Month: February 2013

Where in the World Have I Been?

/ kensrobin / 6 Comments

If you read this blog for the crazy kid stories or adoption info, this is not your post. If you know me and have been wondering where in the world I have been, well, this post is for you.

I got sick less than 2 weeks after coming home from Africa. Fevers of 101+ for a couple of weeks. Then the cough started. Then the cough developed into pneumonia. Then I never really recovered from the pneumonia. Then I got strep. Then I couldn’t breathe. I almost got well over Christmas break, but when the new semester started, I started seeing sick patients in the clinic. My kids were coming home from school with the 12 colds/year that most elementary kids have. The fevers came back with a vengeance, which I’ve had for over 2 weeks now. Then I got horrible flu-like symptoms. Then I got strep. Then I got a respiratory fungal infection.  Now I REALLY can’t breathe.

I have not had a single week in which I’ve been well for 6 months. I am on antibiotics, antifungals, steroids, nebulizers, nutritional supplements, and on and on and on. This is particularly vexing because steroids make fungal infections worse, but I cannot breathe without the steroids, which make the fungal infection worse. I cannot breathe well enough to have a conversation. My muscles in my chest and back HURT from trying to breathe. I feel like my face is going to explode. I can feel my pulse in my teeth.

The clinic that has seen this all go down is actually my asthma clinic. They began to wonder in December why I could not get well. Mostly because I was asking them why I couldn’t get well. Not only are they an asthma clinic, they are an immunology clinic, so this was very reasonable for me to ask. I think if you see me sick every 6 months, it’s easy to not hear the “I’ve been sick the entire six months.” My white count is always elevated but never very impressive. I feel worse than my bloodwork looks. Always.

So in December, we started testing out my immune system, and found that though I’m sick a lot, and have had pneumonia a lot, I’m not immune to all but one strain of pneumonia. So they vaccinated me against pneumonia. But meanwhile, my allergy antibodies (IgE) were very high, even in the middle of winter with nothing blooming (yet).

Currently, I am on most classes of medications known to mankind, but I still can’t get well. In the middle of the night last night, I was sleeping on the couch (sitting up) and our dog, Holly, ran in and woke up Ken and brought him to me. I was having trouble breathing. Now unfortunately, she thinks the cure for not breathing is laying on my chest, but she was right about me not breathing. Nor could I quite wake up to realize I was not breathing well. Ken got me a nebulizer and got my lungs going again, but I realized when I am relying on my dog to wake me when I’m not breathing, I may need some additional medical attention. Holly continued pawing at my chest and whining until I called Vanderbilt. And my NPs cell phone.

My NP agreed to see me this afternoon. (Praise the Lord she had given me her cell phone number.) Sure enough, I’m sick and having trouble breathing. After emergency treatment, I am now breathing well enough to still need emergency treatment. The treatment helps, but when my breathing is this bad, my best is still considered an emergency.

She went over my lab results with me, which in hindsight make a lot of sense. I have an IgG (infection fighting antibody) deficiency. I did not mount an immune response to the vaccine I got in December. This is why I cannot get well when I get sick. She noticed a pattern that when I get sick, I don’t just get a little sick. I get really sick, but my white blood cell count doesn’t respond, so it makes it look sorta like I’m not really sick. I just hover at nonwellness for a long time.

The other issue is that my IgE antibodies are elevated, which means my asthma is crazy out of control and my body treats every insult to my lungs like my lungs are trying to kill me. They are actually being fairly successful at that right now.

So we’ve decided to try immunotherapy: suppressing my IgE and giving me IgG. Because my lungs are going to kill me more than the infection, we’re going to do the IgE supression therapy first. I signed over my life today, which is apparently necessary to get this treatment. I just have to wait for insurance to approve it.

Tick. Tock. Tick. Tock. Tick. Tock.

It’s $2000/month, so I really can’t afford to just start it without them approving it. Which usually means a battle waged between a nonmedical provider behind a desk in Watchkatoochie, Wyoming versus the medical staff at Vanderbilt. I’ll still have the $5000 deductible to contend with but being disabled is a whole lot more expensive. Once the deductible is met, then I’ll be able to afford the IgG therapy, if insurance will approve that too. Let’s hope the Watchkatoochians are feeling favorably toward me this time of year.

In the mean time, I’ve switched antibiotics, antifungals, nebulizers, and increased my steroids today. I’m too sick to be in the hospital with a deficient immune system.

So that’s where I am: tucked in bed, with my nebulizer on one side, and my asthma-sniffing dog on the other. I’m thankful for a Nurse Pracitioner who wondered enough why I’m not well to actually do something about it, instead of just scratch her head and wish me well. I’m also thankful that there’s at least a proposed answer and hope that one day I may join the walking and working well again.

Congratulations Palmer!

/ kensrobin / 4 Comments

IMG_1494

Palmer brought home school awards today for being on the Principal’s list, and for being a Triple A Achiever: Academics, Attendance, and Attitude. I know that every award a child receives is special, but given where we were six months ago, I consider this nearly miraculous. He “aged” 3 years, entered school in a different language, skipped a grade, and is getting all A’s while having a great attitude. Thank you, Lord, for blessing us with such a special boy!  Congratulations Palmer!

Six Months Home

/ kensrobin / 6 Comments

It’s hard to believe that so many months have passed since our incredible journey to the Congo and back with our children. We barely got out of the country with both kids, and arrived on American soil exactly six months ago today.

There are so many things that are so much different from six months ago: our kids are speaking (mostly) English, the daily Palmer-tantrums are gone, the incessant Addie-belches are gone, we know that they are significantly older than they were alleged to be, and the incredible fear that resulted in bizarre behavior has relaxed as our kids are learning to trust us, and maybe even love us.

I knew one of the hardest things about adoption is awaiting love to be returned. One thing I didn’t anticipate was how hard it would be for me to love them in the first place. Oh, I had adored every picture, memorizing every crumb on Addie’s face, every time Palmer lost a tooth, every flash of a smile. But truthfully, I only loved the idea of them — the idea of rescuing two orphans from a miserable plight, the chance to introduce them to Jesus, the chance to live out the Gospel in such a tangible way.

Suddenly I had to transition from admiring two pictures to raising two children.

I didn’t realize how hard it would be to love two children who really only loved each other, who weren’t interested in communicating with me or being affectionate, who bristled at my touch and glared at me with hateful eyes.

“Do you not know how hard we worked to adopt you? Do you not know the expense, the hours of praying, the paperwork, the torment of just trying to bring you home?”

No, they do not. We were some strangers who suddenly and mysteriously entered their lives in the Congo, carried them away from everyone they ever knew, and planted them in a country where they are the minority, no one else speaks their language, and forced them into school that is much beyond their capability.

“Adoption is the only trauma in the world where the victims are expected by the whole of society to be grateful.” — Reverend Keith C. Griffith

It’s a wonder we’ve survived at all.

But this is the awesome nature of living out the Gospel. The Incarnation was not a pretty process either. Sometimes we tend to want the glory of the resurrection without the suffering of the cross, but we cannot experience the fullness of the Gospel without each.

As we wait for our children to return our affection, and accept themselves as part of our family, I can only recall what my Savior did for me, and wonder how many times He has waited patiently, crying out, “Do you not know the torment I went through just to bring you home?” How many times do I still bristle at His touch, or only love what I have here-and-now more than eternity? Meanwhile, He is inviting me to a deeper and more rich relationship where I see His Kingdom through His eyes instead of my own.

The more I know adoption, and the more I reflect on spiritual things, the more I realize that the model of the Incarnation — dwelling INTO suffering, not standing outside of it, is the key to knowing more of the heart and mind of Christ. I cannot stand outside of our children’s lives and merely wish them well or pray about them. No, I must whisper admist the tantrums, wade through impossible homework, wrestle through language barriers, and wipe the snotty noses of these children. My children. They will never know that I love them otherwise.

If we’re not intentionally wading into the suffering of others — the poor, the widows, orphans, the trafficked, the enslaved, the foreigners — how will they ever know our love, and ultimately, God’s love? This is the heart of the Incarnation, and the incarnational life: intentionally loving, even when it means that the mess of others splashes onto us.

And I do love them. I adore Palmer’s wit, his funny faces, his wild and adventurous spirit, his disciplined nature, and his tender heart. I adore Addie’s genuine giggle, her willingness to help at any task, her happy spirit, the way she plays with my fingers during prayer time, and her insistence that even the worst of times can be survived with a wistful sigh and the bat of an eyelash. My love for my children is love not born out of labor and delivery in the physical realm, but in the spiritual realm.

I cannot love them because they look like me. I love them because they look like Him.

There are no shortcuts to the glory of the resurrection. And even though incarnational living has been exceptionally painful at times, I’ve experienced God in an entirely new way in the last six months.

What could be more magnificent than that?

Palmer reading a bedtime story tonight.

Palmer reading a bedtime story tonight.