500 Square Feet

500 square feet can serve you well sometimes, especially as the parent of a "preschooler with disabilities." Now I know some of you are sitting there with the old raised eye brow wondering what on earth I am talking about.

Eliza and I live in a small apartment, a very small apartment, a 500 square foot apartment. It is a happy, cheerful apartment. It served me well during my single, childless years since it is rent stabilized (only New Yorkers know the value of this) and was ten steps or a ten dollar cab ride from some of the best restaurants and funnest (is that a word?) bars in NY.

It is also 500 feet from the NICU that Eliza lived in for 100 days. I can see the NICU windows from my bedroom window.

But do you know the real value of that 500 feet? It means that I live in a city that does not make me beg and scrounge for EI or CPSE services for Eliza. The worst meeting I have ever sat through was 2 hours but that was only because of a bum copy machine. Eliza has never been denied any service she has needed. I have never had to beg or argue for a service. I am shocked on a daily basis when I read about families, not 50 miles away from this 500 square feet who have to go through untold number of hoops just to get some speech therapy. Now I have admittedly been lucky in that Eliza and I have always been part of YAI, but that fact alone cannot account for the disparities I hear about everyday.

So the next time someone suggests I drop down roots in the Garden State or high tail it to the "Island of Long" I will as always so "no thanks." There may be a 4 bedroom 2 bath house awaiting me, but I'll take Central Park and great EI and CPSE services any day over yet another bathroom to clean :)

Getting services for disabled preschoolers is kind of like getting good health care. You will never know how much your CPSE or health care insurer truly sucks until you need to use them in a big way.

Here's to hoping that 99% of the readers have no idea what EI or CPSE services are!

A Note For Mal

My wonderful friend Marilyn (Auntie Mal) recently returned from a trip to Thailand where she got to spend some up close and personal time with actual Asian Elephants. Mal seemed a bit disbelieving when I told we too had spent some time with an elephant and other wild life.

So Mal, here is what we did and saw on our "safari:"

Happy 101

Here is a lovely little award from my fellow blogger Amber.



The Happy 101 Blog Award Rules are as follows: List 10 things that make you happy, try to do at least one of them today, and tag 10 bloggers that brighten your day. For those 10 bloggers who get the award, you then link back to my blog and create your list of things that make you happy.

1. Watching Eliza sleep (this does not occur too often!)

2. Listening to Eliza laugh

3. Coffee... and lots of it

4. Crocheting (yes I need to get out more)

5. Saba

6. Leaving a doctor's office

7. Volunteering

8. Friends

9. Traveling with Eliza (really ... she is quite good at it)

10. Blogging

Surely there are more than 10 bloggers who make me smile, but rules are rules:

Sarah
Sarah
Sarah
Sarah
Sara (who secretly wants an "h")

Noticing a pattern here?

Abby
Liz
Cora
Keira
Billie

Pillow Fights and Bad Hair Day

Eliza is quite content to spend a rainy day pillow fighting. Her hair of course doesn't take well to the pillows:







Eliza's latest fashion statement is her "birthday cake" hat. Yup, we even wear this outdoors. Quite sporty, don't you think?



As you can see though, Eliza's right sided facial weakness is still apparent, particularly when Eliza is laughing, crying or just plain tired:






Go figure. It is getting better, but the rate of continued improvement seems to have slowed.

I have Eliza's annual IEP next week. Always a fun time! I am hoping it goes smoothly. I have been quite lucky so far and not had any real difficulty gettin the services Eliza needs. At this meeting we will hopefully just continue Eliza's current speech, OT and PT, add two more outside speech sessions to work on her oral motor skills and have a dedicated one to one aide assigned to Eliza for school to primarily assist at lunch and snack time.

FIFTY/FIVE-OH/50/HALF A HUNDRED/TEN TIMES FIVE

Eliza has been home from the NICU exactly 1300 days and (drum roll please) last night she slept through the night for the fiftieth time! That is 50 people!

This is VERY exciting news to me, the woman who has not slept through the night in 1250 of the past 1300 nights.

Actually, if you add in the 100 nights in the NICU, that makes 1350 sleep disturbed nights (note to those people who told me how "lucky" I was that Eliza was in the NICU since I didn't have to wake up at night for her: parents of kids in the NICU do not sleep through the night).

And if you add in the 28 nights I was in the hospital before Eliza was born, that makes 1378 nights out of the last 1428 nights that I have not slept through the night.

Now that I am doing this math, I am not really certain there is much to celebrate here :)

Hats and Pet

As you can only imagine, New Year's Eve for a single mother and preschooler is not exactly filled with a trip to Times Square to watch the ball drop. While we may not have had the usual festivities, we had hats!



We had Happy Birthday New Year's Eve hats:







We had Magician New Year's Eve hats:





We had Painting New Year's Eve hats:





And then we had Pet:



Pet is a new addition to our household and is, thankfully, a nice stuffed plush Guinea pig courtesy of Ikea (and $3.99). After the big New Year's Eve hoo-ha, cousin Bonnie, Eliza and I braved the wind swept river to venture to the Redhook, Brooklyn Ikea. We love Ikea. They are Swedish: they let kids like Eliza ransack the toy section and no self-respecting Swede would ever raise an eyebrow when Eliza hoists her bottle at the age of almost-four.

Eliza has never really taken to stuffed toys. Normally she finds them kind of creepy. But not Pet! And yes, she has named him "Pet." This should not be odd to those of you who know that my cat was named Cat.

Pet and Eliza had a wonkingly huge breakthrough today:

Eliza ate four bites of banana and then she shared the rest with Pet (yes, she placed Pet exactly where you see him).

Oh I know some fine readers are saying "puh-leese, her first bites of banana were at age almost-4?" Why yes they were! Sure the average 24 pound 15 month old scarfs down a few bananas a week, but this little 26 pound almost-4 year old ate her first banana today.

Eliza may never try another banana as long as she lives, but today, January 4 2010 is the day Eliza and Pet shared a banana!

How Much is That Baby in the Window (a/k/a the Plastic Box)?

With the debate on health care raging, it seems everyone has an opinion on the cost of saving a preemie's life. The articles that have cropped up seem to all involve the cost of saving micropreemies and not later term preemies. Later term preemies can often be gravely ill with equally high costs of care, but I suspect the media would view it as unseemly to suggest that we not make costly efforts to care for a gravely ill 4 pound 34 weeker. It is far easier for those in the media to focus the debate on 1 pound 24 weeker micropreemies since, to those fortunate enough not to belong to this select club, 1 pound babies are not very baby-ish in appearance and make for better fodder for their arguments and present a far more compelling photograph for their articles.

Another micropreemie mom shared this latest article with our little band of micropreemie parents.

I am always struck by articles that apply a cost benefit analysis to health care and am always left wondering: "has the author ever had to face a catastrophic health crisis in his or her life?"

About a year ago I had a very unpleasant conversation with Eliza's "personal" claims person, kind of like a personal shopper but not nearly as helpful. Our goals were clearly at odds. I wanted Eliza's formula covered and she would only approve coverage if I had a g-tube placed, but not if Eliza drank the formula orally. Ultimately I won, with a constant battle every three months to continue coverage. But during that conversation the woman said something to the effect of "well Miss Richter I see we have spent over $2.3 million in the past 3 years" (even NICUs, hospitals, doctors, therapists and pharmacies are more expensive in NYC). I paused, and then told her that "health insurance, like life insurance, is a bet and United HealthCare Oxford lost this bet. You bet that everyone will be healthy, the same way life insurers bet that we will live to be 100. You lost this bet and lost it badly." I also pointed out that I had unlimited lifetime coverage and had no intention of ever switching carriers. She pretty well shut up after that.

I think, like it or not, we have always had a health care system, whether you are publicly or privately insured, that is constantly weighing the value of a life by the cost to maintain a life.

At the same time I was having that conversation with one of UHC Oxford's finest, my father was dying of Alzheimer's. Alzheimer's is an awful disease with no cure, limited methods to put off the inevitable and it sucks the life from you each and every day as your brain basically melts away. It is not the happy disease with smiling, elderly people gently fading away that TV portrays. One day you forget who your wife is. The next day you forget how to eat. My father thankfully knew what his future held early on and had a very detailed advanced directive which clearly stated he wanted no support at all, not even IV fluids at the end. Ultimately my Dad died of kidney failure, with great hospice care and in no pain. But despite his wishes I had innumerable people say to me "aren't you going to put him on dialysis?"

The irony of all of this struck me at the time since my father's insurer, Medicare and Medicaid would have paid endless bills for endless care to keep him alive when he did not want to be kept alive, yet my very expensive insurer was refusing to pay for Eliza's very necessary, life-sustaining formula.

I am always at a loss to figure out who makes these decisions in the health care industry. An actuary? A bookie? Whoever it is, I am firmly convinced that he or she (or "they") have never had a catastrophic medical crisis in their family. I am also convinced that the authors of these articles that focus on the "conundrum" of the cost of care for micropreemies has never actually had to face that particularly awful conundrum and for that alone they should be eternally grateful.

There are many, many parents who make the heartbreaking and painful decision not to resuscitate their children or have to face the decision to discontinue care for their critically ill infants and to offer palliative care. I am very certain that when these decisions were being made no one was thinking of the cost benefit analysis.

I am not advocating resuscitation of infants at all non-financial costs, but rather advocate that each situation be uniquely evaluated. THIS other article seems to take a well reasoned approach to evaluating each neonate before making a decision to render or not render care. Is there an edge of viability beyond which nothing can (or should) be done? In my opinion, yes. But once the child is beyond that edge, deciding whether or not to render care based upon a cost benefit analysis is just wrong.

I harken back to the family member who actually suggested that we should look for a kidney transplant for my father when his kidneys were failing. I firmly told them that if my father could speak he would consider it a waste of a good kidney and would rather have that kidney go to someone who could use it to enjoy a good, full life.

This was not a decision based upon a cost benefit analysis, but rather a life benefit analysis and that is the way I think all health care decisions should be made.