Sunday, January 31, 2016

Heeyyyy camera

The other day I watched a webinar on photography, and all of a sudden I found myself anxious to pull out my DSLR and start snapping some shots of my boys. So I did.  Breakfast time, nothing special.  And they actually looked at the camera because they hadn't seen it in a while.





My camera has found a new home on the kitchen table since then and I've been grabbing lots of snapshots.  So maybe this means I'll start doing some short posts with pictures.  I think family would definitely like that.  And so would I. :)

Thursday, December 24, 2015

Snoke Family Update Christmas 2015



Heeeeeey everyone!  Merry Christmas!!

Thought I'd give you all a quick update on how we're doing in the Snoke household.

Dave is in the off-season for ultimate frisbee right now and I am LOVING having him at home more for the time being.  We haven't really accomplished anything super amazing with this extra time, but rather our life has just been a wee bit less stressful and we've been able to spend more time together tackling all the regular day-to-day things that life throws at us.  He's been getting out and running, riding his bike, or "exploring" outside with the boys as much as he can, and he's also helping me around the house and in the kitchen a ton which is a super duper blessing to my frequently overwhelmed self.  Work is going well for him.  He goes to work, does his thing, and comes home. I'm very grateful that he has a job that does not stress him out a ton and allows him the flexibility to leave early or go in late on occasion so he can attend to family matters or accompany changes in schedule due to my job.

Krew is now 5 1/2 and in transitional kindergarten (ie extended preschool, not actual kindergarten) and doing very well.  His teachers are focusing on helping him to overcome his perfectionist tendencies (hmmm no idea where he got those) and also manage his emotions in times of disappointment, embarrassment, or sadness.  He's still our sensitive, inquisitive, deep-thinking, emotional, introspective little boy. He's very into Legos, drawing, and other art crafts.  He's obsessed with Minecraft on the iPad and gets a 45-minute limit per day.  Otherwise we start seeing behavior issues due to too much screen time.  Through managing his 45 minutes using a timer, he's now learned how to add and subtract in 5s, 10s, and 15s and is impressive in how much math he can do in his head.  He's found that movies affect his emotions too much, so we don't watch a lot of those right now.  Also he played on a recreational soccer team for a couple months this fall and surprised us by actually participating (the previous season he sat on the sidelines pouting much of the time) and actually turned out to be a decent soccer player.  It was super exciting and we were so proud of him.

Greyden will be 3 1/2 at the end of January and is in the 3-year-old class at preschool.  He seems to really enjoy school.  He still doesn't really color, draw, or write much, and honestly we still can't even tell if he's left- or right-handed.  But he loves the social interaction and learning and singing with his class.  He is a spunky little boy.  He is either on or off, hot or cold.  Usually he's on.  He's typically smiling, talking loudly, attacking people with aggressive physical attention, and always moving. That child.  I tell him to stand by the cart in the grocery store and he can't help but wiggle in his place.  He's the kid disappearing down the next aisle, walking off with the wrong mom, climbing in the clothing racks, running in front of other people's carts.  All the while with a huge grin or look of excitement on his face.  Not because he's trying to disobey, but rather because he's spirited and curious and excited about life.  He's good for Krew.  It makes me smile inside (and sometimes on the outside) to see Krew joining in Greyden's "wild" behaviors while we're out in public, because I know Grey's bringing out a hidden side of Krew that we wouldn't see otherwise.  When I see Krew getting excited, running around playing make-believe in the grocery store, getting in other people's ways, I may feel slightly embarrassed and be apologetic, but really inside I'm so happy to see him being free-spirited and also playing well with his brother.  At the same time, Krew will watch over Greyden and tell him, "Greyden, you shouldn't do that.  That's not safe."  God gave them each other for a reason.

I'm sure everyone is wondering how Greyden's health is doing, and so I will provide a relatively brief update on that.  In his last endoscopy in October, Greyden's results showed that his upper esophagus was almost completely healed (with an eosinophil count of 2, down from >50 at his last endoscopy).  His lower esophagus was markedly healed, with a count of 36 eosinophils, down from >80 eosinophils at his last endoscopy.  We still have work to do on his lower esophagus, but the results were still wonderful and were what we had been praying for, and I cried many relieved, grateful mommy tears.  He wasn't all the way healed, but his health was moving in the right direction and we were finding our way.  The consensus from most of the doctors we talked to at that time seemed to be that no more additional food restrictions were needed (i.e. we likely caught all of his food triggers) but that his reflux needed to be resolved for the remaining esophageal damage.  It is hard for the doctors to know what to do with Greyden, and I completely understand this, because most if not all of their patients are on PPIs at this point in their healing journeys.  They have flat out told us this.  They all suggested PPIs to see if it heals the remaining damage.  We're not opposed to using PPIs if it's the only choice left, but we do want to see if we can heal his reflux issues through other means first.  So for right now we are taking him to an integrative doctor who is helping us to try to balance his immune system and heal his digestive system, which will hopefully resolve the reflux and stop any remaining EoE issues.  We are giving him many daily supplements to trigger his immune system to balance itself out and also to help his body heal.  Already we have seen huge improvements in his skin, which is encouraging.  His cradle cap that he'd had since he was a baby has suddenly all flaked off and is now gone.  Additionally, the keratosis pilaris that had been constantly getting worse on his arms and face is now reversing and is much milder than previously.  Even these small signs give me some hope.  Our current plan with the integrative doc will likely take another two or three months before we'll be ready to do another endoscopy and see if it's working.  In the meantime, he is on the same food restrictions as he's been for the last six months or so.  No gluten, diary, soy, rice, eggs, beef, chicken, pork, fish, shellfish, peanuts, tree nuts, green beans, bananas (and plantains by relation), cocoa, or yeast.  We pray that at his next endoscopy he'll be healed, and then we can start reintroducing some foods to his diet again.

As for an update on me, I'm staying busy being wife, mom, homemaker, and part-time worker.  My health goes up and down, but I'd like to say I'm having more and more good days and fewer and fewer bad days.  If I stay strict on my diet and my sleep and keep my stress level low, I do well.  But when any of those three areas falters, my body tends to crash. My job has gone in and out of spurts of being very stressful over the last 6-9 months, which at times led me to work up to 30 hours per week. I know that doesn't sound like much to all you full-time workers out there, but with my health issues and also keeping up with Greyden's needs, it's simply too much for me right now.  I'm grateful to say it now looks like those stressful times at work should be over for a long while and I'm back down to working 16-24 hours per week.  I'm still spending a tremendous number of hours in the kitchen trying to keep up with healing diets for both Greyden and me, but as a result I'm also starting to feel like I really know what I'm doing in the kitchen and it's exciting to be able to say I think I'm a fairly decent cook.  Except for cooking fish and hamburgers.  I always overcook fish and hamburgers. (Sorry, Dave.) I also do volunteer work for church and participate in Bible studies. It's a busy life.  And I miss things like blogging, photography, and playing piano, which are still passions of mine that I never seem to have time for anymore.  I'm hoping that I can eventually learn to manage all my responsibilities better so I can get back to some of those things that bring me extra joy.  But honestly, my life is already pretty joyous as it is. :)

Alright I think that's a good update on us all.  We wish you all a very Merry Christmas and encourage you to remember the reason for the season in the midst of everything.  If it weren't for Jesus and God's grace, we wouldn't be where we are today as a family, nor would we have the hope that we do for the future.  We look forward to 2016 and pray it's a wonderful year for you all, too. :)

God bless,
Kara (& the rest of The Snokes)

Monday, October 5, 2015

The Teal Pumpkin Project and Reflections on a Year Ago

The kids have been begging to put up decorations and pumpkins are popping up everywhere. The air is getting cool, leaves are starting to turn.  Halloween is quickly approaching.  And my anxieties are increasing.

This week marks the one-year anniversary of one of the hardest weeks of my life.  A year ago this week, we took our son Greyden to numerous specialists to try to find out the cause of his intense and scary vomiting episodes.  As part of the diagnosis processes and because the specialists couldn't explain the mystery of his vomiting, we were told we had to schedule an upper GI x-ray and abdominal ultrasound to rule out internal abnormalities.  The doctor who requested the x-ray and ultrasound kindly avoided the word tumor, but he didn't have to say it.  I knew it was a concern, even if unlikely. (And my suspicions about it being a concern were later confirmed when I read through his paperwork from the visit.)

What followed was one of the most intensely emotional weeks of my life.  Living day to day not knowing if there was something terribly wrong with our child, and knowing there could be, was hard beyond description.  I had some desperate chats with God that week.  I cried a ton.  I had a constant knot in my stomach and I barely ate. Everything else in life faded into the background as I focused on appreciating the smiles on my kids' faces and hugging them often, especially Greyden, as I couldn't help but fear the extreme situation in which we could lose him if something really was wrong inside his little body.  For the first time, the reality of how quickly one of my children could be taken from me was incredibly tangible. And amazingly, during this time, I somehow came to grips with this reality. Through my constant reflections and turning to God, I reached a point where I knew He was in control, and I knew He could take my child from me, and I knew that if that happened, He would carry me through it and I would somehow survive.  Not without intense pain and suffering, but I knew that there was more to reality what I could see right in front of me, and that God loved me and would somehow guide me through the darkness.  It was an amazing place to be in my relationship with Him, however intense and hard it was.

For those of you who don't know the whole story, the x-ray and ultrasound turned out fine.  The only thing the doctors found was some reflux.  Everything else internally appeared just as it should be.  I praised God, oh, how I thanked Him.  There was no tumor or devastating abnormality; we weren't dealing with anything life-threatening.  Let me tell you, when you have fears that something life-taking could be wrong with your child, and then you find out it's not the case, all other bad news seems somewhat pale in comparison.  So as we moved forward and continued to face health struggles with Greyden - a surgery, an endoscopy, diagnosis of an eosinophilic disorder, then extreme diet changes and food allergies, more bad endoscopies, and a return of his intense vomiting episodes...none of it seemed nearly as bad anymore. Because our little boy was in our arms and was smiling and loving on us and we were loving on him and that's what mattered.

Ironically, as I reflect on this week a year ago, we are preparing for yet another endoscopy for Greyden this Wednesday.  We will be finding out if our most recent diet changes have removed enough food allergens from his diet for his esophagus to heal.  My stomach again is twisting into knots, and I'm finding myself emotional and weepy.  Every endoscopy thus far - this is our fourth in a year - has resulted in bad news and difficult life changes.  I have a small glimmer of hope somewhere inside that maybe it will be our turn for good news, but I don't count on it.  I pray to God, I ask him to heal our little boy, but I know that God isn't a genie in a bottle and that what He allows to happen in this world isn't always what I would want to happen. Oh, if I've learned one thing over the last year, it's been that. That His ways are not my ways, but He is still God and He still loves me and I am to still love Him back despite it all.

So all of this finally leads me to why I originally sat down to write this blog post (and clearly I got very sidetracked - sorry!): with Halloween approaching, I'm having concerns about Greyden and trick-or-treating.  There are so few candies he can eat, and honestly I'm nervous about him even reaching into the bags of candy at all because of the allergens that will get onto his hands. It's been such a long road with him, and we believe we've seen him react to even small amounts of cross-contact with his allergen foods.  Halloween trick-or-treating is a very nerve-racking scenario for a parent of a child with food allergies or similar issues.



The Teal Pumpkin Project is a campaign led by Food Allergy Research and Education (FARE) to raise awareness of all the children struggling with food allergies, like Greyden, who may not be able to participate in Halloween trick-or-treating as freely as other kids.  By placing a teal pumpkin on your porch, you are telling others that your house is a safe place for kids with food allergies and that you are providing non-food items for kids who cannot have candy.  You should provide the non-food items in a bowl separate from the food items, ideally, if you decide to do both.  I think this is SO awesome, as the teal pumpkin houses may be the only ones where Greyden can chose a treat and actually keep it for himself.  You can read all about the Teal Pumpkin Project here:  http://www.foodallergy.org/teal-pumpkin-project.

It's crazy to me to think about a year ago.  I'm sure there were teal pumpkins, but I took no notice.  It didn't matter to us yet. I didn't realize how many people are struggling and suffering with food allergies, and I had no idea how we ourselves would end up falling into it all face-first.  It's been an eye-opening year and I'm thankful for my new awareness.

So this year we will be placing a teal pumpkin on our porch.  We will have non-food treats and also some allergen-free candies (smarties and ring pops) for the kids.  Dave and I decided to only offer candies that are safe for Greyden and most kids with food allergies, just out of respect for him and them.  It's our way of trying to make life a little more "normal" and fun for our little boy.  These days, with the way everything revolves around food, very little seems "normal" for Greyden, and I'm sure it's the same way for other kids with food allergies.  If we can give them a little piece of normal in the midst of their constant worries at Halloween, then by all means let's do it.

If you'd like to participate in the Teal Pumpkin Project, you can pledge to participate at the link below:
https://www.foodallergy.org/teal-pumpkin-project/pledge

Also, if you'd like a list of ideas of non-food items that you can provide for trick-or-treaters, here is a list from the Teal Pumpkin Project website:

  • Glow sticks, bracelets, or necklaces
  • Pencils, pens, crayons or markers
  • Bubbles
  • Halloween erasers or pencil toppers
  • Mini Slinkies
  • Whistles, kazoos, or noisemakers
  • Bouncy balls
  • Finger puppets or novelty toys
  • Coins
  • Spider rings
  • Vampire fangs
  • Mini notepads
  • Playing cards
  • Bookmarks
  • Stickers
  • Stencils
Thanks so much friends, for reading through this and for stepping into our shoes and our little boy's shoes for a moment.  Even if you don't do a teal pumpkin this year, I still just appreciate you considering and listening to our story.  The more people who know and are aware, the better.

Also, if you could send up a prayer for our little guy this Wednesday as he undergoes his fourth endosocopy, it would mean a lot to us.

Thanks friends. :)

Sunday, August 30, 2015

Recipe: Breakfast Sausage Patties {DHwRF, AIP}

I've found that in the mornings, it's really important to have some breakfast items that are quick grab-n-go. One healthy way I've managed to do this is by making a big batch of breakfast sausage patties on the weekends. I then keep the patties in a container in the fridge, and every morning I grab a couple, heat them in the microwave, then eat them in the car on my way to work. I also give each of our kids one of these each morning as part of their breakfast so that I know they're starting their days with some healthy protein.

The recipe I use is a personal modification of several recipes I've seen online or in cookbooks. It is AIP-compliant and also has a DHwRF-compliant option. Here it is below if you'd like to try it. :)



Breakfast Sausage Patties {DHwRF, AIP}

Ingredients:
  • 2 lbs ground meat (I use turkey, you could also use pork)
  • 2 tsp salt (or more to taste, I like mine a little saltier)
  • 3 tsp dried rosemary
  • 2 tsp dried thyme
  • 1 tsp dried sage
  • optional: maple syrup (leave out for DHwRF) or dried fruit (I always add some maple syrup now as I love the sweetness it adds)
Instructions:
  1. Combine all ingredients together in a bowl.
  2. Mix together well with hands until all ingredients are evenly dispersed.
  3. Cover and let sit in refrigerator for at least 15 minutes, up to overnight, to let flavors set.
  4. Preheat oven to 475 degrees.
  5. Cover baking sheet with parchment paper.
  6. Make patties out of meat mixture and set on parchment paper. If meat sticks to hands, rinse hands in water and the water will help prevent stickiness.
  7. Bake patties in oven for 10 minutes. Flip, then bake for another 10 minutes. Then set broiler on high for 2-3 minutes to brown tops.
  8. When fully cooked, remove from oven, let cool, then place in glass container in refrigerator. If you don't think you'll eat them all within a week, store some of them in the freezer.
You could also try adding other veggies or flavors, such as some onion or some spinach. Spinach is the next thing I want to try to sneak some extra nutrients into my kids. ;)

Enjoy!

Friday, August 14, 2015

Cyclic Vomiting? FPIES? Whatever it is, we don't like it.

I’ve briefly mentioned in past posts that our son Greyden has severe vomiting episodes with no known cause. These are sad, stressful, and sometimes scary times for us as parents. We feel hopeless as we watch our little boy struggle through extreme pain and nausea, inconsolable and white as a sheet. As quickly as the episodes begin, they end, and suddenly Grey is back to normal, happy, energetic, and hungry. It’s all so crazy and bizarre.

Greyden experienced his fifth documented episode this past Tuesday. Every time we have another episode, I find myself on a frantic hunt for answers for the next many days. I scour the internet and forums, try to talk to anyone I can who I think might have some small bit of advise on how to protect our son. I just want to help my little boy, to stop these horrible episodes. The pediatric GI says Greyden has cyclic vomiting syndrome, which is a disease that is not clearly understood, but it's believed that basically the brain misfires and sends your digestive tract into a seizure or migraine of sorts. Our allergist has concerns that it may be an FPIES reaction, which is a severe reaction to ingested food proteins. The naturopath leans more toward a food reaction, also. After doing my own reading and research, I lean more toward it being cyclic vomiting syndrome. Clearly, there's no straight answer.

The episode this past Tuesday morning started like every other episode Greyden has had.  They're incredibly predictable.  I had checked on him in his room as I'd headed downstairs in the early morning, and saw him curled up in a ball on his bed. Maybe that should have been my first sign, since he typically lays spread out while he's sleeping.  Shortly after, around 7 am, I heard his distressed wails at the top of the stairs.  “Mommy it hurts!! It hurts!!” I ran upstairs to find him holding his abdomen, crying.  I scooped him into my arms, ran into the bathroom, and flipped on the light to check his lips. Sure enough, they were losing their color. That is always our sign; his lips turn white. I took Greyden quickly into our bedroom where Dave was still sleeping, and tried to wake him as gently as possible, saying, “Dave, I think he’s having another episode.” Dave immediately climbed out of bed and we started our regimen.

We gathered a bucket and towels, went downstairs, and I held Greyden and tried to comfort him. We got him a cup of water, which he always requests. He was completely washed out at this point and kept moving in my arms, unable to get comfortable, whimpering and putting his hand over his abdomen and crying, “It hurts!!” After a short while, the pain seemed to get worse, and Greyden pointed to his stomach and said, “I can’t move!” Dave took him and held him at that point, and then suddenly Greyden started shaking. I’d never seen him do this before, and panic rushed through me. Dave and I quickly discussed if we might need to take him for medical help, and so I ran upstairs to put on enough clothes to head out the door. As I went past the playroom, I quickly glanced at Krew, who was happily playing with his Legos on the floor and was completely unaware of anything happening. I wondered if I should get him dressed or call someone quickly to come stay with him. I did neither. I ran back downstairs, where Greyden was still having shaking episodes. Then, praise the Lord, the shaking stopped. Greyden’s body relaxed, and I watched as his eyes rolled a bit and his eyelids closed. I’d seen this before with past episodes and knew that he was ok. He often did this. I watched his chest against Dave’s to make sure it was moving, watched the rhythm of his breath. I never know if he’s truly sleeping during these moments or if the pain is so severe that he is basically passing out.

Dave took Greyden out on the back porch and sat with him, I assume both for the fresh air and to prepare for the vomit we knew was likely coming. As we sat outside, I took this video for documentation (don’t worry, there's no vomit).


As you can see, all the blood had drained from his body. He was white as a ghost, but had a summer tan so instead he just looked orange all over. You can’t tell where his lips meet his face because it’s all the same color.


We sat outside for quite a while, just waiting. When we felt fairly certain that the worst was over and we weren’t going to need medical help, I quickly got Krew dressed and took him to our sitter’s house, where they were already expecting him for the day, although not for another hour and a half. I couldn’t help but start crying as I explained to Eileen why Krew was there earlier than normal, and why Greyden wasn’t with him. Fortunately, Eileen knows this scenario well by now too, and gave me a big hug and didn’t ask many questions.

When I got back home, Greyden was still lethargic and washed out, but had not yet vomited. He was asking for water, as he always does during his episodes. The water usually causes him to vomit, but it actually seems better that way because for a short while after vomiting he seems to be in less distress. So we gave him all the water he wanted. Sure enough, within 15 or 20 minutes he had his first major vomit. It was almost all water, as we expected. We wiped him and everything else in his proximity down with towels and changed him into clean underwear, then we covered the couch in towels and laid him down with a sippy cup of water and the iPad. A little bit of color had come back to his face and he was able to talk to us a little. He drank water and quietly watched the iPad when he was able to find a comfortable position. Twenty minutes later, all his color washed away again and he began requesting that we would hold him. We knew another round of vomiting was coming. Before long, there it was. This time we managed to get some of it into the bucket.


During one of his calm times, when the pain subsided enough for him to rest by himself.

We followed this pattern until 10am.  Intense pain and nausea, vomit, a little respite with some color returning to his face, water, pain and nausea comes back, he turns white, he vomits again.  With past episodes, the cycle has lasted until 11am or noon. This time, although it seemed to start out more severe than normal, it ended more quickly than we expected.  At 10 am he vomited one last time, and afterward requested some juice and apples. When he starts asking for non-water beverages and food, we always know that his episode is passing. His color continued to come back at this point, and before long he fell asleep sitting up on the couch, wrapped in a towel. He’d only had one sip of his juice and hadn’t touched his apples, but I felt confident that the episode was over. Dave felt confident about it too and decided to shower and head into the office for work.


(Yes, there's a mattress in our living room. The boys use it as a trampoline.)

I worked from the kitchen table until Greyden awoke an hour and a half later. As I expected, he acted as if nothing had ever been wrong. He bounced up from the couch, full of energy and color. He started chatting my ear off, requested food, and begged for me to let him help make his plate. Our little boy was back. I fed him, dressed him, and took him to the sitter’s for the rest of the day. She reported later that he was perfectly normal and energetic the whole afternoon.


Helping me with the mail right after he woke up.


Cutest weirdest face I've ever seen him make. Also right after waking up.

I share this story for several reasons. First, there’s always the chance that someone out there will read this and be able to offer us some bit of advice. We are searching for answers and so desperately want to know how to help and protect our little boy. Whether it's cyclic vomiting syndrome or FPIES, both of them have triggers.  If we could figure out these triggers, maybe we could avoid some of these episodes.  Second, it is good for my own documentation. The more details we can remember for solving this mystery, the better. Third, I think our family and friends want to understand what we mean when we say, “Greyden is having a vomiting episode.” They want to know how to support us and pray for us. And we cherish all support and prayers. This disease or food reaction or whatever it is is downright horrible. And it breaks my heart to know that there are kids out there who go through this far more often than Greyden. He only has episodes every two to six months. Other kids or adults with cylic vomiting or FPIES have them every month or every week. They can last for entire 24 hours periods or longer, and sometimes the kids or adults can end up in the hospital from complications.  It can be devastating.

For now, our little boy is through his latest episode and is back to his happy, bouncy self.  In a week or so, the intensity of this past Tuesday will fade from my thoughts, and for a while I'll rarely think about his episodes.  I usually forget to even wonder when the next one will occur.  But, as is always the case, the next one will inevitably come.  And then we'll just start all over.  But with every episode he has, we are able to collect a little more information, a few more clues.  So maybe, hopefully, eventually we'll figure this thing out.


Same kid, same day, just hours apart.