Everything is theoretically impossible, until it is done.” - Robert A. Heinlein When Chloe was born, she was not expected to live. Period. She was not expected to walk, to run, to live a normal life. Period. Chloe has defied all odds, she DOES the impossible and she isnt done yet! She has a mother who was destined to do the impossible right alongside of her, and siblings who cheer her on when life most likely seems pretty unfair and impossible to them. Our numbers may be small, but we have the strength of an army when the impossible rears its ugly face our way! This has not been an easy time, all plans seemed to go awry, obstacles pop up when least expected, time seems to be moving in slow motion, yet zapping our energy at warp speed. Not being in Ohio within easy reach of Dr. Gordon has had its anxiety producing moments. We know it will all happen as it is supposed to and that God is leading us all through the messy things...we do not stop believing in the impossible! Chloe has not felt well the past few days, the turning of the screws has reached that point where it is painful. She has been extremely clingy and sometimes feels scared. That is painful for us. Being away from Dr. Gordon has brought some scary moments for all of us. The screws are being turned 2 millimeters a day, that is a lot. The problem came when there was no more screw to turn, Dr. Gordon had to instruct Jennie over the phone about steps to take with the distractor to change the mechanics of it. The first option has worked until now, the second, well...tonight to we tried to readjust wiring and failed. Chloe was so distraught we had to give up. This contraption is wild, because its so mechanical, in order to do our work, we needed needle nose pliers. Jens were not working, we attempted to twist the wires with scissors, I was terrified I would mistakenly just cut them, then what? So, we had to take steps backward and leave it as it was. We will get new pliers tomorrow and hopefully move through this unsettling task with more courage. Our Warrior was the saddest I have seen her. These screws will continue to be turned for two more weeks, then because of scheduling with Dr. Gordon, she will wait another week here letting it rest before returning for the removal of the distractor. This is longer than expected, was had already begun to let her begin counting down days, now more got added on. These things are heart wrenching, She has been able to get out to do a few things, but germ consideration is huge and she just hasnt felt like doing too much. Jen forces herself out to do some things with the siblings, but she is EXHAUSTED. She has only had a nurse one night, all others, she is up all through the night tending to Miss Chloe. The healthcare agency acted in the initial plan, and reassigned Chloes nurses to other cases for 6 weeks. Tonight and tomorrow, by the grace of God, Jen will have a nurse and will get some Heaven sent sleep. Then its all a crap shoot again. Trying to hire new nurses is time consuming! The very best news I can report is that in the x-rays the last two weeks, the airway is getting bigger and the impossible is losing! Chloe will begin to look more different everyday, everything will seem out of whack, but the jaw is being pulled quite forward in ORDER to open that airway. It will fall back some when the distractor is removed, were going full bore this time! She is so delightful even when irritated, funny when on pain meds, and the coziest little Warrior ALWAYS. Well, except when you arent her friend, but that never lasts long! I apologize for not updating sooner, we have been so busy, and so tired...all of us. Thank you for all who have aided us since they returned home! We love all of you so much for calling, stopping by, bringing food, encouraging, loving us. Nothing is impossible with this little child of God...just you watch and see.
Posted on: Wed, 06 Aug 2014 06:33:12 +0000
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