Prednisone Trap

Posted on July 30, 2012 by thisnest

Childhood Nephrotic Syndrome

www.ThisNest.com


We saw D’Lo’s new Pediatric Nephrologist today. Good news? No. Bad news? Not really. It was more like the same news…just wrapped up in a different package. We will stay on the prednisone for now – and wait a little longer on the biopsy and alternate meds. Since he responds so quickly to the steroids, that is our first-best defense. Unfortunately, he relapses once he comes off the steroids so, for now, we will wean him down to the smallest dosage possible (that will still keep protein from spilling into his urine)…and there he will stay indefinitely, unless his growth becomes halted. They will be monitoring his height carefully and, in the event he stops getting taller, we will revisit the biospy and alternate meds. Of course, if he begins to relapse while on the steriods, we will also revisit the biopsy and alternate meds.

So, like I said – just more of the same. The same constant urine sticks, the same constant watching for foamy pee, the same constant worry every time his eyes look swollen…and the same constant faith that he may just outgrow this someday in the future, or be healed from it some day even sooner. Please Lord.

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Faith and Worry

Posted on July 28, 2012 by thisnest


I can only sit under the weight of life’s stress for so long. It’s like I’m too strong to be weak – and too weak to be strong. And then I remember that it’s not my strength I must rely on…it’s His. It’s not my battle…It’s His. With everything that has gone on in the Sparrow Household since I decided to go back to school, it is clear to me that I am on the right track. Otherwise, why would the enemy be fighting so hard to throw me off-track?

Dee Dee has been going through some things, some real learning moments – for her and for us. Little D’Lo and his constant fight against this kidney disease – his Pediatric Nephrologist appointment is Monday. My husband has had not one, but two, eyelid surgeries – causing him to take time off of work and, therefore, money off his paychecks. AD was bitten by a spider while I was at school on Tuesday and it became so infected (Cellulitis/possibly CA-MRSA) that we spent all day Wednesday between the pediatrician and the ER – I missed school on Thursday as a result. One of our Extras was released from jail in Georgia – only for another to be arrested and jailed the following day in Oregon. Deeeeeeep breath and whoooooooooh…exhale.

In the real perspective of global things though…is it really so bad? NO. No, it’s not. My children will eat today, they will have water to drink, and I can take them to the doctor when they have to go. Then we can come home to our own place, sleep in warm beds and, God-willing, wake to see a more beautiful day. I have a mind and a heart, and a mouth that has gone on and on about choice and consequence with ALL our kids…and they also have minds and hearts, and ears to hear my ramblings. All I can do past that is pray. Pray. Pray. Pray.

I’ll be praying for a growth in my faith. I’ve heard it said that the beginning of worry is the end of faith, and the beginning of true faith is the end of worry…and I am TIRED of the worrying.

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Praying for Magic

Posted on July 16, 2012 by thisnest

Childhood Nephrotic Syndrome

www.ThisNest.com


I’ve said it before and I’ll say it again: He is strong, so strong. He is a strong soldier – fighting a battle he’s hardly even aware of. He has to take his medicine again – that’s all he really knows. He has to take that stuff twice a day…and pee on a little stick once a day. Other than that, he plays the day away with the strength, energy, and imagination of a four year old boy with no worries. I love him so much.

His pediatrician has him back on a high dose of prednisone. Once he pees three clean sticks in a row (that would indicate that his kidneys aren’t leaking his much needed bodily protein out through his urine), we will begin tapering the dosage. Down a little, down a little, down a little – same old routine. Problem is, the fact that he keeps relapsing as soon as he comes off the steroids is revealing to his Nephrologist that he is prednisone dependent – not a good thing. So, as we progress with the tapering down of the steroid dosage, we will meet with the Pediatric Nephrologist in August to begin discussing a kidney biopsy and alternate plans for treatment.

In the meantime, I will watch him being a normal little boy…who happens to have to take a lot of medicine. I will watch his daily transformation from D’Lo to Spiderman to ninja warrior to budding artist to zombie to olympic sprinter and back to D’Lo again. I will witness all the magic that exists in the daily life of a four year old…and I will pray and pray for a lifetime of magic to come.

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Rosebuds Through Rocks

Posted on July 11, 2012 by thisnest

Childhood Nephrotic Syndrome

www.ThisNest.com


Life isn’t always a rose-petal path. The journey just isn’t soft and fragrant the entire way. You have stretches where the warm sands of tranquility soothe your feet, and then you have the miles in between – where your feet are met with sharp resistance, frozen in hardship. Although I know that hardship is relative, each of us having our own idea of what that is for us…things are feeling pretty hard right now.

First of all, dealing with teenagers is NO easy task. We have one (not sayin’ which) who has really taken us for a ride this week. Totally out of character for him/her (nice try, ya’ll) and I am slightly hurt and definitely exhausted. I love this boy/girl and I know it’s just a phase…or at least I try to keep reminding myself of that. Somehow though, this headache that made its home in my frontal lobe two days ago is still hanging around.

Worse for us though, and what I really want to share with everyone who has been following D’Lo as he deals with his Nephrotic Syndrome, is that he has once again (third time) relapsed. He just finished his second round (4-6 months each) on prednisone and I hadn’t checked his urine in awhile since he had been responding so well. Today at Dee Dee’s volleyball clinic, when I took him potty, I noticed the foam in his urine. My heart sank – really. I swear I felt it hit the bottom of my flip-flops. Once home, I tested his pee with the little sticks from his Pediatric Nephrologist…DAMN IT! It didn’t tell me what I wanted it to.

So tomorrow morning I’ll put in the call to OHSU and get this process started all over again. He can’t take much more of this prednisone, but I’m unfamiliar with alternate treatment. I don’t even know what to expect. I’m stirred, not shaken. I’m bent, not broken. I’m worried about my little guy. I know that God loves him more than I do, although I can hardly fathom that. Plus, I’m feeling kind of far from God right now anyway.

Realizing that this is the absolute WORST time to feel that distance…still here it is. When you Prayer Warriors go to battle for the health of my son – maybe you could throw in a few words for me? I appreciate it. Meanwhile, I’ll be searching for those few little flowers that always still blossom…even amongst the sharpest rocks along a journey.

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Three Years Ago Today…

Posted on July 3, 2012 by thisnest


Three years ago Today. Three years ago to this very minute…my contractions began. My fifth child was preparing for his entrance into this world. I looked at the clock and I smiled – I knew in that moment that my last baby would indeed arrive on my very own birthday. I had been hoping and praying, walking and walking, and more walking and hoping that I would be able to share July fourth, the most phenomenal birthday anyone could have, with my baby-est boy-boy.
A mere six hours after the first contractions, I was holding the last little Sparrow in my arms. He has been a joy to me since the first noticeable flutters in my womb, and a great source of our happiness every minute of our lives. He is the amazing exclamation point at the end of the Sparrow sentence. He has made us smile every single day of his life. We are blessed to be his family.

Happy almost birthday, Adarius. Daddy’s little Chief. Mommy’s heart.

Now let me get off this post so that I can go upstairs to his bedroom and give my youngest baby some loves while he is still a two year old. My very last two year old…oh, my heart!

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