Tuesday, January 12, 2016

Updates in twenty 16

Some days are just more happy than others. Today was a two-appointment day at Seattle Children’s. We started with a lung function test…Emri’s first LFT. We are taking the results with a grain of salt, because of the fact that this was her first time, and she didn’t necessarily blow as hard as she could-but from what we gathered Emri has low lung volume. Expected??? Yes. A bummer?? Of course. There is always a little sparkle of hope in me that maybe, just maybe, one test could come back and be surprising in a pleasant sort of way---but alas, her lung volume is indeed quite a bit less than the “average” 5 year old. The lady completing Emri’s tests chalked it up to her pectus interfering with lung growth, but we will have to see what our Baltimore pulmonologist thinks of it all.

Next was the echo. This echo came 5 months after the last one, which, because of my poor scheduling abilities, is the longest stretch of time that we have had in between echos. I was watching the screen intently waiting for the aortic measurement to take place, and I saw it…3.2. According to the latest in mathematics, 3.2 is larger than 3.0. 3.0 is the last measurement I remembered Emri getting. I immediately felt the good ol’ kicked-in-the-stomach type nausea overtake me and attempted to restrain my emotions until we could hear the results from the doc. Throughout the echo, Emri continued to ask me questions about how her heart looked. She looked at the echo screen and at my face a lot. It killed me. She knows stuff now. She has been asking a lot more questions lately. What happens if her heart doesn’t look good?? Does she need “shurgery”?? What will they have to do to her if she has a “bad” heart? These kind of questions, and the concern in her face during the echo are emotionally more than I feel equipped to handle. She’s FIVE and she gets it. When she was much younger, I often imagined her much, much older asking questions and figuring “it all” out. As much I know that this is all a great opportunity to share the good news of God’s sovereignty and how we don’t need to worry about tomorrow, it is still so, so hard. I am teaching my daughter concepts that I didn’t even remotely grasp until I was 22. Because of the life Emri has been given, she will be faced with the tough stuff from an age that most kids receive the privilege of dwelling solely on what flavor and shape of birthday cake they want each year (which she also dwells on often enough).
When the doctor came in he asked all the “normal” questions. Where is Emri’s energy level at?? I always answer, “above average”. She IS the energizer bunny. Any new meds? Nope. After a few more questions, I just asked about the aorta.

“I saw a 3.2.”

“Yeah. Her aorta is big. It’s the biggest I’ve seen in a kid that age…well, I’ve seen one other kid with one that big. It’s really big.”

 Aaaaaaaaand, that folks, is why we are seen at Hopkins.
I am very, very much aware of the fact that her aorta is, in fact, big. Not only is it big, but it’s growing. We are, of course, sending the echo to Dietz to get it read by him, but we won’t get it there for another 2 weeks because we have to send it by CD. I am hoping that he doesn’t see as much change and we saw today….but it could happen. We will prayerfully await an answer.
SO that was today. I got in the car and let the tears flow. Sometimes this is SO overwhelming. But as the drive went on Brett encouraged me, as he always does, to think on the good. Emri’s new rods…AH-MAZING. Emri’s alive, energetic, and full of songs. We have put off heart “shurgery” for 5 years so far…which is great! And the best part…GOD IS SOVEREIGN…and he works for the GOOD for us that love and serve him.

I really, really try to remain focused on these things. But sometimes sadness just takes over….and I don’t think it’s necessarily a BAD sadness. It’s sadness over Emri finally beginning to understand that this life isn’t so easy. It’s a sadness over suffering. I shed tears knowing that Emri’s body is frail and doesn’t work the way it should. When the sadness becomes wrong is when I begin feeling sad for things that haven’t even occurred yet…which is actually fear. This is when I am reminded, quite often, of Philippians 4:8,

Finally, brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things.

I cannot be worrying about things that aren’t truth. Right now Emri doesn’t need heart surgery, so I don’t need to dwell on how horrifying heart surgery would be. It has been my largest challenge, by far, on this journey to not dwell on the unknown of the future. But dwelling on things that are not truth is not honorable to God. So tonight I will dwell on his promise, once again, of that day when there will be no more suffering. That’ll be the day.

As for other life happenings…oh my goodness…the drama never ends. Brett has a new job. ANC design, the business we opened last year did GREAT for the first year it was opened. THEN came the dry spell. NO WORK for weeks. In a very round-about, unmistakably God-orchestrated way, Brett got hired in Lynden at “Elements” as “Director of Architecture and Interior Design”. A GREAT job and a steady paycheck. God just continually provides and we have no reason to ever doubt that he WILL provide in our times of need. Brett is commuting to Lynden and back daily. Does this mean we are moving AGAIN??!?!?!? I DON’T KNOW. And frankly, I don’t really want to talk about it.

Homeschooling is hard. I only have one student. Her name is Emri and she is stubborn and doesn’t love sitting in one place for longer than 4 seconds. We are making progress…ever so slowly we are making progress. Emri is not missing any crayons in the box (if the "box" were to signify the "brain", and "crayons" were to play the role of "smarts"), and she gets bored rather easily. So it has been my job to balance making sure she isn’t just being lazy, not wanting to do work, and making things more fun and less monotonous. She is a great student, when motivated, and we shall see how the remainder of the year goes.

Abe is just a cool, cool kid. He also does not lack energy and Brett is anxious to get him in a soccer program come spring. Once in a while I just make him do laps around the house in an attempt to get out some of the excess energy and spare the rest of us from getting jumped on and trampled by his bursts of fun. He is FULL of amazing quotes and regardless of what it may look like at times, he LOVES his sister dearly. Emri and Abe are playing well together for longer periods of time, which is wonderful for me getting a few things done around the house…like playing with my niece (what dishes??)…which brings me to my next point of discussion.

Daniel and Steph have inhabited our living room because of a horrible mold problem they had in their quaint little cottage behind our house. Daniel is planning on addressing the mold soon, but for now I thoroughly enjoy the company of my sister and Felicity in our home. Felicity gets cuter, stronger, and more stubborn every day. She is so much fun, and the terrific part is that when she gets cranky I get to hand her off to my sister;) Ahhh, the perks of being an auntie. But really though, having them in our home has been a delight and I will miss the constant companionship and baby giggles when they move back across the driveway.

We heard from our adoption agency that South Korea has FINALLY requested our paperwork, but don’t get TOO excited-there is still anywhere from 6-11 months to wait for our court date. Our littlest man turned 2 on November 19th, has seen pictures of us and is doing well. I can’t help but think that him and Abe look like brothers. I know, I know, it’s weird…but I haven’t been the only one to notice. In addition to information on his daily bowel habits (all good by the way), his last report discussed a little about his “stubborn nature” to which I replied, “yep, he’ll fit right in!” He is just meant to be our little boy and I cannot wait to bring him home and shower you all with an irritating number of pictures. He is so darn cute.

Well, my brain is begging to cease thinking for the evening and the kids are now finished watching “Bolt” so I must now give kisses, hugs, snuggles and sippy cups to my littles. Thank you all for taking time to work through this novel and for the ongoing support you give our family. Oh! And if you didn’t get a Christmas card this year it’s because we DIDN’T DO ONE. But we still hope you had a Merry Christmas, even without our card. I refuse to not do a family picture and card this year, so you might just be getting a “Happy Valentines day” card or a “Welcome to spring” card…perhaps a “Happy summer” card….or maybe just two Christmas cards next year. But mark my words, we will get a family photo taken before 2017.

Love to you all.


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