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Friday, March 8, 2013

Change

I was eating a Panda Express recently, (terribly unhealthy, and impossible to bolus for... I know), when my fortune caught my attention.
I know it's a silly, mass produced piece of paper, but the winds of change are definitely a blowin'. Maybe it really was meant for me. Ha!

I mentioned a few posts back that my husband works in the healthcare industry, and that medicare/healthcare reform was doing in his company... Well, it is all but finished. Our beautiful little town will not be the same without it's largest employer. Sad.

I am grateful beyond words that he has found a new employer and great job. I only wish it could've been a little closer. We are about to tackle a 500 mile relocation to Eastern, New Mexico. I actually spent much of my childhood in NW New Mexico, so the location doesn't bother me, too much...
 (This is a gross misrepresentation of our new city, but it's funny right? These are actual pics from googling both cities. There will be culture shock involved!)

My real concerns are about Emma and her healthcare, which is primarily in Houston, TX. We are about to rack up some serious frequent flyer miles! Ouch. We may eventually move her specialist care back to Denver, but until the genetic research is done there is no way we will leave TCH, and besides, we will have to fly out either way. We will figure it out.

There are actually some wonderful perks about the new location. We will be closer to some of the kids grandparents and much closer to the mountains! I see many, many mountain adventures in our future. My happy place! My son is also thrilled to be close to Texas Tech, where he dreams of playing football in college. My father-in-law bought him season tickets to the games this fall to help make the move a little sweeter. He rocks.


Our move will mean packing up my little sewing studio for a while. Once we are settled in our new home and the kids have transitioned into their new schools I'm sure I will want to sew again. I just may not want to sew as much as I have been! I LOVE making pump pouches for all my sweeties, it is SO rewarding. I have never had a job that was so important to people. The emails I get bring me to tears every single week. I share a bond with my customers because I KNOW what they are dealing with, I really get it. I know that anything that helps "make it better" matters, a lot. Diabetes can be so hard. Starting your two year-old on an insulin pump is not OK! Transitioning into middle school with a medical device on your waist is not always "cool!" It's not something our kids should have to deal with. I have been truly blessed to make even the tiniest impact on how they feel about wearing a pump or sensor. It matters to me, a lot.




I am happy to report that I have simmered down from my previous post and Emma is doing well. She is no longer spilling protein, which is a HUGE, massive unexplainable relief!! We are doing some new things to help strengthen her bones and hoping for a good report when she has a bone scan this summer. Like everything in her life it's complicated. We have to be careful about giving calcium because of her kidneys, we have to limit dairy because of her allergies, we have to coat in her in sunblock because of her Lupus-like sun issues, we haven't been able to stop her inhaled steroids which may be complicating things... Oh my. She's a mess! An adorable, amazing, sweet and sassy little mess. She has a tough road ahead, no doubt, but she is going to be OK. I'm going to make sure of that. I'm looking forward to spending a lot more time with my amazing kids in the coming months.

On to the next phase....

My best,
Amy

Monday, February 18, 2013

Boiling over



I feel like a big ole pot of stew, full to the top with so many things I'm trying to keep under my lid. Just simmering all the time...  then someone tosses in -one more little thing- or turns up the heat just enough, and just like THAT it's boiling over everywhere. One big hot mess of CRAZY, stressed out mama!

My daughter's health terrifies me, always. When she's doing well I can keep all those fears and worries hidden, simmering. Things are going better than expected, and I know "it could be worse." I'm so grateful that she's doing OK in spite of everything that's wrong with her little body. I try to stay calm and distracted and hopeful, and usually I can. She looks so healthy, acts so normal, that she makes it easy to get lost in denial. Then one night I see 4+ protein on her urine dipstick and I seriously lose my shit.

All the fear and the anxiety of the last eight years can no longer be contained. Every moment of frustration and helplessness, every night of sleep deprivation, every clueless doctor, every ugly thing that she's endured rises to the top. And every hope that maybe she's going to be fine... dashed with one urine covered, dark green square. Oh my God...

"Off to bed sweet girl, mommy's about to become hysterical, and drink WAY too much wine, cry and pray that this isn't "it" because she can not deal with "it." Not ever." Obviously I would never really say that to her, but I did lock myself in the guest room and sob hysterically. Just like that.    I did manage to calm myself, at the expense of my liver, and scour the images of her on dialysis from my grey matter before I drifted off to sleep. Good times.

It's OK, she's been sick. Kids with nephropathy can spill large protein when they're sick. Especially if they've missed a few doses of their meds. Says her nephrologist. It probably doesn't mean her kidneys are worse. Just because it hasn't happened in more than three years doesn't necessarily mean that the damage has progressed. This is probably not the beginning of the end. Take a deep breath. Simmer down.

The protein dropped dramatically over the next few days, but in that moment, in that sudden overwhelming fear, I could not keep a lid on it.

Meanwhile... her feet are not OK. She walks like an old lady in the morning and runs like a special Olympian in the afternoon. Why? There are no signs of inflammation in her feet "on exam" according to her rheumatologist. Her arthritis doesn't act like classic RA. No swelling. No answers. What the hell is wrong with her feet? He PE teacher recently asked for a PT consult because her "gait" has gotten so bad. She has pain when she runs, always. She's been stiff every single morning since she was 2 years-old. WHY?!

So we get an x-ray "to evaluate joint damage from JIA" and another doctor call, uhm... she has "osteopenia." What? "Low bone density." It's not as bad as osteoperosis, yet, but it's not good, and not -at all- normal for a child. Ab-freaking-normal! One more thing. One more ingredient to add to this stew of crazy health problems that no one has an answer for.

WHY? I asked. " We don't know why." They answer... as usual. Maybe from her years of arthritis, maybe from her systemic AI disease process or maybe her GI issues don't allow her to absorb vitamin D and calcium.  And... it may or may not be causing the problems she's having with her feet... just FYI.

Boiling the eff over. Everywhere. That's all it took.

I really try not to focus on the recipe for disaster we are cooking here, but sometimes, like NOW,  it makes me a little bit crazy.

Insulin dependent diabetes, arthritis, hypothyroidism, asthma, kidney disease, allergies, GI issues all brewing in a broth of auto-immune crap that closely resembles SLE (Lupus). Do I even have to say that this pot is FULL? That her little body doesn't need one more thing. That her mommy can't handle one more thing! Not one more little tiny freaking carrot can fit into this pot!

Weak bones? Seriously?

Why is my 8 year-old daughter dealing with health issues that belong to an 80 year-old?  And why can't anyone do anything about it? Story-Of-Her-Life!

I told the rheumatolgist not to ever call me again with abnormal results and then say "we don't know why and we aren't sure what to do about it." Yes, I really did. Why do we keep testing her for things if the results don't matter... because there is nothing we can do about it anyway. So dammed frustrating! I have clawed my way to top physicians in every field of medicine and still.... "Autoimmunity is very complicated and poorly understood." That's all I get. Prognosis? "Complicated and uncertain."    Why?

I'm simmering down. Really. I've been overwhelmed more than once in the past eight years and I know that it doesn't help to be ANGRY and sad. I know that I'm supposed to handle each new challenge with grace and a smile...  I just haven't felt like it. It's been a little messy. I know I have to clean it up and get past it, again. We have a LONG road ahead of us and we are no where near the worst of it. Actually, we are very likely in the best of it. She is young and strong and resilient now. This is likely as good as her health will ever be. That is hard to swallow, really hard.

Will I live my entire life cycling through endless phases of grief for her? Fearing that the next illness will send her spiraling into an AI flare that results in kidney failure, which will be so insanely complicated by her other mess of health problems that she will never survive it? Probably. There "it" is. The thing I normally keep under my lid because it's too ugly to say. She may appear to be fine on the outside, but what's brewing beneath the surface is truly terrifying. Sure, I can smile and put on my pearls and tell you it's "OK," but it's NOT OK. Just turn up the heat a little and you'll see.

___________________________________________________________

The geneticists at Baylor have finally finished sequencing her exome (it took nearly a year) and are now in the process of sequencing the rest of our family. They are trying to make sense of her many gene mutations and see if any of them hold answers to her "novel" disease process. I'm grateful that they are trying, but they have told me repeatedly that it will probably never change anything for her, and that auto-immunity is all but impossible to unravel. But I still hope. She is so strong, in-spite of it all. Maybe because of it all? She's amazing. I will never stop fighting for the best version of normal that I can give her, never. She's going to be OK. It's time to fix my makeup, put on a smile and adjust to a little more heat. I can take it, I just really, really wish she didn't have to.