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...

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?