Welcome to the KingZoo and Funny Farm, where we learn to live, laugh, and love together. Here you'll find snippets of life in our zoo, parenting tips we've learned along the way, reflections on shining God's light in this world, passions in the realm of orphan care, and our journey as parents of a visually impaired child with sensory processing disorder. Have fun!

Monday, April 13, 2015

He's 2!

Be careful that you do not forget the Lord, who brought you out of Egypt, out of the land of slavery.
Deuteronomy 6:12

On this day of celebration, we also want to remember the miracles of the last two years.

April 13, 2013 and the birth of a little boy at 25 weeks gestation.

One week later the email that would change our lives, the life of a young woman from Texas, and the life of a micro premie...

"I'm sending a unique situation over.  T had a hispanic baby boy on April 13th. She has named him Noah. He weighed 1lb 13oz and is in the NICU. T has already relinquished but is still in our birth mother housing until she chooses a family. I texted her case worker today for an update on Noah. Last I heard, he was surprising all the nurses & nicknamed the little fighter in the NICU. He is a little famous cutie in there with with an adorable head of dark hair...

I didn't send this out to you earlier knowing out of state families might hesitate... but I thought I would at least try as T is feeling hopeless about a family to be in place for this precious boy...

Just got an update from her caseworker. Spoke with the nurse attending to Noah for this morning shift. Noah is doing well. He is on a pic line and is tolerating food well. He hasn't had many bowel movements. He has been stable in his breathing and blood pressure. Continuing to watch him and let him grow and get bigger."

We said yes and when he was two weeks old we found ourselves in the hospital lobby signing the paperwork that finalized our decision; we would parent this little one, no matter what.

And then we walked into the NICU to meet him for the first time.

Three months later, with cheeks on both ends of that tiny body, we were finally on our way home!

But just a few months later we learned that our Little Fighter, our miracle of miracles, had Optic Nerve Hypoplasia and the pediatric ophthalmologist declared him completely blind.

We mourned what was lost but we also trusted a God who had already done so much in this little life and who so beautifully orchestrated his journey into our family.

At one year old we praised God for the miracle of good health, developmental progress, and rolls of fat!
Either that dollar bill shrank or our 1 year old grew.

And now he's 2!

And a dollar bill tradition continues.

This winter was a bit more trying than his first with sickness after sickness. At the end of this month we have an appointment with a pediatric endocrinologist in Philadelphia to get a second opinion on whether or not Victor has any of the endocrine issues that so many of the children with ONH have to deal with.

We are praising God that in this last year he was discharged from PT after not only learning to walk but to run, hop, climb, and jump as well. He is always moving and prefers to be outside. He loves swings, slides, and trampolines. He is fearless when trying new gross motor activities. He loves water and the pool.

He has a pre-cane to practice orientation and mobility but around the house he is so familiar with his surroundings that he sees no point in using it. He is, however, quite fond of the "Bump and Turn" exercises we do with the pre-cane.

And after he passed those gross motor milestones, the speech just took off and waterbottle was one of his first words. Now he copies everything. Like most of his peers, his favorite word is no although it is usually followed by a very sweet, "No sank oo." He can be most demanding but knows how to turn on the charm. He sings the words to his favorite kiddie songs and knows the Frozen soundtrack as well as his sisters do. He gives himself directives such as No banging, Be careful, and Not in your mouth but he doesn't listen to his own advice. And then he gets mad when we tell him these things.

He loves his family and we love him. He's not as friendly with strangers. In response to their friendly, "Hello," they can usually expect a quick swat by Mr. Victor or at the least, an emphatic, "No," followed by the friendlier "No sank oo" he knows will be requested by someone in his family. He struggles when around his peers, most likely because they aren't narrating the environment and thereby warning him when they are close. All of a sudden there's a little body in his space and he does the thing he does best - hit. The only thing I can say is, we're working on it. Think of what it's like from his perspective and give him time.
Most people know that Victor is blind but what they do not understand is that Optic Nerve Hypoplasia is first and foremost a neurological disorder. Children with this condition can fall on a spectrum from very little effect to developmental delays, not being able to talk or walk. The condition can manifest itself by vision loss, pituitary issues, behavioral problems, developmental delays, seizures, or all of the above and many of these problems can arise at any time; we're not out of the woods. These children are often diagnosed as autistic but for obvious reasons there is much controversy over whether they are truly autistic or whether their behaviors are a combination of neurological difficulties and blindisms (those things that blind people do to stimulate their other senses such as spinning, bobbing their heads, etc.). So far in Victor, the vision loss has been the only diagnosed aspect of ONH that he manifests, however, as mentioned above, we do have some concerns and he will be seen by an endocrinologist with more understanding of this rare condition. He does have major anger and behavioral issues which could be associated with his disorder but which also could be the combination of a 2 year old who is frustrated by lack of vision. Think of the worst toddler tantrum you've ever seen and multiply it by 10. That's Victor. He bangs his head so hard he has made himself cry and given himself numerous black and blue goose eggs across his forehead.

Like many visually impaired children and adults, Victor has trouble staying asleep at night. He used to at least be pleasant during these middle-of-the-night fun fests but more and more frequently they are filled with screamed requests for things that he can't possibly have or do in the middle of the night. We might all (except Victor) be forced to sleep with eye plugs soon.

And as for his vision? We know he can see light. He points out every lamp wherever we go and wants to touch them. He loves toys that light up and puts them right to his face. We are also pretty sure he has some kind of usable vision. Put a bunch of snacks on his tray, and he will likely choose just one. He will reach for something on the floor. Give him another year or two and he should be able to tell us what he can and cannot see.

Yes, Victor Noah King is our miracle baby! This song is for you, Mr. Victor (Glorious Unfolding by Steven Curtis Chapman)

1 comment:

  1. Oh Cindy thank you for your "what ifs" today. Sure I did not read this the day you posted it but I did see the Good Doctor's post today about prayers being needed. I decided to read back a few stories to catch up on the zoo of which is always so uplifting. I truly needed to hear these things today. So thank you my friend.