November is Pulmonary Hypertension Awareness Month! + Fundraising Partnership with LuLaRoe clothing!

If you could meet her, she’s the smiliest, happiest child you’d ever meet. She’d wave hello and blow kisses goodbye. She is our smiley Kylie-bear. She doesn’t look sick, but inside her, she has a rare, horrible, and terminal disease called Pulmonary Hypertension (PH). As November is national PH awareness month, we’re honored to share Kylie’s story with you.

Her journey to diagnosis started very early with a miraculous and kind of rare find. When Suzanne was pregnant and in her third trimester, the doctor told us Kylie’s heart was pumping akin to a jellyfish instead of a strong in and out pulse. After that visit, we sent out an email to 300 people with a cry called #PlanA that she would be ok. Our prayers were answered: she came into this world full of joy.

But the pressures in her lungs were too high, and they weren’t lowering as they should. The doctors spent the next 8 months ruling out heart and lung disease, structural abnormalities, and genetic problems. After undergoing a heart catheterization and a CAT scan, she was diagnosed with Idiopathic Pulmonary Arterial Hypertension: for an unknown reason, the arteries that run blood from her heart into her lungs for oxygen are narrowed. This causes extremely high blood pressure in those arteries and causes her heart to work harder to push the blood through. It’s like she’s running a marathon all the time. The end result of this disease is right heart failure and death because the heart has pumped so hard for so long that it eventually gives out. Thankfully, there are 14 approved drugs that force the arteries open to ease the strain on the heart, but like most drugs, nothing is FDA-approved for peds. Doctors use them anyway, hoping for few side effects in their tiny little bodies. And the drugs do not cure the disease, they only slow its progression. If pulmonary hypertension is left untreated, life expectancy can be as short as 2.8 years. The journey to find the right treatment is full of trial and error and uncertainty. We knew we needed help.

And seven months after the diagnosis, we found it in The Pulmonary Hypertension Association (PHA), which became our PHamily. We met our first other PH patient. We went to our first PH conference and met other PH kids and their families. We found hope and support. We became fighters for our PHighter. In January, we will be making our first trip to see a pediatric PH specialist and we can’t wait! Currently, there are only 7 hospitals in the US that have pediatric pulmonary specialists; seven, for all children under the age of 18. In concert with these facilities, the PHA promotes awareness among physicians, which in the case of a rare disease is key to promoting to early detection. They also help fund research in hope of someday finding a cure.

I love imagery. The ribbon color for PH is periwinkle because it is the color the lips turn when deprived of oxygen. They call PH patients medical zebras. It comes from an analogy that medical students are taught: “When you hear the sound of hooves, think horses, not zebras.” And most of the time diagnoses are common, like horses, but there are those one in a million -- the zebras. And the community that fights this disease has taken that those facts that can overwhelm us with despair and turn them into beautiful things like periwinkle nail polish and blue lipstick selfies. They wear zebra prints with pride.

The imagery I love to use with Kylie is my little panda bear. Still black and white like a zebra, but truly rare. Chubby cheeks and adorably cute and playful. Having a child with a disability, chronic illness, special needs, terminal disease, whatever you want to call it, has created a wellspring of hope inside of us. This disease has changed our family. We have allowed this disease to transform us into vessels of hope and love. We have become more compassionate and empathetic. Life is a gift. She is a gift to us. We been entrusted with the privilege of showing her what it looks like to live an alive life full of adventure, courage, risk, joy and dancing. She is a wellspring of life.

Moreover, taking this journey together has made us realize that we are all diseased. There are things inside of us that are so broken and sick that we are often more dead than alive. Anger will rot our souls. Sadness will swallow us whole. We have to hope. Hope empowers us; it creates beautiful things out of brokenness. Yes, we’ve been in a hospital more than we’ve wanted to. And we know harder days are ahead for her. That her future may become more complicated than taking her meds like you would take cough syrup. She may have an IV feeding meds into her bloodstream, or a subcutaneous pump. She will probably have days where she doesn’t have energy to get out of bed or walk from the car to school. It would be so easy to be angry or judgmental about it, but that doesn’t help her or us.

What helps is hope and love. We have discovered life is not meant to be lived alone. We have found shoulders to cry on, hands to help carry us, hearts that beat with joy and life enough for dozens.

So you may never meet Kylie, but allow knowing her story start to change you. That you can become more alive and full of hope and love. That you may be aware of your own brokenness and the brokenness of those around you; those in pain and struggling. Because disease wants us in bed. Hope pulls us up off our knees. Disease wants us to succumb to despair, but hope presses us to explore the possibilities. Disease wants us to be lonely. Hope drives us to community. Disease wants us to be selfish and pity ourselves. Hope calls us to be generous.

Our good friend Jennifer Hoffman is helping us raise awareness and funds for Pulmonary Hypertension! She sells LuLaRoe clothing (link below) and is donating a portion of every online sale (and the sales from any of her "Open Shopping House" in the LuLaRoom) to the Pulmonary Hypertension Association in the hopes that one day soon Kylie-Bear and her fellow PHighters will have a brighter outlook and shine here on earth longer!! We are so grateful for Jenn and her friendship. For her generosity in organizing and partnering with us for hope in Kylie’s future. Hope for a cure. Hope for life. Hope for a more beautiful and empowered humanity.

With love,

Ethan, Suzanne, Morgan, Sean and Kylie

Check out Jenn Hoffman's LuLaRoe page and click Shop Now!

A lot of our hope has been found at Mosaic; a community that follows Jesus and His teachings to live by faith, to be known by love, and be to a voice of hope.

PH Conference

The PHA conference was three months ago, but I'm finally finding a few moments to write about it. It was amazing!

Here are some of our highlights!

We met a bunch of families! We all come from a slightly different circumstances and entrances into this family, but we are all here for each other to share our experiences, hope, frustrations, questions, and successes.

We found out there are 7 pediatric hospitals in the US that specialize in pediatric pulmonary hypertension. There is one at Stanford and we are working on getting Kylie there. We learned that even though she is not in a dire situation, it is best to have your specialist and know your team as soon as possible since PH is a progressive disease.

We saw the possible future. Kylie could end up with an intravenous line delivering medication straight into her blood stream or a subcutaneous line delivering the medication into the tissue. It was great to hear from parents their experiences with both and the struggles. We are grateful that Kylie still seems a ways off from that since she is responding to oral medication. We learned that if she ends up with an IV or SubQ that showering and swimming become very difficult as the site needs to be waterproofed and is very time consuming.

But the future is so hopeful. There are so many constant improvements in technology and discoveries in medicines that the pediatric world of PH may look very different in a few years, which is incredible.

Morgan and Sean got to interact with PH kids and ask us questions in a safe space. They saw a lot of people with oxygen and pumps, kids that were very thin, and people in wheelchairs and scooters. It was a great introduction for them (still being so young) to the disease and hopefully to have greater compassion for Kylie as she grows up. And even greater compassion for people in general.

We learned PH patients overheat more easily and get more fatigued. That definitely helped us with Kylie because we keep the house fairly warm. On really warm days, I've started running the air during her nap. Right now she is normally just sleeping in a diaper. We even speculated that maybe some of the insomnia was related to just being hot since she still needs to wear her foot braces (with socks) and pajamas. Once she is in school, we will most likely have to fill out special forms to have alternative options for her if being outside will be too hot--it is southern California and August and September get quite warm and most schools eat lunch outside.

We learned that with the fatigue, since she is so young, to err on the side of caution. We laughed along with other parents as they warned us that, yes, Kylie will take advantage of it and be lazy sometimes, but as the kids grow up they become fairly good at self regulating. There is a good chance she may not be able to participate in all the activities of a regular PE class in school.

On the plus side, Kylie will qualify for a few things. She will get a Make-A-Wish when she is older. She will receive a lifetime membership to US National Parks (that takes care of family vacations for the next 15 years ;) ). She also qualifies our vehicle for handicap parking.

The conference overall was just a beautiful three days of hope and celebration. We had the lucky chance of seeing the founding women of the PH Association at breakfast and got a picture with them and Kylie. This whole association was started by 4 women around a kitchen table. Three of them had PH and realized they needed to find others like them and help each other get the care and support they need.

And we are the grateful beneficiaries of their determination. We will benefit from having heard so many families' scary moments that they were willing to share with us. It has given me so much confidence that we can carry this responsibility and help Kylie become confident and strong.

So along with hope, confidence, and support, I came home with a long list of to-dos. We are working on getting Kylie Medicaid so she can visit Stanford. We need to create a medical binder to track Kylie's PH information so we are prepared for doctor's visits and emergencies. We need to order medical bracelets and get emergency hospital numbers. We need to apply for all the perks.

It's slowly coming along as we are balancing the rest of life and two other amazing kids. God gives us the strength we need day by day.

Kylie had her most recent appointment at the end of July. Her pressures are still in the upper 40s so we are working at titrating her dose from 5ml three times a day to 7ml three times a day over August and September. We will go back at the end of September. Hopefully by then we will have her Medicaid in place and can book an appointment at Stanford for October.

We always are so grateful for everyone who prays for our family and checks in to see how we're doing.

We're aware that she's rare!

Ethan's Mom flew in to help watch Kylie during the conference because she was too young to check in to childcare. Thank you Mom!

#phaconference

Staying cool in the hot Dallas heat

Two of the four founding PHA women

Empowered by Hope!

The conference we are attended is through the PH Association.

Surge

There's been a lot going on lately in life. And there always will be. But one of the biggest changes is Kylie is walking!! And she's 6 weeks on her medication.

And somehow the coming together of her walking and now beginning medication gave me great comfort. I had often explained to people when we were trying alternative treatments that if there was any time to try, it was this season because she's not extremely active or walking. And it's as if God has gently hugged me and said, "You did well. You trusted me and explored those options so that you can embrace this next phase with full confidence." And he's planted a peace is me that I have no shame. I don't fear the "told you so's" (not that anyone has said that besides my internal self-deprecation - which has become much quieter these days, Praise Jesus). And we are a stronger, healthier, more aware, understanding and compassionate family for the journey.

So, to back up and recap: in the middle of April, after the meeting with the head of cardiology, he and Kylie's doctored agreed on a dosage and we picked up Kylie's medication. She's on sildenafil. Here is a brief scientific explanation of how it works for those curious:

"The increased pulmonary artery (PA) pressure found in PAH is due to disturbances in key vascular mediator pathways including relative deficiencies of vasodilators such as nitric oxide (NO) and prostacyclin, as well as exaggerated production of vasoconstrictors such as endothelin and thromboxanes.  

     Sildenafil is a selective Phosphodiesterase-5 inhibitor that has been reported to be a potent pulmonary vasodilator. Sildenafil selectively inhibits phosphodiesterase 5 (PDE5 is abundant in pulmonary tissue) which leads to stabilization of cyclic guanosine monophosphate (cGMP).  cGMP is a second messenger of nitric oxide (NO). Stabilization of cGMP results in increasing nitric oxide (NO) at the tissue level leading to pulmonary vessel vasodilatation.^"
(link to article here)

We were told that the most common side effects are flushing, headaches, sensitivity to light, and diarrhea. Luckily she didn't seem to display any of those things.

And just because I need to laugh in all this, I wanted to share a fun story. Mom's make completely senseless random decisions sometimes. Ten days into her medication I decided to test her allergies of tomatoes, paprika, and black pepper...with Little Cesar's pepperoni pizza. They used to give her severe diaper rash and open sores. Well, it wasn't really a completed experiment because she threw it all up 3 hours later. And then she threw up lunch. And then she spiked a fever...and got a new tooth. So now I've quadrupled my confusion: is it meds? Is it food reaction? Is it illness? Is it just teething? Awesome, way to go, Mom. Looking back, I still think illness, but who really knows?

What I did notice more of a pattern in was that she is no longer sleeping as long or as well. I chalked it up to a developmental thing since she just started walking that maybe she's regressing into an attachment phase. But I just read one study that listed neurological side effects including insomnia and raised body temperature. It's something I'm working at being more aware of to discuss at our next appointment in July.

But before our next appointment, We're going to Dallas! We are attending a large Pulmonary Hypertension Conference in Dallas this June. There, we will hear researchers and doctors share their latest findings and patients talking about living with PH. We will also be able to meet other families with PH children.

I chuckle to think we're going to Dallas to find hope and community when I'm enveloped by it here at home at Mosaic. I think of it a little like Paul and his travels to the early churches. Driven by hope, but each community is different and offers unique things. And the hope that will spring from that room--a room where you walk in and everyone just gets it--I look forward to with great anticipation. God is always in the business of expansion because as humans we have a limited capacity. I love my tribe and wouldn't trade them, but I'm so excited at the idea of meeting people with a specific kind of hope for PHighters, PHamilies, and someday a cure.

But to send a family of 5 to a conference costs money; a lot of money we don't have. Ethan and I agreed that we would fund raise the money to go. I worry about a lot of things like finding parking spots, making people wait for me, that my son might get hit by a car, or that Kylie may die some day. But I never doubted that God would provide for us in this moment. I applied for a scholarship and got it! My travel, hotel, and conference fee is covered! So I estimated the rest that we would need to raise. And of course I estimated bare minimum, because God we just need to get there. I mean why would I ask for luxuries when it's our friends and family needing to sacrifice for us.

But God is showering us with love and teaching me how He is a generous God. He loves to give gifts to his children. We have received the amount in my tiny prayer almost twice over! Every time someone gives, I become overwhelmed with tears. Grateful and humbled.

I came to this thought once in the middle of my tears. It is belief in the character of one of us that moves someone to give. Whether it's Ethan's love and devotion to us, or Kylie's joyful smiley spirit, or our parents' years of faithfulness, or my upside down crazy beautiful life, it's belief in who we are that compels people. And it leaves me confused, humbled, speechless, and a little dumbfounded. Because who am I, God?

So many people believe that we should be there. We can accomplish so much together. I feel like we are going to be riding a tidal swell as we go to this conference.

Her disease is not a punishment. It is just an extended trial that in the end we may receive the crown of life. "We also glory in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not put us to shame, because God's love has been poured out into our hearts through the Holy Spirit, who has been given to us."

We have always prayed for Kylie's healing and it's hard to have hoped and not had it come through when you wanted it to. It's hard when you cry out for God move but instead He changes you and calls you to move with Him.  God constantly reminds me that He is her lifeblood, and it is Him who gives her breath life. And I cannot add a minute to her life that God does not have planned for her.

And some of you may be curious about the extra money. We are going to use some of the money to let the trip breathe a little. Like renting a car instead of taking shuttles to and from the airport. But the rest we want to donate to PH research to further making hope reality in finding a cure someday.

The post got a little long, but like I said, a lot has been going on. But we will surge with confidence wherever God will take us and our story. Love to you all!

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

The conference we are attending is through the PH Association.

She is Heard - Self Worth

My friend Jessica, recently called me to give my very first talk as part of her She is Heard movement. And I like to be prepared, so I wrote it out. It was to a dinner table of nine amazing women on the theme of beauty and they all shared so many wonderful pieces of wisdom that night. I was truly honored to be a part. Since I had already done the leg work, and didn't die upon giving my talk, I thought I'd post it here. Enjoy!

I'm kind of an extremist. Not the adrenaline junkie, jump off of cliffs or kayak down rivers type of person. I'm more of an emotional pendulum. An all or nothing personality. And that's a really good thing in some things. Jesus...he's either everything to you or nothing. Marriage...committed or don't bother. Drugs...don't do them!

But it's not such a great thing with your self worth. If you do you're either all that and a bag of chips, rather arrogant. Or you're lower than the ants and worth nothing. I have a degree in the latter. A proficient self-depricator. And that has been a big part of my current journey learning about self-worth.

When my self-worth comes under attack and I allow shame to overcome me, I try to protect myself through judging and blaming. Most of that judging and blaming is directed internally at myself. That internal wounding happens in the things we're afraid of, the things we fear. Where it strikes me deepest is in my fear of loneliness.

I remember being in elementary school and climbing to the top of this metal ladder structure (singing The Little Mermaid's "Part of Your World") and just wondering "Why don't I fit in?" "Why am I so different from everyone else?" And shame uses my self-deprication to tell me that my loneliness is my fault.

That I'm not enough. I'm not extroverted enough. Not adventurous enough. Not involved in enough. Or I'm too much. I'm too emotional. Too deep. Too quiet. Too granola.

And fear perpetuates a fear-reality that becomes a twisted truth-lie: I'm destined to be alone.

But often the things we're afraid of drive us to beautiful things when we put that fear in the hands of God. Because God said I have worth. And He and I fought about it. Because if I have worth and are worthy of love, I'm worthy of worth and love from those He created and loves and gave worth.

And we fought more about it. And I landed on two things which became evident after I found myself serving on a small hospitality team at my church, Mosaic.

The first is we need to have a positive perspective. In the hospitality kitchen, I'm the only mom (98% of the time). From my self-depricating standpoint, I'm a lone wolf. I'm not like anyone else. I'm stretched too thin with commitments to my family or not available enough. I'm not young enough. This isn't a team for moms. But a positive perspective says that I have something that would be lacking if I weren't there. There's just something comforting about having Mom in the kitchen. Regardless of if she can cook (which I'm decent at doing), but Mom can just bring a grounded peace in the kitchen space.

The second is that we need to step into courage. My default when I'm afraid or shaming myself is to shut down, withdraw, run away and be silent. So my courage is to stay put, to open my ears to listen and my eyes to be observant. There were weeks where I didn't want to drive there, or maybe I'll just slip out to the bathroom, or I'll just focus in on my task and be lost in the hustle. And those weeks, showing up was my courageous act. And at the end of the day, it's enough.

When I close my eyes and step into courage with a positive perspective God silences the fear and replaces it with hope. And hope has given birth to love. Love for myself and for others. When you have the courage to embrace the you God believed you to be when He created you and the positive perspective to start seeing your uniqueness as strengths, you cultivate a knowing of your self-worth.

The book of Ephesians says we are His masterpiece. An artist loves His masterpieces. And every masterpiece is unique. So when you have a knowing of your self-worth, work at becoming aware of those things that you're really good at, or that make you different from everyone else. Like for me: I'm really good at hugging. It's a strange compliment I get a lot. But it made me stop and think that not everyone has little ones that run and hug them every morning. Or wake up next to someone who will hug them. But in that kitchen, there is always someone who will embrace them with love and worth.

And it's amazing how you start to see how God uses those uniqunesses to fill needs and create beautiful things.

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Bring it all to Peace

I've never been at so much peace before, during, and after an appointment as I was today. I chalk it up to two things really. The first is the power of prayer. I was so touched by all the people who continue to pray not only for Kylie, but for me (and the rest of our family). When someone has a disease it affects the whole family and everyone has to adapt to some degree. For those familiar with Strengths Finder, Adaptability is not in my top 5 or probably even in my top 20 strengths. But together, we are learning how to make our family work. And my own prayers and confessions to God have become a daily practice of just releasing the weight of a burden I have no control over and allow my brain to focus on the pieces of our life that I can take action on.

The second things is self care. It's a phrase that's been around and it's one I've pushed aside and struggled with all my life. But I've embraced it recently because it's imperative for my survival. The list is always so simply put, but the execution takes so much discipline. Eat well, No sugar, Sleep, Play, Pray, etc. I've been working with our nutritionist Ellen this past winter on addressing a chronic stabbing pain in my side that I've had for over a year. (My kids and I affectionately call them "the roars"). A lot of it we've linked to liver, adrenal, and stress problems. When I'm on a stricter paleo diet, the more I've been able to manage stress and the less pain I'm in. The other part of self care is people for me. I can't work through my stuff with a 5 year old. Being a participatory voice in a community is hard for me; I know it will get easier the more I do it.

Anyway, so prayer and self care helped prepare me a lot for today. I did shed a few tears on the way to the hospital thinking of the most likely outcome that we would leave with a bottle of medicine. But I wasn't afraid. I knew it would be hard, but I wasn't afraid. I could feel the strength inside myself and it was a beautiful feeling. God brought to mind Phil 4:13, "I can do all things through Christ who strengthens me" which is literally when I find myself in a situation, I am actively being made stronger through the experience when I am connected with God.

We heard good things at the appointment: her oxygen levels are great, her height and weight are great, her heart function is great, still not displaying any symptoms (which keeps her at a class I).

But, her pressure levels are still between 73-85 (a normal person even working out shouldn't be above 40). Even though the Dr. added "rock steady", it's always deflating to hear. Between December and now we had tried different supplements and an essential oil regimen that all had vasodilating properties and it still wasn't enough.

Even though I had hopes for improvement, God had been speaking to me and it's like I knew. The the heavens didn't cave, and the floor didn't give out. He is before all things, and in him all things hold together. (Col 1:17). I think it's not a coincidence God gave me those two verses and that "all things" is the same word. Each and every thing. And HE IS before all those things were. Before this journey, He was. And when I am in Him it all stays together. My raft stays together. My brain stays together. In the Hebrew the word for heart and mind are the same. My heart is together and at rest. At peace.

And then of course the Doctor throws the curve ball. About a month ago, we had made an appointment to see the head of pediatric cardiology, but it's not until the middle of April. It was for a second opinion on Kylie. Since it's so close to this appointment, the Dr. recommended we wait on the meds until we see him just in case he recommends something different. Say what!? But God's peace was even there. It was like he immediately spoke to my heart that we wouldn't be dealing with side effects as we travel this next week. And I left the office not feeling on pins and needles, not defeated, not even delayed. I have to admit it was kind of strange, but in a really good way.

So we get to repeat this whole trip in about two weeks. And I'm okay with that. We did talk through the medication if she would start it then. It will possibly take weeks or months to get her to a proper dose. We would keep titrating the medication up until they see a drop in pressure on the echo, or she gets significant enough side effects that she would need a different kind of medication. It will also mean more regular trips to the doctor at this beginning stage. So I know more of what to expect if that's the outcome next time.

She was also cleared to fly since the rest of her health is so good! Thanks all so much for your prayers.

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

Ellen is the nutritionist we see and runs Points by Ellen.

To be filled with more

It's been just over a month since our visit with the cardiologist. And the news was less than desirable. Her levels had gone from 59 to the 70/80 range; although the doctor said the elevation may have been due to the fact she was more active on the table. (It's hard to rationalize with a 14 month old that they should lay flat on the table). But the bottom line is her pressures did not go down.

That was hard. Hard to hear. Hard to swallow.

But we moved forward. We had decided whatever the outcome we would go get coffee (and whip cream for the kids) afterwards. And we did. I had a mommy playgroup to go to after the appointment. Which we did. And there my tears were embraced by a group of women who loved on my kids, changed diapers and made me tea. They hugged me until oxytocin (your brain's happiness drug) was released into my body. And that was new to me.

A therapist had told me that we need to grieve in community. I was like, "Uh, no." I'm plenty happy (or honestly, content to be sad) grieving in my car, in my bed, in my shower. And what I realized in that moment was that there is a place for grieving by yourself. But what grieving in community does is allow the grieving to have it's moment and then you feel the ability to move past and move forward more quickly. I had my emotional overload and by the end of the day I felt we could start looking at the situation logically and make some new decisions.

After taking the weekend to reflect and pray we decided to use the next 4 months before our appointment in March to get informed and seek support. When I was first told about Kylie's situation prenatally, the doctor's told me to stay off the internet. Rarely do people blog about success stories and you'll just freak yourself out. So we followed the doctor's advice.

But now we need to know more.  The doctors had given us some general information as we've visited over the past year. We're grounded enough in our reality that we want to know the ins and outs of this condition and what others are doing to combat and cope with it. There seems like a mountain of information to sift through, but in my first go, these were some key points I found:

• There are two types of PAH (pulmonary arterial hypertension). Primary PAH's cause is unknown (also called Idiopathic). Secondary is a result of another problem (like heart disease). Kylie has primary.
• Idiopathic PAH is rare with an estimated incidence of 1 in a million per year, though its numbers seem to be increasing.
• IPAH patients have an increase in Endothelin production which is what the body normally produces to cause blood vessels to tighten.
• The tight blood vessels between the heart and lungs raise the pressure in the lungs and make the right side of the heart have to work harder to push blood into the lungs. Because of this the right side of the heart is normally enlarged. You can have a right-to-left shunt where the oxygenated blood is leaking backwards into the right side of the heart because there isn't enough force to keep it flowing in the proper direction.
• Prostacyclin is normally produced in the cells of the body to dilate the blood vessels. Her production is low or not enough to combat the raised Endothelin production.
• Kylie is asymptomatic, meaning she does not display any symptoms of IPAH like fainting, dizziness, racing pulse, or chest pains. We only know she has it because an echocardiagram says she does.
• Most people with IPAH take medication to help open the blood vessels and relieve their symptoms along with making dietary and lifestyle changes.
• Allicin (a component found in garlic) seems to be widely acknowledged as a natural anti-hypertension agent.

So I'm in a state of making lists. Lists of questions to research, questions for the doctors, information lists, action step lists. Looking at my list of 7 bullet points I know I have a lot more to learn. But we're leaning in and not too proud to ask questions and ask for help. Please always feel free to send us things you read or find that could be helpful. And we just pray we find the time with two other children and regular life to give our research the time it deserves.

Kylie's nutritionists, Heewon and Ellen (Ellen is taking over Heewon's practice as she is moving out of LA), have started Kylie on the supplement Allicidin. Here is a site describing how allicin is created in garlic; I found it quite interesting. Since she takes it twice a day I laugh that I have a garlic baby, because she really does smell a little like garlic. 

 As this is the beginning of a new year, Ethan and I were trying to pick themes for the year. I told Ethan I felt a little silly and embarrassed by what I thought my theme should be...positivity. It's something that is not a default for me; I would go as far as saying I'm not very good at it either. But a vision came crashing into my brain of the pamphlets you often find at doctor's offices about horrible diseases and conditions and there always seems to be a photo of a happy family on the front. I want to be that. The family that is full of joy no matter what the circumstances. That I can be stronger than the everyday frustrations and set-backs. That I can find the positive in every situation and be grateful. To go against myself. Because, honestly, I love me a pity-party. And there just isn't time for those anymore.

So we are looking positively into 2016. A year filled with possibilities. We know that our God will not leave us where we are and so we run forward with hope that we will go amazing places this year, learn incredible things, and bring the message of Jesus where we never would have thought we'd find ourselves. We'd love for you to journey with us. We love and are grateful for all of you!

Heewon and Ellen, Kylie's nutritionists

We belong to a tribe called Mosaic that lives by faith, is known by love, and is a voice of hope.

We started doing themes several years ago after hearing a talk by our friend, Hank Fortener. People often don't keep resolutions, so instead choose a theme to frame your year around. Check out his site! He's an incredible human being.

Ellen is the nutritionist we see and runs Points by Ellen.