Back To School

AMINA'S BIG DAY
Today Amina started a new school: Best Friends Early Childhood Program at the United Cerebral Palsy Association of Philadelphia and Vicinity. Their program integrates special needs and typical children and they have a PT, OT, speech therapist and a nurse on site, so Amina can get all of her early intervention services there. Its typically a pretty tough program to get into due to long waiting lists from parents of all kinds of children eager to make sure their kids get quality daycare services and a little extra. We doubted that we would be able to get a spot until Amina was 2 or 3, but with a little prayer and a little luck they had a spot open for this fall.

WILLIAMS SYNDROME STRIKES AGAIN
Since it was the first day, we stayed with Amina for about an hour in the gym with her classmates and her teachers. ALL the kids were screaming as their parents tried to leave. One poor little kid screamed the whole hour. Another cute little boy was fine for a while, his dad snuck out and then about 20 minutes later when he realized he was left alone, he tried to make a run for the door out the classroom. Amina sat and looked around at the kids, and looked at us with sort of a concerned look on her face. She gravitated towards the little boy who cried the whole hour and kept trying to reach out and touch his head and his face. It was so sweet.

WORKING MOTHER GUILT
Amina is not the only one going back to school. Last year I decided that I wanted to go back to school for my doctorate. It was in the midst of us dealing with all of Amina's issues, so I wasn't sure if I was going to apply or wait for a "better" time (whatever that is). I ended up applying, just figuring that if I didn't get in, it wasn't the right time, and I would wait a few years and try again. Well, I DID get accepted so I am preparing to start school next week.

Lately, I have been feeling a lot of fear, anxiety and guilt about going back to school. When we started to sort out all of her medical issues, I took a job working part time so that I would have more time for her. I was going to the hospital at least 2 but sometimes 3 or 4 times a week for tests, therapy and other appointments so there was no way any employer would be able to accommodate me as a full time employee. Her appointments have lessened, and I have started to take more hours at work. With Amina at a school where all of her medical and developmental needs can be met, I think I will feel more comfortable being away from her, but I still wonder if I'll be able to do it. Time is already spread thin and when I am away from Amina I miss her and worry about her.

I hear its typical that working moms sometimes feel guilty about the time they have to spend away from their families and I know there are a lot of parents in my situation, but its just hard. I know that in the long run, getting and advanced degree will be better for our family, but right now it means less time at home and more expenses. Its was to the point that I was actually considering NOT going back. My husband thinks I'm crazy to turn down an opportunity to study at one of the best schools in the country, but sometimes I feel like maybe that degree is just another piece of paper and time away from Amina is what really matters.

BUT I DIGRESS...
This blog is supposed to be about Amina! Sooooo, for her first day, we stayed about an hour to help her (us) feel comfortable with the new environment. But after about 20 minutes, Amina reached out for one of her teachers, gave her a hug and turned around and waved "bye-bye" to us. Before we left we (I) went into a loooong spiel about how she only eats mashed potatoes and oranges and how she doesn't like to sleep, and how she'll never stay still on her cot to take a nap. Of course she made a complete liar out of us.

My little girl is growing up and I'm not ready for it!

Happy 3rd Anniversary!

Can it be that it was all so simple then?

I met my husband 15 years (and 40 pounds) ago when I was in 9th grade and he was in 11th. It was 1993. Gas was only 99 cent a gallon. You know you're old when you start equating years of your life with how much stuff used to cost. Of course at that time we had no idea that one day we'd be MARRIED with a FAMILY! Young love is innocent and uncomplicated...back then the biggest decision we had to make was which movie to see on Friday night. As the years have passed, things have gotten a bit more complex, with a house and a baby and bills sometimes we look at each other and wonder, "How did we get here? Seems like just yesterday we were going on the prom!" (I'll spare you all and NOT post the prom pictures...I was in my blond phase). But, at the end of the day I wouldn't trade our family or the last 15 years for anything in the world, we got each other AND Amina out the deal. Happy Anniversary!


As an aside, it was 2 years ago on our anniversary that I found out I was pregnant with Amina!

Manic Monday

I began my day in a mad panic because I couldn't find my wedding rings, frantically turning my jewelry box upside down only to discover the rings were...on my finger. Then later I was explaining to Ameen what a bad day I was having, and remarked "Well at least its Wednesday, week's almost over." He looked at me kinda funny and said, "Ginneh...its only Monday." Sigh.

Now before you go check me into the psych ward, I blame this on stress and sleep deprivation, and thinking it was Wednesday was probably some Freudian slip to avoid our appointment with the FEEDING TEAM at 3:00.

As my best friend Michelle so eloquently put it, "Sometimes you eat the bear, sometimes the bear eats you." I think you can figure out who's got the full stomach today.

The Feeding Saga Continues

So, as you can see from the picture, Amina likes lemons. She adds this to her list of preferred foods: KFC mashed potatoes, Boston Market creamed spinach, mandarin oranges, mum-mums, Golden Oreos, and of course Pediasure. Aside from those, every now and then we find a food she likes kind of by accident, but generally she eats mandarin oranges and mashed potatoes. EVERYDAY.

Amina's new Early Intervention OT recommended that we add a dietician to her EI team to make sure she's gettin enough nutrients etc. It's kind of funny because there's not much to talk about when she comes...just mashed potatoes and oranges.

Kids with Williams are more likely to have underdeveloped teeth with defective tooth enamel. Amina has four of the CUTEST teeth I have ever seen, and since I am terrified of bottle rot, we've been working on eliminating milk at bedtime. The Dietician told me that it was great that I was being diligent about trying to eliminate the nighttime bottle, but because Amina has those teeth now, I need to get rid of the bottle completely because the bottle is going to start to effect the movement/position of her teeth.

I think its important to point out that this is is opposite of what my favorite folks at the feeding team told me. They suggested that I NOT try to eliminate the bottle because that is where she gets her primary nutrition and calories and we definately did not want her to loose those nutrients, if she refuses to take the milk from a cup (which she does of course). In their defense, it was a few months ago that I saw them, so their position could change but its still frustrating to have all the professionals giving you contradictory advice. Just about every parent of a kid with Williams will tell you that feeding is an issue AND sleep is an issue, so you can imagine how much fun its been when the two issues are merged.

Amina's pediatrician also informed me that its time to take her to the dentist. And she actually said it with a straight face. I said, "You mean MY daughter Amina? The Amina who refuses to eat and can't sit still? The Amina who won't even let me brush her hair or wash her face? You really think she's going to cooperate at the DENTIST?" After a person spends their time and money going to dental school, I think they deserve better than having to deal with Amina's little funky attitudes.

Amina and I have discussed the dental issues and I have explained that oral hygiene is very important. She has agreed to brush (suck toothpaste off her toothbrush) twice a day.

Sibling Rivalry

As you can see, Amina and Sweets DO NOT feel the same way about each other. Thankfully Sweets has enough sense to just ignore Amina rather than scratch or bite her. I guess she realizes she'd be on a one way trip to the glue factory if she laid one paw on her. (Animal lovers I'm just kidding I would never send Sweets to a glue factory...I'd get Ameen to do it. hehehe).

**Oh, and in case you're wondering why Sweets looks like Mad Eye Moody, she has glaucoma in her left eye. So twice a day Sweets and I have a wrestling match just so I can give her her eye drops. Sometimes she wins, sometimes I do, but day to day you never know how its gonna go. As if one kid with medical issues isn't enough. Sheesh.

If by 'great' you mean she has a rare genetic disorder, has therapy 4 times a week & eats nothing but mashed potatoes, then yeah, she's TERRIFIC.

"If they ask about me, just tell them I'm CUTE that's all they need to know."

People I haven't seen or talked to in a while always ask, "So how's the baby?" I usually respond by saying, "Oh she's doing great!" Which she is most of the time, but in my head I'm thinking, now do they really want to know, or is "how's the baby" just something you automatically say to a new mom? It's like when you ask people, "how are you?" We kinda expect them to say fine, and if they go into a whole rant complaining about how their bunions are killing them, we're looking at our watch like, um yeah TMI.

Sooooo...depending on WHO asks and WHAT they ask, I guess that determines how much info I provide. Because she's getting bigger now, people are asking all the time if she is walking. When I say no, there's kind of an awkward pause, and at that point I feel obligated to explain that she has some medical conditions and she's a little delayed, etc. Generally, most people mean no harm, they genuinely do want to know how she is doing, but no one EVER expects that the answers to the questions they ask are going to be negative. So when I say "no" she's not walking or "no" she's not eating well or "no" she's not really talking they don't really know what to say.

It gets frustrating sometimes because on one hand I feel I have to defend Amina but on the other hand, I get tired of explaining myself all the time, so sometimes its easier to just say "she's great!" Which is true anyway because she really is great!

On a brighter note, Amina is crawling now, she's all over the place! Crawling and cruising and getting into things. Of course my house is NOT childproof and I have no excuse because I've even had more time than most parents since Amina has been a late bloomer. So that's what I'll be working on for the next week.

"So let me get this straight mom, you mean I'm NOT supposed to touch the things on the coffee table?"

I Know I'm A Slacker...

I know, I know...it's been a while. But in my defense, I've been busy! I mean look at that picture?!?! Can't you SEE how high maintenance my daughter is? This kid doesn't give me a minute to myself!

Shout out to my long lost friend Nancy for inspiring me to update the blog. Stay tuned for a whole SLEW of Amina updates over the next few weeks...