Monday, April 25, 2005

Adventures in Williams Syndrome, Part One

Hey, gang, my name is Mercedes and this is my maiden blogging voyage. It's daunting to write down all of my thoughts and concerns about my little boy and then shoot it out into cyberspace, but I'm thinking that cyberspace is exactly where this information needs to be shot.

My two year old son Niko was diagnosed with Williams Syndrome about a year ago. My husband and I had never heard of it, and were quite astounded at the unusual characteristics that it tends to entail. I performed an exhaustive search on the internet for information, which only succeeded to depress and horrify me. There's really not a lot known about Williams Syndrome yet, and the severity can vary so much that it's almost impossible to get a guideline of what to expect.

So of course, the information that I found wasn't really helpful. Reports contradicted each other, and many were so dry and BLEAK that I finally couldn't read any more. This was my BABY, and to come upon such hazy "predictions" for his future was pretty frustrating. What I really needed was a blog. I needed to hear from somebody who either had Williams themselves or had a child who had WS. I needed to cut through the medical jargon and hear somebody's real words saying, "Yeah, you know, this is what to look out for." Foundations didn't really interest me at that point, and the Mother's Groups I attended (not for Williams specifically) were real downers. I am not a victim. My son is not a victim. I do not in any way feel that we have been cursed with some horrible thing, and that people owe us. I wanted to read somebody's words from afar, so I could contact them if I desired, but I didn't feel obligated to. I wanted to be a silent sponge that soaked up their knowledge so I could take what fit and use it in my own life.

I haven't found anything like that, so I'm starting my own. After this beginning intro, I'm typing in entries from my Journal just as I wrote them at the time. So you'll be able to follow along with us as we make our new discoveries, and believe me, there's something that we learn every single day. But before I begin, I want to say three very important things that I wish I had known up front. It would have saved a lot, and I mean, A LOT of pain!

Number One: definitely keep a journal. Not only will it clear your head and heart out, but it's really useful for looking up the dates that things happened. When did they start their meds? How much did they weigh at the time? It also lets you see how much progress really is being made. I read my journal last night, and found out that almost a year ago exactly, Niko was going into kidney failure. Right this very second, he is holding onto my knees, growling. He has come such a long way since then!

Number two: If you notice your child itching him/herself, check out their calcium level. Niko has Hypercalcemia, where his body can't really use the calcium, and that is what was sending him into kidney failure. It's not something that people really check out a lot. A chance comment from a nutrition student sitting by me in the bleachers alerted me to it. It can be corrected fairly easily with diet and IV infusions.

Number three: This only gets better. Kids get older, doctor's get smarter, you get stronger.

5 comments:

Nisa said...

I think what you are doing is wonderful and I truly believe it will help many people if they take the time to read what you have to say. You've obviously been through a lot and have handled it extremely well. What doesn't kill you makes you stronger and you've certainly proved that. Your positive attitude is sure to raise the spirits of others and help them see that they can make it through any trial that comes their way. Thank you for taking the time to do this!

jesshaydel said...

Hi my name is Jessica Dares and I came across your post after googling williams syndrome blogs, yours was the first I saw and fell in love with. I am still continuing ot read.
My daughter Skylar was born 6.5 weeks early and from birth had developmental delays. The doctors continued to tell us oh she is delayed and to enroll her in early steps, an intervention. She was enrolled in this at about 14 months. She has been with therapist ever since.
Recently we moved to Missouri from Louisiana and went and saw a developmental delay pediatrician specialist. She express a lot of concern and sent us to a geneticists. We saw him this past week and when we walked him he could tell from just looking at Skylar he was almost positive it was Williams syndromes to the big eyes, to the bushy eyebrows, brow lin lipped, small spaced teeth, small weight gain, her pinkies are turned in and so forth. Than the delays on top of that and the fact that she has no sense in personal space she will hug and go up to anyone and hug them.
We are still waiting for the definite diagnosis but after a lot of research i believe this is it. It is hard for me to cope with right now that it can be diagnosed from birth and it took three years to get anything. Skylar has always looked different but no one said anyonthing of it. Ive never even heard of the syndrome until now. Sky fortunately doesnt have a heart murmur but they will check into that. Her calcium came back high so I took her off vitamins but she still scratches her thighs and upper arms and back a LOT! I hope you please respond I have a blog and I am following you and my email is jesshaydel@yahoo.com

Mercedes said...

Hi Jessica! I'm so glad that you stopped by! We were extremely fortunate that Niko was diagnosed so early, but that definitely isn't always the case. Quite a few children are three or four years old (or even older!) before they're diagnosed.

The number one thing that I want to tell you is that you are definitely not alone. When Niko was diagnosed, I felt like we were in some strange type of isolation. Nobody really knew what was going on, Niko had all of these bizarre symptoms that confused all of us, etc. But there are so many people whose lives are touched by Williams. There are so many people who truly understand. :) Welcome.

I'll email you!

Grayson' s Mommy! said...

Hello my name is Elisa Oglesbee and my 4 month old son Grayson was diagnosed with WS when he was 6 weeks old. I am in the whirl wind of docs appointments and therapy evaluations. While Grayson does not have any immediate medical needs he is being monitored for pulmonary stenosis, aortic stenosis, and a heart murmur. He also has a slightly higher calcium level along with low thyroid. While I have tons of medical support and advise. I find your blog comforting and very informative to know there are other people out there going through the same things. I live in a small town and have little resources available to me to learn more information on WS and am left to the internet which can lead to some scary and misleading information. I just want to say thank you for what you are doing it has helped me a great deal and I am only half way through your blogs. Niko is an adorable boy and i look forward to reading on and learning more about your wonderful family.

Mercedes said...

Hi Grayson's Mommy! I'm so glad that you're here! Ugh, I remember that whirlwind of doctor's appointments so well! There's a WS support group on Facebook, if you're interested. There are SO MANY of us. Also, you're more than welcome to friend me at Mercedes Murdock Yardley, if you'd like. Thank you for commenting!