Saturday, March 22, 2008

No Chicken Bones for this Baby

I don't know why, but people have been encouraging me to give my child chicken bones for like 6 months now, "Not to eat, just to get the flavor!" What kind of flavor could bone marrow, chicken grease and spit from someone elses' mouth have? That's disgusting! I think its a black thing. I'm black but I still don't understand.

I have realized over the past few months, that I took a lot of things for granted when I decided to have a baby. I guess no one really expects to have a child with special needs. But, even after I realized this was the case, I certainly didn't expect that she would have a problem with eating, of all things.

I can't say that anyone in my family has a problem with eating. Anyone, that is, except for Amina. In fact, I've spent most of my adult years trying to STOP myself from eating, and now, I have to send my daughter to a special clinic to help her to eat MORE. At 11-months-old when most kids are trying to grab french fries out of your mouth, little Amina can't eat anything thicker than pureed baby food and baby cereal or she will choke and vomit. I've been trying to give her different textured foods for a while, but I've slowed down a bit lately because I'd feel really stupid explaining to the social workers that my daughter choked because I was force feeding her cheerios. Its not worth it.

So we went to the feeding clinic where she was evaluated by like 6 more specialists, and we found that she was probably "volume limited" and they made us change her from Similac Isomil Advance formula (expensive) to Pediasure (rediculously expensive). And just when I was getting all excited about being able to buy regular milk instead of formula. It's like God's sitting somewhere on His throne looking down at us like, "Gotcha!"

I guess I should have known when she refused to eat the peaches that we were going to have problems. What kid doesn't like peaches? Amina of course.

Thursday, March 6, 2008

Parenthood Lesson #2

Everything I know about parenting I learned from my cat.

I used to teach a parent education and support group, which was totally rediculous because I was the only one at the agency who had no kids Every week I waited to get cursed out by some irate parent who would bring up the fact that how could I know what I'm talking about because I don't even have kids. Thankfully it never happened, but I could have saved myself a lot of paperwork and condensed the 8 weeks into these 10 simple steps.

1. If you make a rule, stick to it. Otherwise I will continue to harrass you because I know that you don't really mean what you say.

2. Separate sleeping spaces - you have your room and we have ours. You don't need to sleep in our bed.

3. Have compassion for all living things - you chose to bring me here so if I get on your nerves, essentially its your fault so don't bitch about me.

4. Clean litter box daily.

5. The power of touch - it feels good to be rubbed, cuddled and hugged, do it often.

6. Screaming is not effective - I will just look at you like you're crazy and continue to do whatever it was that I was doing.

7. Taking care of something other than yourself is hard work. I have needs and you better fulfill them.

8. Anything of value you have will be destroyed, so if you really love it, keep it away from me.

9. You should be happy there's just one of me because you wouldn't be able to handle anymore - think twice before you decide to bring another mouth to feed in here.

10. Unconditional Love - I will love you pretty much regardless of what you do to me. (Where along the span of development do we loose that?)

Spare Ribs, (Ginneh) Williams Syndrome and other punny genetic anomalies...

Amina at 29 weeks:
From the womb we knew Amina was going to be a special child, but we had no idea just how special. For the past 6 or 7 months, just about every month Amina is diagnosed with something different. It started off with colic - she would scream for 3-4 hours per night and there was no consoling her. The only thing that got us through was the vacuum cleaner. About 2 1/2 months through, her pediatrician told us that colicky babies are soothed by white noise. We went through a vacuum cleaner and 2 blow dryers playing white noise for hours at a time. I was happy that it calmed her screaming, but white noise is still...well, noise, so to me it was just as annoying, but Amina slept so it was ok. At the moment of conception my sanity was no longer a priority.

Anyway, after the colic week by week the issues came rolling in:
  • Torticollis
  • Low muscle tone
  • High muscle tone
  • Fine motor, gross motor & cognition delay
  • Fourth Nerve Palsy
  • Pulmonary Stenosis
  • Chiari I Malformation

(Notice how the sh*t gets harder and harder to pronounce?)

And to top it all off, we found out that Amina has 13 pairs of ribs instead of the regular 12 that most of us have.

We are fortunate to live in Philadelphia and have access to the Children's Hospital of Philadelphia, fondly known as "CHOP" for all of you out-of-towners. People come from across the country to access the state of the art facilities and omniscient doctors. Amina has 2 physical therapists, a special instructor, a neurologist, a neuro-opthamologist, a cardiologist and a pediatrician. I mean these guys are supposed to be really friggin' smart. Look at her opthamologist Dr. Liu:

I don't mean to be culturally insensitive but as Thembi noted, who wouldn't trust an Asian in a bow-tie? He just reeks of 1600 on the SAT's. Model Minority for god's sake. My problem is this, every doctor we go to says the same line, "Amina has (fill in the blank with random disorder) but as far as (random disorder) goes its not that bad." Not that bad? Are you kidding? My daughter's heart's not pumping right, her brain's crowded in the back of her head and she has double vision, but its "not that bad"?!?!?! Sometimes I wonder if any of them have children because I don't know what makes them think that they can talk about the prospect of a "simple" heart, brain or eye surgery, and think that any parent would say, "You know you're RIGHT Dr. Liu! Its not that bad!" Bowtie or no bowtie, I'm not buyin' it.

The intellectual in me realizes that from a medical standpoint, these docs see the worst of the worst with kiddies that are far worse off than Amina. But the parent in me is pissed that they minimize every issue. And, for those of you that are parents, you know that sometimes the parent in you trumps all rational thinking. (For those of you that aren't parents, think of that bad ass kid in your elementary school class whose mom always came up to the school all ready to cuss the teacher out cuz she just KNEW her kid wasn't actin up like the school said...same concept).

We are going for genetic testing within the next few weeks so the doctors can determine if there is some sort of genetic condition or syndrome that is causing all of her problems. Williams' syndrome is one possibility that the cardiologist mentioned. It's sometimes called the "pixie" or "elf" syndrome because the kids have elf-like features. Some people have remarked that she looks sort of elfish and could possibly have Williams'. Judge for yourself:

I don't know. I don't really see it. Maybe its just that parental denial. I'll keep you posted on what the genetic docs say.

Sunday, March 2, 2008

Labor and Delivery

Amina will be a teenager oneday. I've already started composing the speech I'm going to deliver every time she gets on my nerves, ahem: "Your father and I were perfectly happy before we had children. Do you know I was in labor for 24 MISEARABLE hours with you? And you treat me like this!? Look, at these pictures! Do you see how happy we were BEFORE I gave birth to you? And do you see what we look like AFTERWARDS? Ever since your arrival on this earth you've been causing us grief! Go to your room!" Still a work in progress but you get the picture.