Thursday, May 15, 2008

Paparazzi: photographers who take candid photographs of celebrities, usually by shadowing them in their public and private activities.


"Mom, I don't know how, but they found me all the way in Florida at Grandma's house. Is NOTHING sacred?"


More pictures of Amina on her mini vacation:

I guess with a name like "Amina Akbar" even babies aren't safe from airport security. If anyone knows what explosives could fit in a baby New Balance, please let me know.



It's clear she gets sick of all the pictures we take...Sorry Amina! I don't really care!


Aww...such a peaceful sleeping baby. Too bad its the calm before the storm, or after the storm or however the saying goes.

Amina loves the pool!

Baby drool is good for shining up those granite countertops.


Like father like daughter.

I really needed this vacation.

Wednesday, May 14, 2008

Parenthood Lessons #3


Reflections on Motherhood - The First Complete Year

WHAT DOES MOTHERHOOD MEAN TO ME?

Here's an overview of what I have learned in my first FULL year as a parent:

1. Before becoming a mother, I thought I knew what the words commitment, love, hurt, compassion, loyalty, dedication and sacrifice meant, but now I realize I was just scratching the surface. Its like when you become a parent, all of your emotions are intensified - you don't just love, you love HARD, and if someone or something hurts your child, it hurts you more than anything you could ever experience yourself. Your children's successes and failures become your own and you want to do everything you can to protect them.

2. All of the things that were really important to you before becoming a parent, become even more important to you. Your family in invaluable, your friends become your family, your financial security becomes less about whether you can splurge on that new pair of shoes for yourself and more about what you can do for your baby or your family now and in the future.

3. On a similar note, all of the things that were insignificant to you before, become even less significant. You have no energy to hold grudges, no desire to be around people that bring you down and no time to participate in idle gossip (well, except if its really good!)

4. Your time is precious. Sometimes I think about how quickly the past year of Amina's life went by and I start to panic, only 4 more years until she starts preschool! 15 years until she gets her driver's license! 20 years until I get to help plan her 21st birthday bash! I find myself rushing home from work early just to spend 5 or 10 extra minutes with her, when before I may have stayed 5 or 10 minutes later to finish up. Getting up in the morning doesn't seem so bad because I know I'll see that little goofy face. I'm sad on the rare days when I'm out late and don't get to see her before bedtime. I'm constantly brainstorming ways I can spend more time with her and less time with just about everyone else.

5. You want to nurture ALL children, not just your own. I work in a field where unfortunately I see abused and neglected children everyday. Before I had Amina, the social worker in me wanted to make sure the kids I worked with were "safe and had their basic needs met". Now, the mother in me makes me pull out my lotion to grease up those ashy elbows, buy a comb and brush from the store to brush those lint balls out, give you my sandwich if you're hungry, $3 to buy something for later and my cell phone number to call me if you need anything else.

6. You lose your tolerance for triflin' parents. As a parent who would do anything in the world to make sure my child has what she needs and wants, people who put their children behind themselves or their mate or their addiction make me sick. The social worker in me understands it, but the parent in me is disgusted by it.

7. The stakes are high. Raising children is the most important and most difficult job I have ever had. Trying to figure out how to manage my life and raise a productive member of society without screwing up consumes most of my time.

There's a ton of other things I can add, but these are the things that have been on my mind the past few days.

Amina was fortunate enough to spend the Mother's Day weekend with her mother and father, grandmother and grandfather and two great-grandmothers. Such a blessing because not everyone is lucky enough to have all that family around.


I know it's a little belated but Happy Mother's Day to all of you Mothers out there! What does motherhood mean to you?

Sunday, April 27, 2008

AMINA'S NIGHT AT THE MUSEUM!!!!



I was never one too excited about kids birthday parties, but I'll have to admit even I had fun at Amina's birthday party. I didn't really know what to expect, and to be honest it seemed like complete chaos to me at times, but the kids seemed to have a ball which was the whole point.
Thanks to all of you for coming and making the party such a success! And, a special, special thanks to all my family and friends who helped with the cooking, face painting, decorating, and arts and crafts. AND, I also want to thank all of you who brought all the TONS of gifts! It really means a lot to us that all of you always support all of our events and parties.

I'd like to send a special shoutout to Scooter and Lisa, who although are 2 of my favorite cousins, somehow manage to be absent from every family event I throw. Keep up the good work guys! Here's an update since you slackers missed it. We had:

FACE PAINTING




























ARTS AND CRAFTS







CARICATURES



















And of course, TONS of CUTE, CUTE KIDDIES:












































Oh yeah, Amina was there too:




Scooter, I hope Brazil was worth it. And Lisa, I don't know what makes you think CALIFORNIA was too far to come for all of this. One word guys "priorities" that's all I'm going to say.



Behind The Scenes: Amina's Night at the Museum



AMEEN: Ginneh, do you realize Amina's only 1?!?! What were we thinking? How much did we end up spending?

GINNEH: I don't know...we may have gone just a BIT overboard...

AMEEN: Did we pay the mortgage?

GINNEH: I think so...

AMEEN: How about At&T?

GINNEH: Hmmm...not sure about that...but at least everyone we've ever met in our whole life is here, so if our cell phones get turned off we won't need to speak to anyone for a while. We'll just send them the blog and they can email us, no one will suspect a thing!

AMEEN: True, true. Guess that means we better pay Comcast so the internet doesn't get disconnected.

GINNEH: Oh, shoot, yeah. Darn...You think Comcast takes Babies R Us giftcards?

Monday, April 21, 2008

What's That Number One Zodiac Sign?

TAURUS of course! (And I'm not just saying that because I happen to be a Taurus too!)


A year ago this time, this is what Amina looked like:

What a difference a year can make!

Amina was born on Saturday, April 21, 2008 at 1:14pm at Abington Memorial Hospital by Dr. Lisa Geer-Yan. I was induced because she was small for her gestational age and they wanted to get her out into the world to grow. I was in labor for 24 hours! I tried to go natural, but around hour 14 or 15, things started to get a little rocky and I got an epidural. Ameen and Tasha were in the room when I delivered and Tasha took pictures of the delivery (yucko). My mom got there about 2 minutes later. It was a beautiful, amazing and disgusting experience all at the same time.

Despite all of the ups and downs we've had this year, Amina has truly been a blessing and we couldn't ask for a more beautiful, wonderful, special child. She is and will always be our little princess. Thank you to all of you who have shared your time, your gifts, your prayers and everything else with us over the past year. We are looking forward to many, many more wonderful years with Amina and all of you sharing those joys with us.

In case you were wondering, Amina share's her birthday with Andie McDowell, Tony Danza, Queen Elizabeth, Charlotte Bronte, Sarah Michelle Gellar. (Nina Simone and Mark Twain also died on this date).

P.S - I bet you think Amina looks all cute in her little birthday tiara, we'll here's the scene about 2 minutes before:




Don't be fooled by that pretty face!!!















More pictures of Amina and her friends on her birthday:

Saturday, April 19, 2008

Team Amina

"Uh...mom, can you cool it with the flashes for a minute? I'm on the phone with my therapist. Thanks hun."

Amina has a TEAM of professionals that she see's every week:
- 1 physical therapist that comes to our house
- 1 physical therapist that we see at CHOP
- 1 physical therapist that she sees for aquatherapy
- 1 special instructor that comes to our house

All this is in addition to her neurologist, neurosurgeon, cardiologist, geneticist, pediatrician, Williams Syndrome specialist, and feeding team which consists of a nutritionist, occupational therapist, speech pathologist and nurse practitioner.

They are all very nice people, but some she likes more than others. By the end of the week I can imagine that she's tired of people picking with her, so sometimes she refuses to cooperate. Now, you may be wondering how a 1 year old baby can refuse to do something...I really can't explain it, you just have to see it to believe it.

Here's a few pictures of Amina with some of her "team"


AQUATHERAPY with PT ABBY














































PHYSICAL THERAPY with PT KRIPA














Friday, April 18, 2008

Amina Deep In Thought


From her first days on this earth, Amina would give you this look like she was staring through your soul. I know that sounds a little cliche, but its true. She's always been so intense and serious. She's friendly and smiles a lot now, but she's definately going to give you the once over before she becomes your friend. Sometimes she just puts her little hand on my face and stares in my eyes and I wonder, "What do you see little girl? What are you thinking about?" I definately think she knows some things that I don't know yet. I can't wait until she starts talking so she can finally tell me what's on her little mind.

Thursday, April 17, 2008

The cutest kid in the world



I don't really like sharing my dairy products, but there's nothing cuter than a kid eating ice cream.

Too bad I didn't know last weekend when we took this picture that she had Williams Syndrome and I should limit her calcium intake. Oops.

I'm sure there's many more worse mistakes I could have made. Next time we go to Bredenbeck's, we'll go to the side with the cookies and cakes instead of the ice cream. Its all about creative parenting.

And The Winner Is...

I hate to say I told you so but...

Williams Syndrome.

Thembi and I diagnosed her MONTHS ago thanks to Google and Wikipedia. Who needs diagnosticians and genetic tests when there's the internet? We've been referred to another doctor: Dr. Kaplan who specializes in Williams Syndrome.

We are preparing ourselves to raise an overly friendly, emotionally sensitive, musically talented daughter with a bad heart and bad teeth.

http://www.williams-syndrome.org/forparents/whatiswilliams.html

Wednesday, April 16, 2008

I worry about these two



I'm not sure where this relationship is going, but I'm watching it closely.

Thursday, April 10, 2008

Pronounced: Kee - Ar - Eee


We saw the neurosurgeon, Dr. Sutton today. He was supposed to be advising us on whether or not Amina should get the surgery to fix her Chiari Malformation. Basically he said that she does have a lot of issues, and surgery would probably help, but we can never be sure, but if it was his kid he'd probably do it.

WTF? Dude this is BRAIN SURGERY?!? You're going to have to give me something a little more concrete then it would "probably help" before I let you cut my kids head open. I guess you WOULD go ahead and do it if it were your kid...you ARE a BRAIN SURGEON after all. Who better than to perform a brain operation than a neurosurgeon that just happens to be your dad?

I really try to be thankful that we live in Philadelphia and have access to CHOP doctors (that's Children's Hospital of Philadelphia for all you out-of-towners) and optomistic about all the treatments that are available to us but sometimes I'm feel like if I see one more doctor I'm going to lose it.

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.

BEFORE:


AFTER: