Daddy's Girl

What could be sweeter than a little girl and her daddy?

Father's Day gets a bad rap, so I'm personally taking some time out (never mind the fact I'm 3 days late) to shout out all the dads out there. Father's Day approaches and no one rushes to the mall to find the perfect gift. Year after boring year, dads all over the country get ugly ties, wallets or cologne and never complain - they take it all in stride. Dads love their kids as much as moms but for some reason get half the credit, half the accolades and half-ass gifts on father's day. Its really not fair. Today I'm proposing a movement to change the way we celebrate father's day! Next year is your year dads! Everyone who reads this blog: start saving now and buy your dad a really NICE wallet next year!

I knew Amina was destined to be a daddy's girl. She takes after her mother in that respect. I have been so blessed to have a wonderful father in my life, who is always there for me, loving me and supporting me in everything I do. I am happy to say that I think Amina will feel the same way about her father. Sometimes I sorta get the feeling that Amina has maybe taken my place in my dad's heart, but if I had to step aside, I'm glad it was for her. Both of my grandfathers passed away when I was too young to remember, so I never really had that special grandfather/granddaughter relationship, but I always wanted it for my children. Amina is blessed to have both of her grandfathers around to love and spoil her.

Amina Endorses Sure Steps

When Amina first got her Sure Steps I was doubtful. When Abby, her PT put them on her and pulled that strap tight, Amina yelped so loud I was convinced that after a few weeks of wearing those things, my daughter would be well on her way to having lotus feet that would make any Chinese aristocrat jade with envy.

I am pleased to announce now, however that after a few days, Amina was used to them, they aren't too tight and they actually do a remarkable job improving her pronation and stabilizing her balance. Within a week she was more comfortable pulling herself up, crusing and even standing on her own for a few seconds. We are crossing our fingers, but it looks like she may be walking within the next month or so!

Oh, and they don't come in fuschia, but they do have cute little pink and purple flowers on them and we've been successful in making them work with her summer ensembles. :)

Strasburg Railroad

Those of you who know me well, know I'm a city girl at heart, but I will admit that its nice to leave the skyscrapers, smog and escalating murder rate behind for a while and enjoy the outdoors. Our trip to the Strasburg Railroad and Cherry Crest Farms with the other families of kids with Williams Syndrome was actually lot of fun. It was HOT (and for once I was kind of happy that Amina couldn't walk yet so I wouldn't have to chase her around!) but the kids had a ball and it was great to be around other people who understand what you're going through. The kids were adorable all the families were friendly and so open and willing to talk about their kids and families which was great. Shouts out to Heather for organizing the trip!

What was interesting, however, is that me and Ameen seemed to switch roles somewhat on how we feel about Amina's diagnosis. I had been the one dealing 'well' with her diagnosis and Ameen was the one that has struggled a bit with it. After the trip however, he said he felt so much better. He got the chance to see the other children and talk to other fathers. I think he realized that although Amina was going to have some health concerns, she would still have her stregnths and weaknesses just like every other kid, we just may have to work a little bit harder on her weaknesses.

For me, it took me a while to process how I was feeling, but over the past few weeks I've been able to come to terms with what those feelings were: sadness, anxiety, worry, fear of the unknown. I think subconsciously I had the idea that although Amina had a lot of hurdles now, that we would just overcome each one, and never look back. I think talking to the other parents made me come to terms with the fact that Williams is going to be an ongoing factor for the rest of her life and even if she does overcome some issues, there may be others down the line that we will have to deal with. I see that although some children may struggle more with social aspects, others may have more health issues and others still may have more behavioral concerns, but no matter what, it's likely that its going to be something, and I worry about what that "something" is.

I try to put things in perspective and realize that even with "normal" kids, you could still end up having to deal with all sorts of issues. And maybe by knowing that Amina has Williams' we are at an advantage because we actually know what to look out for as she develops. Still, when I make those trips to the hospital each week or I'm attempting to give her the fifth different food at one feeding that she's still refusing, I can't help but think of all the other fun things I would rather be doing with her. Don't get me wrong, I LOVE taking care of Amina with all that it entails, but it does get tough sometimes.

Whew. Now that that mood swing has passed...I just want to let y'all know that if you ever want a fun day trip for the kids, Strasburg and Cherry Crest are fun and inexpensive and close enough that I didn't have to spend Amina's college fund to fill up the tank. (Ok so, secretly, still I wondered how it was that we could drive all the way to Lancaster and not go shopping at the outlets, but it was still worth the trip).

"Don't everyone's eyebrows "flare" in the middle?"**

Williams Syndrome is caused by a deletion of genes on the 7th chromosome, which causes many health problems and similar facial characteristics. (The genetic disorder that most people are probably familiar with is Down's Syndrome which is caused by an extra set of genes on the 21st chromosome. Kids with Down's also have health problems and similar facial characteristics.)

When we took Amina to the Williams Clinic at CHOP, I asked Dr. Kaplan if she thought Amina had the typical William's Syndrome facial features and she said Yes! Which is how she was able to pick Amina out of the waiting room of 4 or 5 kids. She said that Amina has the puffy eyelids, chubby cheeks, flared eyebrows, small upturned nose and full lips. I'm thinking, "flared eyebrows? what are you talking about lady?" But I'm also thinking, those are all the things that make her adorable, but what do I know?

I hope it's not illegal to use another kids picture on my blog, but anyway, when I was first looking up Williams' Syndrome, and I found this picture, I almost fainted because I thought she looked so much like Amina:

It has been really interesting to me, talking to other parents and reading other parents' blogs about their children with Williams. Its also amazing how these kids look like each other, but still look like their parents. I'm finding genetics really interesting these days and wishing that I had paid more attention to Mrs. Bratspir in high school biology. I read on one website that the older the kids get, the more pronounced their Williams facial characteristics become. I'm anxious to see how she changes as she gets older.

This weekend we are going on a trip with other families with kids with Williams. I wonder how I will feel with a group full of little kids that look similar to Amina. Will it feel weird? Or maybe it will feel comfortable, like when you go to a family reunion and see long lost relatives. I don't know but I'll keep you posted.

**(title of post taken from a quote from another parent on Williams Syndrome listserv)

TGIF

This was a busy week and we are glad its over!!!

MONDAY

2:00pm physical therapy and Sure Step fitting

TUESDAY

10:30am - appointment with pediatrician

12:30pm - special instruction

4:00pm - physical therapy

WEDNESDAY

6:00pm - aqua therapy

THURSDAY

3:00pm - feeding team

We also received the results of the renal and bladder ultrasound. CHOP is so 'efficient' that we will receive the test results before the doctors get a chance to review them and call us. So, of course, then in my neurosis, I have to go on a google/wikipedia/medhelp expedition to try to decipher the medical mumbo-jumbo written on the results. I know what you're thinking, "why don't you just call the doctor?" I do that too, but I have to prepare myself and google does a fine job of that thank you very much.

The results showed that Amina has some mild calsification in her kidneys which could be the beginning stages of kidney stones. Apparently this is also common in Williams' Syndrome. No treatment is needed at this time but we have to limit her calcium intake.

Put That In Your Pan And Fry It

Oh yeah, the feeding team had some recommendations too (surprise, surprise). They said that Amina is underweight for her height and has a limited food intake. They want me to give her a calorie supplement called Duocal which I need to mix into her food and pediasure 4 times a day. What they neglected to mention was that it costs $89.00 per case, which in addition to the Pediasure should pretty much put us in the poor house. And, it has to be ordered online. This left me wondering, what do families that don't have computers or $89.00 to spare give their kids?

They also suggested that I boost her calories at meal times as much as possible. The handout they gave me states I should add "heavy cream, butter, margarine, mayonnaise, cheese, powdered milk or sour cream" to her foods. Sigh. There's so many things wrong with this I don't even know where to begin. First of all, everyone else in the house (well maybe just me) is trying to eat LESS of all of those things, and now I have to make SPECIAL MEALS loaded with FAT for Amina. Second, just about all of those things have CALCIUM!!! Third, when's a good time to start worrying about clogged arteries? I'm no dietician, but I just can't understand how too much of that stuff is bad for the general population but for a one year old, its all good?

Maybe I can just save some time and money and just give her melted butter and EVOO in her bottles. Or better yet, I'll just let her roll around in some gravy and hope she injests some. Or lard! That's got to be loaded with calories. Yeah, I'll just give her lard patties for breakfast, lunch and dinner and see if that doesn't fatten her up some. DID ANYONE EVER CONSIDER THAT MAYBE SHE'S JUST GOING TO BE (GASP) THIN????

I'm glad the week is over. I know I said it before, but its worth repeating. And I'm glad I don't have to meet with those loosers at the feeding team for another 6-8 weeks.

Do Those Come in Fuschia?

At the recommendation of her physical therapists, Amina got fitted for her Sure Steps today. Sure Steps are little leg and ankle braces that will help improve the coordination and balance of children with low muscle tone, like Amina.

The guy that measured her said next week he'd give me a schedule of how long she should wear them everyday. I told him I didn't really think they would go with all her open-toed summer shoes but I would incorporate them into her summer collection as best I could.

Life Becomes Her

Today I read a comment that someone posted, I don't remember it exactly, but the gist was that they had met many more people WITH their child than they would have ever met WITHOUT him. I realized this true for me too. Parenthood is like a little club. And parenting a special needs kid is like being a member of an exclusive club with all the cool people. (As you all know, I'm exclusive and cool, so quite naturally I was going to be a member.)

It has been amazing how people you don't know and probably would have never been in contact with otherwise are so open and sharing intimate details about their family's lives. In just a week, thanks to some kind words and encouragement from other parents of kids with Williams Syndrome, I've stopped feeling like a freak and more like I will actually be able to handle raising Amina. (Sort of)

I am looking forward to meeting other parents and kids with Williams and exchanging notes on what they do when their kids are screaming bloody murder in public, or waking up in the middle of the night, or refusing to eat out of a spoon and wanting to feed themselves even though they can't really chew and choke when they eat thick foods or not wanting to use a sippy cup and wanting to use a regular open cup even though they spill stuff all over the place then mommy has to clean it up and we're already running late to physical therapy and it's your 4th trip to the hospital this week because of all the appointments and...wait, what was I talking about again? Oh yes, it will be nice to meet people with similar issues and concerns.

I'm turning 29 today and I have been reflecting on all the blessings/obstacles/adventures life has thrown my way...and the best one of all, of course, is Amina.

What next?

Kids with Williams syndrome have a higher risk than normal for kidney problems, so at the recommendation of the Williams Clinic, today Amina had a renal and bladder ultrasound. Normally, I wouldn't worry, but for every other appointment and test that we've had that was supposed to be just 'precautionary' (neurology, opthamology, chest x-ray, MRI, genetics, FISH test etc.) we ended up with something wrong. Supplement that with the fact that she's been suffering from constipation for almost her entire life, I'm a little scared about what they might find. Keep her in your prayers!

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.

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?

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?

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:

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