Wednesday, December 27, 2006

Quick Update

Just a quick update on the Brady Boy. We went to the pediatrician's office for his Synergist shot and monthly weight check. They were also checking his ears, which were all clear. Remember, last time we were there he had gained a pound in a month. This month I didn't know what to expect because he didn't eat too well for two weeks when he had the ear infection.

Well, what do you know! The Braid-man gained 9 ounces in the past month, which included two weeks of not eating! Not bad! It makes me wonder where he'll be next month. Yeah!

Tuesday, December 26, 2006

I'm dreaming of a White-but-it's-too-warm-at-50-degrees Christmas

It sure didn't feel like Christmas up here in New England - we were at 50 degrees, which pleased the kids as they trekked outside to toss a ball... but to me Christmas needs to be homey and snowy and comfy.

It started at Christmas Eve mass. The 4 p.m. mass had the Children's Choir which was adorable with their off-key solos and high pitch instruments (Brady did NOT like the flute - Tom had to take him out!). The room was bright and overflowing as usual, but our beloved priest, Father Dennis, is still in Iraq until next August. We had an interim priest assigned to us who is pleasant... but NOT Father Dennis. I spoke about the transition last August. And as I sat there during the homily listening to Father Bomba drone on about the lineage of Jesus Christ (wasn't the Gospel going back 28 generations enough?) I recalled to Tom how last year at this time Father Dennis was telling us about the Christmas presents he received - like the pornographic ladies calendar from his brother to the rows of brown socks to the bottle of wine from a well-meaning aquaintenance (he is an alcoholic). He made us laugh and feel warm to our toes.

THEN, after the homily from Boringville, the cloud of incense that was hovering over the congregation made its way to our side, which made me get up and leave to get a breath of fresh air. The incense was so strong and rampant that people were coughing and one alter server threw up in the bathroom. Ahh... what a great experience!

Christmas day was fun - Michael woke up not too early - around 8 - and we all gathered in the living room to open presents from Santa. Brady joined us soon after and was immediately placed in his Baby Einstein Exersaucer. He kept staring at himself in the little mirror, probably wondering who that kid was. We had a great day, going off to Tom's family's then to mine. There was a bit of clouds over us at Tom's family's as we were reminded of his mother who passed away six months ago. It was our first Christmas without her.

Meanwhile, the entire day was in the 50's, I think, which may be nice for Florida, but here in New England you want snow for Christmas. It was even a little overcast and sprinkled later on while I was putting presents in the car to bring home. Brady did well with little sleep and both boys and Tom and I cleaned up well wherever we went! :) Michael was especially excited to get his Scout knife after earning his Whittlin' Chip at a Cub Scout campout. However, he had it in his head he was going to carry it from now on in his pocket like his dad, which we quickly put an end to.

Tonight, I sit here amidst toys and clothes and music, realizing how lucky we are to have such caring friends and family. This has been such an up and down year - Brady getting worse, Brady getting better, Tom's mother dying - and through it all we have had such great support. So thank you to all of you - toilet scrubbers and all! As Michael would say (since seeing Scrooge, The Musical a few weeks ago this is all he's been saying):
Thank you very much!
Thank you very much!
That's the nicest thing you've ever done for me!
Thank you very much!
Thank you very much!

Thank you very very very much!

Monday, December 18, 2006


SO... today I spoke to Harvard Pilgrim Insurance because they are telling me we only have $5,200 per member, per calendar year for Early Intervention therapies. We started last February with PT, added Speech, then this summer added OT. The money lasted from February until September, apparently. Umm... hello? A) It is December 18 and I am being told this? and (B) ARE YOU PEOPLE INSANE????

Hi - my son has William's Syndrome... he NEEDS his therapies. As my friend pointed out, it's not like Brady can't hold a pencil correctly and needs OT. He needs to learn to CRAWL! (and walk, and talk, and eat, and....) I was told my recourse is a letter sent to the Appeals division where they will (hopefully) allow us more funds. At this rate, when January starts and the balance is $0 again (because it is reset every calendar year ), we will go through the $5,200 by April. I have contacted Brady's pediatrician and geneticist and they will give me letters to go with mine. My geneticist has already (within three hours of my asking!) dropped a letter to me. I would like to think that this is a standard thing and I will get the funds no problem. Can I point out to Harvard Pilgrim that my eight-year-old son NEVER goes to the doctor? Can I direct any of his leftover monies towards Brady?

I haven't had any problems with insurance thus far (except for one $250 copayment for a hospital visit - ugh) and naively thought the problems I have heard from other people would escape us. Hopefully, they still will. With all the issues needing my attention, this should not have to be one of them.

Other than that annoyance, things have been pretty quiet over here. Brady has been doing really well, reaching out all the time now for his toys as well as sitting for a long period of time and chewing. I finally feel like we can start playing more. Before he would kind of just look at his toys, not really interested. He will reach out now and grab things, always wanting to shake, shake, shake them! He has a little fascination with tiny balls in rattle-like toys and Michael is forever complaining that Brady is making too much noise when he's trying to watch TV.

He has been sleeping more and more and I'm wondering if these six-to-nine-month clothes will fit him long, as it could be a growth spurt. Some of the clothes seem to be getting a little too short, but the waist for the pants in the nine-month clothes fall right off his body.

There's been a lot of talk on the boards about the delay in speech, and Brady is definitely on the quiet end as well. His geneticist said at his one-year-old visit in September that the one thing she was surprised about was his lack of vocals. They are few and far between, with no correlation to when it happens. WELL... there probably is one, but one we can't figure out! Unlike his mother, Brady only speaks when he's got something important to say - he doesn't babble for no reason. :)

I am excited to see how he does Christmas morning with some of the new toys we asked Santa to bring him - especially this drum that plays music when he hits it. I think he will understand how that works. In the meantime, we are making cookies, singing carols and enjoying the holiday season.

Tuesday, December 12, 2006

The Bench

At the grocery store near the exit sits a bench that was placed there a year or so ago. Husbands waiting for wives and older chidlren waiting for moms sit there impatiently, watching the endless stream of people walking out with their groceries. It sits between the cheap vending machines with rings and slime and superballs that Michael always begs me a quarter for. The free newspapers sit next to it also, and sometimes you will see an older gentleman thumb through one waiting for his significant other.

A plaque rests in the middle of the bench, written on it something to the effect of "In Memory of Doris Laquerre". I remember Doris. She was an elderly woman, in her 70's or so, who used to pack groceries. She was a tiny woman, and I always thought she should be sitting at a coffee shop drinking coffee and playing cards with three other elderly women rather than packing bags with pierced teenagers with green hair. Not that she seemed unhappy packing groceries - oh no. She was friendly, always quick with a smile, and never squished the bread or broke the eggs. Michael used to tell her he had an aunt named Doris and she always smiled at him.

I remember the first time I saw the bench and read the inscription. I was a little shocked, because until I read it, I didn't realize she was gone. I felt bad, like I should have known or something, but I was also touched that a bench was placed there in her honor. Either corporate people placed it or a collection was made to raise money for it. Either way, she obviously touched lives to warrant the spot. There's not 10 benches sitting there with inscriptions on them. Hers is the only one. That is a statement all alone.

It is this time of year that we often think of those who have passed. We wonder how they are doing, when they should be with us instead. Tom's mother's passing just passed the six month mark. This will be our first Christmas without Nana Rose. To lose a mother is so profound I can't begin to fathom it, and I instantly start to think of something else. My godmother's year anniversary just passed us also - coincidentally both were on December 7 (also, coincidentally, the day Brady smiled). Last year, we also lost my uncle, an old Italian bachelor who epitomized every stereotype you can think of. They are all missed dearly and it is during this season that I remember Christmases past, and their kindness and generosity. I know they are all looking down on us and keeping watch.

Friday, December 08, 2006

We were wrong - it was December 7!

I DO have a funny guy!

Last night, Michael had his homework on the sidetable in the dining room. He kept walking back and forth from the dining room table to the table that had his homework. The table that had his homework was behind Brady in his highchair. Michael would be talking and Brady would try to look up, over his seat, to see his big brother. Michael walked back and forth, with Brady's eyes set on him each time Michael was next to him. At one point, Michael stood next to Brady and Brady started talking to him..... then smiled!!

This was a purposeful smile, not some gas thing or chewing the inside of his mouth thing. This was witnessed by me, his father and his brother. Then... he did it again! By the time I raced back with the camera, he was all done. We kept encouraging him, "Brady! Brady!" No chance. He kept his eyes on Michael and looked at us like we were crazy. :)

So, needless to say, Angela was right - December 7. He hasn't done it again... but I finally feel it is not too far off where he'll be smiling all the time. And it will probably always be tied to Michael in some way, as that boy makes me smile too.

I think I will now put Brady's name on the William's Syndrome Foundation site with the notation that he didn't smile until 14 months so other mothers don't go crazy like me... although I have lived here (in crazyville) for a while and know my neighbors well. (haha) I remember feeling a little relieved when I read one baby didn't smile until he was 9 months.. of course, then that came and went and here we still were. Not anymore though! Yahoo! :)

Wednesday, December 06, 2006

Today is NOT the day

Today is December 6.

December 6, 2006.

Today was supposed to be the day Brady smiled.

Grandma asked the geneticist in September if Brady would ever smile. "Absolutely!" she said, smiling, in fact. "I can guarantee it. I can't give you a date, like December 6, but he definitely will."

So, of course, Grandma and I decided that Brady would smile on December 6. He's been doing some side smiles, but mostly just playing with his mouth. His eyes light up and his face scrunches into some kind of happy-face when you tickle the top of his chest, but it's not a smile.

His face is very symmetrical when he yells at his PT when he's mad at her. So it seems he has the ability in some ways. His Speech Therapist said his low tone is accountable for it all... and it's still very low. He's getting better and better... always good reports from his therapists. Just... not....there....yet.

Even though I was hoping for a better outcome today, in general I am not bothered too much by Brady's delays. When my mother was potty-training my brother, the doctor told her, "Don't worry, by the time he goes to kindergarten he'll be trained." (sorry, Josh!) It's not the exact same with Brady - but it's pretty close. The docs and therapists say he will walk, talk, smile. Knowing that he will has eased my mind on when. I do have my moments though - especially on this smiling thing. And once in awhile I get annoyed with those passer-byers who comment on how little he is, or what he's not doing even though he's one. I did have one mother comment for many sentences on how little Brady is for a one-year-old. We were in the doctor's office. I friend of mine said I should have freaked out to the woman, "Oh my, REALLY?? Oh, no! Let me go get the doctor! Oh no!" I do have an evil grin on my face right now, but only because the woman went on and on and on...

But today, December 6, should have been a little different. He's 14 months and three weeks old. When Brady was newly born he used to smile those gas smiles in his sleep. Apparently, it is a good thing that he did that - it means he CAN smile, his Speech Therapist said. His chubby little cheeks are weighing him down :)

And, on top of all this, Brady has his first ear infection in one ear. He's a very healthy kid, minus the William's, hernias, poor weight gain, and heart problems (haha). He had his first fever in his life yesterday for about an hour. He loves that sweet medicine, gobbled it up. In fact... that's probably why he didn't smile - he has an ear infection :)

(This pic is one of MANY trying to take Christmas pictures. Looks like I have a funny guy ~)

Friday, December 01, 2006

Who would scrub your toilet?

A friend of mine is pregnant - a bit surprising to her. She has a 16-year-old, a 13-year-old and an eight-year-old. Needless to say, not a stitching of baby anything is left in her house. She put the word out that she is looking for anything and everything. Coincidentally, my sister just bought a new house and is getting rid of things from the old one. One of the possessions was a crib. I spoke to my sister and her husband one day and said if it was still available I would take the crib for Marlena.

My always-funny-to-himself brother-in-law wondered if she was a good enough friend to lend the crib to. He jokingly asked, "Is she the type of friend who would come over and scrub your toilet for you?" (Assuming if I am sick or in the hospital or something... not just because it is cleaning day.)

Without thinking, I answered, "Yes." Then I stopped and thought about it. In his own funny way, my brother-in-law opened my eyes a bit. Just where is that line that deems a good friend?

I have friends whom I tell everything to; I have friends who do everything for me and vice versa; I have friends whom I work with on committees and clubs; I have friends whom I haven't talked to in years but I know I can call up in an instant if need be. At different stages in your life you also have different needs from your friends - you have the going-out friends, the shopping friends, the crafty friends, the confiding friends... maybe a mix for a few. Heck, if anything this blog has taught me is that I don't even have to meet people to have their friendship - I consider my blog pals "friends" too.

But now, with this "new" definition of friendship - "someone who would scrub your toilet for you" - maybe we need to rethink a couple of those people. After all, life is pretty short. We should spend our time with those who matter the most.

I believe I have a good number of people whom I think would scrub my toilet. I think they are the same people with whom I have been able to rely on over the years, especially this past year with Brady. They are the same people whose toilets I would also scrub, if need be.

Wednesday, November 29, 2006

He likes me - he really likes me!

He DOES like me!!

For you non-WS parents out there, your baby cooing and caring that you are holding him is foreign to many WS parents. (Not all - but many.) I hear as the WS child grows, he starts to care more that his mother has left the room, or his father left the house. They start to care where their parents are. Right now hen people want to hold Brady and ask if he would mind, it's a definite "Um, go right ahead - he doesn't care if I'm not holding him". It's not a pity-seeking answer - it's the truth. He can be held from one person to the next and not realize or care if it's me.

Now, my mother might disagree with that statement. She says, "of course he knows you." But, really, he doesn't. She should tell me that he does care- it is her job as the mother after all. But now, at age 13 months, I feel like he is starting to care. He is waking up at midnight or so just to say hi. Isn't doing it to get up and eat. This boy who would before lay and look at the mobile for what seems like hours if I let him all of a sudden will chill out with me, stare at me, look for me. Maybe a little early Christmas present? :)

Thursday, November 23, 2006

Close Ties

It's a boy's house here in Bradyland. His brother Michael, seven years his senior, has been a constant source of companionship for Brady. Brady watches Michael every time he enters the room and keeps his eye on him when they are together. In the car, suddenly the windows are nothing to be enamored with; he keeps his eyes on Michael whether Michael is talking or not. (the "or not" part is very seldom, I have to say) He will pay strict attention if Michael is yelling or getting yelled at. Clearly, he is the favorite.

Michael is no different. "Tell Brady goodbye" and "Give Brady a hug" are what he says when he leaves for school every morning. He walks in and wants to hug Brady when he comes back in the house. He will sit and play with him and constantly wants to hold him. Over a year now and the newness has not gone away like I sheepishly thought it would.

My kids were "supposed" to be four years apart so when this seven year age difference happened I was concerned there would be no childhood together for these two kids. Will they have the playtime together? Will they share the sibling-hood that I want them to have? When Brady will be Michael's age, Michael will be off working at an afterschool job and running off with his friends.

I am the middle of three kids -an older sister and a younger brother. We are all four years apart. When we were little, we played together. Over my childhood years, it was first my sister and me, then all three of us, then my brother and me. I don't think the "all three of us" lasted that long, because my sister was by then old enough to go off with her friends. We did have some fun, like hang my brother from the laundry chute at my grandmother's house. As soon as she graduated from high school she went to college across the country.

So then it was just my brother and me. We set up Fisher Price peoples, play baby wiffle ball in the backyard (I was Sammy Jo, the amazing pitcher), watch TV after school (1/2 hr of Tom and Jerry, sometimes a full hour of Charlie's Angels). When I got my license I would bring him with me to get movies or to hang out with my friends. He was old enough to hang out with us, but young enough to be the "adorable little brother".

But at the holidays it was just thre three of us. Having moved away from family when we were four, eight and 12, we had come to rely on each other in a special way. Easter, Thanksgiving and Christmas, when other friends visited extended families, we would be with each other and our parents, playing games, eating, watching TV, relaxing. Christmas Day we would wake up and have all day to open presents and play. We had each other to be with and to goof with. The year we all got radio/tape recorders, (the 8600) we spent the day taping each other and singing into the tiny built-in mic.

That's what I wanted for my children... the camraderie, the closeness, the playfulness. I wanted them to have the memories I have, that special bond. I worried for awhile that I wouldn't have that for Michael with Brady having WS. I am a nut. I know as Brady grows he will be nothing but a constant sources of happiness for Michael. He already is.

Update: Since switching to 1/2 Enfamil, 1/2 Calcilio a month ago, Brady's calcium levels have dropped. He went from a 11.6 to 10.8. Yeah!

Sunday, November 19, 2006

Someone told me the other day it's six weeks until New Year's. Egad. I can't believe in four days it's Thanksgiving. I have started my Christmas shopping - did a lot this weekend actually - and I love doing that. It's a season we wait for all year and then spins by horribly fast. As a kid though, I know it's a LONG season... always waiting forever for that jolly elf to slide down the chimney. I'm glad, because the anticipation is better than anything. But I have noticed as you get older, Christmas sneaks up, BAM! hits you hard, then disappears so fast you wake up and it's Valentine's Day.

I've been thinking a lot about that lately - life passing you by, children growing up fast, missing out on things because you're busy doing the mundane (thanks Lisa!). And while that is all true, it is also impossible to live by. You HAVE to clean the dishes or you will get some strange bacterial disease and die in the hospital. You HAVE to clean your room, otherwise you will slip on a crayon or shoe and hit your head and bleed out. You HAVE to clean the bathroom because... I won't even go there. SO, yes, it IS a matter of life or death for you to take some time and do the little chores while your child happily and quietly entertains himself or watches mindless TV. :) But I get the picture in whole and I do remember that my kids are only little once. Anybody who knows me can vouch for that.

We had a good weekend, going out for dinner for my mom's birthday - we hit a fondue restaurant with ADULTS only (thanks Amy for babysitting!) and it was a blast. Reminicent of a dinner in my youth when we ate chocolate fondue for dinner because the cheese fondue had burnt. The best meal ever! This meal was yummy but also fun - quite hilarious to watch my father fish around for his lost piece of bread in the depths of the melted cheese-filled pot. We also could deep fry vegetables which is totally counter productive since it certainly didn't make them too healthy. Our dessert was divine - two choices: a Turtle fondue (like the Turtle candy) and a hazelnut... yum...

I have managed to get a lot of toy shopping done, but I still have adult presents to buy. Brady is so hard to shop for and although he is already 26 inches tall I think Santa will bring him an Exersaucer. Some Exersaucers only go up to 30 inches, but I have come across a couple that go to 32. I brought down my old one and he really liked it. He was able to turn around and hit the little toys on the bench. I like giving him a new way of looking at the world, especially since I have to take down his jumper from the doorway. He does love that thing! (sigh) But his PT is VERY much opposed to it, since it can promote toe walking and tightens his already tight muscles in his legs. So, it is down and not to be put back up. Sigh.

Speaking of Christmas, while I know SOME people out there starting putting up their decorations Sunday (ahem, you know who you are!) we have in the past few years put our tree up Wednesday night and decorate it Thursday morning while we watch the Macy's parade. I am getting a little excited because it means the season is really here. A friend of ours put up his holiday light extravaganza yesterday, ready to light on Thursday night. And by extravaganza, I mean he should start to charge admission. It is done tastefully though, quite unlike Truvy's house in Steel Magnolias.

Sunday, November 12, 2006


I logged on this morning to the Williams Syndrome Association forum and found a truly inspirational letter. A parent of a newly-diagnosed child with Williams Syndrome had written in, concerned and frightened about the news. A parent of a 20-year old child with WS wrote back; this was his response:
Nearly 20 years ago, I was devastated when my daughter was diagnosed as having William's Syndrome. The label of mental retardation was frightening. All the visions of a 'normal' progress through life vanished.
Now, with the benefit of hindsight, my fears were groundless. My daughter has brought more joy than grief. Actually, the only grief was the initial disappointment of not having a 'normal' daughter. She is strong, perceptive, caring and loved by all who come to know her. Certainly, she needs adaptations to succeed, and some tasks are beyond her abilities. But, with patience and encouragement she never ceases to amaze us as to what she can do. She works part time, and has the respect of her co-workers. She saves her money, and is planning to travel to her favorite destination, Las Vegas.
I meet a lot of people in my profession and hear the tales of woe they tell of their 'normal' children. I can honestly say, that I have not lost one night of sleep for worrying about my daughter.
My only advise is to be patient, be patient and when you are frustrated be patient again. Above all, enjoy and celebrate every accomplishment. Thousands of others have walked in your shoes.

What a wonderful way to start my Sunday morning! (And, by the way, look what Brady can ALMOST do! Pretty soon ... )

Thursday, November 09, 2006


Brady's nutritionist appointment went REALLY well... in one month he has gained... drumroll, please... ONE POUND!! It's very exciting over here - the combination of Calcilio, Polycose (thanks, Amy!), brushing, and non-Reflux generating foods I think all had something to do with it.

I need to go clean, but thought I'd share this little happy news while I had a minute. :)

Wednesday, November 08, 2006

Slow and steady win the race

It's been a week... and I have to say the changes are definitely there. Brady didn't stand up and start walking with this new brushing program, but there were definitely changes that have coincidentally happened since we started brushing.

His alertness has magnified; his tracking with and without noise is perfect; his eating has GREATLY improved; his sleep schedule has solidified (I can say now having unbroken sleep that I was sleep deprived); he is reaching out for toys; he is making all the googly faces with his mouth, including biting down; and the list goes on that only a mother could tolerate. :)

I finally feel like he is "growing", that he is making milestones. His tone is still very low, but it is obviously getting better all the time. We're not "there" yet... I still am having a hard time buying Christmas presents because he doesn't really need anything. He still has the toys from last Christmas that he may actually be ready for THIS year. But it has rejuvernated me. I feel like we are finally moving forward a bit. With me, it really is the small things. I only need a little encouragement and it lasts for a long time (maybe that's why I'm Brady's mom!).

Tomorrow we go to the nutritionist for a follow-up; and since we'll be at Children's Hospital Brady will get his calcium testing. It will be the first calcium test since switching him to Calcilio formula.

Sunday, November 05, 2006

Brushing 102

Well it's Day 4 of Brushing, and I have changed my tune a little. I did go off schedule yesterday afternoon a bit, but then got back on. I am almost hesitant to write this because you know as soon as you write something the opposite happens...

Brady has always been a good sleeper, but sometimes broke it up a bit at night--- he'd go down around 5, sleep til 9 then go back to sleep around 11-12. Sleep til 5 or 6, eat something, then go back to sleep as long as I let him. One time it was til 11. I know, you're going to say to move his sleeping around, it's all schedule, but it was really about eating. He'd get up and eat. He eats the way the dieticians tell us to - six small meals, not three big ones. :) He doesn't eat a lot in one sitting, which can be a little frustrating when you are trying to gain weight.

Well, his eating his gotten MUCH better... he's eating his food much better now during the day, and now has been going to bed about 8-9 til morning. Last night, he woke up crying twice but I just shoved the pacifer in his mouth and he fell back asleep. I gave him some bottle around 4, then he went back to sleep. Still there now.

I mentioned before he seems more alert, but I also feel like I can finally visualize him walking and growing a little older before. I never could do that before. He was always such a "baby". We crack up because he's still so little and it would be really cute if he walked now, he'd be up to your knee, probably! :)

It's been a relaxing weekend, watching movies, cleaning up, Michael's last soccer game. Tonight I am going Christmas shopping with my Mohegan Sun winnings for a school fundraiser. It's at 6:30 tonight and we'll have the whole toy store to ourself. Yahoo!

Friday, November 03, 2006

Brushing 101

Well, we'll be on Day 3 of the brushing program today when the little cherub wakes up. He has not complained about it at ALL, which I figured since he seems to like the harder touch rather than the soft touch. He just kind of lies there and takes it, thoughtful. He doesn't even mind when I flip him over and he is on his belly while I do his back. He is pulling himself up really well now when he is like that, not complaining which is not normal.

Do I think it is working? Well... I do think that he is eating a bit better, eating more foods rather than formula. He seems more regimented going to sleep; definitely getting more alert by the day. His PT is really happy with his improvements as well, as is his Speech Therapist. However, before we started the brushing he was getting better overall, so I don't know if everything can be attributed to the brushing. I know that his OT said it works for some but not all. I do think it's such a minor thing to do that I will keep doing it. I think it also helps me staying focussed and on schedule!

I know he wasn't going to be the kid who got brushed then started walking two days later... he isn't even smiling yet so I doubt he has the muscle tone for walking. However, I was expecting to see some sort of developmental progress even though I know I shouldn't count on anything. I definitely think I do see progress... and whether that would have happened anyway, who knows.

I do think he is starting to get his own little personality - even though he still looks at you like you're crazy sometimes... then again, maybe it's only me he looks at like that :)

{Here's Michael and Brady on Halloween... Brady in his Lion outfit loaned by Cousin Jack, and Michael in his costume... he was Mike Boogie from Big Brother All-Stars. His shirt said "Chilltown" and "Dolce Vida". When he was trick-or-treating, people actually said to him, "Wow- you're Mike Boogie!" That's good he didn't have to explain his costume to everybody, just mostly to kids!}

Tuesday, October 31, 2006

It's been a strange week over here in Boringsville, USA. We've been busy, but on the Brady-front not much has changed.

First, I'll share some birthday party pictures. His aunt got him this adorable rocking chair with our beloved Sox and Patriots on it.
Michael made Brady a dog at Build-A-Bear for his birthday. Brady was obsessed with it! I'm all excited showing Brady his new crib aquarium (which he LOVES!) but he could care less at this point - he kept staring at that dog and kept leaning it to it, as if to kiss it. I have about 10 photos of him staring at that dog while we were opening presents!

Brady keeps changing every day - more alert, aware... but he's still not getting the eating food thing down (is he REALLY my son??LOL). There are days he will eat and some he won't... and I'm starting to (duh!) think it is not all about the William's - maybe he doesn't like apricots, for example. I'm so wrapped up in William's symptoms, that I'm forgetting he's also like every other kid in other ways too. UGH! It's very frustrating!

He is swimming now too, always liked the water so he doesn't complain about that... then he comes home and sleeps for awhile - which messes up with one of his PT appointments! So we're trying to work around that for the next few weeks. He will stop swimming on Tuesdays the week of Thanksgiving because that pool is closing - so we are moving to another pool but that will be Friday afternoons.

We also moved his Friday 8 am Speech time to Tuesdays at 9 because he doesn't seem to be fully awake at 8. We're trying to give him breakfast at the appointment so his therapist can watch him eat and he just isn't interested that early. Last week we did it at 9 and it was a little better, but not too much. I'm thinking he isn't a breakfast person. He may have a few ounces of formula around 5, so that might be messing him up to eat. We're shooting for it again today, so keep your fingers crossed!

More excitingly, his OT is coming at 3 pm today (have you noticed my schedule for today so far???) to start the brushing program. I watched a video last week about sensory issues, and this week we'll watch about the brushing and get him started. I'm really excited about this - I hope that (a) I will be diligent in doing it and (b) it does something for him. I started last week trying to desensitize his mouth by doing the two-second pressure to his pallet - it literally takes two seconds - once before each meal, then once inbetween each meal. He wasn't too happy about that! Plus now with all his teeth - I have little tiny teeth marks on my thumb!

He is better about going to sleep - although I wonder if I ALWAYS could have just laid him down and he would have gone to sleep and I wasn't doing it... the things we'll never know!

He did have his first sleepover without Mom this weekend - he slept at my sister Kathleen's house while Tom and I went out to celebrate our 11th anniversary. Kat did like to point out he did not sleep at any of the times I said he would :) but my two six-year-old twin nephews were very helpful in taking care of Brady. At one point they had brought down ALL their stuffed animals and put them in the pack-n-play for him. How sweet! :)

Tom was already pumped to go out Saturday because on Friday he won a raffle at an electric supply house - drumroll, please.... he won a 42" plasma screen TV! I kid you not! (Good thing he won it because I'm sure we never would have bought one! haha) Then on Saturday night we went to the Mohegan Sun casino in Connecticut. We had never been there - it was a BLAST! After our initial investment of $30, we went home with $260... all courtesy of MY good luck, I am proud to say (well, Tom did have $1500 good luck the day before with the TV!) It was a good weekend, and Tom was very happy to watch his beloved Patriots on the TV last night, where they pummeled the Vikings 31-7. Yahoo!

Tomorrow he has his Synergy shot and flu booster... We're trick or treating tonight - Happy Halloween!

Thursday, October 26, 2006

Scary lions!

Brady (left) and his friend James went to a Halloween stroll at a local hospital this week. By coincidence they had the same costume. What cutie patooties! Thanks, Ange, for bringing him! I swear I will post birthday pictures tonight.

Thursday, October 19, 2006

You'll be in my heart..

Come stop your crying, it will be all right
Just take my hand, hold it tight
I will protect you from all around you
I will be here, don't you cry

For one so small, you seem so strong
My arms will hold you, keep you safe and warm
This bond between us can't be broken
I will be here, don't you cry

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more
You'll be in my heart
No matter what they say
You'll be here in my heart, always

Why can't they understand the way we feel?
They just don't trust what they can't explain
I know we're different but, deep inside us
We're not that different at all

And you'll be in my heart
Yes, you'll be in my heart
From this day on
Now and forever more

Don't listen to them
'Cause what do they know
We need each other, to have, to hold
They'll see in time, I know

When destiny calls you
You must be strong
I may not be with you
But you've got to hold on
They'll see in time, I know
We'll show them together

'Cause you'll be in my heart
Yes, you'll be in my heart
From this day onNow and forever more
Oh, you'll be in my heart
No matter what they say
You'll be here in my heart, always

Cardiologist Appointment Update

I do have birthday pictures to post, but first I will update the cardiology appointment we had this morning. I was a little nervous because usually my mother comes with me but she and my father are in Sicily eating their way across the country :). I was thinking, it would be my luck to have bad news come today when I am here alone. Thankfully, I knew I had a multitude of friends via cell phone check in on me so I was not really alone.

We were having a sedated echo for Brady's supravalvular aortic stenosis and pulmonary stenosis (he also has two small VSDs that are so tiny we don't even talk about anymore). This was his fifth echo since he was born. He had a sedated one in April which showed moderate to high gradients. His cardiologist requested his June echo not be sedated because he figured his levels would be worse and we would probably at that time schedule a cath within two weeks of his June echo. Well, you may recall from earlier posts his levels actually did not change at that echo ("I am happy to say Brady proved me wrong," his cardiologist said.) and no cath was needed.

So this was the echo following the June echo. The sedation went well. In fact, the whole appt went well. For some strange reason, his gradient on one side was measuring 40 and was now measuring at 25-35. This is very strange - they don't normally go down, get better, on their own. I questioned Dr. Marx, the cardiologist, that maybe the echo was done wrong, which he ackowledged that perhaps, "you would think maybe" but he didn't seem to think so. His EKG and physical exam were both very good, and in general he thought, unchanged when they should normally get a little worse. "I am marking down that this is quizzical," he said.

Possibly the gradient was different from a sedated echo vs a non-sedated one, he thought. Perhaps Brady is gaining strength and weight and that is helping... perhaps his Nana, Aunt Laura, Uncle Joe, Aunt Jeanette are all looking out for him from up above (well... Uncle Joe might be looking up:)).. and he is on two prayer chains (thanks Grandma Mae and the nuns).

His next echo will be unsedated and in February. I know his doctor was happy with his tone and overall he is doing much better. I know one day he will need the cath and probably surgery... I am prepared for that news too. I am glad we can hold off a little while though! Phew!

Friday, October 13, 2006

Happy Birthday Brady!!!!

Happy Birthday Brady!!!
What a year it's been! I have to say, I am a little more relaxed this birthday than last year.
Today we were at yoga and James' mum Angela brought in a little treat for the birthday boy. You can see he did play with it later on. :). We're getting ready for the birthday party tomorrow, so I'll post more after the weekend. Hope everyone had a great Friday the 13th!

Wednesday, October 11, 2006

Almost a year...

Here we are, almost a year old... on Friday, the 13th, needless to say! A year ago today, the 11th, I was in pure ignorant bliss. I was wrapping things up for in two days I had a scheduled Cesarean section planned. Had Michael all set, had the house all set... I was all set.

Little did I know, the next 48 hours were to be the calmest for quite awhile. I think we went out to eat, but that was about it. For in the morning on that Thursday, October 13, 2005, little Brady Joseph was born. Immediately problems with his breathing and heart were recognized, along with his jaundice a little while later (see my first post). And thus began the roller coaster ride of doctor appointments and diagnosises.

But in the middle of all this was still a little baby boy, a cutie patootie with soft skin and a mess of hair, who resembled both Tom and, when he was sleeping, Michael. This little boy who needed his parents to help him, protect him, care for him. Love him.

So here we are, another 48 hours until the celebration of his birth. What a year it has been. I never knew heartache before; never experienced such wonder and joy, except with Michael's birth; never had such worries and concern. But this little boy is who he is - and I can't imagine my life and sweeter than the way it is.

Tuesday, October 03, 2006


Today has been such a funky one. I am almost hesitant to write about it because it all seems so silly when I actually hear the words come out of my mouth. Brady's been through some pretty traumatic times - hernia surgery, a few echos, some pricks for blood... but what do I choose to let consume me? Calories and calcium. Hmpf.

Today we met with the nutritionist, a wonderful woman named Tara who will doublebook to get us in her schedule. I do appreciate that! And even though we waited, I had no problem with that. I did have to have Michael sleep at a friend's to get the Children's Hospital by 7:30 a.m., but sometimes that happens.

She sat with Brady and me going over how to get more calories and textures into the boy, without increasing his calcium intake. So we are doing the usual -adding pastina to Stage 2 foods, 1 tsp oil to his jarred food, instant oatmeal into his cereal, real peaches and pears with the heavy juice, etc. We are also going to be doing at least 12-1/2 oz of Enfamil, 7-1/2 ounces of Calcilo a day, mixed together. The Calcilo is a low calcium formula.

Now this was all fine... not very traumatic. And the fact that Calcilo has to be ordered for home delivery is fine. And the fact that after you call and find out you need a prescription is fine. And after you make all the arrangments to have the form for the prescription sent to the dr's office then faxxed back to Ross is fine. And the fact that they don't deal with health insurance, you just have to get reimbursed yourself or have it sent to a pharmacy is fine.

No.. the traumatically frustrating part is when the guy from Ross said after I questioned what the price is, "Duh..... federal law prohibits me from telling you the price over the phone because it is a metabolic product."
ME: "You can't tell me how much it is going to cost?"
DUMBASS: "No, but I can fax it."
ME: "Um, since a fax line is a phone line why can't you tell me over the phone?"
ONLY-DOING-HIS-JOB-BUT-I-HAVE-TO-BE-PISSED-OFF-AT-SOMEONE: "Federal law prohibits me from telling you."
ME: "Well, I got a message to call to order with my Mastercard."
BRAT: " Yes, we take American Express, Visa, and Mastercard! " (smiling, I hear in his voice)
ME: "So, you want me to give you my card numbers and you aren't going to tell me how much you're charging me??????"
ANNOYING-MAN: "Well, you can order it and then I can tell you the price."
ME: "Forget it, fax me the price list."

It ends up being around $17 a can, and since it is a metabolic product that needs a prescription, there is a good chance health insurance will cover it, I am told from the lady in the Reimbursement Division. Yeah, yeah... we'll see when I call tomorrow.

Anywho, I lost it. It was so frustrating, but really kind of stupid that I would choose something to trivial in the big picture to let bother me. C'mon... we've got a sedated echo in two weeks!! Now, before all the psychiatric mommies comment, I know I was probably allowing myself to let my guard down on something that wasn't so bad because I knew somewhere down deep I could recover better and faster. I think my cup runneth over, literally. And I never take the time to drink some tea from that cup either.

Anywho, Tom said I should go out a let loose because I need some mental health break.. okay, ladies - up for a drink in say, Ohio? That's probably more or less central for everyone. We'll meet around 7 for drinks Saturday night and then get some dinner!

[In the picture above on the right you'll see Mr. Brady upset because his arm got stuck in his highchair toy... sorry, Brady, Mommy has to take a picture first before she can help you! :) ]

Saturday, September 30, 2006

General Update

I had called the geneticist about the results of Brady's calcium test and she replied back that they had elevated again - they were 11.8 now. They had previously been 10, 10.5, 10.8... kept rising over the past year. She contacted the nutritionist, who made an appointment with us next Thursday at (ugh) 7:30 a.m. in town. She will probably outline a new diet for Brady. Catch 22 - the more formula he drinks, the more weight he gains - the more formula he drinks, the less food he eats, which will create more sensory issues later on. Plus he can't be only having formula all the time - he'll be a year old in less than a month! She told me not to add any yogurt or cheese (we were doing Yo Baby yogurt) and not to add any powdered formula to his food right now either (we weren't doing this but I had inquired about it for weight gain). We'll get the whole update Thursday.

She did say we can start him on eating tiny cut up pieces of peaches and pears, which I started tonight. He had this questioning look on his face, but he did sit there and chew it. So funny! Our ST will be very happy. He didn't cooperate too much with her Friday morning because he had just woken up. He kept giving her strange looks, like, "Are you really here or am I dreaming?" Hopefully he'll do great with chewing the food and that will make her happy.

We missed PT this week due to a scheduling conflict and then a death in our PT's family, so it's been a whole week with no Lisa. Hopefully adding in the yoga will still keep him loose for her, but he didn't cooperate too much with that on Friday either. He was a little bit fussy, but I'm beginning to think he was more hungry and didn't want to stretch out. He did enjoy the bouncing-on-my-leg part, but other than that got a little finicky.

Next week we have OT and start swimming! That should be great for him, even though I have to get into a bathing suit. He loves the pool so I am pretty sure I wont have too many problems for him there. Apparently though, they keep the pool at 90 degrees, so I will probably want to come home and take a little nap.

At Michael's soccer game today he was very intense on watching the game - Michael yelled from the field, "Mom! Brady's watching!" He followed them up and down the field while sitting on my lap. At halftime he got fussy and I tried to feed him or stand him up, but not much worked. When the game started 10 minutes later, he sat right down and watched again! Amazing! That's all he wanted in the first place - to watch the game. Good thing - as a brother to Michael he'll be doing for years to come in all seasons.

That pretty much covers everything that's been going on lately - we have our year visit in a few short weeks and we'll see then if he's gained much more weight. He is definitely getting taller, as some of his clothes (thank god!) or FINALLY getting a little too short or stretched too far.

I'm in a funk ~ I'll try to corral my thoughts and write more later.

Monday, September 25, 2006

Optho Update

Today we had our follow-up with opthomology. We were there eight weeks ago and the doctor wanted us to patch Brady's left eye an hour a day to strengthen the right one. They were turning in a bit. Well, the pirate move worked! The doctor thought his eye was much better, and although the eyes still turn in a little, he does alternate using both of them which is good. He is also just maturing over all - watching people more, tracking better, and using both eyes, not favoring just one. We are to go back in January and not use the patch these next three months. We may need to re-patch in the future, or not at all. She thought he might outgrow it.

How cool!!!


The common conversation lately has been about Time. No one has enough Time. There's not enough Time to do anything fun. Are we spending enough Time with our kids? With our spouse? With our friends and family? Did we simplify our life enough to have more Time? Would we get more Time if we didn't work as much?

I'm a busy, get-lots-of-things-done, do-a-lot-for-others type of gal. I have a lot on my plate, but I don't crave the sit-down-and-do-nothing type of life. I like to keep busy. However, I have noticed that kind of lifestyle is not a particularly good one for Brady. He needs Time - Time to learn how to do things and Time to appreciate what he has already done. Since I am his primary caregiver, I have realized I need to adjust my timetable to better suit his.

One primary example is eating. Brady has a high-calorie formula and eating the Stage 2 foods, but he definitely eats more when we slow it down at mealtime. He is so funny, he sits and chews that Stage 2 food... and for those who don't know Stage 2 foods, it's the consistency of applesauce. But he's working those little teeth (all almost 10 of them!) and doing a great job for safe swallowing!

Brady is now 11 months and for the past month or so I have noticed a spurt of growth - mostly in his recognition of things and how alert he is. I also think that FINALLY he seems to start to care when I am not around. As some other moms of WS kids can attest to, this has been one annoying and painful part of WS - his lack of "caring" so to speak. But we are noticing around here he quiets down with me quicker and seems to be a lot more fussy when I am not here. I also see that when we are playing or laying around, he will watch for where I am - play play play, then look up and look for me. Once he sees me, he goes back to town. I was sure all these months he thought I was just another Adult Body... but maybe he sees that it is his mother after all (you know, the one that housed you for nine months???)

You'll see Brady in the Bumbo above - we're borrowing it from OT until we get ours next week. See how nice and straight his back is? I can just envision him in a La-Zy Boy chair with a remote and bowl of popcorn. :)

Monday, September 18, 2006

A Simple Sunday

I like my Sundays simple. I like the traditional getting up, going to church, relaxing around the house, getting things done, listening to football... nothing too strenuous or too insane.

This occurred to me yesterday morning at church. We found a parish we really like in the next town. My eight-year-old son is an altar server, with the blond hair and white and black robes, he looks like the poster boy for the Roman Catholic religion. I sat there, Brady in arm as he looked around at everyone. It was very bright, the sunlight streamed through the stained glass windows making colors dance on people's shoulders. Brady was captivated by these, moreso than the ceiling fans that rotated above. He would watch for awhile, then move his head down the rows of people, as if memorizing their faces. I would hear a chuckle, and know that someone was smiling at Brady, whispering how adorable he was.

After church we file into the gathering center for the required coffee and donut. However, neither my husband nor I drink coffee, and Michael can't eat the donuts because they come from a bakery that has a peanut presence in their food. Most of the times, though, we are able to gather a few Entenmenn's donut holes for Michael and Tom and I eat some bakery item as we linger with friends chatting about all we are up to. Our pastor left for Iraq a month ago and it is so sad to be there without him. He is a Marine who was called for duty, which he accepted for one year. We hope he will not be gone longer. Father Dennis was always quick with a joke, and seemed practically human (!!) when he told us stories of days B.P. (Before Priesthood)

Father Dennis somehow always managed to mention Brady during mass... whether it be to say, "Hey, Brady, your brother Michael is running for mayor" or to mention what a joy new life can be. He blessed him at every mass, and even at a few healing masses as well. I think that's what made Brady so famous... people would come up and ask "How's Brady doing?" and that sense of closeness and family is wonderful. It's as if he has 100 guardian angels looking out for him.

After church we head home for lunch and what not... this week Tom cleaned out the garage and made a storage shelf for the air conditioner. Michael played down the street with a few friends and Brady took a very nice three-hour nap. I picked up and busied myself around the house. To some it would probably be very boring... but it's these nice quiet times that I relish. Especially with the days that lie ahead - PT, OT, Speech, cardio, weight checks.... having just these simple times make the rest of the days not so crazy.

Friday, September 15, 2006

Eleven months and counting

I know it's been awhile since I posted, but things have been so crazy with the new school year starting, that finding time has been a real difficulty. Brady isn't on a real "schedule" so even now, at 11:45 at night I type with one ear listening if his pacifier has fallen out of his mouth.

Today was the first of two new activities: storytime at the local library and Itsy Bitsy Yoga. I signed Brady up for storytime for the lapsit program at the library just as I had with Michael, but when he was six months. The age range was up to two years with Brady's program so I figured there would be a broad range of kids there. Michael and I had done storytime and had a blast - we met some of our best friends there, so I was excited to get Brady going.

I have to admit I did have a little trepidation; after all, Brady was not going to be doing what the other 11 month old babies were doing. I was even thinking that among the babies there, I would have the "special needs" child and I wouldn't really click with anyone there. It was even mentioned to me by a friend that maybe I should wait to go with Brady when he's older to "get more out of it".

But then I remembered why I signed up in the first place: even though Brady is kept quite busy with his doctor appointments, he visits with friends but that is it on any "normal" activities. Why shouldn't I do the things with him I did with Michael? This would be good for Brady, and me, because that's how we plan on raising Brady - he can do whatever he wants to. Meaning that we will raise him with the notion that he has no ceiling, no "he can't do this or that because of William's". Any limitations he has in his life will not be because we don't think he can't do it or that he hasn't even tried.

Storytime was fun; nothing thrilling but not complicated either. There were three toddlers in the 17 month range, twin girls and another baby who were all about 8 months, and Brady. When we first introduced ourselves I mentioned he was 11 months old - got the look of "wow, is she sure he's that age?", then proceeded to say he was a peanut. Someone asked, is he crawling, walking, etc now. So, knowing we were now to see these people for two months, said, "No, he has William's Syndrome, a genetic condition where he develops late. He'll do all those things next year, probably." I said another line or two but that is basically all I said. I was happy to see that when the librarian read the book to everyone, Brady watched her and the pages. He watched everyone a lot and didn't cry at all. They all loved his natual mohawk.

Yoga was a bit less intense. Brady was the oldest, but since there wasn't time for chitchat, I didn't have to explain why he wasn't crawling or chatting away or trying to walk. I did have to fill in every line on the medical history paperwork, though. With Michael, it was just "Peanut allergy". With Brady Bunch, checkmark "yes" for cardiac problems. Has he had surgery" "Yes" for inguinal bilateral hernias. Any other conditions? "Yes" for William's Syndrome. Anything to be concerned with health-wise? "Yes" for low muscle tone and tight joints. We're not taking any meds right now, so that was one box I could leave empty.

The yoga was wonderful, though. Some of it was the same as his PT work, but he went with the flow, and seemed to be really watching me when I said in my sing-song voice all the little drills. The mirror wall was great to watch him when he turned away from me and I could see how he sat nice and tall. The end had a little darkened-room quiet time where I am sure many a mothers have fallen asleep.

It was a strange day; such ups and downs. In one instance it seemed like William's was the center of my attention, whereas in another, it played no part at all. I'm sure most of my days will be like that.

On a side note, Lisa, his PT, came armed with a better sitting position in his high chair last Thursday. Apparently she's been reading my blog and not too happy with the Braidster slouching over in his chair in some pictures I posted. It's actually the foam bath teddy bear you buy to give your newborns baths in. Well, when you turn it upside down, the head part is perfect for Brady's little butt. That's him, above sitting straight and tall in his chair now. It's teaching me not to slouch too much.

Friday, September 08, 2006

Brady's trip to the Geneticist

Today we had our yearly visit with the geneticist. It has only been six months since we last saw her, but from now on it will be yearly. She basically asked questions about his development and checked him over before we had to bring him for blood and urine testing for his calcium level.

She said his muscle tone was pretty much in the realm of what they expected, although she was plesantly surprised that he would grasp her fingers and pull himself up to a sitting position. She noted he was tight in the hips and knee, which we knew, but overall said she was happy with his PT work and we must have a great PT. Yeah! Thanks, Lisa! (That's Brady doing PT on the left).

However, she did say that she would have expected his speech to be a little more progressed by 11 months. He is saying the vowel sounds (luckily in her presence, too) but not babbling as often and she questioned his hearing exam. Apparently our January 5, 2006 hearing exam wasn't in the computer at Children's Hospital so she didn't know he had a retest (he had failed his left hearing exam at birth). I told her he did pass it and that I would fax her my paperwork on that. I will mention it to our Speech Therapist and see if there's anything more we can do regarding his speech. He only started the "chewier" foods recently and I know that is a big help on his cheek muscles. He did seem to enjoy the popsicle I had last night, so maybe we can start him off with ice cream sundaes! :)

She also mentioned we don't need to see Neuro, which our pedi had wanted us to check (because of his delay). Yeah! One doctor we don't need to go to! My mother, who was with me for the visit, asked the geneticist half kiddingly when Brady would smile. The doc smiled and said she knew he would smile, but couldn't give her a date, like December 6th. So, of course, we all think he's going to give us a big broad one on December 6! :) Later on, though, my mother was chatting with him and he gave her a half-smirk that she said, "I'm counting that as a smile!" Which of course I responded, "That's because you just want to tell everyone the first thing he smiled at was his grandmother!" :)

One other sidenote, the geneticist also commented that we were getting a lot of services for Brady - something to be thankful for, I know. We currently have Physical Therapy twice a week; Speech once a week; Occupational Therapy every other week; and we will start swimming with OT every week at the end of Sept. I'm not sure what other parents are doing for their child with WS, but I am glad we are doing as much as we are. I have also signed him up for yoga classes with a girlfriend on my own, and that will be once a week for the next eight weeks. It will be a good thing for Brady, but also a little guilty pleasure hanging out with Angela and James. :)

Tuesday, September 05, 2006

Simplify your life

At what age is it that you realize it is just not that important? And by "it" I mean... pretty much everything you thought was important?

Think about it: a fire erupts in your house. What do you grab as you run out? It's an age-old psychological move to show you how "things" are replaceable, the fact that you left the house was what was important. You have yourself... your friends, family. A year ago we discovered that my 86 Barbie dolls were laying in a moldy water-soaked box in my basement. Now, if you know me, you know these were the complete signature of my entire life. They were all I ever loved. I would once-in-awhile let an old boyfriend's daughter play with them but only after she washed up first. Then to come and find out they were all gone.... there goes my childhood.

I'm not sure what I was planning to do with them. Give them to my non-existent daughter one day, perhaps? Be buried with them? All I know was that I wasn't about to EVER toss them. So the decision was taken away from me. I had no choice but to let them go. After I made the long procession to the trash can with the box, quietly humming "Be Not Afraid" to myself, I realized that I just threw away the one absolute thing I wouldn't ever throw away. I realized then that I could let things go.

Now "things" has a pretty wide description. I do keep samples of Michael's pictures he draws, copies of some of his work from each grade, just so one day he can look at them and see how smart he was. I am learning I don't need to keep the statement of every electric bill, phone bill or credit card after reconciling. Shred, shred, shred. I am letting go of baby clothes that I know I wouldn't dress my children in, but kept because they were decent wearing and fit. Donate, donate, donate. I am not volunteering for every event the school has or going to every Scouting or sport or whatever event either. Rest, rest, rest!

I have to remind myself every so often to simplify things: to let go of projects that aren't working, to relinquish control of ideas that don't help, to clean up and throw out, and to realize when sometimes you have outgrown people, places and things.t's not sad... it's a little exciting to know you are moving forward with less to hold you down.

Thursday, August 31, 2006

Weight update...

WELL>>>> Brady is enjoying this game-playing he is doing. Twenty-one days ago he was 13 pounds. By gaining a 1/3 of an ounce a day, it would have been good if he was 13 pounds, 7 ounces. Notice I say "would". The Braidmaster was 13 pounds, 1 ounce. So, he didn't lose, although he didn't gain nearly what we would have liked.

I am touching base with the nutritionist today, but the pediatrician did make a couple of notes to me. First, he is not going to be doing any rapid-gain now like newborns do - they slow down on the weight gain, and the chart reflects that. Secondly, he is eating more food now (loves those 2s! Had chicken and apples last night and ate almost the whole thing!) whereas the formula has more calories. I will talk to the nutrtionist about that, because Brady is only eating two meals a day and formula for the rest, she might like that. Thirdly, he is getting longer - 25 1/4 inches - and he is not vomitting or having diarhea, so it's not like he's getting the food then getting rid of it - he's just not getting enough calories in. He is also doing really well with all his therapies.

Brady Brady Brady... will you never cease to drive me crazy???? I could have sworn he would have been OVER the seven ounces. I will fill you all in with the nutritionist's outake. The pedi wasn't too worried - we're not going back for three weeks.

Monday, August 28, 2006

Get a grip!

So, here I am again... second guessing myself. I'm not going to move Brady up to the "2" foods until I talk to the nutritionist??? Egads, this boy is in big trouble. Obviously, I just did what I wanted with Michael [or, what my mother said. :) ] I mean, c'mon, it's only peas and pears!! [not together, of course]

I know I will be consulting doctor after doctor for a long time... well, forever, probably on everything under the sun with Brady. But can I make a decision like this? You know... I WILL! That's it, he's moving up!

So, guess what? Brady LOVES the "2" foods! He definitely eats more; I think he didn't like the slippery goop of the "1" foods. Plus his speech therapist is much happier, since he is using his tongue and muscles in his cheeks more. This also made me feel like a "typical" mom again, which of course I have NEVER felt with Brady, since only moments after he was born he was whisked away due to his poor breathing. Worry, worry, worry, right from the start! How nice to get a little normalcy back. Everyone should try it! :)

[okay, I'm going to email the nutritionist right now to make sure I didn't make some awful mistake.... :) ]

Friday, August 25, 2006

Apparently, Brady enjoys a little midnight snack. I had to share these... he was crying crying crying last night at 10:30 and wasn't too keen on the bottle. I was thinking how he didn't eat a lot at dinnertime and I knew he has two teeth I can see trying to pop in on the right side.. so I pulled out a Yo Baby yogurt and figured I'd give it a shot.

Well, Brady Bunch went to town! He kept opening his mouth and whine if I slowed down shoveling it in. I think the coolness really helped his gums. He never takes ANYTHING that isn't warmed and won't take the refridgerated teething toys, but he took the yogurt no problem. He has had it a few other times, mostly only half, but he downed the whole container last night.

And, yes, he ate bib-less so you can imagine my clean-up after. He looks so relaxed hanging out in his chair... this is how he normally sits when he's just hanging out... what a guy!

Tuesday, August 22, 2006

Our new Occupational Therapist Tara left a little while ago and I am filled with so much more info! She is very sweet and I think will work very well with Brady. We sat and talked a lot about sensory issues and it made me realize so much about Brady that makes sense.

William's kids can have sensory issues, as do other non-William's kids, and she gave me a ton of tips on how to help Brady. I always joke about how hard we pat his back, it seems like we're really whacking him, and he settles by it. Apparantly, this is normal. Patting lightly or lightly touching is annoying to sensory kids, and I realized as she spoke I am the same way. Unless I'm getting a massage, I don't like being lightly touched or patted on my arm. Who'd know that??

Tara said tickling is actually a huge no-no with low tone, sensory-sensitive babies. Grabbing them deep is okay. She said when we're just hanging out we can be rubbing his arms and legs, as it desensitizes him. You figure the more they are worked, the more it desensitizes them.

Tara explained that scenario with a great example. She went to a conference where the speaker had a baby who did not crawl or walk. (I forget the age - maybe a year?) The speaker took two vibrating machines and attached one to each hip. It "woke up" his body. The brain now realized his legs were there. He crawled and walked around.

There is also a therapy for sensory kids where you brush them with a steel brush (not painful!). I had heard of this from another friend who had used it on her non-WS daughter. Tara said she has used it many times where you brush the child for two minutes every two hours. More than one time, over the course of a weekend, the child will walk and crawl and sleep through the night. She's going to bring the tapes at our next meeting in two weeks and hopefully we can start learning about it and maybe seeing if it is something that will work for Brady.

I never thought too much about the sensory stuff, but as she spoke I began to see where it affects Brady. He loves sleeping on the rug or the rough couch or the hard bed in my room. It comforts him to be whacked on the back, so to speak. He is also comforted by rolling him back and forth. Now that I am aware, I can use this knowledge to my advantage and start working on him.

Monday, August 21, 2006

Ahem, and how old is your baby?

We have been keeping ourselves busy with birthday parties and cookouts, some with close friends, others with friends we see once a year. Yep, you know the million dollar question I am asked most often! Ready, everyone together, one, two, three... "How old is he?" And then the inevitable, "Well, what did he weigh at birth?" (Brady was 7 lbs, 7 oz) with the follow-up (after a long pause), "My child/nephew/niece/neighbor/etc was already 43 lbs when s/he was 10 months old..."

Now, I have no problems with people asking my Brady's age. Nor weight. Nor telling me their life story of babies and weights in general. I am just realizing that Brady is at an age that since he now should be bigger, I am going to get a lot more questions. When he was younger, he could still be little and people didn't think too much about it. But now that he's 10 months, people are going to want more info. Sometimes they get it, sometimes they don't. It depends on whether or not I have the energy to get into it with them at the time.

You know, you're at the mall and you get the questions above from a fellow customer in a shoe store. Do you explain he has William's Syndrome and that's why he's small? Oh, what was that? What's William's Syndrome? Oh, it's a genetic syndrome... blah blah blah. Oh, no it's not hereditary. Nope, they do a test... blah blah blah. Yes, he'll be delayed, yadda yadda yadda. Are we going to SEE this woman again? No... so you don't get into all that, you just smile laugh a little at what she says, say "I'll keep this little peanut" and move on.

And then there are the friend-of-a-friend people who you might run into again. Maybe you get the story, maybe you get an abbreviated version. TOTALLY depends on my time and energy.

At the birthday party we went to recently, there were three other babies there, one a month older and two who were three months younger. He kind of did what the others did - look around mostly. One adult kept trying to get Brady to smile, but I didn't tell her he didn't yet. I just let her go at it. No one asked me what was "wrong" with him, he seemed to fit right in. I'm not sure how long that will last, but it was relaxing for the time being.

And he might actually be getting on a schedule! Folks, I was the first to think it might not. I am sure writing this down will probably nullify it, Murphy's Law and such, but we'll see.

Wednesday, August 16, 2006

Happy New Year!

Wow... only three weeks until the new school year begins. My eight-year-old is getting excited although he vehemently denies he likes school -- of course this is the child who WON'T miss school because he wants the perfect attendence certificate. He's also wondering when we're doing our back-to-school shopping.

It's also this time of year that I would write my famous "It's not January 1, but it feels like the New Year" editorial in my former life as the editor of a local newspaper. The thought was that it always seems to be that back-to-school days were more of the beginning of the new year rather than January 1. It's time to declutter, change over clothes, make new goals, start a diet or exercise regiment, etc. In fact, as I sit here I am also planning my To-Do list for tomorrow, which includes some major cleaning around the house. (Have you done the 15-minute Flylady challenge? Set the timer and go file, make the beds, clean the kitchen, whatever, and when the buzzer rings you will most likely already be done. You can even race against the clock.)

It's amazing... it wasn't that long ago that I wrote that editorial, that I quit that job to have Brady, that I carried Brady for nine months not realizing that something was up with this kid. It was a normal pregnancy; in fact I didn't gain too much weight during it (all right, I was a little heavier than I should have been to start with!). It wasn' t that long ago that Tom and I chatted about names or when we went for the ultrasound to see what we were having. And here we are, coming up to almost a year in two more months and it seems now to have flown by.

Heck, I look at Michael and wonder where this eight-year-old came from. Kindergarten had seemed so far away, now we're talking about third grade. Wasn't he just walking?? Watching Brady has made me realize how old Michael is and how fast time has flown by. In a sense, it's a little miracle that we have Brady as a baby longer than average, even though I don't doubt he will do all the things he is supposed to do.

I figured Brady's baby days would be like Michael's... a happy-go -lucky baby, sleeping through the night almost from the start, eating anything and everything, walking early, and chatting up a storm. Brady sure taught me many lessons... never assume, be happy with what you have, and enjoy the present are just a few of the ones I can think of now. But the boys are similiar in many ways. Brady goes with the groove as does Michael, he's willing to try any food at least once, and he's always there to make me smile. I can't imagine having Brady any other way than how he is.

Friday, August 11, 2006

Another day in the life of Brady Joseph

Brady had his weight check yesterday... he was 13 pounds. If he gained 1/3 an ounce a day since his last visit 29 days ago, he should have weighed in at 13 pounds, 5 ounces. Ugh.

But, like I told his doc, who told me "Kerry, you always have a reason" (haha) he gave up his baby food for two weeks when the temps were in the 90s here. He had more of his bottle during that timeframe, but did NOT want the food. I know it is common for babies to not eat in the heat, and the doctor gave Brady a pass, but now she wants to see us in three weeks instead of four. I am thinking of slipping in some protein bars and shakes inbetween his oatmeal and prunes. :)

When Brady's speech therapist came over yesterday, she did massage his gums and inner cheeks with the baby-toothbrush-thingy-on-a-finger. I guess it either is or is like the Nuk brush recommended to me from other moms. Brady was very patient with Vicki and let her do it for quite awhile. Lisa, his PT, also noticed he did a smirky-smiley-thing when she tickled him in his belly and ribs. SO close to that smile! I have hope now.

God Makes No Mistakes

Maybe we're all different but we're still the same
We all got the blood of Eden running through our veins
I know sometimes it's hard for you to see
You're caught between just who you are and who you want to be
If you feel alone and lost and need a friend
Remember every new beginning is some beginning's end.
Welcome to wherever you are
This is your life; you made it this far
Welcome, you've got to believe
That right here, right now
You're exactly where you're supposed to be
Welcome to wherever you are
When everybody's in and you're left out
And you feel you're drowning in the shadow of a doubt
Everyone's a miracle in their own way
Just listen to yourself, not what other people say
When it seems you're lost, alone and feelin' down
Remember, everybody's different; just take a look around
Be who you want to be
Be who you are
Everyone's a hero
Everyone's a star
When you want to give up and your heart's about to break
Remember that you're perfect; God makes no mistakes.

- Welcome to Wherever You Are
by Bon Jovi

Okay, I admit that I am on a Bon Jovi roll now since seeing them in concert. However, when I heard this song and read the lyrics, I could not believe I hadn't picked up on it before. This song is so ME... so "here's-your-life-deal-with-it-because-everyone's-in-the-same-situation".

I swear it's some little beeper God has. Whenever I start to think about how tough things are for us, how we won't know what's to happen with our little Brady, something else comes along to distract me, or remind me how lucky we are. I am sure all of us moms who visit the hospitals frequently with our kids see the other children in there who are so much more challenged. I'll never forget the first time I brought Brady in and noticed these kids who were hooked to machines, or unable to communicate, or were extremely handicapped.

I just watched the 60 Minute tape and Chronicle show that focussed on William's Syndrome and interviewed WS children and adults. I wasn't sure what to expect... but I wasn't very surprised with the information I learned. I was most happy with Morley Safer sitting with all these kids and asking, "You guys are just always happy, aren't you?" and he was answered with a resounding "yes!" from everyone. There were some touching moments as well, when the college-age girl asked, "Why don't the kids in class who say hi to me ask me to do things with them on the weekend?" That was tough. It will break my heart if my child has to wonder things like that.

But then, as I sit here and write, I am brought back to the same thinking that I've always had, that brings me to reality - we have no guarantees about ANY of our children, WS or not. It just comes with the territory of being a parent. I have no idea if my eight-year-old Michael will have problems getting a good job and live on his own and get married. Since he doesn't have WS I am sure I have certain expectations for him in my subconscious... but maybe he won't meet them. I have no idea. And I can't worry about that now. I'm worried about fitting in his birthday party before school starts, about what he's got up his sleeve for us to do today because I told him he could pick.

But I do like the line in the song that says, "God makes no mistakes." Another reminder that we are all here for a reason...

Wednesday, August 09, 2006

And what did YOU do today?

Today we saw our new OT, Tara. She is going to be a great addition to Team Brady, I can tell. She will start at once every other week, right now doing some of the same stuff as his PT and Speech. As he gets older she will work with him on his fine motor skills. She will also be working with him in the pool (yeah!) beginning late September when a spot will be open. In the meantime, she will call me when she has any cancellations for pool time.

Yes, the calendar is really filling up! We have the Cardiology appt, the Opthamologist appt., the Nutritionist appt. (oops- need to make that one), plus the now-monthly (yeah! only monthly right now!) weight checks at the pediatrician's office, and now it's PT twice a week, Speech once a week, OT every other week and possibly pool time... did I mention I have an eight-year-old, a husband, a home to take care of, I volunteer at school, I volunteer with Cub Scouts, I work two days a week, a friend and I are making plans to start a business, and, if I have a free moment, I'd like to see friends, family and pet my cat so she doesn't pee on the floor anymore because she's feeling neglected?

Of course, you know I wouldn't change a thing except add three more hours to each day. :)

Thursday, August 03, 2006

Just a Quick Note...

...about Brady's visit with Vicki, his Speech Pathologist. She came this morning and started working with Brady and I asked her about his lack-of-a-smile. He's been doing different facial gestures, but we're still lacking that all important one! She said it's because he has low muscle tone, which is common with WS kids. You can see it in his cheeks - they droop (I thought they were just chubby!) - and at rest the corners of his mouth turn down. We can help him out by massaging his cheeks. He will also gain strength by eating, which of course he hasn't been having as much food as bottle in all this heat we've been having. You can see in the picture from two entries ago.

Wednesday, August 02, 2006

Oohh... a Camping we will go!

We went camping for a few days with friends in the White Mountains in New Hampshire.. what a great trip! It was about 20 degrees cooler and beautiful views all around. After we got there, the site was put together pretty quickly then we all headed down to the pool. It was a gorgeous pool, with a wide staircase and two water slides amidst a "sunken" pirate ship and cavern. After lotioning up Brady with the 50-proof we headed into the water. Brady, donning his camouflage hat, swatted at the water and leaned forward to drop his face in it. If he got too much in his face he would go cross-eyed and shake his head... never crying!

Brady was a great camper, sleeping when he was supposed to, and loved sitting and watching the fire. He was mesmerized by the flames. He did great while we were making s'mores for the kids. All and all, a fabulous few days. Tom still has the rest of the week off so we're doing a few days trips and then giving him some time to play golf.

In other news....

I have noticed Brady is getting a little bit better on a "schedule". I had no problems getting Michael on a schedule but I'm beginning to think he did it himself, that I had nothing to do with it! It was so hard to get Brady on a schedule at the beginning because he was eating on demand so that was pretty much shot. Now that he's doing better in that department, I'm thinking he should be settling in for the night after dinner time, maybe waking up once or twice to eat, but that's it. Right now, he does settle in for the night but it's usually with us in the living room. He'll stay asleep amidst all the noise; in fact I think that's what KEEPS him asleep.

He's looking pretty big in his infant car seat.. I hit some great Children's Place sales today and bought the next size up... how exciting!

Friday, July 28, 2006

A lot has happened over the past few days that I haven't had time to post. Let's see if I can remember it all...

On Tuesday night Brady rolled over to his stomach - this time it was seen by a REAL person! (Brady has rolled over two other times but not in front of anyone.) Tom was lucky enough to see this. He rolled over, then laid there and went to sleep. (above) What a man!

Brady has been growing and maturing in all aspects. He has constantly more eye contact, and his 3-6 month clothes are getting a little tight in the length. He seems to grasp things more, and definitely moving around a lot as well.

We went to the Opthamologist yesterday, as was requested by his geneticist that he see one before he turned one. His eyes also turn in sometimes as well, so I was very excited to go to see if he had trouble seeing or what was up. His eyes have gotten better over time, though; since he has been focusing more on things I am noticing his eye turning in a little less. The doctor has suggested to patch his left eye an hour a day to strengthen his right eye. We'll go back in eight weeks to see if this has helped. He may need glasses at some point, and although having glasses is common with William's, my side of the family is also sight-challenged! We also had a blood draw to check his calcium levels while we were at the hospital. After, my mother, Michael, Brady and I hit the Country Buffet restaurant... Michael likes to wait on us. It's great, my mother and I can talk and tell Michael to get us a Pepsi, chips, or whatever! I highly recommend it if you have an eight-year-old.

And to top off the day... we went to Bon Jovi with Nickelback opening. It was a fabulous time! I did not tease my hair big as I threatened to do, but there were definitely some '80s songs blasting through. (Thanks Mich and Sam for a great time!)

Monday, July 24, 2006

The Gift: Lessons Learned

I met up with my girlfriend last week whom I haven't seen since Brady's christening. She and I have been friends since sixth grade (we did have a year or two in high school that was, well can we say very high schoolish and we weren't that close. What we can see when we're older!). She is someone I can count on to be truthful, yet sensitive and I have always admired her for that.

We sat in her den, talking about our kids when the subject turned to William's Syndrome. She was asking questions about Brady's issues and what we've been doing. I responded with my usual about delays in toddlerhood and probably needing some help in school; healthwise we are dealing with heart issues that we are monitoring, keeping an eye on his weight, and maybe some eye issues, we find out this week. I gloss over the topics that I don't like... 55% of the children examined were found to be severely mentally handicapped, 41% were moderately mentally handicapped, and only 4% of the children had average ranges of ability... Some live in group homes with other adults with a variety of disabilities, and some prefer to stay at home with their parents.

There it is again... that little voice that is at the back of my head that reminds me that my child will never be like his brother. That he will struggle with abilities others take for granted. That voice that I squash when I talk to people about his future. It's a part of William's that I don't like to discuss. Funny, I have no problem talking about his heart condition, which is ten times more important and serious than whether or not he works behind a counter in a drugstore rather than becoming a brain surgeon. I know this. I know what's important. I know in the front of my head that him being a happy person and becoming a healthier person is more important. But it's the little voice in the back that nags me. In my solitary moments of non-optimism (I just made that word up, but it so fits) I am reminded of what he may not become.

And as I sit with my friend, I feel as if I am not being fair. I know I will have my non-optimism moments. We all secretly like the fact that with William's there are no absolutes, there are no glass ceilings. Each child is diffferent in their abilities, so some will excel where others do not. This way, we can all say to ourselves, "My child will be the one that isn't affected as much."

But then I came across a scrapbooking layout in a magazine recently. It was made by a mother whose eighth child had Down's syndrome. The mother's journaling went something like this: "We've reflected a lot on Joseph and his Down Syndrome since his birth. After all the thoughts, prayers and pondering, the one simple conclusion we've come to, the one truth we now believe with all our hearts, is simply this: Joseph's condition is a gift. For Joseph it means he will be free from so many cares in the world. He will live out his life with no guile, with no unkind thoughts. Our gift is that we have the joy of this little angel in our midst. It makes all of us want to be a little better, to reach a little higher, to love a little deeper, to be a little more grateful."

Wow. Could not have said it better myself.

Saturday, July 22, 2006

The Team is Set

Brady has been in a little growth "spurt"... he's doing his funky faces, moving all over the place (everything but the actual rolling over - although I think he did roll off the couch but I didn't technically see it), turning towards people talking, and really watching people and animals (that's him with his friend Betsy Beagle on the above). His friend Kitty was pacing back and forth watching him today, and Brady followed her every move, talking to him and moving towards her. He'll sit on your knee and ride it back and forth like a horse, grasping his tiny hands around your fingers. His 3-6 month onesies and one-piece outfits are getting two short on him, although he has no butt or waist, so I'm not sure how he'll fit into the 6-9 month clothes. Already having his bottom two teeth, his upper left tooth has broken through and the other top tooth is just about to. It seems like we've been waiting for awhile for him to move forward, and I think we're finally getting there.

His PT Lisa excitedly told us the other day that we start OT with Tara in two weeks, and Tara will be the same person we'll be able to do swim therapy with. Lisa was thrilled we're matched up with who she wanted us to be set up with and feels we have a great team for Brady. Along with Vicki, his Speech Therapist, Lisa and now the new OT Tara, we are set for awhile as they go to town on Brady.

I am always hearing the same comments from different people ... what a difference in the quality of life Brady will have because he has started his Early Intervention so early. Ironically, it was because he had a heart condition that he was diagnosed so early. What a double-edged sword. Without seeing the cardiologist, we might not have known for awhile what was up with him. I constantly read about children who were diagnosed later on -- when they were years and years old, not months, and it makes me feel for those parents who KNEW something was amiss with their child but didn't know what it was.