Dr. Needelman

Yep. Another one of those people along the way.

Dr. Howard Needelman has become a reoccurring part of our lives over the last four years. We first met him in NICU life at Children's hospital about one week after the kids were born. He is many things by trade, a renaissance doctor of sorts: neonatologist, developmental pediatrician, researcher. He works at Children's in the NICU, at Monroe Meyer at UNMC in developmental pediatrics, and between both hospitals directing the TIPS program, a follow-up research project for preemies that have left the NICU.

The first time I met him was via phone, about 4:30 a.m on July 21st, 2004. Funny, the dates I remember. He had called the house to let us know that Sammy had taken a bad turn in the NICU. He was 8 days old, going on 9. His temperature was dropping and so was his blood pressure--two signs of infection in a neonate. He told us we should probably come to the hospital. When we arrived, he spent a great deal of time with us. He suspected that Sam was developing Necrotizing Entercolitis, a potentially lethal gut infection to which preemies often succomb. He carefully monitored Sam and started a boatload of medications until he was done with call in the morning and the doctor who was on service returned. Dr. Needelman's colleagues planted seeds of doubt in his diagnosis early on; they thought the x-rays were not conclusive for NEC. However, as the hours passed, it became quite obvious that Dr. Needelman's very wise, initial inkling turned out to be true.

In the weeks that followed, Dr. Needelman was more often our doctor than not. He seemed to be there at all of the pivotally bad and good times. He helped us through some of the hardest decisions of our lives and was there to celebrate the good ones in his very quiet and kind way. Kathy, one of the NICU staff, hinted to me that he had a special attachment to Camille, which suited us well as we had a very keen attachment to him.

Our story with Dr. Needelman didn't end when we left the NICU on September 25, 2004. Camille continued to see him in the NICU follow-up clinic until she was two, and we returned to see him last week after a psychologist who was helping us with potty training suggested that Camille exhibited some behaviors that fall on the autism spectrum. Knowing that children with significant visual impairment are notoriously over-diagnosed with autism due to behaviors realted to their lack of vision, we set out to see the man who we knew could provide us with honest, sound advice.

In short, he said, "I couldn't even come close to saying she is on the spectrum," and laid out the reasons why. He is so humble in saying that he knows nothing about visual impairment, when in actuality, he thinks outside the box because he thinks about how it may affect a child more than any doctor we've met.

And what's more important, he believes in Camille, a child who has lived under a microscope since the day she was born. I think one of the things that is hardest about having a child with special circumstances is knowing that your child is continually monitored and analyzed, tested and scored. Though it is all meant for the good, it really can require the family to live in a sphere which most of the world is not living in. The majority of families with babies, toddlers, preschoolers, and children have a fairly private home life; children are raised in an environment that involves little scrutiny aside from the occasional doctor visit and eventually, routine school conferences. Not so with a child who has a special need. From day one, doctors, interventionists, therapists, and specialists all closely monitor the child's progression and how far they fall away from "normal". For a family, it can be very hard to stay afloat in the midst of all of this. In all honesty, it can become difficult to continue seeing your child's gifts instead of their weaknesses, seeing what makes them special instead of what makes them different.

That is precisely why Dr. Needelman is continually a person who feeds the spirit of our family. Though he most certainly states his concerns in a very matter-of-fact way, he has always been able to put the charts aside and see Camille for who she is. He has gone so far as to say that the typical developmental testing means very little in Camille's case as it is visually biased. He does not deny the challenges the visual impairment coupled with the consequences of prematurity can bring, but he also does not deny Camille's potential in the face of all of that.

On the way out, he drove the point home that he thought it was crazy that Camille is not on anti-seizure medication given the magnitude of the seizures surrounding her fever in May. I believe, "Give me a break," were the words he used. However, he understands the caution of weighing side effects, and listened to me as I told him that we cringe at the thought of giving her anything that would affect her personality and cognition, the two big things she has going for her---to which he said to me, "She has a lot more going for her than that."

He removed the microscope. For that small moment, it was gone.

As we were walking out the door, I asked him if he was still working in the NICU. He gave me some song and dance about yes, he was. He was going to quit after his last child graduated from college, but then the stock market plummeted, so he thought he'd stay on for while. Yeah right. And that's exactly what I told him, "Yeah, right. You'd miss it. You love it." To which he said, "You're right."

Thank goodness he was in the NICU for our family, and thank goodness he is there for families yet to come.

And to you, my little girl, who crawled out of your bed tonight to fall asleep to the light of your beloved ladybug nightlight (in your oooh-too-cute pink and brown cupcake nightgown): My wish for you is that someday, you will be out from under the microscope forever. My prayer for you is that in 20 years, if you are reading this, you are living in a world where you can just be you, seen for all of your gifts and talents....as I see you tonight as you sweetly sleep... as your daddy and I see you everyday.

Flying Monkeys

Alas, little blog, I return.

For as long as I can remember, I've loved the Wizard of Oz. When I was really small, before the days of VCR's, I can remember John and I getting very excited when the movie was slated to come on TV. Mom would make a big deal out of scheduling time out to watch it the night that it aired. Knowing her, she probably popped popcorn, threw some blankets and pillows on the floor, and let us have pop that night.

My love for the Wizard of Oz was reignited last year as Mom went with me to Chicago for a conference and we took time out to see the Broadway production of Wicked at the Ford Theatre. Knowing that we were going to get to go months in advance, we both read the novel "Wicked." The show was not a bit less than phenomenal. The message was so powerful. I love the paradoxical nature of the production and the fact that the Wicked Witch is completely misunderstood, living in a world where she champions for good only to be scapegoated by the true evildoers. It is a story of the underdog and an examination of what it really means to be good in a world that is worldly. As a fringe benefit, the music was amazing. It remains a favorite in my heart still, as evidenced by the continual playing of the soundtrack as I painted and painted and painted and PAINTED this last weekend.

How fitting then, that on my way to work on Monday, I see the following sticker in the back window of the car in front of me:

"Don't MAKE me release the flying monkeys."

I think it will be my new motto. What person, when feeling frustrated, angry, or pushed to the limit, wouldn't stop to laugh and consequently feel much better if they just blurted out this simple phrase?

This definitely takes the cake for the best bumper sticker ever created.

Rearranging

We are gearing up to put our house on the market. And no, you don't need to point out the fact that the economy is slipping through our fingers as we speak. I am aware and in denial. The decision comes after many months of contemplation and we believe it is the right decision based on the needs of our family. But that is a conversation for another time. For now, I must tell you about the humors of the process.

Today, the realtor had a person come "stage" our house. In short, she depersonalized everything and gave suggestions on how to arrange the house and make it look better for selling. It was a bit of a whirlwind. As far as I can tell, she came to a house that was fairly picked up and somewhat orderly, and left leaving behind Jen with a slightly bruised ego, big piles that are supposed to go in storage, and a list of to-do's that makes me weary.

The thing is, I know she was right in many regards. The last four years of our life have been focused very little on home interiorizing. We've been too busy with birthing, loving and attempting to raise two children, traveling to and from Detroit, and supporting Camille through her various surgeries. I just felt good on the weeks when the toilets got cleaned. Forget stylish curtains.

Still, I could see the realtor cringe when the following comments came flying out from the stager:

"Can you believe how much BETTER this room looks now that we've opened it up?" I heard this one at least three times. No exaggeration.

"So if I were you, I would take down those towels and replace them with cream ones. It looks like you've tried too hard to match them to the color on the wall."

"And that needs to come down...and so does that...and so does that."

Aye, yei, yei!

At any rate, you must know this fabulous story. All of this rearranging took place while Camille was at preschool. How cruel is that? To move all of the things in the house while your visually impaired child is off at preschool learning? No mom-of-the-year award for me.

There is coolness to be found in it, however. When Camille came in the door, she immediately wanted to go over to "the lamp chair," the big round chair with the lamp near it where she likes to roost, read and relax. From across the room, she knew the lamp had been moved. She stopped dead in her tracks and said, "Mommy, do you know where the lampshade went?" And then, "Mommy, do you know where my baskets went?" (Her baskets hold her beloved books.) She then proceeded to request her alphabet building blocks, which of course I could not find in the house stager-induced mess.

No need for me to find them. Camille found them in some pile all by herself.

June Cleaver: The Revised Edition

Gone are the days of cooking cleaning in high heels, an apron, and a neatly pressed dress. At least at this house. Heck, we are lucky to get a meal that doesn't come out of a box, and if the house is clean.....bonus.

Recently, however, Liv tends to be focusing full throttle on being a little homemaker. Unlike the last post on her love of chores (see Cindabrella), today, she stepped it up a notch and was cooking in style. She came up with her own version of June Cleaver.

This girl is always catching me off guard. Today, I was in the laundry room and up the stairs comes Liv. Instead of the aforementioned high heels, dress and apron, she was donning a pink and yellow boa, two headbands (one on her head, the other around her neck) and one of her mittens from last winter (and yes, you guessed it...it is pink and brown) and a pair of my flip-flops. In her little mittened hand, she was carrying a bowl from her kitchen set containing half of a fake hamburger bun.

"Mom, I had to put my glub on because the dish is berry, berry hot. Okay?"

Needless to say, this cracked me up. A couple of weeks ago, Livvy was fascinated that I was wearing "a glove" (of course, my oven mitt) to get, very likely, a pre-made frozen dinner of some sort from the oven. Too funny that she found her mitten today and reinacted the scene.

So, June, so sorry. Though you certainly had it all together on screen, Livvy trumps you in terms of pure entertainment and ingenuity.

Pretty New Glasses

Two nights ago, in one of her unique up-close-and-personal investigations of my face that are so trademark of Camille, she stopped and announced: "Mommy, you are wearing pretty glasses!!"

"Yes, Camille, you are right. I am wearing glasses! I'm glad that you like them."

"Mommy, I want to wear your glasses."

I obliged and took them off, handing them Camille, who promptly took them off, turned them upside down, and put them on atop her own glasses. (Please note: Camille and I both have brown glasses. See previous post).

Camille was so delighted to be wearing my glasses and proudly announced, "Look, Mommy! I have pretty new glasses on!"

My heart leapt. Socialization. Initiation. Description. Expression. Again, my preemie mom heart soars.

As you have always told me, Jayme, "Camille in her own time."

...and brown

Thanks to Great Aunt Betty, I went on a mini-spree over the weekend to get the girls stocked up with fall-wear. Poor Liv is getting a lot of hand-me-downs from the big sis, who may not be the "big" sis much longer, but she still got a few morsels. Camille, having out-grown all of her duds from last fall, got the most goodies.

I have to say I love the Osh-kosh outlet in Gretna. They have cute close that wear well and as a bonus, many of the pieces coordinate together. Hence, six articles of clothing yields endless outfits. And everything is on sale, which is further discounted with a e-coupon. Gotta love it.

I also have to say that I am loving brown these days. Especially in combination with pink or pale blue or green. It shows up in my clothes, my scrapbooking.....and now the clothes the girls wear.

I hadn't realized until I started unpacking my shopping goods from Oshkosh how much I love brown and how much I had actually purchased for the girls. Let me illustrate:

Yep. Brown in cute little shirts with owls on them. Brown with super cute flowery skirts with matching striped sweaters. Brown winter coats with pink inner linings. Brown in fleece cupcake pajamas.

I'm loving it.

Thank goodness the girls are at an age where I can still dress them in pretty much whatever my heart desires.

And thanks, Aunt Betty, for providing fall clothing fun.

That's My Girl!

Confession: Tonight at approximately 9:00 PM CST, Liv and I sabatoged the package of Golden Oreos in the kitchen cupboard.

As I was getting the cookies out, Liv looked at me and said, "Mom, I'll lick the frosting off and then you can eat the rest, okay?"

A girl after my own heart. I can remember the days when I would only eat the cream cheese frosting off of homemade carrot cake and the chocolate frosting off of yellow cupcakes. At any rate, my selectivism is gone. I wonder when I made the transition to eating the cake too....

*&^!/@

The vote is in. No one is able to see the video of Camille at her brailler except for us at our home computer. I am ashamed to admit that I spent a collective total of approximately four hours trying to get that thing up on the blog and pratically danced (okay, so I did) when it finally started working. Today, I find out that no one can see it but me. Oye!

In the spirit of Grandma Irene and Grandpa Leonard, I am officially letting it go. My grandparents, in their retired years, refused to succomb to technology. No VCR. No answering machine. Grandma once told one of us, "If someone wants to talk to me, they'll call back when I'm home." Imagine what they would think of Blackberrys! Anyway, in the name of time, sanity and Grandma Dear, I am letting it go. If you want to see the really terrific video of Camille pretending to braille her first and last name, complete with the apostrophe, you will have to come visit.

...not that this isn't going to keep irritating me....

Scribbling

In visiting with many other mothers who have children with visual impairments, a theme rings common among us.




We all spend a great deal of time wondering how much our children will be different from their sighted peers.



Most four-year-olds Camille's age pretend to write. Many hours are spent jotting down thoughts and wisdom in Preschooleese, a writtten language which makes much sense to the four-year-old, but perhaps is not as legible to untrained adult mind.



Yesterday, Camille taught me a lesson. The following video is what she did while I was making dinner--all by herself with no prompting from Moi, until of course I had to invite myself into her play with the video camera.

So, the lesson learned: Some things are really not that different.

Scribbling