Brain Trust

For a couple of months now Eliza's face has been a bit skewed to one side when she talks, laughs or even yawns. It has been suggested to me that this is (a) a normal toddler habit to make faces (b) an attempt to stabilize her facial muscles to help her articulation (c) a figment of my imagination or (d) (my favorite) just another example of how I need to "lighten up and not worry about little things." My inquiries as to whether this could be related to Eliza's seeming inability to chew were met with silence and rolling of eyes.

Since none of the answers from those "in the know" seemed quite right to me, I searched out a pediatric neurologist and had him examine Eliza this week. He was lovely, kind and supportive.

And very certain that answers (a) through (d) were, shall we say, bullshit (my word, not his).

Just to put this in perspective, here is a photo of Eliza speaking:



Figment of my imagination? I think not.

It seems this facial asymmetry could be caused by one a few problems, none of which is something you want in your household. So the new short list of choices is (in my layman's terms):

(a) "Extreme Preemie Brain." For those of you who have been following along for a while, I posted this diagram a while back:

:





My personal belief (and that of quite a few people in the post-NICU business) is that you just can't take one of these partially developed 26 week brains that is meant to be happily floating in a dark, warm pool of amniotic fluid, drag it out into the glaring light of day in a NICU with all hell breaking loose, with limited regard for pain and sensory management and hope that this brain will develop normally. So, this problem of Eliza's could be just one more gift of extreme prematurity with no particular explanation or solution.

(b) Something like Periventricular Leukomalacia (PVL) that was not seen in Eliza's NICU head ultra sounds. It is not unheard of for this to only be diagnosed later in a brain MRI. For your reading pleasure, you can go here: http://emedicine.medscape.com/article/975728-overview

(c) A brain cyst/lesion/tumor/etc.

(d) Who the hell knows

Where does this leave us? Well first Eliza will have a brain MRI. Because Eliza will need full sedation for this she cannot be sick in the preceding two weeks. So for those of you who plan on visiting, you will not be welcome here if you are sick, have been sick, been near sick people or refuse to wash your hands and remove your shoes when you come in our apartment.

Hopefully the MRI will give us some guidance as to what the problem is. From there, well who knows. Eliza and I will cross that bridge when we come to it, just like we have many times before.

Oh, and the next person who tells me to lighten up about this "prematurity thing" may not be all too happy with my reaction.

Happy Un-birthday Eliza

Today was supposed to be Eliza's birthday. No gifts, no fanfare. Just a lot of "what ifs" floating in the air.

For Your Reading Pleasure

I was recently sent links to two articles, one on life in the NICU and the other on feeding issues. They are both well written and nicely address their respective topics.

Afraid to Love Her Preemie

The Doughnut Gatherer

A Good Start to the Summer

June started out with some lung-ick that got Miss E down. She did a lot of lounging:



We had a visit from a high school friend, Curtis, and Eliza took advantage of the chance to have someone push her swing:



Then we had a little more lung ick:



But things started perking up a bit and Eliza was back to her smiling self:



We have to thank Joyce for taking such good care of Eliza while I had to work:



The month ended with a party:



A day at Please Touch Museum:



And a carousel ride with Eliza's best friend Hallie!





Not a bad start to the summer!

Bias

Is bigotry in the air these days?

A topic of much discussion with another micropreemie mom friend has been our mutual, if somewhat belated, realization that a few of our family members and friends are actually quite put off by our children because our children have special needs or disabilities.

The one common thread is that these people maintain political correctness and actually pretend not to be bothered by our special needs children. Their bias and bigotry are often "outed" by sheer chance. An overheard conversation at a family function where phrases like "short bus" and "sped" are spoken (for the uninitiated, "sped" is a very unkind word used to describe kids in special ed programs). A poll posted on Facebook of all places about a developmentally delayed child's interaction with their typically developing child. An invitation to a child's party that was "forgotten." Unsolicited advice that certain activities may be "too much" for your child. A passing comment that you're too "neurotic" about your child's welfare (watching your child for months on life support will tend to do this). A comment that the "possibly" autistic child in their child's class is too disruptive. The suggestion that special needs children don't afford the level of competition that their child needs to succeed so they should not be included in the class.

These people act as if a couple of three year old special needs children are a threat to our very existence as a society. Are our children's delays and differences that frightening? Are they just throwing salt over their shoulders that they do not walk in our shoes? Perhaps they enjoy poking fun at three years olds who can't defend themselves? I just don't know.

Maybe these are the people who should be marginalized from our society and not a handful of special needs children who are just starting to enjoy life's adventures?

When Your Child Can't Take Meds Orally ...

Eliza had nasty, nasty bronchitis. Poor Boo.

Yesterday the pediatrician prescribed Zithromax orally for Eliza. I had my doubts but was assured that it was cherry flavored and would mix well with her formula. Why I believed this is beyond me. I even mixed it with Coke and I almost puked.

So here is today's plan:

1. Go to office leaving very sick child with nanny.

2. Feel guilty for doing so.

3. Have car service pick up nanny and very sick child at 2pm and go to the first pharmacy where pharmacist will bring the injectable antibiotic and EMLA cream to the car.

4. Have car service take nanny and Eliza to second pharmacy to get lidocaine solution to mix with injectable antibiotic since pharmacy number one does not have this.

5. Spend time ruminating that I should have just gone to pharmacy number two for everything.

6. Have car go from Upper Eastside to Wall Street to pick up guilt ridden mother.

7. Have car go from Wall Street to West Village to doctor's office.

8. Wait in car for doctor (not a real timely office).

9. Use time in car to apply EMLA cream to child's thighs (since with my luck the doctor will inject her on the side with no EMLA cream).

10. Bring sick child and antibiotic and lidocaine solutions into doctor; wait for doctor to mix solution into injectable form.

11. Hold down child (who by now is inconsolable) for doctor to give her injection, since heaven forbid the nurse should volunteer for this duty.

12. Pay $30 co pay for this adventure (on top of yesterday's co pay).

13. Get in car service and head back to Upper Eastside.

14. Pay car service $120 for this adventure three hour cruise.

15. Drink wine (which will have to be cheap wine since I just wasted $150 on cars and co pays).


Did I mentioned it is pouring rain here today?

Honest Blogger

Now this is a nice award! Olivia and Logan's mom, Jodi gave me the Honest Scrap, honest blogger award. We all know I have that slightly competitive side and how I do love a good award. Thank you Jodi!


The Rules:


1 - Thank the person who gave it to you.
2 - List 10 honest things about yourself.
3 - Put the Honest Scrap logo on your blog.
4 - Select 7 other bloggers that you think deserve this award.

Here goes:

1. I routinely lied to Father Tully in confession during grammar school so that the next week I would have something to confess: "I lied to a priest."

2. I'd rather be a gardener than a lawyer.

3. I don't understand the suburbs.

4. I am completely tone deaf (although is this really news?)

5. I am very tired of people commenting that they wish they had a feeding disorder like Eliza so they could lose weight. Do they realize how this sounds?

6. I am perfectly content co-sleeping with Eliza.

7. I spend too much time trying to sort out in my head why some people are put off by a child with special needs.

8. I believe in karma.

9. I miss my Dad everyday

10. I think med school on Saba might be a good idea.


My 7 other honest bloggers are:

1. Abby

2. Bree

3. Sarah

4. Wendy

5. Vicki

6. Anneliese

7. Cora