Sunday, January 11, 2015

Where We Are Now

It’s been a couple months since my last blog post.  I’ve had to make the purposeful decision to focus my energies in places other than blogging since then. I'm in no way planning to hang up this blog completely, but we're at a time in our lives where I've had to be realistic about what I can achieve and focus my energies on the most important.  Sadly and to my disappointment, blogging does not fall into this category.

However, I did want to provide a brief update on what's going on for anyone who’s curious:

Greyden has been on a strict trial diet for the last two months to hopefully eliminate his EoE symptoms and inflammation. We’ve had to keep him off of gluten, soy, dairy, eggs, and beef. Most people’s response to this is, um, what CAN he eat? Well, he can eat meats other than beef, veggies, fruits, nuts, seeds, and gluten-free grains.  This combined with my strict diet, and it’s been an exciting ride in our kitchen to say the least.

Grey’s response to all of this has been impressive and somewhat shocking. When we tell him he can’t have something because the doctor said it will make him sick, his response has always been, “Ok.” No fits, no whines, no crying. I had a friend mention the other day that perhaps, although we weren’t aware, he really wasn’t feeling well, and so now when we tell him that foods will make him sick, he’s completely happy to avoid them if it means he won’t hurt. This hadn’t crossed my mind, but it makes sense.

He has a follow-up endoscopy this coming Wednesday to assess if the diet has healed his esophagus. Please keep him in your prayers. We are hoping he is healed so we don’t have to undergo allergy testing and further diet restrictions.

Regarding his vomiting, we have not had another vomiting episode. So the question of whether he has cyclic vomiting syndrome or if his vomiting was caused by something we’ve already tackled is a question still hanging in the air. Perhaps the vomiting was caused by the testicular issues, perhaps it was caused by the hernia they found during his surgery. Perhaps he does have cyclic vomiting syndrome but the triggers were one or more of the foods we eliminated from his diet for his EoE. If another vomiting episode never happens, we’ll never know the answer, but I’ll gladly take a life of never knowing over a life of him spending random half-days uncontrollably puking his guts out.

Otherwise, the kid is happy and spunky as ever. His only noticeable issue is that he’ll sometimes chew foods for 15 minutes and not be able to swallow them. It especially happens with meats. I’ll eventually say, “Grey, do you need to spit that out” and he’ll nod his little head and empty his mouth into my hand. I assume this is related to the EoE. Other than that, he really seems unaware that anything is different in his life, and I’m so grateful for that.

As for me, I am still on a strict elimination diet. I started it the beginning of October, and three months later I’ve only successfully added in a couple foods beyond what I started with. All other reintroductions have made me sick. However, through some testing with a GI doctor I also discovered that I had developed small intestinal bacterial overgrowth (SIBO) and fructose malabsorption. I took two weeks of antibiotics for the SIBO and am feeling much better now as long as I’m careful with my fructose consumption. Now I’m hoping to retry some foods to my diet that failed reintroduction prior to the antibiotics. We’ll see.

On another note, through this diet, all the reading I’ve been doing, and the changes I’ve seen in my own body, I’ve learned SOOOO much about nutrition and health. I seriously feel like I could do health coaching at this point. So if you have any nutrition or health-related questions, or are struggling with any special diet and need some tips, let me know. ;)

Alright that’s the very quick, super condensed version of our current health status. Dave and Krew are doing great and have no exciting health conditions to report. Ok, I take that back. Krew fell off a bed two months ago and gashed his head open on a nightstand and had to get seven staples in his head. And Dave still has some lingering headaches from a severe concussion he experienced many many months ago. And of course he’s always getting some type of injury from playing ultimate.  And about two days ago he started coming down with flu symptoms and has been basically bed-ridden the last few days.  But other than THAT they’re healthy. :)

Keep us in your prayers during this trying time in our lives, and I look forward to the day when I can once again write more regularly on this blog and reconnect with my readers. :)

God bless! See you with my next update!

Thursday, November 13, 2014

And then life got crazier.

Life. It has been a bit insane lately, friends.

We’ve in a very backward way stumbled across a lot of health issues with our littlest guy, Greyden. The last month has involved various doctors’ appointments with a urologist, a pediatric surgeon, and a pediatric GI doctor, along with a testicular ultrasound, an upper GI (x-ray), an abdominal ultrasound, testicular surgery, possible diagnosis with cyclic vomiting syndrome, an endoscopy, diagnosis of eosinophilic esophagitis (EoE), and now allergy testing and strict diet changes in the very near future.

Meanwhile, I have been undergoing a strict elimination/autoimmune diet for myself, which has drastically changed my health around but unfortunately takes a ridiculous amount of my time and energy to maintain. And holy camoly is it expensive. I am still struggling with fatigue, some GI issues, brain fog, and other autoimmune-type responses, but they are drastically lessening in intensity and frequency, so I’m grateful for that. I’m undergoing an endoscopy next week to further investigate my GI issues. I will be curious to see if I have signs of EoE, which Greyden was just diagnosed with, since it is hereditary.

All in all, we’re holding on. I am researching and reading CONSTANTLY in my free time, trying to learn about autoimmune diseases, digestive disorders, and how to turn them around through diet and lifestyle changes. My thoughts are constantly spinning and I feel like I’m back in grad school with the way my brain hurts daily. At the same time, my faith in functional medicine and the importance of diet has skyrocketed as I’ve seen their effects on my own health over the last month and have learned about numerous others who have experienced similar results. I don’t want myself or Greyden to be required to take medications for the rest of our lives, nor do I want our health to worsen. And obviously I also want to protect Krew, who so far has seemed to avoid the inheritance of my unhealthy genetics, but who knows what potentially lies in his future.

In the midst of all this, I, for the first time in my life, found myself in a situation where I was reaching out to people, uninhibitedly leaning on them, and asking for meals to be brought to us because the stress of keeping up with our lives was too much. It was a new place to be in, but it was enlightening and taught me the importance of honesty and transparency with those around us. It showed me how much people care, how they’ll lift you up in prayer and show up in unexpected ways to support you, if you only tell them your struggles. I also found myself in a new place in my relationship with God. In the days leading up to Greyden’s examinations of his abdomen, I wrestled with the realization that we had the potential for receiving very bad news. I somehow internally accepted this possibility, and yet I knew without a shadow of a doubt that God would give me the grace and strength to get through it. I cried many tears and ate very little during those days, but I also reached a new acceptance of the brokenness of this life and the sovereignty of God’s will. It was this internal peace and calm, this steadfast knowledge that whatever was coming, I would make it through with God by my side. I know that this new leap in faith for me was only one of the many “good” things that God brought through our recent and current struggles.

“And we know that in all things God works for the good of those who love him, who have been called according to his purpose.” - Romans 8:28

To finish up, I want to share an excerpt from a book I’m currently reading called “Women and Stress: Practical Ways to Manage Tension” by Jean Lush. Jean shares the story of a woman who experienced miscarriage and the woman's thoughts as she walked through her intense grief afterward. This woman’s words really touched home with me regarding my recent growth in faith through the struggles we’ve been experiencing:

“I know without a doubt that “in all things God works for the good of those who love him” (Rom 8:28). Some people may read this verse and interpret it this way: God works pain and joy, good and evil into my life for my good. Thus miscarriage, stillbirth, or any other loss is inflicted upon me by God in order to accomplish good in my life. I prefer to look at it another way. God did not afflict us with the death of our baby to work a certain “good” or growth into our lives. Rather, our lives were touched by the pain of human experience, and in the process of groping for answers and understanding, growth was produced. God’s involvement with us in that growth process gave us hope, strength, tenacity, and comfort. As we came to grips with our anger and depression and guilt, God stepped into our human weakness and lifted us out of the depths of despair. That is how God worked good into our lives during our loss.”

Amen, sister. God is by our side.  He loves us, He’s using the horrible fallenness of this world to grow us, and He’s holding us through the struggles and pain.

Friday, September 19, 2014

I am not my body.

If you’ve been reading this blog lately, you know that I was diagnosed with celiac disease three months ago and discovered that I have soy intolerance shortly after. You know it’s been a rough adjustment in terms of changing my lifestyle. If you’re a friend of mine outside the internet world, you may also know that despite valiant efforts, my health is still far from fixed. I’m still bloated all the time and almost daily battle with nausea or abdominal cramps and pain. I’m tired a LOT. I still get hit by brain fog that feels like a massive hangover. I still get smacked with anxiety and brief times of depression.

Additionally, my eyes and mouth are now dry 24/7. I can no longer wear contact lenses due to this dryness and due to new allergies I have developed in response to the deposits my tears put on the contacts. I get headaches, which are a fairly recent development. Within the last month, my hair has started falling out more than usual. Somewhat surprisingly but I guess not so much so, I had bloodwork done this week that suggests that I have another autoimmune disease beyond celiac disease. I’m headed in to see a rheumatologist for further testing sometime in the near future.

Basically, it seems that my body is falling apart. And not because something is attacking it. It is falling apart because it’s attacking itself.

This is something I’ve had a hard time grasping and accepting. It’s very disturbing to think that my body is hurting me, trying to kill me. I’ve pondered this countless times, wondered at it, struggled with it as my new reality.

And I’ve come to a new realization through this, a realization that gives me some hope and comfort. It’s this:

I am not my body.

I am me, Kara, a soul. I live in this body. Yes, I tend to identify with it and call it me, but it’s not me. I am the soul living within this vessel, this transportation device I’ve been given to drive through this life. My body is not me, and I don’t have to accept it as me. I should see it as my vehicle, a vehicle I need to care for and mend during breakdowns. It is my responsibility to maintain it, but it isn’t actually me. I have no need to get too attached to it or to take its failings as a sign of failure on my part. It is a fallible vessel made from dirt, trying to function in a broken world.

I am my soul. I am Kara, and God knows my name. I am something bigger and deeper and so much more amazing than this body. And God loves my soul, so much so that he sent His Son to die for me so I could be with Him in eternity and have hope in this life.

And although this is the one body I’ve been given for this world, and it’s not treating me so well right now, it’s not the end-all-be-all. It’s what I have now, but it’s not what I have forever. I now put my hope in heaven, my hope in that day when we’re all healed and the suffering ends and we’re all together in our resurrected bodies. In moments when I literally feel like I’m falling apart and my face is stained with tears of frustration and pain, I can look upward and know that a better day is coming. God loves me, and He’s given me far more to look forward to, even after this body fails me.

I am not my body.  Praise Him for that.

Friday, September 12, 2014

Roy Boy at 2 Years

Two years old, Greyden Roy. The wonderful, terrible twos.

You are now talking and walking and running like a little person. You play with your brother and do boy things instead of baby things. Just last week you started jumping, getting both feet off the ground. Your run is smooth and you’ve become fairly adept at going up and down the stairs, so much so that we rarely feel the need to watch you on them anymore.

You love to swing, color, play cars, play with (fake) food, run around everywhere, and copy everything your big brother does. You enjoy many of the same things as him - music, singing, dancing, and puzzles, to name a few - and I don’t know how much of it is a learned behavior from watching him vs how much of it is what you would have liked even if he weren’t around. You sing the ABCs song and recognize several letters and numbers. Your vocabulary is well developed and it makes talking with you really fun.

Your ability to communicate also makes it easier to discipline you, because I can say things such as, “If you don’t stop it, you have to go to your room until you’re ready to be nice,” and you understand what I mean. On the other hand, your communication skills also make it easier for you to be manipulative, and you’re now using every excuse under the sun to delay bedtime at night, including “I can’t lay down,” “My foot hurts,” “My eyes hurt,” “more water please,” “I can’t sleep,” “door open!”...the list keeps going.

You are very difficult to shop with, either demanding to walk on your own and then refusing to stay close by, or demanding to be held when you can very well ride in the shopping cart or walk. These ridiculous expectations you have, of course, result in discipline from me and wailing from you and a lot of stares from fellow shoppers. It is a rare day that I get through a shopping trip with you and I’m not exhausted and sweating.

You’ve started preschool on Wednesdays and Fridays and are always unhappy to go into the room but then very much enjoying yourself when I come to pick you back up. Your teacher says you are always immediately fine after I walk away, so I think you just like to put on a show when I drop you off so that I feel loved. ;)

You've now moved out of your crib and into a bed on the floor in Krew's room. At first it went great, then it went not-so-great, but after a few nights of crying it out and learning that you can't just call for me or Daddy and get out of bed any time you please, you're finally staying in your bed calmly now like you used to do your crib. (Praise the Lord, I was losing my patience - and sleep!)

You are still a very picky eater and it kinda drives me insane trying to get nutrition in you. We fall back on vitamins and “fruit” packs which are actually entirely filled with vegetables these days. (You haven't noticed yet, hehe.) To top it off, you’ve been struggling with digestive issues, and I can’t help but be paranoid that you’re going to end up with celiac disease like your momma here. We had you tested and you were negative, but I also know that the blood tests are not as sensitive in children. Right now we have you drinking almond milk instead of cow’s milk and taking a daily dose of probiotics to try to get your system back in check. Sometimes I wonder if you may be lactose intolerant - we’re still trying to figure it out. Fortunately you seem fine other than the obvious digestive systems (I’ll spare the details) and it’s not affecting your daily life or your demeanor.

Your hair is what I would consider light brown with blonde highlights. You have brown eyes with a hint of hazel in them. You are currently getting your 2-year molars which I believe are leading to some occasional fussiness. You still have some chub on your arms and legs, but your torso has completely slimmed down and you now look fairly lean. Your torso actually seems to be very long, and so oftentimes your shirts look a little small compared to your shorts. You’re in size 18-24 month shirts, 18-24 month shorts, size 6 or 7 shoes, and (shockingly) still size 3 diapers. How you fit in size 3 diapers is beyond my comprehension, but they really do still fit. We stick 4s on you at night to help hold more pee, but it’s still 3s during the day. At your 2-year appointment on July 30th, the nurse measured your length at 35 ¾ inches, but honestly think that was a little off. I think you’re more like 35 inches. So that puts you around 63rd percentile for height according to online sources. You weighed 28 lbs 4 ½ oz (52nd percentile), and your head was 19 ¾ inches (84th percentile).

You are a handful at times, resistant to discipline and completely unphased when you disappoint others. You grin at the same reprimanding words that would have sent your older brother into a fit of tears when he was your age. You are persistent when you want something and will beg, whine, cry, and tantrum until your daddy and I are about to lose our minds. On the flip side, you are an incredibly loving little boy. You will frequently come up to me and say, “Mommy….” in a sweet, loving tone and then wrap your little arms around me and just squeeze. You do the same to your daddy, and it melts our hearts. You love doing “nose-nose” (eskimo kisses) and laying your head on our shoulders. It’s super precious.

Life is so much fun with you little guy. We love you!


Saturday, August 23, 2014

Happy [Very Belated] 2nd Birthday Greyden!!

Happy belated birthday Greyden Roy!!!

Yes, I am almost a month late writing this post. You turned two years old on July 28th. It is now August 23rd. Life has simply gotten away from me and I’m struggling to keep up! On the other hand, this blog is starting to become a collection of belated and overdue posts, so maybe that helps this birthday post to fit right in with the rest. :)

Nevertheless, you had a nice 2nd birthday. We didn’t do anything super exciting, but you got to be celebrated various times with relatives and friends. You enjoyed all your gifts, although your brother tried to jump in and open 90% of them for you.

I’m going to keep this blog post short and write another longer post in a few days that will cover your life over the last couple of months. I’ll include more details and pictures in that one.

However, to sum you up at your second birthday, I’d say that you are loud, talkative, outgoing, somewhat demanding and stubborn, but also sweet and incredibly loving. You keep us on our toes, that’s for sure. You’re opposite from your brother in many ways, and the combination of the two of you sure keeps life exciting!

To finish up this [unfortunately severely belated] birthday post, here are some 2-year-old pictures of you. :)

We love you, Roy Boy!