I sat on the back doorstep on Saturday, holding Victor as he once again had an episode of uncontrollable shivering, purple fingers, and crying. When this happens, he won't eat. He won't let us wrap him in a blanket. He just wants to be held (sometimes, kind of). I sat outside hoping the sun's warmth would fill him. As I begged God to heal him and to tell us what to do, I remembered exactly two years ago and another step and another day when we cried out to God for wisdom.
April 25 of 2013 was a bright and sunny day, warmer than this year's. It also happened to be the day we promised the caseworker we would call her with our final decision about the little baby waiting for a family. The Good Doctor and I sat on the front doorstep agonizing over what was going to be a life-changing decision for our whole family. God answered those prayers by reminding us that He had already answered those prayers in confirmation after confirmation since first hearing about this little one just 5 days earlier. And we said yes.
We still say yes. Even during the tantrums. Even during the sensory battles. Even during the nighttime hours with requests for bacon, Mariana, outside, and trampoline. Even when rescuing him from the latest adventurous excursion by a child with little vision. Even during the yelling, throwing, and hitting. Even during the unknowns.
Please keep us and Mr. Victor in your prayers Thursday morning as we have an appointment with another pediatric endocrinologist for a second opinion. We have been unhappy with Victor's current endocrinologist who seems to have no background in Optic Nerve Hypoplasia, isn't listening to my concerns and knowledge (of course the mom can't possibly know more than the doctor), and can't or won't do the research necessary to make an informed decision (Google would be a good place to start). So we asked other families who each have a child with this condition, saying we'd be willing to travel a few hours if we needed to do so. This doctor at Children's Hospital of Philadelphia came highly recommended, has several children in her practice with ONH, and demonstrates to these parents that she knows which tests need to be done to determine if there are indeed endocrine issues (something our current endocrinologist is not doing). Please pray for answers.
And a few praises!
Mr. Victor ate rice and beans for supper! Yes, Mr. Sensory Challenged Picky Eater who has his own no-fail list of 11 approved foods and who will not stray from that list no matter what manner of food we place on his tray first (ie. the meal that the rest of us are eating). We do not know what happened last night but he not only ate the rice and beans, he asked for more, and more, and more. We never did have to pull out any of the 11 approved foods in order to get something into him.
And then, surprise, surprise, he slept through the whole night! No midnight requests, not even 2AM or 3AM. And my alarm went off at 5:00 before his internal alarm woke him for the day. Again, unheard of. Praise God!
Only time will tell if this was a fluke but we are praying for healing!
In other news, Mr. Victor figured out how to open the front door by himself. So if you happen to see a cute little black-haired boy walking down the street, just call my cell. Don't worry, he can't see you so he won't know who turned him in. More likely, however, you'll see a very red-faced Good Doctor who has come home to find the screen door locked. For a man with few pet peeves, locked doors nearly send him right to the divorce lawyer. You can pray for him.
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