Friday, May 23, 2008


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

2:00pm physical therapy and Sure Step fitting

10:30am - appointment with pediatrician
12:30pm - special instruction
4:00pm - physical therapy

6:00pm - aqua therapy

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.

Monday, May 19, 2008

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.

Thursday, May 15, 2008

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.

Wednesday, May 14, 2008

Parenthood Lessons #3

Reflections on Motherhood - The First Complete Year


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?