so, tomorrow i am taking lucia to another round of blood tests. each time they draw her blood a little bit of my sanity drains out with it. these blood draws may sound fairly simple and straightforward, but they aren’t. it isn’t easy to find a big enough vein on our little girl to provide 6 – 9 vials of blood, but the nurses sure do try. four or five of them gather around her. one will hold her feet another her arms and they will then proceed to prick her hands, her wrists, her inner elbows, her feet and last time they were finally successful drawing it directly from her head. all the while my daughter screams and gags and sweats and turns different shades of red and purple. and all i can do is watch and cry and hold back my own screams of sorrow and anger and helplessness.
sorry to be a downer today, but i am dreading tomorrow.
i haven’t updated you all on lucia’s last test results. so here it is: the geneticist does not see any soft markers for metabolic disorders. i know this should have been a huge praise that i should have typed across this page in bold capital letters, but the truth is that it is getting harder and harder to shout my praises across rooftops these days. it’s harder now because i now realize that getting a negative test result only means that more tests are coming and that what they are testing for is much more complex and serious than for what they previously tested. so, the best i can do is to catch my next breath and prepare for the next round. the blood tests tomorrow will be to see if there are any microscopic “errors” in lucia’s DNA such as deletions, duplications, etc. if found, they could point toward more rare syndromes. it will also confirm whether or not lucia has prader willi syndrome. the first test for this syndrome was only 70% accurate and this will confirm it completely.
unfortantely, the last round of tests did find a possiblity that lucia’s kidney function is impaired. we are getting this retested tomorrow and if it were even possible to prioritize these things – i would most likely put this near the top of my prayer request list right beneath – 1. God, please take this cup from us (if swearing were allowed in prayer i’d definitely add it in this one).
i am begging anyone and everyone who reads this to please ask God with me that the results will show numbers within the normal range and that it will affirm that lucia’s kidneys are functioning properly.
i don’t have enough words or thoughts to express to God how much i want my daughter to be completely healed. but, i imagine your words along with my few rising up and filling the heavens tonight, intermingling with the angels’ songs of praise and landing delicately in Jesus’ hands. in turn, i picture Him reaching down and holding my Lucia tightly in His arms.
have a i mentioned she is the most affectionate baby ever? well, she is.
please pray for her. good night.