Archive for the ‘Williams Syndrome’ Category

How’s Your News - My Review

Monday, February 9th, 2009

I have to say that the show last night was everything I hoped it would be in all areas except for one…I wished it was longer than 30 minutes. I had great expectations for this show, and it completely exceeded those expectations. To accurately describe what I was hoping for, though, will require a fairly lengthy explanation.

I think I’m a pretty open-minded person. I don’t get offended by very many things, and I am not terribly concerned with being politically correct. I like to laugh at off color remarks, and I enjoy a lot of completely tasteless jokes. I’ll even admit that I have enjoyed some jokes about the misfortunes of others, and I’m not above laughing at jokes made at my own expense.I try to not take myself too seriously, for many reasons, but mostly because I realize that the world does not owe me anything. I have the right to “pursue happiness”, which does not mean that the world is supposed to make sure I’m happy.

I think too many people in this country misunderstand this right, and have become self absorbed and whiny, and spend way too much time worrying about who they might offend. We also have the right to free speech, which people seem to have forgotten. These are things which make this country great, and you can’t start making exceptions, no matter how well intentioned you are, because then where would you draw the line? And who says when to draw the line?

I’m not cold-hearted, or unsympathetic, or mean…I’m equal opportunity. Why wouldn’t I laugh at someone for doing something funny just because they’re “different?” And why should I feel awkward about it? They’re people too, and they have just as much of a right to act like a jackass as I anyone else. I think that’s my big thing. Just because someone is missing some genes, has a weak chin, or is missing one leg, has 4 nipples or pees the bed until they’re 12, shouldn’t make them exempt from the trials and struggles, joys and rewards that everyone else goes through. If you treat a child like they’re weak and unable to defend themselves, that’s what they will be. If you challenge them, and let others challenge them, you might be surprised at how well they can handle themselves.

This is actually a fairly edited version of my thoughts on this topic, but I did want to give some explanation as to my feelings on the treatment of people with disabilities. The short version is that I was worried, because of these beliefs that I hold about the way the world works, that this show would not get off the ground due to some public outrage at the treatments of the show’s stars. With all of this being said, I was really looking forward to the premiere of How’s Your News. I was so excited because they was finally going to be something that would let the general population of this country see people like this, knowing full well that they would be taking a chance that they would “fail” and be “laughed at.” They deserve this. Why shouldn’t they be allowed to be entertaining and funny? We can’t they be silly? There is absolutely no reason that they should not be able to go out and make fun of themselves, or let other people laugh at them. They’re adults, and if they’re happy with what they’re doing, why should we worry about it? This is an amazing opportunity for these people, and we should all be happy for them. They have a job. There are millions of people in this country right now who can’t say that, so I think they’re pretty lucky.

I thought the show was done really well. It was funny, and definitely had some send-me-into-the-giggles moments. Like when Sue is talking to the guy about the legalization of marijuana, and as he rides off, he says “I’ve gotta go smoke some pot,” and the look Sue has on her face. Or when Jeremy is talking about being really excited to see Michael Bolton. I got really tickled when all I could understand of what Bobby said for like five minutes was “Boo-yahh!” And I love how Sue curses like a sailor.

The thing I loved most? That they were real. They were fun, funny, sweet, crass…that’s what people are like. Those shows about people with disabilities that make them all seem like heroes are great I guess, and it is good to recognize the struggles that come with disabilities, but I always felt like they forgot the life that happens in between the “hero” moments. Why do we have to focus on the extraordinary? I think that makes people feel more like a “story” than a real person. How’s Your news shows you the life, and the trivial, not quite so “Lifetime movie” moments in the lives of these people. And I love it :)

And here’s what I hope that this show will accomplish, if nothing else: when people see someone like this on the street, they won’t immediately ignore them or turn away in disgust. Maybe this will get enough exposure for people who are different that people won’t think as much about it when they see them in real life. They won’t be so taken aback when they’re spoken to by someone with Down Syndrome at the bus stop, or when someone with cerebral palsy comes to their yard sale. On the other hand, maybe people will see that they don’t always need someone to think for them and treat them like fragile little porcelain dolls. Maybe they’ll just treat them like they would anyone else. For better or for worse, at least it would be equal. And as parents, isn’t that the best we can hope for?

Now, the part I was debating on whether or not I should write down…the reaction the show gave me that I wasn’t counting on. I look at Maggie for hours everyday, and only about once a week do I look at her and see Williams Syndrome. I see the pictures of kids online, and in the WSA brochures, and I know she looks like them, but I don’t usually see it. I see Maggie. And even though we have therapy three times a week, and I’m always paying medical bills for her echos and check ups, and thinking about our next trip to Kentucky, I don’t think about WS that much. I’m blessed with a daughter who is doing pretty well, and my own ability to tune things out until I need them. Watching How’s Your News broke that a little. Why is it more real after seeing someone with WS on MTV? Today, I saw WS in her face. I saw it in the way she was holding her hands out in front of her when she walked, with her elbows bent and her little wrists limp, kind of like a TRex. I know she has WS…but even though I know it, certain things will happen every now and then and its almost like it hits me just like it did the day we found out about her SVAS and heard WS mentioned for the first time. Maybe I do too good of a job treating her like a typical kid, and I forget sometimes that she is missing a few pieces that ought to be there. Maybe I’m still in denial, or maybe I’m coping exactly like I should be. Its just weird when something hits so close to home.

But, regardless of that whole thing, I still thought the show was awesome, and I was glad I watched it :)

How’s Your News!

Sunday, February 8th, 2009

How’s Your News premiers tonight on MTV! Please check it out, as there are three guys with Williams Syndrome on the show, and I’ve heard its probably going to be pretty funny. Its apparently not the standard show about people with disabilities, where they chronicle their struggles and shows uplifting tales of love and determination. The big question is: Is it offensive? I haven’t seen it, so I don’t exactly know what to expect, but I’m going to post a review about it later tonight or tomorrow, and go over all of my thoughts on the situation.

Here’s the link to the site:

Please watch, at least to see what it about, and to support these awesome, funny people :)

Maybe a little too much bacon

Wednesday, June 11th, 2008

So a quick update while Maggie is sleeping.

Maggie’s eye doctor (ophthalmologist?) appointment went well yesterday. Except that we had to wait over an hour in a hot waiting room full of really loud kids in chairs with no backs that were pushed up against a huge fake flower arrangement that was sticking in the back or our heads, it was great. Really, Maggie was very well-behaved, and super patient, and she was so good when they were checking her eyes. The doctors and nurse said that she needed to teach the other kids how to be such a good patient, and they went on and on about how cute and happy she was. I never get tired of hearing that. Don’t think I ever will. Her eyes are apparently fine, and while she may be a bit near-sighted, they said they think she’s good, and they’ll see her back in 6 months for a follow up.

Now the coolest thing about this appointment was that the ophthalmologist has a really good friend with a son who has WS. He said this friend went to school with him, also an ophthalmologist. The son is in his 20’s, and doing very well. This is the part where I got confused. The doctor either said that the son with WS has 5 children, only one of whom has WS, or that the son with WS is the only one of the friend’s 5 children who has it. I wanted to ask more, but we were so hot and tried, and Maggie had not had a nap all day, and we really wanted to get home. I plan to ask him more the next time we go.

Wow, this update ended up not being so quick.

Tyler’s new band is playing on Friday at the Whig. The band is called “Animal Husband’s Puberty Ritual,” and I think its about the worst band name I’ve ever heard. They’re apparently not going to have any specific style, and not really have an exact roster of members. I guess its going to be a jazzy, psychedelic, techno rock band with a rotating cast. I’m not too upset that I’m going to miss the show on Friday, but I am kind of sad that I went get to see them giving out dried chicken feet. I just want to see what the audience in this small club thinks about a band that doesn’t really have songs and gives them gross, dried, animal parts. These boys have a weird sense of humor.

So, that brings me to me…I’m crazy busy with work, tired of cleaning, thankful for Joe Mac (Maggie’s great “manny”), thankful for my dad (who can fix anything and work for free as my “grunt” happily), aggravated with my husband (who tries, but doesn’t seem to understand everything that I have to handle on a daily basis), in love with all of the new cute things that Maggie is doing, and constantly amazed that I have still not been driven to a breakdown. I’m glad I can get into the mind set of just “get it done”…because I think if I really stopped for too long, I would get stuck in a hole. The good thing, is that I always have Maggie to pull me out if I start getting down. She’s always the light of my life :)

Oh, and I am thankful for bacon crackers. Question: What could be better than a captain’s wafer wrapped in bacon, covered in cheese, and baked? Answer: not much.

What kind of pretentious jerk do you think I am

Wednesday, May 21st, 2008

Today I got something for me. Its technically for my work, but I look at it as a little present to myself. I got a BlackBerry, and I’m attempting to use it to write this post. I used to think it looked kind of pretentious to see that little “Sent from my BlackBerry” at the bottom of emails, and now I am going to be one of those people. I’m very excited about my new toy, even though it means never being able to hide from my email. At least it should allow me to take Maggie out for some fresh air more often without having to worry about missing anything important from a client.

Maggie is doing very well. She had her appointment with the ENT on Monday. As always, she charmed everyone there. Dr. G was great, and said to Maggie that he almost wished he could find something wrong so he could keep her there longer. Maggie loved him, even when he was sticking stuff in her ear. She sat still through the test on her left ear, and passed with flying colors, but she wouldn’t sit still for the right ear and failed that one. They’re going to see her back in 3 months to check that ear again, but they said both ears looked good, and they doubt there are any problems. They didn’t see any fluid or any indication that she had ever had an ear infection, so all good news there.

She’s got her EI coming tomorrow afternoon, and I’m hoping to hear something on the speech and OT referrals.

We’ve got someone coming to look at the condo on Thursday, so we’re crossing our fingers on that. Hopefully we can get our house clean again by then.

Last, but certainly not least, my thanks to the WS mommies for responding about the poo issue. So far, the prunes seem to be helping, and we’re working on getting the calcium test referral and sources of fiber. Maybe this BlackBerry will help me keep all of Maggie’s dietary needs in order…*ring ring* time for prunes, *ring ring* time for extra caloric supplement!

That cute little booger has really been an angel this week. She woke up a few times last night, which is unusual for her, and it made me remember how rough it was when she never slept, and it made me so thankful for how great she is on her sleeping schedule now. She’s been so patient, hanging out at the doctor’s office and in her baby prison while I work. And she’s just so sweet. Her smiles have absolutely gotten me though so much, and I feel truly blessed every day to have her. I love you baby girl :)

12 month well visit, EI, and family birthday party

Sunday, May 18th, 2008

(post about trip to Kentucky is below this one…I posted them at the same time)

So the day after we got back from Kentucky was Maggie’s first birthday! She had a great day, and even got some french fries and ice cream at dinnertime. She was a very happy little baby. Wait…excuse me…Big Girl :)

On Thursday, we had her 1 year old well visit with the pediatrician. It was the first time we had seen her since the diagnosis. Maggie is now off the charts (off on the bottom, not the top) for her length (below 3%), and barely on the chart for weight and head circumference (5%). Dr. Shealy said we’d start using the WS growth chart, and recommended we give her some Carnation Good Start mixed with some milk for extra calories. I told her I didn’t really want to start milk until we found out about Maggie’s calcium levels (waiting for that referral), but that I would give her a little skim milk. I’m somewhat lactose intolerant, and that’s all I can drink anyway.

I also asked about Maggie’s deer pellet looking poo, and Dr. Shealy said she may be constipated. She said we should give her prunes and prune juice every day. Now, I read somewhere that constipation and kidney problems go hand in hand. We’re still waiting on the referral to get the kidney ultrasound, but I was wondering if any of the WS mommies knew if constipation was a sign of kidney problems. Let me know if you have any insight, and I’ll be pestering the pediatrician about that referral.

Otherwise, Maggie did well at the appointment. On her developmental checklist, the only things I couldn’t check “yes” on were things we already knew she had issues with, so nothing new there. She even did well when she got her MMR and Chicken Pox shots, so great visit!

We got back home just in time for her EI appointment. We discussed the findings in Kentucky, and I told her that Dr. Mervis recommended speech and OT. She seemed very cooperative, even though they had determined that Maggie didn’t really need either one. She is supposed to be getting back to me on the referrals and evaluations.

On Friday, Adela Pearl Smith was born at 2:43 PM! Brad and Amy are now parents of a beautiful baby girl! We got to go meet her, and hang out with Brad and Amy a little while before Maggie and I had to leave for Greenwood.

On Saturday, Maggie had her family party at my parents’ house. Tyler couldn’t come because of work. My mom and Tyler’s mom did all of the planning, and took care of everything, which was so amazing, I would have never been able to plan it with everything going on. The party was wonderful, and Maggie has a wonderful time! I’ll try to post pictures later when I get them off the camera.

Unbriddled Spirit…the tale of our trip to Kentucky

Sunday, May 18th, 2008

I’m finally making myself sit down and post about our trip to Louisville, because I cannot let the week end without getting it done. My intention si just to share how well Maggie did with the appointment, and I hope that no one takes offense or sees it as bragging. We know how truly blessed we are to have Maggie doing so well, and we are thankful every day for that. If you want the overview (shorter version), skip to the last couple of paragraphs. Sorry I’m so long winded :)

Cute Maggie, day before the trip

We left super early last Sunday (May 11)…super early for us anyway. I was up at 4 trying to finish packing, check the weather (tornado warnings…yay), and get the house looking pretty in case anyone came to look at it while we were gone. My mom was a huge help, coming down at the last minute the day before to help me out while Tyler worked. I don’t know if we would have gotten everything done and ready to go without her. Thanks mom!

We got on the road to go get Tyler’s parents’ car about 6, since the Mustang is not really the best car for two adults and a huge baby seat for long trips. Thanks Kanda and Raymond for the Impala! We left their house around 8:30, and hit the road! Maggie slept a lot, and did really well on the drive. It ended up being a pretty nice drive, with lots of room to spread out, a pretty chill Maggie, and me and Tyler fighting for the driver seat. We stopped several times to let Maggie play on her blanket and stretch her legs. Tyler was super excited to see Kentucky, and to visit a state that did not secede from the Union (only the second state he’s been to that wasn’t part of the Confederacy). I was really surprised with how well Maggie did being strapped into the seat for about 11 hours. She’s such a road trip master…we were so proud of her!

Tyler spent the day looking for blue grass. This is as blue as we found.

We got to the hotel at about 5PM, which I thought was pretty good time considering. Hotel room was alright, but the jacuzzi tub was totally worth the price of the room. It could have been a closet containing only that tub and a cot, and I would have been happy. So Tyler left with the car to go find a grocery store to pick up body wash for me (forgot mine) and some dish detergent for washing bottles. He was gone forever! Turned out that he got kind of lost and went to a grocery store like 5 miles away. But, when he got back, he had beautiful purple flowers for me! Happy Mother’s Day to me! Maggie and I took a bath in the jacuzzi tub, and Maggie loved the bubbles and the jets! Tons of fun. We all went to bed really early Sunday night, even Maggie who had slept most of the day in the car. It was a good night :)

We get up Monday morning. I got up early, got everything ready, got Tyler and Maggie up, and still had time to spare. I wanted to leave like an hour early, even though the hotel was literally 4 blocks from the University. Tyler said no. So, I decide to trim Maggie’s nails, so she doesn’t claw a researcher to death. Bad idea. She wouldn’t hold still, and I totally cut off a chunk of skin on her thumb. She didn’t seem hurt, and didn’t seem bothered by it so much, but it was bleeding pretty bad. I tried to keep her from putting it in her mouth, and keep her from getting it all over both of us. Thank goodness for the Tide To Go pen, or we all would have looked like we had just hacked up a small family. Tyler and I tried to get it to stop bleeding, to no avail, and finally left the hotel 10 minutes before we were supposed to be there, with a bloody child and a super freaked out mommy.

So we get there. Maggie is fascinated with all of the people, I’m fascinated with the bulletin board of children’s pictures (kids with Williams Syndrome, I assume), and Tyler is fascinated with the toys. After a few minutes, we meet Dr. Mervis. She seemed really nice, and went over all the paperwork, forms, and details with us. Then, we start Maggie’s evaluation. Maggie did great in most things. She picked up a cloth that was hiding a toy, in order to get to the toy she knew was under there. She banged two objects together. She put a lot of things in her mouth, including a spoon (which was the only thing she was supposed to put in her mouth). Her problems were picking things up with her pincer grasp (thumb and index finger, which we’re working on in EI), and using objects appropriately (like rolling a ball, or pushing a car and saying “vroom”). I attribute that last one to me and Tyler…I don’t think we’re ever rolled a ball to her, or pushed a car and said “vroom.” I don’t even think we have a toy car. We will be remedying this situation soon. Maggie also didn’t stack blocks, but again, no blocks in our house. Just a bunch of toys that tell her colors in multiple languages. She now has blocks (birthday presents from mommy & daddy and Pappa & KK), and the multi-lingual color toys are put away.

After that, we went over to the “Infant Cognition Lab” for some fun research-y stuff. Not sure if I’m supposed to write what the actual test was, but it was basically testing Maggie’s ability to recognize individual words in a spoken language, rather than just hearing the “adult speak” (waah wah waah) from Charlie Brown. At least that was my understanding of it. So, Maggie sits on my lap in a room with just us and a TV screen. I honestly wasn’t paying much attention to the language…just noticing the gradients on the graphics. I need to get away from Photoshop more often. Anyway, so we get done, and go back into the other room, and they tell us that Maggie recognized the words, which was really amazing. We were so excited that Maggie did so great! She now has a little t-shirt as a souvenier of the experience :)

Then, Maggie got to look at some faces upside down, but she was getting kind of sleepy and fussy. So, after that, we took Maggie for a ride around the neighborhood so she could nap and so Tyler and I could get some KFC in Kentucky. Just fyi, it didn’t taste any different. We drove around for a while, and got the hang of navigating around the hotel and University as we were just driving in big circles. We got back about an hour later, with full bellies and a rested Maggie.

When we got back, I talked to a psychology grad student about being a stressed out mom of a child with Williams Syndrome. We determined that I’m doing well with Maggie’s diagnosis so far, but that I just have too much going on and worry too much. At least that’s what I think, and what I think she agreed with. Maybe I’m pushy and presumptive. While I did that, Maggie was filmed playing with a grad student. Tyler watched, and talked to the mom and dad of another little girl who was there seeing Dr. Mervis. We went back to the Infant Cognition lab and Maggie got to look at faces right side up. Nothing exciting to report there that I know of. We went back to the office, and Maggie was filmed playing with me. Maggie actually had to take a poo about halfway through, and spent the last half of the time standing against the table and grunting. Go Maggie! We actually realized later, after talking to her pediatrician, that Maggie has some constipation issues, so she was constipated on camera. That will make her so happy one day, to have that documented on video. More about that on the next post.

Dr. Mervis had a meeting so we just hung out with the grad students for a while, and we put Maggie in her Pack’N'Play to take a nap. When Dr. Mervis got back, we met with her in her office. We filled out some questionnaires (with Dr. Mervis’s patience and help, because my brain was fried at that point). Then she she gave us the scoop on Maggie.

Start reading here if you wanted to skip to the short(er) version

Dr. Mervis said that Maggie is doing fantastic for a child with Williams Syndrome. Her gross motor skills (crawling, walking, sitting up, etc) are in the normal range of where they should be for a child her age without Williams Syndrome, which means that she is doing exceptionally well for a child with it. Her main area that needs attention is in fine motor skills, and Dr. Mervis recommended that she get occupational therapy to work with her on that. Using objects appropriately and using her pincer grasp were the big things. She also said that children with Williams Syndrome often do not learn to gesture like a typical child. So, we need to work with her extra hard on learning to point, wave, and make gestures. Her speech is going well, but she said she could use extra attention on that as well, and recommended speech therapy. She said that Maggie is babbling well, making lots of consonant sounds, and that her use of variegated syllables is very good (that means she can say things like “goey” or “shenaaa” instead of just “mama” or “dada”). In both fine motor and verbal skills, Maggie is doing great for a child with Williams Syndrome, and Dr. Mervis seemed to think that she had the potential to do even better with some extra help.

Dr. Mervis also gave us some great info about WS myths. She said that not all children with WS are musical, and she thinks it has more to do with the child and the family than WS, and doesn’t want parents to get their hopes up that their child will be a musical genius. Since our families are pretty musical and artistic anyway, Maggie has a chance of being musical and artistic, but her chances aren’t elevated because of the WS. She also said that its not true that all children with WS are really happy all the time. She said they can almost always be described as “delightful,” because they are often very friendly and fun, but that they also have lots of problems with anxiety and get pretty worked up. She said that Maggie is truly a happy baby, and that its due to her personality, not the WS. She also doesn’t seem to have much anxiety, which is also good news. We were thrilled at hearing this, because we have always thought she was a very happy child, but we were starting to wonder if it was just because of her syndrome. Pretty much everyone there said that Maggie was so sweet and so happy, and we heard that she had the office abuzz when she first got there, because she was so happy and easy going.

In general, Maggie is near the top of the development scale for children with Williams Syndrome, and is doing just about as well as she could be. She is atypical for a child with WS, and has a very good chance of being in the lower average intelligence range, as long as she keeps developing at a good rate. She won’t regress or hit a plateau like what happens with some other syndromes, but worse case scenario is that her development doesn’t continue at its current pace. I feel like if she’s done this well with Tyler and I not really knowing what we were doing, and her doing most of it on her own, that there’s no reason to not shoot for having her get to “average” average intelligence.

We were so glad to hear all of the good news, and literally left the University on cloud nine. We pretty much stayed on cloud nine all night and all the way home the next day. We were so excited about the visit that Tyler and I completely forgot that Tuesday was our anniversary until Kanda called that afternoon and told us “Happy Anniversary.” Maggie did great on the way home, and even got to play in the grass some at the welcome center in North Carolina. She loved it. All in all, it was a fantastic trip. We really felt like a huge weight had been lifted, and were so glad that we got confirmation of what we were optimistically hoping for.

We decided that the next time we go, we’re going to take a few extra days to do some sight-seeing and make it kind of a vacation. It was so much in such a short time, and we really wanted to go to the Louisville Slugger Museum and a distillery or two, so that’s the plan for next time. And I’ll definitely bring some bubble bath.

So, yay Maggie!

Ready for a break now…

Friday, May 2nd, 2008

So I haven’t updated this in a while, mostly because I’ve had about zero down time (until tonight at least). I have been working like crazy, getting the condo ready to put on the market, getting Maggie’s doctor’s appointments and medical records, getting ready for Maggie’s birthday party, getting ready for the trip to Kentucky in one week, and taking care of Maggie. Condo went on the market today, even though everything is still not done. Work is crazy hectic.

I did go out with the girls tonight, and had a fantastic time! Thanks to my ladies who definitely gave me a much needed break! Also thanks to my great babysitters this week…ya’ll are my angels :)

Maggie had her Early Intervention evaluation and goal setting thing today. The two girls came out and played with Maggie and talked to me. They were great, and they thought Maggie was doing great. They noted that she can “pull to stand, lower down, crawl, is interested in people (shocker!), shake a rattle, move an item from hand to hand, and communicate with sounds and eye contact.” They said I should start using basic sign language for basic ideas like “more” so that she can communicate her meanings without using words, so I guess I need to learn some sign language. Our “EI” (as they refer to themselves) will come once a week for…I have no idea how long…maybe until Maggie is 3. We set our goals…Maggie should be walking independently, have a vocabulary of 10-15 words, and be able to put things in a container in the next 6 months. She’s close to walking now, but really doesn’t want to put anything in a container that is not her mouth, so we’ll see how that goes. Her vocabulary, I have no idea if we’ll make it. We’ll see.

Maggie’s 1 year well visit is set for May 15th, and her ENT appointment is May 19th, so that means the only appointments I have left to schedule are her kidney ultrasound, vision test, and blood and urine tests for calcium levels (which they may do at the well visit). So yay!

I’ll post the finished condo pics as soon as I get time to breathe :)

Evaluation Day

Wednesday, April 16th, 2008

So I spoke with Dr. Mervis this morning, and Tyler and I are planning to take Maggie to Kentucky on May 12th. I’m pretty excited about it. I still can’t believe we were able to get an appointment with her so quickly! I’ll write more about the tests and things they’ll be doing when I have a chance later.

We went to look at houses last night, and we’ve decided to make an offer on the blue Charleston style in the Northeast. It would be perfect for our family, though it does lack the character I was hoping for. I really do think it is the best option we’ve seen as far as our most important needs (space, location, yard, condition). I was worried Tyler wouldn’t like it, but he did! As soon as we hear back from our mortgage guy about when we can do our prequalifying letter, we plan to make an offer. Yay! Pictures will be posted later.

Maggie has her assessment with BabyNet today at 2 to determine if/how often she needs speech, occupational, and physical therapy. I’m nervous about it, for some reason, but I’m crossing my fingers that it goes well!

They didn’t evaluate Maggie today because she is already eligible for the program based on the WS diagnosis. We just filled out paperwork, Maggie charmed her case worker, and I heard about all of our options and what we do next, etc. The weirdest part was that I had to tell the case worker about WS. I was so proud of myself, giving her all of the information about Maggie’s diagnosis, what WS is, and what we know are common WS difficulties. Once we choose which provider we would like to go with, someone from that organization will come out and do her basic evaluation, then they’ll assign her physical, occupational, and speech therapists, and they will do the in depth evaluations.


Tuesday, April 15th, 2008

I emailed Dr. Mervis at the University of Louisville in Kentucky (who is supposed to be a leading expert on the behavioral / developmental / speech side of Williams Syndrome) yesterday, told her a little about Maggie, ans asked if she would be willing to see her. I have been told that Dr. Mervis does a free two-day evaluation of your child, and can let you know about where they are on the spectrum, and you only have to pay for hotel and transportation. They conduct extensive research on children with Williams Syndrome and Down Syndrome to try to better understand these disorders.

So, I get on my computer this morning, and I have an email from Dr. Mervis! I was so excited! I wasn’t expecting to hear back from her so soon. She is supposed to call me back later today to go over the research that they’re doing, and discuss further details about seeing Maggie.

So, YAY!

Also, we’re going to look at houses tonight. I will try to post some pictures.

Dr. Mervis called a little while ago. They want to see Maggie in May! She said that Maggie is high priority because of her age and developmental progress, and they had a cancellation, so they could see her on May 12th. We’re trying to figure out if that’s going to work out for us (not much time to plan, checking work schedules, checking budget, possibly moving, etc.), but I’m really hoping that it will work out. Plus, its been a long time since I went on a big road trip :)

That would be an emphatic “no”

Saturday, April 12th, 2008

So we went to the Genetics Center to have our appointment to go over Maggie’s results. It went well. Tyler really liked the doctor, and we got all of our initial questions answered. They told us all of the details about Williams Syndrome, many of which we already knew from our internet research. We did learn a few new things, and we found out about particular resources available to us. We got a list of what we need to do next…all of the additional tests and assessments that need to be done. Looks like we’ve got quite a journey ahead of us.

Our genetics doctor is apparently very against “over parenting,” and I feel pretty confident that he will help keep me in check, because I know I have a tendency to take things a little far sometimes. I want to make sure Maggie is taken care of and that she has every opportunity in the world, but I also want to make sure that we treat her the same as we would any other child (for the most part, at least).

The really good news from the appointment is that they found Maggie to be at an appropriate developmental stage for her age, as far as her sitting up, crawling, standing, and cruising. We’ll be able to find out more when we get all of her assessments done to find out if she needs speech, physical, and occupational therapy, which will, hopefully, be soon.

I will write later…on my way to get Maggie from grandma’s house!