around june of last year (2011) lucia had a full urine-analysis done. back then there was only a hint of a possibility that her symptoms were the cause of a metabolic disorder, but our geneticist went ahead and tested her amino acid levels just for the sake of it. twenty amino acids are measured and are expected to fall within the normal range, but lucia’s results showed about 10 – 13 of them completely high off the charts. the results read that there was a probability that this was caused by a metabolic disorder or from a functional problem of her kidneys. these results were not alarming to our doctor, but they did offer another suggestion that lucia’s metabolic system was not quite right.
we had the urine-analysis redone at the end of march of this year. i asked a few friends to beg God for a miracle. the results took forever to come back. i called our pediatrician’s office almost every day- sometimes twice a day – asking for the results, and they would disappointedly tell me each time that the lab had not yet sent them back. a friend of mine suggested that it was taking so long because God was working out the miracle. 🙂 it made me anxious and excited to see the results.
well, they are back and…
all TWENTY amino acids are in the normal range. and the last line of the results reads “THESE RESULTS SHOW NO EVIDENCE OF A METABOLIC DISORDER”.
i will let you soak that in for a minute.
now, that right there is yet another sign that our little girl is a miracle in progress.
before i let you get all wild and crazy about this (which you should be) i should tell you that we met with our metabolic geneticist in austin this past week and he explained that these results do not take away lucia’s diagnosis. her muscle biopsy and other factors are the strongest indicators of mitochondrial disease, but the results – he admitted – are very good news and a step in the right direction (i might add: in a direction mito disease doesn’t tend to go). i asked him if he could explain the drastic change in her results from complete disarray to completely normal and he mumbled a bit and then changed the subject. that’s doctor code for “i can’t explain it, but can’t really tell you it was God’s hand either.”
when i look at lucia, i feel like i am watching a miracle in slow motion. if you ever catch me staring at her in pure awe it’s because i am being blown away by God’s masterpiece unfolding in her. i’ve never really seen miracles in physical healing first-hand. i feel honored to have a front row seat and i invite you to pull up a chair.
mitochondrial disease causes damaged mitochondria within the cells. these damaged mitochondria (because they don’t function at their full potential) cause a shortage of energy for the body. the body has to adapt to work with lower levels of “fuel”. this lack of fuel can wreak havoc on any organ system at any time. they primarily disrupt the body’s metabolism (like body temperature and other biochemical functions). mito disease is usually progressive as more and more of these damaged mitochondria are created. biochemical functions are either constantly dysfunctional or they tend to get worse over time. they don’t usually improve.
until you meet lucia.
lucia was born with crazy temperture control. when we brought her home from the hospital she could not maintain her own body temperature. for weeks we had to keep her wrapped in 2 or 3 thick blankets to maintain her temp at a minimum of 97 degrees. we had to check her temperature at every diaper change. at around two months of age (as well as four months of age) we took her to the hospital with a 105 fever following her vaccines. when we brought her home from the hospital her temperature dropped to 95.5 degrees within a few hours (scared me to death when i touched my frigid sleeping baby). i have read countless stories of mito kids who struggle with this lack of temperature control for their entire lives.
lucia now has completely normal temperature control. we don’t even have to think about it anymore. how undeserving are we??
also, lucia’s fever used to not respond to tylenol or motrin for the first 6-8 months of her life. now they respond perfectly.
lucia continues to develop (at her own pace)! lucia is currently crawling and trying desperately to pull up. she bears weight on her legs (something she did not do for a long time) and is even now attempting to take steps when we hold her arms.
all i have to say about this is: THANK YOU GOD. i feel deep deep deep gratitude that You are choosing to bring healing to our precious daughter.
and now for my moment of weakness…
lucia is having tubes placed in her ears this friday. it’s surgery so she will be put under anesthesia. adam and i felt a lot of peace when we decided to go forward with this surgery. we felt that it was the right time for her speech development and may even help her balance for future walking. but as the date draws near, my trust and faith begin to crumble and fear is slowly creeping its way in. as i’ve said in other posts – lucia is considered a high risk patient under anesthesia. she is having this very common and quick surgical procedure at the childrens hospital instead of at a surgery center for precaution. and eventhough i have just painted you a picture of God’s hand all over her body and life, i have to admit that i am still scared.
will you pray for her? will you pray for the anesthesiologist to have utmost wisdom? for the surgeon to have steady hands and precision in his care? will you pray for the nursing staff to have kindness and gentleness welling up in their hearts? will you ask God to fill the o.r. with His presence and literally cover her like a blanket with His protection?
thank you SO much.