December 2014

This might be my favorite photo from the entire month.

Super excited about the train ride to visit Santa!

Probably the best Santa photo we got this year. Might not look like it, but he was actually thrilled to visit with Santa. Knox was realllly into Christmas and Santa this year. It was magical for him.

At Chris’ Mason Christmas dinner. He was called up to the stage to help jingle the bells.


This nifty contraption allowed Knox to just give the ball a good shove right down the center of the lane.

It wasn’t going very fast but it was straight

He actually did quite well, even picking up two spares.

The bowling alley also had video games. This driving game was popular. I didn’t even have to give him any money for it

The bowling party was actually for my babywearing group. There were lots of kids and babies and gorgeous fluffy wraps to try.

I am 31 weeks with Smoosh here, wearing Knox in a Natibaby Invisibility Cloak 4 (visiting from a friend).

Rick Steves is from Edmonds, the town we live in, and he sponsors a free holiday trolley during December. It’s decorated with lights and music and Santa hops off and on to chat and take pictures. When we first got on, Knox wanted me to sit with him. But when Santa got on, he told me to leave his seat. When I moved over, Knox yelled to the front of the trolley, “Hey Santa, come sit with me!” And to his delight, Santa did.

Peacefully asleep, waiting for Santa

He did pretty good, thanks to Santa and family and friends. This year has been the best Christmas yet. So full of magic, wonder and excitement for Knox. Yet, he had no expectations of what he would or should get. He was genuinely excited and appreciative of everything. I hope we can keep this magic going for a few more years.

Waiting to be told we can begin. Every morning when he wakes, he first walks to our room and climbs in for snuggles. This morning, he snuck out to peak at the tree. He ran into our room and whispered, “mama, Santa came!” He seemed surprised.

Christmas day movie snuggles with daddy and a couple of his favorite gifts

December was a good month for us. We were busy with fun things and able to take time off work to be with each other over Christmas week. The train ride was really fun for Knox, as well as the trolley ride. I was able to visit one of my very good friends in Portland. We had a Christmas party with more good friends. Hoping the new year brings even more good things for us.


One of our favorite family activities this summer has been car camping. Unfortunately backpacking is a little more than we can handle right now (although we do miss it so much). Since Chris is a Mason, we have access to the Masonic Family Campground near Granite Falls, WA. It’s less than an hour from our house, inexpensive and one of the nicest campgrounds we’ve ever stayed at. Most of the sites are very secluded, it’s quiet and right on a river. We’ve spent many weekends there this summer. We’ve started a tradition of sorts that Knox latched on to – singing goodnight songs by the fire. It’s now part of the camping bedtime routine after brushing teeth and jammies. Chris sings a made up song about Knox going to bed and Knox sings a dueling song of not going to bed. It’s really cute. Wish I could get a video but it’s the sort of thing that wouldn’t be the same if they knew they were being recorded.

On Saturday we usually make breakfast and head out into the Mt. Baker-Snoqualmie Forest for a hike. Knox loves hiking and does great, but he is only good for 2-3 miles before he’s done.

Our most recent trip included a hike starting from the Sunshine Mine Trailhead.

This was actually a really difficult trail. In hindsight it’s not the best trail for a young kid. It is very rocky  and we crossed several creeks, one of which was a little sketchy.

Knox heading fearlessly up the trail.

Another section.

The trail was very pretty, not a lot of views but there were big trees and tons of moss and water. Knox did fantastic. He did fall a few times but only cried once – and that was at the very end. We were pushing his three miles and it was past nap time. He wasn’t afraid of any of the creek crossings. Chris carried him across a couple of the smaller creeks but he had to cross the bigger ones on his own. He actually did better when he wasn’t holding one of our hands – he seemed to think that made him invincible. He would just take a flying leap without considering his steps. At one crossing, he was holding Chris’ hand loosely but not watching his steps. He walked right off the log and fell three feet down into the shallow water. It startled him but he wasn’t hurt and didn’t cry. Chris just lifted him up and he kept right on going. He was significantly more careful when on his own.

Knox is right in front of Chris.

Safely across. Koza is with me waiting her turn. She was a little frightened and needed some reassurance. Chris put Knox in a safe place and positioned himself so he could help her cross. He slipped and fell on the rocks below the big log, banging up his knee and elbow pretty good.

Knox carries his own backpack, but it is just his pump backpack. I’d like to get him a hiking backpack but not sure if loading him up with anything else is really a good idea until he gets a little bigger.

Looking forward to our next trip.


Things have been pretty busy for us the last few months.

We moved to Edmonds (‘burb 10 miles north of downtown Seattle) and we love it here. Just two miles from the beach. It’s a great community. Chris is enjoying his new job as Director of Development and Communications for Ritecare of Washington.  I begin a new job soon working for a solo practitioner attorney. We sold our Medical Lake house which is a relief.

Knox is awesome, growing like a weed and is incredibly smart. He loves tying things together with rope and reading books. He still loves the water in all forms, swimming, baths,and  throwing rocks in rivers. Our most recent camping trip included a three hour rafting adventure on inner tubes – Knox loved it. He has a complex imagination and comes up with wild ideas every day. Just the other day we were walking through a park and someone was playing music. Knox yelled out, “wait mom! I want to dance!” So he did. And then he apparently didn’t like the next song because he was done.

Tying. He called this masterpiece “Rainbow”.

I have really enjoyed being home with him for the last few months. We keep busy by going to library story time, the zoo, errands and naps. Knox is wildly entertaining – if a little frustrating at times. He is three after all, and a stubborn three year old at that. I’m a little sad and apprehensive about putting him in a new daycare and going back to work. But I think the routine of daycare will be good for him. He always eats better when he is with peers – his oral intake has gone down since he stopped going to daycare back in May. Having a second paycheck for a few months will be nice as well.

One of our many trips to the beach. He told me he had a bird on his shoulder.

Our summer has been busy with getting settled in our rental home and exploring our neighborhood and Seattle. We’ve also done several camping trips together. We’ve met up with friends and family. We still have more trips planned, weekend camping trips and a biking trip to the San Juan Islands. Summer is far from over, although I am finished with the super hot weather.

They even sleep alike

My baby is waaaaay up there with his daddy, uncles and aunt. I was safe on the ground.

Knox was explaining how he was going to grow up to be a pink horse. And mommy and daddy were going to be pink horses too and we would be a family of pink horses “togedder”.

On a hike


He needed his pinwheel for this hike

Best buddies

Car entertainment.

That water is even colder than it looks


I leave you with this video (taken long ago):




He might just get his wish in February, 2015.


I recently came across this blog post on Offbeat Families. It is about reconnecting with a pet after having kids. It resonated with me because lately Koza has been getting the short end of the stick. She has some bad habits that we need to work on but haven’t because of time and other poor excuses. Things like stealing food right from Knox’s hand or raiding the trash can.  She has also had a couple of accidents in the house. These behaviors are really frustrating – but are our own fault. While she certainly is not ignored or neglected in any major way, she definitely is not treated like the diva she used to be.

Her life really changed while I was pregnant with Knox. She was in a terrible accident with a horse that cost her her right eye. It was painful and scary for her. She recovered pretty well from the surgery and adapted to being blind in one eye. A month later Knox was born. I didn’t have a very easy postpartum recovery and so her needs were pushed down the list. As I said, she wasn’t neglected but she did not get the level of affection and attention to which she was accustomed. She did not seem to care one whit about Knox’s arrival. But it did affect her negatively. Twice daily walks and/or dog park trips nearly stopped. Knox was a high needs infant which didn’t leave much left over for anything (or anyone) else.  She never showed any negativity towards Knox, just apathy.

After infancy, Knox developed into a high needs toddler because of his medical difficulties. After his feeding tube was placed, all energy went to Knox with barely enough left over for jobs and each other.

Ashamedly, we were considering finding her a new home because we were having trouble finding a place to live in Seattle that would accept her. We did finally find a house (just yesterday, only three days before Chris is scheduled to leave) and we get to keep her.

This article came at a perfect time and has great suggestions on reconnecting with her. For example, I hate trimming her nails (so does she). They are ridiculously long (Knox’s toenails are too long as well so it’s not unique to her). I plan to have someone else do it. Sure, it will cost a little money but I think will be worth it. If I have to choose who gets a pedicure, I guess I would rather Koza get it.

Another thing we will work on it curbing her bad habits. Being home for a while means I will have time to work with her – I can include Knox as well so it will be a family activity. It will be a win-win if she becomes an easier dog and we all stay busy and connected.

Since we will live just a few miles from the Puget Sound beach, I foresee summer days spent exploring and playing fetch. Knox and I will have a limited play budget so most of our play time will be outside. Parks and hikes will be daily activities. Koza will have to come along with us.

Koza really is an awesome dog. She is loving, affectionate and gentle. She loves to sleep with Knox. She will play fetch until she drops. Watching her interact with the neighborhood deer or birds is delightful – she takes their presence very seriously.  She prefers to be touching one of her humans at all times. It’s not enough to sit beside you on the couch, she needs to be on you. This used to be one of the things that made me love her so much. We need to celebrate this.

We have had her for over 8 years (she is 10 or more years old) and she deserves to spend the rest of her days in peace and comfort. Ok, not much peace since we have Knox but definitely comfortable and loved.

A younger, less gray Koza.

She likes to sleep with her head covered.



Taking Koza for a walk



Life has been busy at the Baker household. The past month and a half has seen a new job, preparation for a cross-state move, a (minor) car accident, a raging tummy virus, Knox eating bacon, getting locked out of the house and more.

The big news: After spending 11 years with Scouting, an organization that Chris loves, he has accepted a new position with RiteCare of Washington. He will be the Director of Development and Communications, overseeing state-wide fundraising and communications. It is a huge step and an honor. He is really looking forward to getting started. We will be moving from Spokane to Seattle in April.

Right now we are busy getting our Spokane house ready to sell and packing up our things. We still don’t have a home in Seattle yet, but are headed there this weekend and will hopefully find something so we can sign a lease and get an address.

To finish out his Scouting career, Chris put on the annual Leadership Breakfast at the INB Convention Center. It was the largest and most successful event to date. His Scouting tenure has been challenging and rewarding so it was not an easy decision to leave. But we are excited for this new adventure.

In other news, I had a minor fender bender during a snow storm that hit right before 5pm. Someone tried to make a left hand turn in front of me, I couldn’t stop in time and slid right into him. No one was hurt, it didn’t even make Knox cry or afraid. The only damage was a small crack to my front bumper. The other driver’s insurance carrier admitted liability and paid for the damage.

Toddler Toes!!

“Mama take a pitcher a me! I’m so big and stwong!”

Playing air hockey with his best friend Connor.

Sleepyface. On this night, he spent about a half hour in our bed, wide awake and squeezing my earlobes. Weirdo.

On our first house hunting trip to Seattle. He spent a long day mostly in the car. I didn’t try to correct his spoon/water activity. Gotta give each other some slack sometimes.

Driving through the Cascades on our way home from Seattle. Being in the mountains and seeing the trees solidified our decision to move to the west side. It will be wonderful to live among the trees again.


Knox loves his baby.

MRSA sucks

February also brought MRSA back to Knox’s stoma. The infection reared it’s ugly head and caused much discomfort for him. His motility tanked, had to be put on continuous feeds to minimize vomiting and was just miserable and in pain all the time. One afternoon daycare called to say he was balled up on the floor screaming in pain. I flew over there and called the surgeon’s office (the stoma is her domain since she did it). I was told we couldn’t be seen for another three weeks and if I wanted to see on call surgeon I should go to ER. Really maddening. One more strike against Sacred Heart. I called his pediatrician next and we were sitting in her office 15 minutes later. She concurred it was badly infected and gave us antibiotics. It required a 10 day dose of Bactrim to get rid of it. This episode was so disheartening. Sometimes I desperately wish we didn’t need the g-tube and that his stomach would just function like it is supposed to function.

You can see here his button is sticking out – this isn’t normal. We attributed it to the infection and his stomach being distended. Yet, when the infected abated the stem still poked out too far. We considered changing to a shorter length but out of the blue it went back to resting gently against the skin as it is supposed to. Weird. Goes to show absolutely nothing about Knox’s health can be predicted. And often can’t be explained.

Today, his stoma is beautiful and pain free. No thanks to the surgeon’s office.

Sitting on the floor watching a breakfast creation bake. Knox chose this moment to try bacon. He ate three bites!!

And this happened. Was a mess of epic proportions. Actually happened the same night as the car accident. Arrived home (after a shaky white knuckle drive) to find the awesome neighbor had plowed our driveway. Got Knox out of the car to discover the lid on the feeding bag had popped off, spilling bright green blend all over the floor of the car, his pants, car seat, my pants and the ground. I didn’t realize the extent of the mess until daylight next morning. It was super fun scraping frozen blend out of the carpeted floor of the car.

I also learned a very valuable lesson this month. NEVER leave the house (even if the door is left open) without a phone, keys, and coat if there is a three year old inside. You just might find yourself on the wrong side of the door futilely begging for said three year old to flip the lock. As he gleefully wields a blue marker against the window. It’s true.

I tried coaching him through the door on trying to flip the deadbolt. Just imagine for a second what you might say to a tiny human who doesn’t know what a deadbolt is and can barely reach it. How do you explain that? I gave up after ten minutes and went across the street to borrow the neighbor’s phone. This happened on the eve of Chris’ biggest event of the year so he was at the office, 25 minutes away, buried in work. My first words to him, “which window do you want me to break?” He didn’t think that was a great idea so he flew home to rescue me. I went back across the street after hanging up to wait. And watch Knox flit around the living room like a crazy unsupervised three year old. He wasn’t afraid. He did ask me to come inside at some point though. Since I couldn’t, he retreated down the hallway where I couldn’t see or hear him. Chris arrived home after a total of 40 minutes being outside in the freezing cold.

I took Knox to the grocery store to grab a couple things one day. There was a display of single pop cans and Knox decided, “Mama!! We have to get a soda for Daddy!! THIS ONE is what Daddy wants!” He was very proud of himself for picking out a pop for Daddy.

Toddler toes in the tub

He dressed himself.

When the lid closed such that he couldn’t open it, he yelled, “Mama! The box is not listening to me!”

Watching tv with Koza

Crazy monkey child

I checked in on Knox one night and heard something different. Snoring, that wasn’t Knox snoring. I pulled back his blanket to find…

Koza in his bed, snuggled up to him.

I’m not sure, but I think she hopped up and he covered her up and they fell asleep together. They have done this a few times since. They keep each other safe from monsters.

First ride of the year. It was like 40 degrees out which is a heat wave that doesn’t require a coat.

Our longtime friend, Nick, is here for a few days to visit and help with painting the house. Knox loves him.


Mama fail: Knox, we don’t hit in this house. Knox: “We only hit outside the house?!”

Just went in to unplug Knox (he’s having a flare and so is on continuous feeds). I got the extension off and tucked him back in. He did not awaken. I whispered I love you and he smiled in his sleep at that moment.

“Mama what’s daddy doing?” I don’t know, let’s go see shall we? “I’m not Shallwe, I’m Knox Baker!”

Spring, maybe?

Yesterday was gorgeous outside. Sunny and 50+ degrees. After getting home from work, I took Knox for a walk around our neighborhood. 

We started our walk with his shopping cart. After two years, this is still one of his favorite toys.

Wild ginger hair


After getting to the end of the street, he saw other kids riding bikes and asked if he could ride his bike. So we went back home and dug out his tricycle.


Mr. Cool

This kid can pedal as slow as a snail or as fast as a deer. All depends on his mood of the moment.

After riding around the block, he wanted to go up the big hill instead of heading towards home. He did great, only needed a small push a couple of times.

We headed towards the middle school which has a huge soccer/baseball field area. I figured he could run around a little bit. 

After chasing off a couple of geese he wandered over to the trees that sits behind the school. I had never been over there.

We found this:

Turns out there is a huge wetlands area one block from our house. I had no idea this was public land. There are trails everywhere. It has everything for a kid: big water puddles, sticks, huge rock piles for climbing and room to run and explore. We didn’t have long to play because it was getting dark.

Playing in a small puddle, splashing with a stick.

I didn’t take many pictures because I didn’t want to risk dropping my phone, the ground was very wet.

We had a wonderful time playing outside on the first real nice day of the year. Too bad we are leaving Medical Lake  just when we found something so nice just down the road. This would have been a fantastic place for Knox to play in the summer.

Feeding Tube Awareness Week 2014

Super Tubie!!

This week is a celebration of feeding tubes and everything they enable our tubies to accomplish. This year’s theme “Nothing Can Hold Us Back.” It’s a pretty accurate description – not only does Knox’s feeding tube not hold him back from anything, but it allows him to do so much more than he would if he didn’t have the tube. It has not been an easy road for us but the feeding tube has saved Knox’s life. And for that reason, we are thankful for it.

Knox is growing, thriving and loving life because his tube allows him to receive good nutrition. He goes swimming, plays with friends, jumps on his trampoline, runs fast, is smart, loving, laughs often, strong, throws epic tantrums, causes shenanigans, and does every single thing that a typical three year can do. And all because his feeding tube keeps him healthy.

Playing in the snow while being tube fed! Nothing can stop him!

His feeding tube isn’t the problem, it doesn’t cause him to vomit or have stomach pain. Quite the opposite. His feeding tube is our positive treatment that keeps him on the road to being healthy and thriving.

“Mama! I’m so big and stwong!”

The Feeding Tube Awareness Foundation has suggested a list of blogging topics for this week to help get the word out about feeding tubes. I will address some of them below.

We don’t let the feeding tube keep us hostage at home. We go everywhere we would if we didn’t have the feeding tube. Camping, the zoo, museums, shopping, daycare, work, car trips, restaurants, Greenbluff (pumpkin patch/fruit orchards), doctor offices, a wedding, professional family photo sessions, parks, our backyard, and many many more places. Anywhere that Knox goes, we can feed him. We aren’t afraid or ashamed in any way. Sure, we’ve gotten second looks and some people comment or ask questions but we don’t let the tube hold us back from going anywhere or doing anything.

Knox loves the water. It gives him great joy.

The feeding tube has allowed Knox to overcome many obstacles. His original diagnosis, “Failure to Thrive” at 15 months was quite a hard blow as a parent. It’s a catch all term that means a child isn’t following the growth curve. After that, he was diagnosed with gastroparesis, reflux and sensory processing difficulties. It was also discovered that his adenoids and tonsils were far too large. He has endured around the clock vomiting (a six month long nightmare that has thankfully abated), granulation tissue, stomach pain that we can’t even quantify, surgeries, numerous testing procedures, long car rides to Seattle for medical care, anesthesia, traumatic IV placements, MRSA, disrespectful and uncaring medical providers (these were few), and much more. More than any one person should ever have to endure in a lifetime, let alone by the age of three.

MRSA topical infection

The “Failure to Thrive” diagnosis still follows in his medical records even though he is so far from failing to thrive. He is, indeed, absolutely thriving right now and all thanks to his feeding tube. I consider “failure to thrive” to be a diagnosis of the past that Knox has conquered. He still suffers from gastroparesis and its unpredictable patterns but the feeding tube allows us to give him a healthy liquid diet that his stomach is able to digest efficiently. Without the feeding tube, he might have eventually died because his stomach and intestine simply cannot handle solid food in enough quantity to sustain him.

Knox has also overcome significant vomiting. It’s hard to explain how bad this really was for us. Most people can’t imagine a two year old boy vomiting 5-10 times a day, every single day for months on end. And I’m not talking about spit up. I mean forceful, projectile vomit that completely emptied his stomach. I’ve had seasoned daycare workers tell me they have never seen a child vomit with the force and volume that Knox can vomit. Watching our baby go through this was heartbreaking. On a more selfish and practical standpoint, it also caused significant sleep deprivation for Chris and I because the best time of day to vomit is of course at night. We were walking zombies. Some days, we probably weren’t safe to drive because of the sleep deprivation. We stored the carpet steam cleaner in Knox’s bedroom so it was ready to go at all times. All of our bath towels have endured endless vomit and bleach cycles in the washing machine. I can’t stress enough how awful this was. Thankfully, Knox has grown out of this (knock on wood). He still vomits far more than he should, but it isn’t everyday anymore. We probably average once or twice a week. The triggers tend to be pump feeding mistakes (giving him too much), illness (any and every bug causes his motility to tank) and still a bit of random that can’t be explained.

Hammering while tube feeding

There are challenges that go along with tube feeding. Putting the medical stuff aside, tube feeding does require some extra tools and tricks. For example, Knox’s feed rates and volume is controlled by a pump. A mechanical pump controlled by an electronic panel means that we don’t always communicate very well. The pump is very finicky about what we put in it, the position of it and the feeding bag/delivery set and sometimes finicky about nothing in particular. It alarms often. We have a love/hate relationship. We (and anyone who cares for Knox) have had to become a magician at fixing pump alarms. We have to read Knox’s cues to figure out how fast and how much his body can handle to maximize digestion and avoid vomit. Sometimes we fail and end up with epic projectile vomit. There are also tons of supplies – feeding bags, multiple types and sizes of syringes, extension sets and cleaning materials. We have to store all this stuff somewhere in our house. Sometimes it feels like we are being overrun. We have figured out a system and also have started culling things we never or very rarely use (ten inch long q-tips anyone?) so we are starting to get the medical mess under control. Since we don’t use formula much anymore, that has alleviated space issues – a month’s worth of formula takes up quite a bit of space.

Another challenge is battling granulation tissue. This is when the body attempts to “heal” the stoma (hole) by growing tissue around the g-tube. This extra tissue is painful and bleeds. There are a handful of ways to deal with it. Doctors tend to prefer silver nitrate sticks. This is a very painful method that “burns” off the unwanted tissue by cauterizing it. It is fast and effective. But it hurts and doesn’t do anything to prevent tissue growth. (Even though one Spokane GI tried to tell me it doesn’t really hurt and Knox was just getting worked up for no reason. %@&^*.) I hate doing this to him and so we really only use it if the tissue is out of control and nothing else works. We typically use a topical steroid cream and that works most of the time. In our case, I’ve found it works best when used a tiny bit everyday to prevent growth in the first place.  It’s a little controversial among our providers because some of them don’t think it’s safe to use daily. Others do.  Right now it’s a moot point because his stoma is really great right now – not growing much tissue at all so we can use the cream on an as needed basis.

Granulation Tissue

At the mall while tube feeding. On the “ex-ta-later”

Some challenges we have overcome, and others we are still battling. What helps us get through these challenges is patience, our son’s resiliency, each other, trusted medical providers and more patience.

One more thing that helps me significantly. I can’t deny that my son’s feeding issues have not taken an emotional toll. Being unable to feed your child, being told your child is “failure to thrive”, making the choice to place a feeding tube and using formula for years takes a very real toll on a mother’s heart. I have missed out on preparing him healthy and not so healthy fun foods and feeding him/watching him eat. We’ve never shared a brownie batter mixing spoon. He’s never eaten birthday cake. One way I have managed to gain back some of that sense of purpose and including him in our family food experiences is by blending his liquid diet instead of using instant open formula. I am able to give him the healthiest possible foods – foods that most people (let alone toddlers) don’t eat on a regular enough basis. I can also include him in the not so healthy splurges that we all take advantage of – for example I blended a small slice of his birthday cake. He often gets the same meals that we eat.  On a daily basis he “eats” spinach, quinoa, flax, coconut oil, full fat plain greek yogurt, nutritional yeast, blueberries, kale, peaches, mangoes, hard boiled eggs and much more. It’s a very balanced and healthy diet that has enabled him to thrive. When we first started the blended diet, he gained a significant amount of weight in just four weeks after several months of stagnated gain on formula. Preparing his blend is a boost for me as a mama.

A batch of blend. Beets make it pretty! I love my Blendtec! Could not Now if I could just get the Wildside Jar for double batches…

This year, in 2014, I have hope that Knox will continue to grow and thrive. If that includes the feeding tube (and it likely does), so be it. I could say I hope we can get rid of the tube. It would be great if he could eat all of calories, drink all of his hydration and take all of his medications orally. But that is not realistic this year. And I’m okay with that. We are thankful for the feeding tube that has given our son his life.

I love a tubie!!

This week has been really active all over the web with tube feeding success stories. Scrolling through the FTA Facebook page has been comforting and uplifting. I have also participated in FTA Week by writing a couple of guest blog posts for other blogs.

I wrote a post for Liberating Working Moms, a blog focused on issues relevant to moms that work.  My guest post focused on being a work outside the home mama with a son that has a feeding tube. Read it here.

I wrote another post for Mama By The Bay. Her blog is absolutely beautiful. She often writes about issues surrounding how we feed our babies and supporting women with whatever choice they make. Last year she and several other bloggers sponsored the I Support You Movement, a celebration of feeding with love. I asked her if she would feature tube feeding on her blog as another way of feeding with love and she graciously and gladly obliged. Here is that contribution.