Wednesday, October 26, 2011

Giant Nutshell

I know that it has been awhile since my last real post. I'd like to give Patty a shout out, because even though she moved to California almost two years ago (really has it been that long???) and I'm not a great blogger, she still checks our blog and is a faithful reader.

As an explanation, I buzzed my head because of constant pressure from Evan to shave it. Buzzing ti was as close as I wanted to come. During a drive to my friend's house, I was struck with the desire. So we did it. I even had someone at church, who I don't know, ask me if it was about fashion or about my health. Seriously??? It is really neither. Within a few weeks (like two), it had grown quite a considerable amount and now I need to decide if I want to do it again or grow it back out. Honestly, I might grow it because it is slowly inching toward freezing temps here and that will be cold on my bare head :) Any thoughts?

Honestly, I haven't taken a single picture since Kyle's third birthday (the pictures of my hair Evan took) and I obviously haven't posted. I have things that I could write and plenty of pictures of events---because lets face it even when I was posting at least once a week, I wasn't keeping up. But I have no desire to take pictures. None. I took no pictures while my mom was here. I don't even think about picking up the camera. Even less than taking pictures, I don't want to blog.

Things are rolling around here. Rolling around and down a hill.

Aiden is no longer a baby, he is a toddler. Walking everywhere, communicating in grunts and points, demanding, screaming, smart and determined. He no longer rolls with the punches. He also got his first hair cut. He brings me dress ups to put on him, is obsessed with the can opener, and brings me novels off the shelf. He can take toys up and down the stairs with him and tries to get things out of his crib. He plays with the kitchen toys even more than Kyle does and brings me plates and pots of "food."

Kyle is into the why phase of life. Why does it get dark? Why is it cold? Why is that screen red? He asks what. What is his name? What is he carrying? What are we going to do then? He makes all kinds of connections. I have a dinosaur shirt. We don't have this toy at home. That is the way to mammi's house. Daddy's school is in the mountains. He is also demanding and if I don't know the answer he responds with, "NO! NO!" and repeats the question like I'll get it then. Kyle also responds like that if I don't answer his question how he wants me to. He is a never ending source of chatter. He is causing me to lose my mind. Because if it isn't done his way at his speed when he wants it, then heaven help us. I have never said the phrase, "I don't want to ask you more than once." In my whole life. God help us. Literally.

The only relief comes each day after lunch. Quiet time. In order for Aiden to get what he needs from a nap and Kyle too. Kyle watches a "show" quietly in my bed while Aiden sleeps in his crib. Kyle will fall asleep but it takes awhile of forced inactivity in a bed and lasts just 45 minutes followed by another 20 minutes of laying there until he is no longer grumpy. But he won't do quiet time without me---"Mommy come lay with me." "Mommy, put your book down (I only like to watch his kids shows once---we watch them over and over and over and over, sometimes he even has me start them over) and snuggle with me." So we snuggle and inevitably I fall asleep before he does. But he is warm and holds my hand, I stroke his leg, and the top of our heads are tilted until they touch.

We are also in the throws of struggle. Hard core, I might not survive struggle. Where you hit your knees (at least in your mind) several times an hour. This time rivals when we didn't have a car for six months, I was sick with my gallbladder and on percoset and pregnant, and Evan was working 70 hours a week and walking across town to work. Not kidding.

Medically (which is only part of it), we got a diagnosis of eosinophilic endocolitis. Both boys. No cure and no concrete treatment plan. We can try elimination diets to see if that helps but we are going to focus on (1) maintaining growth, (2) managing pain, and (3) managing inflammation and distention of the stomach. Kyle is now on a drug to help him sleep--at three. We have tried the only two appetite stimulants out there, without success. One showed not much success, the other the side effects were too severe.

On Monday, our GI doctor informed us that he is setting us up for a consultation with a surgeon for Kyle to receive a g-tube, which is a tube inserted directly into his stomach thru his abdomen so we can feed him without food having to be eaten orally. It would be for about a year until he can learn to support his growth through his own eating. The appointment is for Friday at 11:30. I'll keep you posted, maybe. It took some research and convincing to get Evan, including several calls to other physician friends. There has also been some intense aggressive backlash from family. That makes a tough situation almost intolerable--it also breeds a quick growing, loud scream of doubt.

Evan gave me a blessing, part of it that really stuck, mentioned I need to have courage to stick firm and stand up. Honestly, I have no idea if I can do it. The place to stand is like a crumbling precipice and I feel like I've been standing for months in a blizzard. My muscles feel like they just might give from sheer exhaustion.

We did one month of gluten free on top of our dairy free. And can I just praise my friend Kirsten? My hero. She is a full time mom of kids my boys' age. She is also a full time student, as is her husband. She spends 12 hours in the library at a time. And she eats a gluten free diet. She and my other friend Sarah (who has a cute chub of a one year old, amazing photography skills, a vagabond lifestyle and a full time job) were my constant text friends to answer all my questions and lead me to good decisions. Controlling the gluten in our house was simple, although we did give up pasta for a month. It was outside--at play dates, restaurants, nursery and family dinners. Several restaurants had no idea what was in their food, or only had allergy information online not in stores---in this day and age that is ridiculous! One store had great packaged gluten free options--like cookies, crackers, pretzels and chicken nuggets (a staple for Kyle), but lacked in basics like baking supplies and alternative pastas, which I had to find at another store. Then there were our regular groceries.

We finished and after a week back on gluten, I'm fairly certain Aiden needs to be on that diet. We will be doing another two weeks of gluten free for him, which I was going to postpone until after Kyle's g-tube decisions, but after several hours of painful screaming last night with no cause in sight, that will be pushed up. We'll try him off of gluten for another two week and bring him back on. If this happens again (blow out diapers at night, frequent lose stools, yeast rashes, and fussy painful crying), we'll know for sure that Aiden needs gluten free and dairy free for good. Kyle however, is fine.

So I think I caught you up in a nutshell, although not a small nutshell :) Oh P.S. The best thing in my life is my friend, Charity, posted on pinterest a link about how to keep your house clean in 15 minutes a day. I started last week and oh, holy, hannah, hallelujah . I love it and it is working. How is it that keeping my house clean--something I've never been able to do--is the only thing I am doing well now that everything else is beyond my grasp.


Mallory said...

Holly I am so amazed by you! So so amazed. Good luck standing firm it may be really hard but as the mom of your kids I think you know what is truly best for them.

Ami, Joel, and Dane said...

Wow. I was hoping that finally getting a diagnosis would at least relieve some uncertainty, but it sounds like the diagnosis you got doesn't really provide much help. You are definitely amazing to be able to handle all that on a daily basis. I wish I could help somehow.
The g-tube decision is a really difficult one. I knew a little girl about Kyle's age back in Provo who had one. I don't know anything, but it seems like you don't necessarily have one right answer and one wrong answer, it's more a decision of how you want to deal with the situation. And either way, as the mom, you have the final say because you know best and you are the one who will be dealing with it daily. So family/friends' opinions should matter very little.
I know that's easier said than done. Good luck. Heavenly Father trusted you with your beautiful children, so He has every faith that you will take good care of them, just like you always have.

Rachel & Darrin said...

You have had to go through so much lately. Having Logan go to the hospital twice helps me feel the tiniest bit of what you must be feeling. Your family will be in our prayers. Remember that you know what is best for Kyle, not others. On my birthday you asked how being a mom is and I haven't gotten the chance to answer--it's going well, some days better than others :)

Shaunel said...

Wow. Good luck Holly, and enjoy that cuddle time. The hair looks awesome :)

kirsten.brooke said...

Oh my goodness.

Just, oh my goodness.

You called me your hero Holly, but I must refuse that're the hero among us!

There are so many thoughts that swam through my head while reading your many. I feel the weight of your struggles through your post, and I wish I could give you a giant hug.

But, since I can't, I must tell you, that one of the thoughts I had while reading your post was this: hope.

Though you feel like caving and falling into a heap of defeat...don't. You are so much stronger than you are giving yourself credit for.

I will keep you in my prayers, know that you have a friend a few hours north thinking of and praying for you and your little family.

You can do this. It's hard, it's sounds so hard, but don't let your spirits sink!

Here is a quote I read earlier today that I would like to share with you in the hopes that it helps:

"The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude."
--Joseph B. Wirthlin, "Come What May, and Love It", Ensign, Nov 2008, 26–28

Lastly, I love you girl. You (and your Evan) got this. Keep us posted.

Amy said...

Wow...quite a nutshell! You are one incredible momma! You can do this!!!

sarah said...

Holly, doing a little catching up on your blog. I am so impressed that you are handling this (and everything else) even if you don't feel like you are handling it well. You are taking good care of your darling children. And I enjoyed your texts. Im glad that you possibly found at least a partial solution in the gluten free diet. It is a hassle but so much better than not being able to control things, especially when your child is in pain. I can't imagine. I have days that I wonder about Kai's gluten tolerance already. No big concerns yet, but I think he may have some of my digestive issues.

Keep on trucking and texting me, please. If there is any way I can help.