were so slow, she had seen tremendous progress and felt that he was on the verge of things finally starting to "click." I guess she was right!

Just an ordinary Saturday, but I was again reminded of the extraordinary-ness of our son.

Our Bubble Boy

"Sing us a song piano-man..."

Monday, December 10, 2007

Evan Antics

I know I promised to post some pictures of the new office, but there are a few things that have yet to be finished. I want it to be all finished when I take the pictures. But as a peace offering, I thought I would post a few pictures of Evan doing cute things there.

I'm all set to be mommy's first patient in the new office. Oh, you already saw some patients here before me? Hey, wait a minute--weren't we still waiting on that final inspection??

The newest thing I like to climb in--a (fairly) clean empty trash can. And the acoustics...I can only imagine how much louder my beautiful voice sounds!

Look daddy...I'm SOOOOO big

Sunday, December 9, 2007

The Promise

Warning: This story made me cry. But I think it is a great illustration of how our brave, but sick, children truly do inspire us to be better than we are.

The Promise
by Cynthia Dermody, published in Reader's Digest Jan 2008

Kathy Staub felt her heartbeat quicken and the familiar sweat coat her forehead. The 42-year-old deli clerk from Philadelphia dreaded the moment each day when she had to give her youngest son, Michael, and injection of an immune-boosting drug called Neupogen. She had to get the long needle into his arm at a 90-degree angle and hit the layer of fat between the skin and muscle. This required a quick and focused stab.

It was June 2001, and just the thought of causing any more pain to 20-year-old Michael, a college sophomore diagnosed a few months earlier with a rare form of leukemia, made her anxious. He'd tolerated two rounds of chemo, the central line catheters and bone marrow biopsies. But injections were the one thing he really hated. "C'mon, I don't like this. Do it fast, do it fast," Michael pleaded, standing in the family's living room. Kathy squeezed his biceps to try to tighten his skin and lessen the pricking and burning sensation. Then she positioned the thumb of her other hand on the plunger of they syringe. Just do it, she told herself. Focus. Focus.

Quickly she jabbed the shot into Michael's arm and, through his squirming, withdrew the plunger slightly to make sure there was no blood. Bull's-eye. She depressed the plunger fully and pulled out the shot. Then Michael adjusted the IV line attached to his chest and plopped back down on the teal blue sectional to watch TV.

Kathy could have hired a nurse for Michael while he was home between treatments at the Hospital of the University of Pennsylvania. But she wanted to be the one to clean out his catheter and give him his daily shots, IV fluids and pills. Never mind that she was squeamish at the sight of a mere drop of blood.

Kathy was close to her other two children, Melissa, 23, living at home, and Matthew Jr., 22, away at college, but she and Michael had a special bond. Kathy practically lived at the hospital when he was there for treatments. She--and the whole family, including her husband, Matthew, a grocery store meat manager--had grown extremely close to all of Michael's nurses on Rhoads 7, the floor where leukemia and lymphoma patients are treated. And not just because of the great care they gave Michael. The nurses became a support system, especially for Kathy. She ate with them, shared her fears and cried on their shoulders. They would tell her, "Michael is strong. He'll beat this," and offer back rubs when she had trouble catching an nap in the reclining chair in his room.

Kathy's appreciation of them grew when she began to understand what their jobs entailed. One of the first times Kathy gave Michael his daily shot of blood thinner, she missed and hit her own hand. It bled for hours because the anti-clotting drug had seeped into her system. She kept track of all of Michael's shots and his 50 daily pills in a notebook she'd placed in the dining room, next to his old dorm fridge. It now contained IV bags of magnesium and potassium, to replenish his electrolytes, and amphotericin, and antibiotic for the fungal pneumonia he'd caught because of his weakened immune system.

"I always thought nurses just gave you the pills and walked out of the room," Kathy says. "Now I had a whole new understanding of how they manage their time and energy. And they had three or four patients. It took me all day to manage one. But I didn't really feel like a nurse. I was just Mom."

Michael took a turn for the worse in August 2001 and was admitted back on Rhoads 7 for a third round of chemo. Kathy quit her job so she could remain at the hospital, slipping home for only an hour a day to shower when Matthew came by the hospital after work. "I never really slept, because Michael would vomit all during the night and the diarrhea was constant," Kathy says. "I would just throw away bagfuls of clothes."

It's not unusual for parents to stay with sick children round the clock. But the floor nurses noticed something special about Kathy. She was always smiling and positive, even on days when Michael was very ill or received bad news about blood counts. "It was never about Kathy or the sacrifices she was making," says Debra Dearstyne, one of Michael's nurses. "She never let Michael see how hard this was on her."

One day, Michael told one of the nurses, Felice Kloss-Heffernan, that he was so impressed by what she and the other nurses did, he planned to enroll in the nursing program when he was healthy enough to go back to college. Michel always believed he would conquer the disease. He'd done so with other hurdles in his life. Born a preemie on January 1, 1981, he overcame a learning disability and was mainstreamed into a regular classroom by the third grade. Despite good grades, he did poorly on his SATs. He gave up a trip to take a summer prep program at Widener University, south of Philadelphia, then entered as a freshman that fall. At five-nine, he was always told he was too short to play sports, yet he managed to become a linebacker on Widener's Division III football team.

When the thirst round of chemo was finished, in September 2001, Michael returned home to await the results. A few weeks later, Kathy and Matthew were devastated when Selina Luger, MD, Michael's oncologist, pulled them aside in the hall of the clinic, out of Michael's earshot, and told them, "The chemo didn't work."

"What do you mean?" Kathy asked. "So we just go to the next round?"

"There's no next round," Dr. Luger said, gently taking the arm of a now hysterical Kathy to steady her. "Michael's incurable. He's dying."

Matthew was shell-shocked at the news. Like his son, he always believed they would beat this. This can't be the end of it, he tried to convince himself. Kathy wept against a hallway window while Dr. Luger and Matthew walked into an exam room. Dr. Luger explained it could be weeks or months as Michael just nodded, speaking only to ask, "Is my mom okay? I hear her crying."

Kath continued to care for Michael at home over the next several months. But he failed to bounce back after the difficult chemo, remaining pale and listless. He was determined to attend his sister's wedding on Saturday, March 23, 2002, which he did. But the following Monday, Michael confessed that he'd been suffering from a high fever for days and had taken Tylenol to cover it up so he wouldn't ruin the wedding. Back in the hospital, test showed Michael was in heart failure.

On April 14, Michael woke from a nap on the couch and said, "Mom, you took care of me through all this. I think you'd make a great nurse. I know I'm not going to be one, but promise me you'll go back to school and become a nurse." Later he added, "I want you to work where I was treated."

"I did this for you, but I could never do it for anyone else," Kathy replied.

"There are a lot of other me's out there," Michael answered. "I want you to pinkie swear."

"Sure, Mike, sure. I'm going to be a nurse. Pinkie swear," Kathy said to humor him, entwining her little finger with Michael's.

The next day, Michel's blood pressure plummeted to 60/40. Kathy and Matthew summoned family and close friends and told Matthew Jr. he needed to come home from college right away. As the monsignor from the family's church pressed the crucifix to Michael's head and began last rites, Kathy noticed her son's breathing was becoming more labored. In his hand, he tightly clutched a silver angel medallion with the word love written on it, a gift from a friend. Matthew held his son while his mom rested her head on his. "Mickey, I'll be okay. Just let it go. No more pain, just let it go." And Michael closed his eyes for the last time.

Weeks after Michel's funeral, Kathy was still struggling to make it through each day. One night, she had a dream--although she believes it was more like a messaged. She saw Michael dressed and looking as healthy and handsome as ever. "Mike, are you okay?" she asked, getting a whiff of his trademark Perry Ellis cologne.

"Mom, I'm fine," he said. "But you have to stop crying now. You have to remember your promise."

The dream spurred her to action. On May 28, a month and a half after Michael's death, Kathy took placement tests at a local community college. "What am I, nuts?" she asked herself. "I haven't opened a textbook in 25 years." But she scored well.

Nursing school was grueling, especially for someone who'd never used a computer. It took her twice as long as the younger students to complete assignments, and there were several times she thought she' quit. But Matthew and her family continued to encourage her. "Her head was always in a book," recalls daughter Melissa. "She would study on vacations. I know Michael was on her mind the whole time, and that was her driving force." Doubling up on courses and even taking summer classes while working part-time at the deli, she eared her nursing degree, graduating cum laude in May 2006 from Thomas Jefferson University, and soon became a registered nurse.

The fall before she was due to graduate, Kathy attended a nursing career fair. She walked directly up to Beverly Emonds, a recruiter at the UPenn table. "Hi, I'm Kathleen Staub, and I want to work at your hospital," she said. "But it has to be on Rhoads 7, bone marrow transplant." In early November, Emonds called Kathy to tell her there would be an opening. But it was far from a done deal. Kathy had to convince the floor's nurse manager that Michael's history wouldn't interfere with her performance on the job. Finally, Emonds called to offer her the position.

A few days after starting, Kathy stood in one of the patient rooms holding a syringe full of Neupogen--the same drug she used to give Michael. The young leukemia sufferer, her very firs patient, was about Michael's age, and she hated shots just as much. As Kathy began the procedure and felt the familiar moistness on her brow, she couldn't help thinking of her son. But suddenly a guiding confidence came over her. She jabbed the shot quickly and precisely, like a pro. That wasn't so bad, she thought.

Each day as Kathy walks int o the UPenn hospital elevator and pushes the button to the seventh floor, she takes Michael's angel medallion from her pocket, holds it in her palm and says, "Micheal, get me through the day." The 12-hour shifts are rewarding but intense. Though memories lurk everywhere, she loves working alongside many of the same nurses who cared for her son.

Kathy doesn't often share Michael's story with the families of patients, because she doesn't want to dash their hopes. But sometimes word gets out and they ask her about him. One of Kathy's first patients, a young woman with leukemia, had developed a complication from bone marrow transplant. She was dying. Kathy flashed back as she saw the girl's mother crying at the foot of her daughter's bed. The woman turned to Kathy: "How do you get through it?"

Kathy waked her into the hall, and the woman collapsed in tears. "You never forget, but you will get through it." She fingered the angel medallion in the pocket of her uniform. "You'll find a way."

Michael had a rare form of leukemia, a hybrid of ALL and AML, which doubled his resistance to chemo.

Wednesday, December 5, 2007

First Transition Meeting

Last night we met with Liz, our FRC from the Birth-to-Three program, and the school psychologist from the Kittitas School District. Evan will be three in July, and we have to plan ahead for his transition from early intervention into the school system. What this means is that the school system will be providing his therapies, instead of our insurance and then Head-Start as the payor of last resort. Jeremy and I had been a little bit apprehensive about this transition because we were under the impression that Kittitas really didn't have the resources we think Evan needs to be successful in pre-school, and eventually regular school. There is a developmental preschool in nearby Ellensburg we have been wanting Evan to attend, but because we are out of district (we are less than a mile away from the district line) a big battle was anticipated.

The school psychologist made us feel a lot better about the transition. To begin with, she said there was pretty much no way that the Kittitas district would contract (meaning pay) Ellensburg school district to take Evan into their developmental preschool. But then she told us about the speech and occupational therapists that come to the school. We are quickly coming to the conclusion that ASL is going to be Evan's primary mode of communication, and that it will be important for him to have an aide that can sign (in our small community, this may be difficult to find). If there is a plus side to Evan's frequent need for venting the g-tube, we are hoping it will be for him to have a one-on-one aide (again, finding one that knows ASL may be a tall order--but it wouldn't be any easier in Ellensburg either).

The school psychologist pointed out that preschool in Kittitas will be through the Head-Start program, and Evan will be with typically developing peers instead of just "developmental" kids. Jeremy and I already know that Evan is a watcher--he tends to try things he sees other kids do (for example, I am almost positive the climbing came from months of watching Gabe, the climber extrodinaire!).

The most difficult moment came when the psychologist commented about Evan would obviously qualifiy for an IEP (and if you are reading this, know I have absolutely no bad feelings about that's just that sometimes the truth really hits hard). It's good he will so easily qualify because he needs an IEP to get services. But Obviously...are his differences that, well, obvious?

To me, Evan has come so far in the past two years--in the past two months even. I have learned the best yard-stick for Evan is Evan. But in not comparing him to typical kids, it's easy to in a sense deny the reality of how very far behind he is. Sure he has made some big gains, but "normal" kids are making even bigger gains, so the gap between is getting larger and larger. Max's mom Amy posted a couple weeks ago about being "jealous" of the developmental strides of the kids with Down's in Max's play-group. I completely get what she is saying (although, to us Max is leaps and bounds ahead of where Evan is communication-wise. Check out the video on Max's site of him signing parts of the "itsy-bitsy spider" song--it's too cute and we are so proud of both Max and Amy!). I guess it is all about perspective.

The beginning of May is when we will start the transition process in earnest, and Evan will start pre-school next fall.

Climbing Evan

Evan has learned a new trick this past week--he can climb up into chairs all by himself!

The first time he did it, we were busy packing and putting things in a Uhaul truck. I noticed he was in the chair, and I asked Jeremy if he sat him in the chair (and then left the room...). Jeremy didn't put him in the chair, and I didn't put him in the chair. By process of elimination, Evan must have got up all by himself.

Since then, Evan has demonstrated his talent many times. These pictures are from last Sunday--he climbed into the rocking chair we used all the time to soothe him to sleep as a baby. Sleep was the last thing on his mind here. I'm sure life for us will not be the same again. I say that everytime he learns something new--so far, it's been true!

Look at Me! Look at Me! Look at Me!

This is me thinking...thinking about all the trouble I can get into now that I know how to climb!

Oh, and the other cute new trick he learned during the move was how to climb inside an empty cupboard and close the door on himself. This skill has also transferred nicely to home, although he has to deal with climbing over all the stuff inside (there is no such thing as an empty cupboard at our house). That hasn't stopped him yet--Jeremy found him in the towel cupboard under the bathroom sink yesterday. Like mother, like son--when I was little, I would empty out drawers and get inside those.

Monday, December 3, 2007

Storrs Family abducted by UFOs

OK, not really. We've just been SUPER busy!

Some of you know I found out shortly after (i.e., the day of) purchasing my optometry practice that I was going to have to move the satellite location. I signed a lease for a brand new space (i.e., completely bare--no walls, ceiling, anything except a concrete floor!), and "hired" Jeremy to be my contractor. The past two months he has been busily working many, many evenings and weekends to build out the new clinic.

Our first day of seeing patients in the new clinic is December 5th--this Wednesday. Ever since the day after Thanksgiving, we've been putting in some long hours doing the finish work and moving the old office. I'll post some pictures after it's all finished.

Evan is fine--he has a little sinus/ear infection (yes, he got an ear infection even on prophylactic antibiotics). It turned out to be resistant to the antibiotic he's been on, so they switched him to a different one. He is doing much better, and has been a real trooper through this whole move. He loves to ride his trike up and down the hall in the new clinic.

Thursday, November 22, 2007


Cedie's mom posted this on their family blog. I had to do one for us, too.


Our family has a lot to be thankful for this Thanksgiving. We are thanful for Evan's continual improvements in health and development--it seems like he is doing something new almost every day. We are thankful for all the love and support we get from both sides of our family. We are thankful for all our wonderful friends and neighbors--those we have known for many years as well as newer friendships. We have met so many incredible people not only in the CHARGE and special-needs community, but also as close as our own street.

Our thoughts are with families who have recently lost children, or are battling serious illness, or frustrations with transitioning to life at home after a long hospitalization (Thanksgiving 2005 for us was full of worries about that last one).

Sunday, November 18, 2007

First Snow of 2007

It started snowing this morning, and hasn't stopped yet! Grandma Key brought Evan some snow pants and boots yesterday--just in time for today's weather. It's a wet snow, and not much fun to play in. But we went out and took some pictures anyway (would you really expect any less from us?).

Not so sure how I feel about standing up in these new boots. I think I'll just hang on right here.

Julie took this picture of mommy & I all bundled up (I'm a little more bundled than mommy--she always complains about something called "hat hair." Glad I don't worry about stuff like that.)

Finally home again. Time to get out of these wet clothes!

Friday, November 16, 2007

The Bee Movie

Last night we took Evan to his first movie...The Bee Movie (just like Mighty Max!). We went to a group showing that was a fundraiser for some friends, and it included dinner right before the movie. Jeremy and I really didn't expect Evan to last much past the credits...especially since he had to hang out for about an hour before the movie even started because of the food. But Evan has a way of always surprising us. As soon as the lights went out and the previews started, he was enthralled. He watched about 45 minutes worth of the movie before he quietly fell asleep in the theater. Every time a situation comes up where we aren't sure how Evan will do, he always comes through and surprises us!

A pre-show snack

Evan made a new friend--this young man was very interested in Evan's style of eating.

Finally...the show is getting ready to start!

Two Bottles

Kids come up with the darnedest things to play with sometimes. Evan is a great example of this...he has all these fancy toys, and what are his favorites right now? The Sit-n-spin that I bought him at a yard sale for a dollar, and these two bottles from the pantry--Sweet Baby Rays BBQ sauce and maple syrup from Trader Joe's. He likes playing with the bottles so much, if the pantry door gets left open I can almost promise these two will be scattered across the kitchen floor.

A few nights ago, I thought he should see what was in the bottles. So we had a little taste test. He liked the maple syrup. Not such a fan of the Sweet Baby Ray's (means more for mommy--this is the only brand of BBQ sauce I've ever liked). The sad thing is now he can't play with the syrup bottle anymore--it has to be refrigerated after opening. But the BBQ sauce is still there. The sample came from an open bottle in the fridge.

Tuesday, November 13, 2007


The first chimpanzee to learn sign language passed away earlier this week. Washoe (along with three other chimpanzees who also sign) had lived on the CWU campus in Ellensburg since the early 1980s. She was 42 years old.

I had the opportunity to see Washoe and the other chimpanzees signing, many years ago now. I took psychology 101 my very first quarter of college, and attended a "Chimposium" as part of the class. I remember thinking how amazing it was to see an animal not only understanding receptive communication, but also able to use expressive communication in return. Humans are "wired" for language right? It's what separates us from animals--yet here were some able to learn and use ASL in context. When Washoe died, one of the other chimps signed "hurt." And they taught each other--Washoe was also the first chimpanzee to teach ASL signs to her adopted son.

I never would have imagined ASL would become important later on in my life, or how it would feel to see a similar progression of communication with my son, who faces barriers of his own to learning language.

If you would like to read more about Washoe's life, here is the address for an article:

Sunday, November 11, 2007

Evan ate three times today!

Yes--you read that correctly. Evan ate three oral "meals" today (and wore three different outfits because of the mess--bibs just don't cut it at our house!). I already posted on the carrots for breakfast. Here is what else he had:

Lunch was chicken-tomato noodle soup. I made a big pot of soup for Jeremy and I to work on this week, and I had some for lunch. Since Evan has already tried most of the soup ingredients separately and done fine, I figured what the heck. A big ladle-full went into the Vitamix, and came out looking food. At first, Evan was not in the mood for sitting down to eat and kept trying to wiggle out of the high chair (I know what he was thinking: "Mom, we've done this today already!"). But after a few bites he settled down and let me feed him about 2 oz. It felt really...normal--so this is what it's like feeding a typical kiddo. Very messy, too--you have heard of Mr. Noodle? Well, here is Mr. Chicken-Noodle!

For dinner, Evan had some strawberry-banana yogurt and a piece of Zwieback toast (the toast he basically just threw on the floor--no interest in eating that what-so-ever). He ate maybe an ounce of yogurt, before having a mini-meltdown. Here is a picture of dinner just prior to the toast going overboard for the third time (someone needs to tell Evan he is not at The Rocky Horror Picture Show).

Hal (VitalStim therapist) is going to be super excited tomorrow!

Carrot Snot

I ate an entire 1/2 jar (2.5 oz size) of carrots for breakfast this morning. Mommy thinks she has figured out I like my food runny--yesterday she thickened the carrots with some rice cereal and I was done after a few bites. Today we had to take a couple rest breaks, but I ate it all.

Mommy is very proud of me, especially since swallowing for me still looks like it is a lot of hard work and quite a bit of food comes out of my nose. How pleasant could that be? But I'm a trooper--she shovels it in, and for the most part, I move it to the back of my mouth and swallow. I make a little sucking sound when I swallow, so she knows air is going down too. Hal, our VitalStim therapist, has assured her this is something that will only improve with practice.

Excuse me mommy--Do you have a Kleenex handy?

Look: The carrots are coming! The carrots are coming!

And here they are...

This is how much toilet paper we went through for me to eat less than 2 oz of food--crazy, huh?

Saturday, November 10, 2007

November is Prematurity Awareness Month

Our house will have a blue porchlight (if mommy can find the bulb--she thinks she remembers where she put it) and Evan's blog will be blue for the rest of this month. We are observing March of Dimes' Prematurity Awareness Month. Least we forget, amongst all things CHARGE Evan is also an ex-32 weeker (8 weeks early).

We will never forget all the great care Evan received very early on from the doctors and nurses in the NICUs at Swedish and Children's (this picture is Evan at 4-5 weeks old--still preterm!--in his isolette, on CPAP, after receiving some of this care). As annoying as some of the hearing/ear infection/stenosis issues are to deal with now, remembering back to the early days puts it all into perspective--without the intensive medical interventions to overcome prematurity, Evan might not be with us today, to have these other problems to solve.

Friday, November 9, 2007

Night Party

Wednesday night--or more properly, very early Thursday morning--Evan decided he had all the beauty-rest he needed and it was time to wake up. At 1:30 am, Jeremy found him turning circles in his bed. So rather than risk Evan getting out of bed and pulling all his paraphanalia with him or getting into all his toys, Jeremy just unhooked him and took him out into the hall. He closed all the doors (except our bedroom), put up the baby gates, and let him wander the hall. His point was to show Evan how boring being up was and it was just better to go back to sleep.

I woke up at about 3 am to Evan-noises and banging on the bedroom door. I was suprised to find Evan laying in the bedroom doorway, vocalizing as he softly banged his head against the door. I realized Jeremy was gone, and found him trying to sleep in the middle of the hall with Evan's comforter and pillow. He explained his plan to me. I went back to bed, Jeremy shortly followed and we let Evan wear himself out--what else can you do???

Eventually, Evan did go back to sleep (sometime before 5:30 am--that's when Jeremy found him asleep and put him back to bed). But not before he expressed displeasure at being baby-gated out of the livingroom. At one point, he was standing up rattling the gate and making a bunch of noise. I heard Jeremy (and can image the ASL signs to accompany) saying "Daddy is not happy. This is time to sleep, not time to play. You need to go to bed." If it were only that easy!

Thursday, November 8, 2007

BAER Results

Basically stable--it's bad in both ears. Interstingly enough, Evan did show some improvement with bone conduction, which he has never demonstrated before. So his unaided threshold with bone conduction is at the level of a vacuum cleaner, as opposed to a lawnmower with air conduction. So we are back to trying the bone conduction hearing aid (we tried a loaner one with him a few months back--didn't seem to make any difference although he was battling ear infections at the time).

With these new results, Evan is not a candidate for a cochlear implant. Just like that--nothing about his hearing has really changed. We just got this unexpected result and suddenly the ENT who does CI wouldn't want to do it. Not that we were pushing to get him implanted, but we would like to put the idea to rest one way or the other. Evan's hearing loss has him borderline as a candidate, and the lack of progress with hearing aids could have been a factor. Now, suddenly, we have this whole new category of hearing aid to pursue before we can finally decide yes or no on the CI.

It reminds me of a situation with a young adult with Down's who was receiving services because of "mental retardation." To qualify, the IQ has to be under 70--it had been in the high 60s several times throughout life the test was administered. In high school, the student scored a 72, so all of a sudden didn't qualify for some of the same services. The mother was incredibly frustrated--it wasn't like the person's level of functioning was any better with an improvement of 5 IQ points, as the student was still on the life-skills track. Just as she matured, had become better at taking the test (things like recognizing patterns--that didn't have direct bearing on daily living).

We are also continuing to pursue a CT or an MRI to really look at Evan's nose and rule out choanal stenosis (narrowing of nasal passages on one or both sides). Choanal atresia (failure of the passages to open into the back of the throat) is very common in CHARGE--one of the diagnostic criteria in fact. Often, a child will have either choanal issues or a cleft palate--so since Evan had the soft cleft we always figured he didn't have any stenosis (we know he doesn't have choanal atresia because he's had tubes passed through both sides of his nose too many times to count). The reason why we are so interested, because the list of signs and symptoms reads like an exact description of Evan--constant goopy nose, recurrent ear infections, fluctuating hearing.

Evan's team at Children's is supposed to discuss this on Monday--it would be nice to get this diagnosed and hopefully treated so we can finally feel like we have a plan. The past year seems like it was nothing but waiting--very frustrating!

Monday, November 5, 2007

The "Opposite" of Eating...

If Evan was demonstrating eating skills last week, well this week is a 180 degree turn-around. Two steps forward, one step back...

An analogy: Front is to back, as eating is to this...

Instead of eating star puffs today, I learned that they stick to other things when they get wet

Quick! Wipe that food off on the high-chair cover while mommy isn't looking...she'll think I swallowed it!

BAER Hearing Test Today

Evan is scheduled today for a repeat BAER test under general anesthesia. Behavioral testing in the booth the past few months has not given any useful results, and it was suggested by the audiologist (the ENT had suggested it several months ago, but we put it off hoping to combine it with another procedure--no such luck).

We are hopeful for some meaningful results--in the past, results have always been qualified with the "but there is fluid present, so the real result is probably better." I am not sure how (or if) these results will change what we are doing in terms of communication. Stay tuned to find out...

An update on the big boy bed--Evan loves it! In two nights, he has only woken up in the middle of the night (ie very early morning) once. He burrowed himself down next to the side rail and went back to sleep. So far, he has been good about staying in the bed until it's time to wake up. We have changed his feeds so that the night one ends early in the morning and we can unhook him before he wakes up and starts moving around. I admit that I had some second thoughts about whether we were moving him out of the crib too soon, but it seems to be working out fine.

An update on oral eating--or lack thereof... Evan has discovered he has some control over this aspect of his life--and he likes it! When he feels like eating, he does a pretty good job. But when he doesn't, watch out. I attempted to feed him some applesauce yesterday. He spit out pretty much every bite I gave him, the little turkey! His new trick if he doesn't like it is to turn his face to his shoulder and spit the food out on his shirt (or the high chair cover). I have some pictures from yesteray yet to post--it's quite a mess.

So keep our little Pookie in your thoughts today. In the scheme of things, this is a really minor procedure but with kiddos like Evan any anesthesia can be unpredictable.

Friday, November 2, 2007

First night in the big boy bed... are growing up before our very eyes. Earlier this week we installed some temporary side rails to Evan's bed. Tonight was the first time we put him to sleep for the night in his big boy bed. He looks so grown-up, yet so small and fragile at the same time.

I know what you are thinking. It seems early to transition him from his crib to us, too. But we both have concerns about him learning to climb out of his crib with his feeding tube, oximeter, CPAP all attached--not a safe situation. It's a much shorter distance to the floor in his big bed, if he were to tumble over the side rail.

Tomorrow morning is going to be interesting. I put him in bed already asleep, so I'm sure he will wonder where he is. And he knows how to turn around and shimmy off the foot of the bed backwards. Life as we know it now is never going to be the same...

Great Day at PT

Today was a "make up" PT (physical therapy) day. Evan normally goes once a month, and his last session the therapist was sick. Jeremy rescheduled it for a Friday afternoon so that I could go this time. Evan was a PT super-star! Usually, this appointment is right after an hour of speech therapy with Kat, so he's a little worn out. Today he climbed stairs and swung and cruised on furniture to play with toys--the therapist saw all kinds of progress with him.

After therapy, we went to visit Grandma & Grandpa Key--Evan had lots of fun playing with his grandparents.

Wednesday, October 31, 2007

Tuesday, October 30, 2007

Evan loves all kinds of stars!

These are star puffs. If you aren't familiar with the star puff, they are made of corn and essentially dissolve the instant they touch saliva. Evan ate about 4 or 5 this morning for daddy (who was so excited, he called me at work with the news). And he ate another 4 or 5 for me--on camera of course. I love watching him chew, and the tiny "crunch-crunch-crunch" sound he makes when bites the stars. If you listen real carefully, you can hear it in the video.

Don't show your tummy...

I know there is some fancy developmental term for what I am about to describe...I just can't remember it.

You know how Evan pulls his shirts down to cover his tummy? Well, the other night I was laying on the floor and my shirt had crept up a little bit. He crawled over to me and pulled my shirt down too! It was so funny. I thought it was pretty smart that he could generalize a situation that happens to him, and apply it to me.

I tried to get him to do it again tonight, but he was too into "fast crawling" around the kitchen rug. When he gets to crawling like Speedy Gonzales, you can pretty much forget about getting his attention.

Sunday, October 28, 2007

One Jar

I fed Evan an entire 2.5 oz jar of sweet potatoes today. I can't promise he actually swallowed the whole jar, because a lot came out of his nose and he smeared quite a bit on his face and clothes. But over the course of two meals, I spooned every last bite into his--for the most part--open mouth.

By the fuss I am making about this, you would think Evan ate something tantamount to the size of a mayonnaise jar. But when your child can't or doesn't eat orally though, that's how big one of those tiny infant jars feels.

If you haven't lived this, there is no way you can understand the frustration involved. I mean, how do you teach your child to swallow? Something so basic--either they do it, or they don't. And if they don't...they really don't. They gag, choke, sputter--or if your are particularly unlucky, maybe even vomit--over the tiniest spoonful, the "non-nutritive taste" given least they forget God's intended purpose for a mouth.

Even more maddening is being caught in the catch-22 that is being labeled "NPO," for fear of aspiration. You are told that you can't feed your child anything by mouth (that's what NPO means, it's Latin) because it may go down the "wrong way" and he or she could get pneumonia. But how are they supposed to learn how to swallow without actually eating something??? The short answer is they can't--at some point you have to just take that risk, figuring it's more harmful to let them develop an oral aversion and take your chances with aspiration pneumonia.

And so, after almost a year of VitalStim therapy, over a year and a half of "tastings," here we are. One Jar. Not just a few spoonfuls, with the remainder languishing in the back of the fridge until there is no doubt in the answer to the age old question of "Could that still be good?" Or the rest being portioned out into tiny freezer containers for later tastings. Or, shy those spoonfuls, dumped into the day's blended diet to be tube fed throughout the day.

No, he actually ate it. One whole Jar.

The first sweet potato meal.

Sweet potatoes, part 2.

Saturday, October 27, 2007

Cider House Rules

Rule #1: Dress warm in case it gets cold

Rule #2: Help mommy pick lots of apples

Rule #3: Give mommy a big hug after all that hard work

This afternoon Evan and I, along with Julie and Baby Kaia, went to a friend's house to pick some apples and watch fresh cider being pressed. The cider tasted fantastic, the company was great (thanks to the Kocher family for inviting us!), and the beautiful weather made for some fantastic photos. If you would like to see all the pictures, they are posted on Shutterfly