Thursday, December 11, 2008

In the midst of Christmas shopping and celebrations, Brady, Grandma and I went to Brady's cardiology appointment today. It was his follow-up echo from his cath last August. My favorite part of the whole day was a little girl walking around the waiting room with a tray in front of her, stopping at every single person and asking, "Would you like a cookie?" She then handed out an invisible cookie. I watched her walk around and every person played along with her -- I love when everyone comes together for a greater good.

And now for the reason why we were there: the short version of the story is that Brady will have heart surgery in February. The longer version is that ever since Brady was one month old, we knew surgery was in his future. His gradient keeps going up, and his cardiologist, Dr. Marx, was only waiting until he was older to have the surgery. He said that a few pounds difference isn't really going to matter, and he was waiting for that big sign to get this going -- which was his level going up again after a few months. Dr. Marx said that some other cardiologists would have probably already done the surgery, but he wanted to wait as long as possible. It is surgery that will --hopefully-- only be a one-time-thing.

The good news is that his cardiologist said that Brady will be fine for the surgery, he doesn't really have any worries for him. Dr. Marx is a very straight, honest man who doesn't say things just to make you feel better, so I feel very confident since he said that. The bad news (besides the obvious) is that we're looking at a seven to 10 day hospital stay -- ugh. Brady will take a few weeks to recuperate, but I'm already thinking of the pounds he'll probably lose after all our high-calorie work!

We should get a call over the next week or so to put the date on the calendar. I am feeling okay, as I trust his cardiologist and I see how well Brady is doing. One day at a time...

Wednesday, December 10, 2008

Meet me in St. Louis...

How exciting - the WSA convention in 2010 is in St. Louis - woo hoo!! We head out to St. Louis every few years to visit family - my family moved from there when I was eight. The last time I was there was when my Uncle Joe died in 2005 - so Brady already had his first trip to Missouri(although he was in utero!). (Uncle Joe is who Brady is named after --Brady Joseph.)

There's so much to do out there - Nance, you WILL love the Arch! - but there's also the Saint Louis Zoo (free and HUGE!), plus the downtown area and tons of other stuff. We will all have a blast!

Wednesday, December 03, 2008

21.8 lbs tonight!!

My Brady gained ONE POUND AND THREE OUNCES in one month!

Holy cheesecake, Batman!

And for all the high calorie food I am giving him, I have gained three pounds. What I do for my children :)

Monday, December 01, 2008

Brothers


When I found out I was having Brady, I was excited for many reasons - but one of the biggest was knowing Michael would have a brother, a sibling. Even though they would be seven years apart, they would still have a connection and have a history like no friend can. I knew Brady would look up to Michael, and Michael would protect his younger brother.

And then we got the WS diagnosis when Brady was one month old. Again, I thought of Michael - was he being cheated out of a "normal" sibling relationship? It didn't seem fair, and there was nothing we could do about it. But after I read about WS, I realized Brady could still be the brother I had envisioned. Looking back now, I'm not sure what I thought would be the "right" sibling, but this was uncharted territory and I didn't know what the right answer was. So once again, my mind changed to what the "perfect" relationship would be.

However, I noticed that Brady's development was much slower than other WS kids. Even though all our WS friends were developing at different speeds, Brady was still further behind than everyone else. He wasn't crawling steadily until he was over two years old, still not walking over three. He vocalizes, but doesn't speak yet at three, either. What kind of relationship would my boys have?


Funny, if any other mother had come to me with these comments about her own sons, I could tell her that as brothers, her sons would have their own special bond, their own secret inside jokes, their own smiles for each other, regardless of ability. I could tell her that her older son would always protect her younger son, that her younger son would watch her older son constantly, waiting for the inevitable laugh. I would tell her that she would have incredible joy watching the two interact, knowing that their relationship wasn't tainted, wasn't anything different. Funny, I could tell another mother this, but until I sat right now and wrote it out, I couldn't tell myself.


I know Michael and Brady's relationship will grow and change, but I know that what I hoped would happened was achieved: the bonding of two boys that is inseparable.

Tuesday, November 25, 2008

Ode to Love Puppy

On Valentine's Day of Two thousand eight,
I was pleasantly surprised to find my mate.
It wasn't a girl, for that I am sure.
It was a puppy with red and white fur.


For months he hung around with the stuffed bear,
When, suddenly, my eyes opened up, excited to see him there.

With red hearts blazing all over his white frame,
I smiled at him, and Love Puppy was named.


My mom was excited that I loved this guy.
I couldn't care less before; now, I wasn't shy!


If Love Puppy was in reach, I grabbed for him fast.
If he wasn't, then I quickly moved my tiny little ass.


To hold him, to bite him, that's always my plan.
And if you don't give him to me, instead I'll bite your hand!







Sunday, November 09, 2008

What's wrong with you, boy?

It's official: Brady's getting older and less babyish which means... people are starting to notice he's different. I think he was such a baby before, people didn't think twice, unless they realized how old he was. When we go out now, he uses his walker a lot and is thus garnering much attention.



Last week, one woman asked me, "Is there something wrong with him?" when she noticed Brady using the walker after finding out he was three. I answered, smiling, "Nope, there's nothing wrong with him."



She went on to tell me very sympathetically that he will get stronger, have more confidence and not need the walker anymore really soon. How sweet. I suppose I wouldn't have minded the second comment if she didn't start off with "What is wrong with him?"



I like the kids better. "Why is he using that?" one little boy asked me when Brady and I got to school one day. I answered, "Because his legs aren't strong enough to walk by himself, so this helps him." He was happy with my answer and ran off to play. It makes sense to him - if you can't do something, have some help and you're all set.

Wednesday, November 05, 2008

Boo!


Brady was once again a blue monster for Halloween - he wore it last year, but he is too cute in it. I swear he'll wear something new next year!
Saturday we went to Lucien's house for the WSA Halloween party. Lucky for us, it was right in my hometown - how cool! We saw some old friends and made new ones - there were five teenagers there, four whom we had never met before. It was great to meet them~ we have always met the younger kids but only one or two older kids. They were very social, but also respectful and pleasant to hang around with. One boy, Josh, was dressed as Elvis, even able to sound like The King and do his stance. He also collected a few girls' phone numbers, quite a charmer!
I wasn't sure how I would feel meeting older kids with WS; it's like the future is staring you straight in the face, whether you want to see it or not. I was happy meeting these kids; it was actually a relief to see their independence. I know all kids are different, so what will be with Brady might be totally different.
Jen, as usual, was a fabulous host - although all Brady wanted to do was walk, walk, walk. He would take off in his walker to the rock wall, the woods, a tree.... maneuver then keep going. At one point he was trying to go uphill. Who is this kid???




Thursday, October 30, 2008

Quick update

In the two weeks since he started school, Brady has been moving along speed-warp style. He's vocalizing all the time, walking with his walker at great speed, and cracking himself up. LOVES school, not one grumpy moment yet on the new schedule (more than I can say for me!). When we get to school, I hear "Hi Brady!" from staff and students... everyone knows the kid with the walker! LOL

Don't want to get too excited and jinx his new educational career... but so far, so good :)

Saturday is the WS Halloween party - if you are in New England hope we to see you!

Thursday, October 16, 2008

Brady Goes to School

It was only two weeks ago that a group of people met to discuss Brady: therapists of all kinds, parents, a school director and a nurse. This IEP meeting came after two assessments and many conversations regarding Brady. For those unfamiliar with the initials, an IEP meeting is when all those who are responsible for your child's education plan meet and document their plan and goals for the year. So we had Brady's new preschool therapists there -- OT, ST, PT -- plus the school nurse, the director, and the person in charge of the transition from Early Intervention to preschool. Also at the meeting were his EI therapists -- OT, ST, Development and PT -- to aid in the transition and offer their experience with Brady. Luckily for us, his OT is the same for EI and the preschool, because she got a job at the school and will continue on as his OT.


I have heard horror stories about IEPs and frustrated parents not getting what they wanted for their child. However, I was unusually calm about the whole process, mostly because I thought it was pretty clear cut what Brady needed and there really couldn't be any disagreement about that. Yes, I know some parents out there are calling me naive, but since it was black and white for me, I knew somewhere deep down it would all be fine. I believe our EI PT, who is like one of the family now, was worried I would roll over and take whatever they offered. She was taking my calmness for push-over-ness. She needn't have worried about that; I was calm because I wasn't going to TAKE less than what Brady needed, PERIOD!


Apparently, EI therapists are suppose to tell the preschool what they have done in the past and then sit quietly. This did NOT happen with Brady's therapists! They were very forward in offering advice in Brady's needs. Personally, I would think this should happen at ALL transition meetings -- who better to know the child than the therapists who just worked with him for three years? Later, one therapist asked me if I was upset with her boldness and I replied absolutely not, and thank you!


There was no knock-down-and-drag-'em fight though -- all agreed the more therapy the better for Brady, and we only needed to ask for one more speech session to come to an agreement. The biggest change is that fact that while Brady is having two sessions of OT a week at the preschool like in EI, the sessions are 30-minute sessions rather than 60-minute sessions (Actually, at EI I believe they are 45 minute but they were always with him for at least an hour). This is a big deal for PT -- going from three hours a week to one (3 sessions at 60-minutes verse 2 sessions at 30-minutes). Some days we go in a little early or stay late to get all his therapy sessions in, but I think it will work out fine. I am comforted in knowing he will be doing more PT, OT and ST during the regular class time in regards to play, circle time, etc. He also has someone with him at all times, which was a concern for his EI therapists. Phew! This all went like clockwork.


So, last week we went for an hour to the classroom , where he played with the water table and had snack with his "friends". He is such a peanut in there -- he comes up to the shoulder of the shortest kid in there. He did great, and continued to do great when he started on Tuesday. In fact, he walked in with his walker and went right to the water table! Got a sharp memory, that one!
Brady is going every day but Wednesday, which I will plan his Music Therapy and try to make doctor appointments, or just chilling out time. He's at the school for anywhere from 2-1/2-hours to 3-hours a day. How strange to have him be somewhere else, not at home waiting for the next therapist to come. I'm transitioning pretty well, too :)

Monday, October 13, 2008

Happy Birthday Brady!!


It is the cherished boy's birthday! We celebrated last week with a party with friends and family, so when his actual birthday came, I was like, "Oh... should we sing to him again??" Tom and I were coming home from Maine and Michael wasn't even home til dinnertime from camping with the Boy Scouts, which is when Tom had left to watch the Sox (boo hoo... don't get me started on that!).


But I do want to mention to people out there who have babes younger than three and wondering when their development will start coming... BOOM! These past six months have been an incredible change of tides for Brady and I want people to NOT worry... it happens! Brady has such low tone and was (is) behind everyone, WS and not, it seems like I would never be able to utter those words.


So, congratulations, little buddy on hitting yet another milestone and working so hard :) Now we're off to a new adventure, with preschool and therapies AT school... no more home visits

:( We will miss everyone.


Next up: Brady's first day of preschool!!!

Thursday, October 02, 2008

What we've been up to

I have lots to talk about, but I will break it up in a few sessions. I was intending to do the "31 for 21" challenge again and post every day in October, but I don't see it happening! (Especially since it is already October 2!) In a nutshell (and with pictures!), here's what's been going on:

Brady has been getting quite interactive and movable! He does gravitate towards his toys more, and into things where he might get stuck (yes, he was stuck in the toy box but I had to take a picture first before I helped him out!)




















We had Music Therapy with our friends Lucien and Coleman, both with WS. We're getting quite a little gang going on here - I think they are beginning to interact with each other more. Although they are both two, Coleman and Lucien are developmentally ahead of Brady, and hanging out with them has certainly helped him.
We went to the zoo with Angela, James and Ben on a glorious September afternoon. The deer followed us like a pack of dogs as we walked through the deer park.




Funny little guy, Brady has quite the personality and hardly sits around anymore "like a lump" as I used to call it.
We had to go pick up popcorn for the Cub Scouts fundraiser - packed to the gills!
Upcoming posts include Brady's early birthday party and his IEP meeting! Stay tuned, I promise it will be soon :)

Wednesday, September 17, 2008

Be kinder than necessary,
for everyone you meet
is fighting some kind of battle.

Friday, September 12, 2008

Prayers

Putting things in perspective. That is how I live my life. Not having oodles of extra money, but having caring friends and family. Not being model thin, but having good health nonetheless. Brady having Williams syndrome, Brady not having anything worse.

Our PT is going to a funeral this weekend for a nine-year-old boy who died after a two-year fight with leukemia. So, when he was seven, his parents were told their son had cancer. It's so hard to fathom they were given this news about their little boy. It certainly reminds us all how lucky we are.

I think I touch upon this topic frequently in my blog because not only is it so true, but I am almost ashamed of people telling me how great I'm doing with Brady, how proud they are of me. I DO appreciate all the good thoughts, (and sometimes I need encouragement) but what other people go through are ten times more than me. I am just doing what ALL moms do, special needs kids or not; they take care of their family.

My heart goes out to this boy who lost his battle and his family. Please send your prayers. Thank you~

Monday, September 01, 2008

Another Day in the Neighborhood


It has been a strange couple days. We've been getting ready for school starting tomorrow, little projects around the house and setting up the Fall calendars. Nothing really out of the ordinary.


We get up in the morning, I sit Brady in his highchair, hand him his Poptart and he starts eating it. As the day progresses, I may bring Brady into the living room amongst all his toys (I have found leaving them all over the floor is much easier for him LOL) and he crawls from toy to toy, bangs on the ones to elicit songs, climbs up onto the scooters to move the steering wheel back and forth like he's driving, scoots over to the fence to tease the dog for kisses.


For lunch, he devours cream cheese on crackers, scowls at me when I give him baby veggies, opens his mouth wide for pudding. Manages to get Oreo slime in his hair, on his arms, behind his neck. Throws a fit when I clean him up. When he goes into his crib for a nap, he stands at the end and calls for half an hour.


When I need to start dinner, Brady will get some fun exciting Wiggles time - he sees the opening credits and smiles big, some kind of excited laugh comes out. He plays with his toys, sporadically turning around to the TV to watch the Wiggles dance and sing.


Wait a minute... can it be... he's acting like a... toddler?? Wow... it just all of a sudden hit me that he's acting more toddler-ish than baby-ish. His low tone has held him back for so long, but it is now an area that has progressed significantly. I feel like some weight has been lifted off my shoulder, that as his third birthday draws near, it will not be the same this year as it has been.

Friday, August 29, 2008

Time Out for Some Humor

Thank you, Jean, for my smile today :)

Here's a prime example of Men Are From Mars, Women Are From Venus offered by an English professor from the University of Colorado for an actual assignment.

The professor told his class one day, "Today we will experiment with a new form called the tandem story. The process is simple. Each person will pairoff with the person sitting to his or her immediate right. As homework tonight, one of you will write the first paragraph of a short story. You will e-mail your partner that paragraph and send another copy to me. The partner will read the first paragraph and then add another paragraph to the story and send it back, also sending another copy to me. The firstperson will then add a third paragraph, and so on back and forth. Remember to re-read what has been written each time in order to keep the story coherent. There is to be absolutely NO talking outside of the e-mail and anything youwish to say must be written in the e-mail. The story is over when both agree a conclusion has been reached."

The following was actually turned in by two of his English students:

THE STORY:

(first paragraph by Rebecca)
At first Jennifer couldn't decide which kind of tea she wanted. The chamomile, which used to be her favorite for lazy evenings at home, now reminded her too much of Carl, who once said, in happier times, that he liked chamomile. But she felt she must now, at all cost, keep her mind off Carl. His possessiveness was suffocation, and if she thought about him too much her asthma started acting up again. So chamomile was out of the question.

(second paragraph by Gary)
Meanwhile, Advance Sergeant Carl Harris, leader of the attack squadron now in orbit over Skylon 4, had more important things to think about than the neuroses of an air-headed asthmatic bimbo named Jennifer with whom he had spent one sweaty night over a year ago. 'A.S. Harris to Geostation17,' he said into his transgalactic communicator. 'Polar orbit established. No sign of resistance so far...' But before he could sign off a pluish particle beam flashed out of nowhere and blasted a hole through hisship's cargo bay. The jolt from the direct hit sent him flying out of his seat and across the cockpit.

(Rebecca) He bumped his head and died almost immediately, but not before he felt one last pang of regret for physically brutalizing the one woman who had ever had feelings for him. Soon afterwards, Earth stopped its pointless hostilities towards the peaceful farmers of Skylon 4. 'CongressPasses Law Permanently Abolishing War & Space Travel', Jennifer read in her newspaper one morning. The news simultaneously excited her and bored her. She stared out the window, dreaming of her youth, when the days had passed unhurriedly and carefree, with no newspaper to read, no television to distract her from her sense of innocent wonder at all the beautiful thinks around her. "Why must one lose one's innocence to become a woman?" she pondered wistfully.

(Gary) Little did she know, but she had less than 10 seconds to live. Thousands of miles above the city, the Anudrian mothership launched the first of its lithium fusion missiles. The dimwitted wimpy peaceniks who pushed the Unilateral Aeros Peace Disarmament Treaty through the Congress had left Earth a defenseless target for the hostile alien empires who were determined to destroy the human race. Within two hours after the passage of the treaty the Anudrian ships were on course for Earth, carrying enough firepower to pulverize the entire planet. With no one to stop them, they swiftly initiated their diabolical plan. The lithium fusion missile entered the>atmosphere unimpeded. The President, in his top-secret mobile submarine headquarters on the ocean floor off the coast of Guam, felt the inconceivably massive explosion, which vaporized poor, stupid Jennifer.

(Rebecca) This is absurd. I refuse to continue this mockery of literature. My writing partner is a violent, chauvinistic semi-literate adolescent.

(Gary) Yeah? Well, my writing partner is a self-centered tedious neurotic whose attempts at writing are the literary equivalent of Valium. 'Oh, shall I have chamomile tea? Or shall I have some other sort of FUCKING TEA??? Oh no, what am I to do? I'm such an air-headed bimbo who reads too many Danielle Steele novels!!!'

(Rebecca) Asshole!

(Gary) Bitch!!

(Rebecca) SCREW YOU - YOU NEANDERTHAL!

(Gary) In your dreams, Ho. Go drink some tea.

(Teacher) A+ - I really liked this one.

Thursday, August 28, 2008

What Not To Say

With only a few days left of summer vacation, I took the kids and Michael's friend to the movies this morning and lunch. At Subway I met the person who epitomises "What Not To Say".

I sat down at one table with Brady, feeding him yogurt, while Michael and his friend sat at the table next to me. One of the girls behind the counter had already commented how cute Brady was. She continued to stare at him wistfully.

"How old is he - 10 months?" she asked.

"He's two," I replied, although he's less than two months away from being three.

"Wow, he's small!" she exclaimed.

"Yeah, well..." I said.

"So, you have three boys?" she continued.

"No, I am just borrowing one of them," I joked.

"Two boys? So are you going to have any more?" she asked.

"Umm.. I don't know," I answered.

"Do you want to have a girl?" she asked, as if two boys was the same as having 10 boys.

"Umm... I don't know," I answered again.

"So, are you done having kids?" she asked, since I am 73 years old.

"Umm... I don't know," I answered again.

"Wow, he's really small for two," she reiterated.

At first, I was a bit irritated with the line of questioning, then I thought about the young girl asking me questions - probably 19 years old, friendly, smiling. Did she have any ideas that she was being a tad bit inconsiderate, rude and invasive? Probably not. Was she trying to make me feel bad? Nah... but I pity the day someone not as laid back as me is on the other end of her questions. I was actually smiling to myself by the end, in amazement that this conversation was actually taking place.

Wednesday, August 27, 2008

Do you need a ride?


We picked up this little used V-Tech scooter and Brady loves it - although I believe he thinks he's in Australia. He gets on, puts his left hand on the steering wheel and turns it, and then takes his right arm and pumps it up and down on the side, like it's hanging out the window. Well, unless he is in England, he ain't hanging his RIGHT arm out the window... but his therapist noted that he does watch a lot of The Wiggles in their Big Red Car and in Australia they also drive on the right side of the road!

Friday, August 22, 2008

The Old Days










This past week I was able to hook up with an old junior high school friend of mine who now lives in Texas. She came up to visit family and we got together with the kids for a walk round her mother's neighborhood.
Michelle's boys, Brett (in the carriage) and Scott (with Michael) are pictures of their parents; Brett looks JUST like my friend and it is a bit eerie, to say the least. Having known Michelle since I was 12 (only two years older than Michael), seeing a little her running around now is quite strange.
It's also amazing how we fall right into the same conversations, as though time has stood still and we are the same people we were when we moved apart all those years ago.

Monday, August 18, 2008

Just yesterday...


As I gather together items for Michael's first day of middle school in two weeks, I am reminded of a boy at the end of the summer three years ago before he became a big brother. The short hair and not too much attitude are the only differences between that boy and the one today. He is still full of questions, ideas and fun. How fast time flies!

Sunday, August 17, 2008

Counting My Blessings

I have only two blessings this week I would like to comment on. The first one is obviously Brady's cath and its great result. I need not explain to the people reading this blog what a relief it was. For those who tune in here and there, please let me explain the roller coaster feelings I had this week: bringing Brady into the hospital to have a procedure that determined if he was having heart surgery next week (as was the plan) is no walk in the park. Both his hands are full of bruises, from bloodwork in one and the IV in the other; both groin areas are deep purple and black from bruising, so large they aren't completely covered by his diaper. Now that I know he is okay til next year, I have given myself permission to be in awe of what he has gone through. What a trooper! :)

My second blessing is regarding a comment from Joanne in my blog entry of Saturday, August 16, Numbers (below). She is mother to a grown son, Scott, who is mentally challenged and grandmother to a child, Sawyer, with WS. Her comment was very touching and heartfelt, and I appreciate her life lessons learned and shared. I was very moved to read the following, especially:

It still tears at my heart to hear unkind comments about [Scott] or feel he is being left out of many of life's opportunities. I have cried many a tear over my husband's loss of the chance of being a little league dad or to have a fishing partner. However, it is (was) my sadness. Not Scott's. He is happy in his life - and if given the opportunity, he is willing to share his smiles and enthusiasm with all who open their worlds to him.

Most of all, just know that all of these changes will bother YOU much more than they will Brady. He will instinctively be drawn to those who accept and love him for being Brady --- and there will be many who will want him in their lives.

Thank you, Joanne, for your words. I am blessed to have you in my world! :)

I love this picture of Michael and Brady - it is a typical brother picture. "Leave me alone and give me my blanket!" is what I picture Brady saying right here :)

Saturday, August 16, 2008

Numbers

Here is Brady with cousin Cooper and Grandma, while Cooper tells him the ways of the world.

Although Michael was an only child for so long, he never lacked for company. Besides his most fun parents LOL, a girl his same age lived next door, our friends had kids the same age when we visited, another close friend was an only child so he was with him a lot; plus as he got older three boys moved in across the street and now Michael rides his bike around the neighborhood where three more friends live. His cousin Adam, my brother-in-law's son, is only a year older than Michael and they grew up together. He sleeps over constantly and we have taken him on vacation with us. Tom and I were working on creating that bigger family, but in the meantime, Michael had many "siblings".

I have friends who also have kids around Brady's age also, but it's much different this go-around. When they were babies all was the same for our playdates. But as the kids got older and Brady stayed the same, it changed. Brady didn't enter that toddler stage when they did; he wasn't trying to waddle around and climb and play. My friends wanted to go to play areas and parks to have the kids play. Obviously, Brady did not partake in any of that activity. Knowing my friends, they didn't care and would ask me along, but it was hard sometimes to watch their child run around and play while my child, a year older sat in his carriage and watched. Not that he cared - Brady was always interested to watch but not fussy.

Over time, there were new babies born, and Brady fit in with them easily. He was one of the guys again! In fact, he was a little more advanced. What a different world! (Side note: I often joked that when people at the store asked me how old he was, I was going to star saying a year or more younger than he was so instead of them remarking how little he was they would say how advanced he was! LOL)

Well, those kids are growing up too, now. They started taking steps, eating real "people" food and playing with toys. But this time, so is Brady. I know that they will probably move through this stage more quickly than he will, but it is nice to see him play with kids his developmental "age". Even the WS kids we know in his age bracket are ahead of Brady. It seems that every year we'll need to make friends with kids who are one-year-old.

Speaking of his developmental age, Brady had his six month assessment yesterday. Yes, I know he was in recovery still. His therapists came over and more or less filled it out for him, knowing how he does anyway. Brady increased in all areas, but mostly in gross motor, which is what I figured. He scores at 12 months in that bracket. As soon as he is standing he will score a bit higher. His other areas scored around that same number.

It wasn't too surprising where he landed, but I also see his determination as he attempts to walk by himself, his frustration when he can't communicate something, his interest in his face when he spots a toy he likes. I feel like we are on the cusp as he tries to move ahead. Before, none of this really interested him, or it appeared that way. He is responding to facial cues more, attempting to smile in my face. Something all the other WS kids have been doing, but not Brady.

I'm glad Brady has the friends he does - the two-year-olds who push him to do more, and the one-year-olds he can play with. I refuse to be sad my entire life watching Brady not be able to do things, so instead I make sure I know of ways he will succeed.

Thursday, August 14, 2008

B stands for Lobby

We're home from Children's Hospital and Brady's cath. It went VERY well. After getting there for our 7 a.m. arrival time, Tom, my mother and I waited just a few minutes before being called in to prepare for the procedure. Brady swallowed his magical sleepy-time medicine eagerly (anything with a little sugar on it and we're good to go!) and after 10 minutes he was ready to be whisked away. We were told the cath and echo would last two-to-four hours, so we headed downstairs to the cafeteria for breakfast.

But first, we headed down to the lab so Tom could get some bloodwork done he needed for his own doctor, so for all you Boston Children's Hospital patients out there -- Tom now has an official blue card! My mother and I graciously waited for Tom to be done before going down to the cafeteria, since he was fasting for his bloodwork and was starving.

After breakfast, we headed back up the the waiting room. About 15 minutes later, we heard a nurse say, "Brady Farrell's family?" He was DONE - in two hours to the minute, I think. We gathered our belongings to go see him in recovery, but were first stopped by Dr. Marx, his cardiologist, to let us know the story. Brady's echos as of late have shown he has a gradient of 60 on his left side of his aortic valve. However, the cath (which is the most accurate) showed it was more like 35-40. It is common for the echo to show more than the cath, so they were not too surprised. They also did another echo at the same time, which showed 60 again. This will let them see in the future when he has echos what the comparison would be. So, more or less, Brady would have an echo of 90 before it is a true 60 and need heart surgery. They also checked out his other arteries, etc and everything else looked great.

His cardiologist said we will not do the heart surgery now, but rather probably in a year. We planned our next echo in December, and during these next few months, Dr. Marx will speak to surgeons about the benefits of waiting three years to have the surgery, or to do it next year. If the chances are the same for success, he would rather do it next year. We agreed, as the sooner he is "mended" the better it is.

Brady pretty much slept the next six hours, with a few bouts of crying and a little fever, but for the most part he handled everything well. Right now he is sleeping in his crib, and I assume at some point he'll wake up for some more crackers and juice. He has a small incision in his left groin where the catheter went in, so I just need to be careful not to bug him too much there.

Thanks to EVERYONE for their phone calls, emails and well wishes. We had a few ideas what to expect (thank you WS moms!) but it is still a little unnerving to go through this, obviously. I am so thankful I had people to speak to about this who already went through it. Once again, thank GOD for the internet!

Also, as for the title of this entry, we found it a little funny (probably from lack of sleep) that in order to get to the Lobby at Children's, you went to the "B" floor on the elevator. There is a First Floor, but apparently you walk in through the basement in the Main Lobby. We were in the elevator and it was mentioned that "B stands for Lobby" and we got quite the chuckle.

Wednesday, August 13, 2008

Thanks~

Just a quick note to thank everyone for all their prayers and good thoughts. Today's pre-registration for the cath went exceptionally well, not too much downtime and we were out fairly quick. We have to be at the hospital at 7 a.m. tomorrow, so I am off to bed... I will update as soon as I can.
Just wanted to share this adorable picture of Clare and Brady at the Spinney's barbque. You know guys ~ they play shy until you act uninterested, then they won't go away!

Tuesday, August 12, 2008

Finding New Friends

Today, Michael and I headed to the middle school for Locker Day. Since Michael is entering the school for the first time, the new students get to go in and practice their locker combination, find their classroom, and check out the instruments for band.

After getting his combination and pep talk from the principal, we headed to the fifth grade hallway where Michael attempted his combination. He got it fairly quickly and kept re-doing it, while I stood by and watched in amazement that this child of mine was only three years old yesterday, it seemed. A few lockers down, a girl was working on her combination with her mother and sister nearby. The sister looked to be around 13 or 14 years old and I kept looking at her, thinking, "This girl HAS to have Williams!" I knew there was an older girl in town but I had never met her.

Finally, I thought to myself, "Whatever! I am just going to ask her." I went over to the mother on the side and said, "Can I ask you a question - I hope not to offend you" or something like that, I can't even recall right now. I was hoping she wouldn't mind me asking a personal medical question. "Does your daughter have Williams syndrome?"

She looked at me and said, "Yes." I quickly replied that my son does too - unfortunately he was home with my father-in-law, I said to her when her head whipped around to see him. Her daughter is going into the high school and was very pleasant and polite. She doesn't have any medical issues at all, just a heart murmur that is not serious. The mother said when her daughter was younger she was involved a little with WSA events, but hasn't received a newsletter in years. We spoke for a few minutes before being hurried along to the music room, but since her younger daughter will be in Michael's homeroom, I will be able to get in touch with her again pretty easily.

It's really neat to have this sense of community with complete strangers.

Monday, August 11, 2008

Here is a great post from Joanne, who happens to be Sawyer's grandmother (Sawyer is in the pictures from Sunday, August 10 post.) http://jossoapbox.blogspot.com/

When I heard about this movie, it looked hysterical and I was anxious to see it. I had no idea about the sub context in it. While I have never taken a stance about the word "retard" in my blog before, the points Joanne makes are right on.

Augmentative Communication Clinic


Today we went to the Augmentative Communication program at Children's Hospital. It was very interesting and not at all what I thought it would be. I thought we were going to see Brady tested in Speech and other ways of communication but it was all about equipment that we may use for him. I will get a full detailed report shortly that will be beneficial for the school.


Brady got the idea pretty quickly: there was a video and music on the computer screen and suddenly the music would stop. He realized if he hit the button (envision a "Easy Button" from Staples) it would go back on. It was pretty neat to see him use the computer. She gave me a ton of websites to look at (kneebouncers.com, ilovewavs.com, snagit.com, jing.com, priorywoods.middlesbrough.sch.uk) and ideas on how to put together some programs of my own with Powerpoint, Boardmaker, and SwitchIt Maker 2. The button and other equipment came from Ablenet, Inc (ablenetinc.com). She is planning on having a workshop to help parents like myself work with the computers and kids.


Brady's Education Therapist came with my mom and me, which proves once again how in love I am with his therapists... they are so caring and are so devoted to Brady. She was interested to come and see what the deal was with this clinic, but we had a blast driving in and having lunch. I will miss these guys so much when Brady graduates Early Intervention and moves onto preschool in two months.

Sunday, August 10, 2008


I was planning on making my triumphant return to blogging on August 1st, but this past week has for some reason flown by, so here I am on August 10, ready to get back into the groove. While I have been reading and commenting on others' blogs, I have not posted for over a month, as my friends and family have graciously (and not-so-graciously) have reminded me.

Besides going on vacation in July (That's Brady in our Park Home on vacation waiting for me to get him out of bed), I have been trying to gets things in order around my house. It seems there is always so much STUFF that is EVERYWHERE. We have also been trying to keep up with Brady, who has gone with leaps and bounds motor-wise. Here are the top ten things going on with Brady:

1) He is an active crawler, not content to just sit, he moves to toy and toy, crawling all over the place.

2) He is cruising along furniture and walking with his walker FANTASTICALLY! I have the walker in my trunk so he can walk into playgroup on Fridays and walk into his doctor appointments at the hospital now. Sometimes he just stops and looks around, but he usually gets going with a nudge :):)

3) Brady is doing much better eating, although he still does great one week, lousy the next, etc. He is now loving Pop-tarts, chocolate milk, endless graham crackers... and of course, Pepsi! He has YET to hit that 20lb. mark though. Last week he weighed in at 19 lbs 13 oz.

4) He has been able to see his WS friends this summer - we were fortunate and excited to visit Clare and Michaela at their BBQs, along with seeing Coleman for music therapy a few times each month and Lucien for play dates. We also got to meet Arianna and Michelle, which was great. Tom and I are both happy to be so close to such fabulous people. We are enjoying all the time we are spending together. This Fall we're looking forward to more gatherings! (He's in these pictures with Sawyer playing with the blanket at Clare's house.)


5) Brady intermingles with his cousins like one of the gang - they are 1-1/2 years younger that him, but he intermingles with them just the same! It's cool to see them play.

6) We're getting ready to go to an Augmentative Communication program at Children's tomorrow, which is a two-hour clinic that will assess Brady's communication skills and his needs. Apparently I will get a big report that will be great for school that will showcase if he needs any equipment.

7) We also have Brady's first-ever cath this week on Thursday, with a full day of testing on Wednesday. We should have answers on Thursday on when they will do heart surgery.


8) We have two months left before we start preschool. His Early Intervention OT is going to be working at his preschool, so we will have a great transition there - I am so LUCKY this has worked out! We will hopefully get his plan in a month so I can see how many days they recommend.
9) Brady wears soft splints on both hands to keep his thumbs out, and it has really changed his playing abilities, very quickly.


10) He is enjoying time with his 10-year old brother (Michael had a birthday - double digits!!) and getting along with the dog (yes, we still have her... so far!)


I am planning on challenging myself to blog every day in August like I did last October... let's see if I can do it!

Monday, June 30, 2008

My how time changes.... the other night at the baseball game, Mr. Brady wanted nothing but to crawl around on the grass, stand up holding onto the fence, shake, shake, shake it a bit, then crawl down to the other parents....

Is this my same boy??? :)

Thursday, June 26, 2008

We had a lovely visit to the dentist this past week. We had gone last month to find Brady had three cavities so we needed to return to have them filled. Because they were not too bad and there were only three, the dentist decided we would try to "scoop" the cavity out, put the medicine in and then the filling on. In the future, if there were a lot of cavities or in bad shape, he would be sedated.


I am not ashamed to say I hate the dentist. Maybe because when I first went to the dentist in my toddler days I had 24 cavities, my mother reminded me. I thought I only had seven, but my mother said, "No that's all they filled" because I was screaming the whole time. (Shudder) Now I have perfectly straight (thank you braces) teeth and stretch going to the dentist as much as I can.


Needless to say, I was a bit apprehensive about going this week with Brady. My mother was away so I was going solo and not looking forward to it. When it came for Brady's turn, the dentist reminded me they would put Brady in a sleeping bag-type holder to prevent him from moving around. I had already stated that I didn't want to be in there with him because while I knew he would be fine, I didn't think I would be.


I followed the dentist down the hall and into the room wear six other mask-wearing people waited. They held their arms up with the gloves on intact, looking at me expectantly with the specimen-child. I held Brady and started to feel a bit panicky. "Um, I'm just going to lay him down and go" I told the doctor. She said, "That's what I want you to do." I did not want to see them strap him in the magical stay-still bed. I grabbed the carriage and hightailed it out.


I had to go outside to use my cellphone, where I left a message for my mother and then called Tom. After speaking to him for about 20 minutes I went back inside and the doctor was in the hall with Brady looking for me. My worries, apprehension, nervousness and guilt were for naught - apparently he fell asleep after they put him in the bed with music playing and they did their work. (Ahh!) Must I make such a big deal over EVERYTHING?!?!?


And on top of that, his front tooth held the largest cavity, which was the tooth that came in split and last Christmas eventually broke the tip off. They fashioned the filling as his tooth, and you can see from the first picture his top right tooth looks fabulous. (How'd you like to put your finger near those chompers??)

Monday, June 16, 2008

Dum, dum.. (shark music) She's BA-ACK!


Ahhh.... it's June. Activities for Michael's last year at an elementary school are OVER! (that would be three major events plus a yearbook and slide show to produce over a three month period). Baseball, where we lived and breathed for two months, is OVER! (although we have summer league now.) Scouts... going on the down low. Could it be... will it be.... perhaps (gulp) some time to chill out?!?!?

You mean... I can actually blog again? It's so hard to find the time to chat with everyone. And then even when I wanted to send out a little update, I would think, "I can't write THAT... they don't even know about THIS yet!"

SO here is the Cliff Notes version, on some very important stuff:

First off, Mr. Brady is officially a CRAWLER! He did it a little at a time, but at 31 months of age I could say he became an official crawler. I can also say at 31 months of age, he became an official CRUISER! Yes, folks, he managed two modes of transportation at once. At 32 months of age (last week) he walked with his posterior walker unassisted -- all legs and arms, all him :) He did it smiling with his scrunched up face the whole time, as if he was laughing at me.

Secondly, his eating has gotten much better --still following all of Amy's hints and strategies (thx!). Loving the cereal bars and have tried a few times jelly sandwiches. Not gaining a lot of weight, but he looks like a little kid sucking out of his juice box rather than me holding a bottle to his mouth. How cool is that???

Thirdly, we had his echo last week which showed (good news) pulmonary stenosis down to 20, and getting better (Lisa said he could outgrow this)and (bad news) his supra valvular aortic stenosis getting steadily worse (at 60 now). The doctor said he just wrote a paper on what the magical number is to do a catherization, and it's... wait for it.... 60! This means we are going to have one, probably in August. He said we could wait til it gradually went up and next year do it at 70, but he'd rather do it now while Brady's strong and healthy. Makes sense, but still... ugh. We've never had one. He also said that if the gradient of the narrowing is a true 60 (sometimes the echo can be wrong) we would have heart surgery after the cath.

And fourthly more bad news, we are losing our speech therapist tomorrow. She is moving to Arizona :(. We already have a new one and she is ready to pop in two times a week, but she's not Vikki and I can already tell I am being mean to her, subconsciously, of course. :) She is extremely qualified and an excellent therapist, but Vikki has been with Brady since he was five months old. I have been with her through two boyfriends, a psycho Internet date, and a hormonal sister (all on her end, not mine!)

The only thing that comforts me is knowing that Brady's OT will remain his OT after he leaves Early Intervention (he's in that until age 3, then it's preschool) because she got a job in the school system and she will be working in his preschool. I LOVE that continuity! His PT, who has been around since he was four months old, will always be in my life, I think! She is a sweetheart and we have very close ties.

It's amazing I find these blessings amidst the health concerns, but I feel if I don't see them, I will drown in the unknowing and unthinkable. I will worry about his cath and its aftermath in August, but I don't want to dwell on it now. I know it will always be on my mind somewhere, but I have another son, a husband and two months of summer before that happens. We have a great vacation planned for Point Sebago again next month, plus I plan on seeing Lisa even though she doesn't know it yet ;)

I apologize that I haven't caught up on everyone's blogs, but I am doing that now. I know some of you have had health issues and my prayers are with you.

Sunday, May 18, 2008

Counting My Blessings


1) I am very thankful for my mother coming over Wednesday morning just so I could clean my office. I organized, threw away, divided out for a yard sale... ahhh, how refreshing!!

2) I am very blessed for Brady to have such fabulous therapists - we managed to get our first eval meeting now with the preschool for the Fall since they are all such fighters for him. The meeting went really well, and I am somewhat comforted that although we will lose these lovely ladies come his third birthday, he is going to a great school.

3) I am very thankful that I find pleasures in just simple things: finding a good book, finding 15 minutes where I can just sit; clothes that fit; the smell of the flowers as I walk in; getting info for our vacation this summer -yeah!

4) I am very thankful that I know so many fabulous "little people" - my nephew Jack came over this week and made me smile to no end with his"pleeeaaassse"; and a brother to one of Michael's baseball teammates has become my little buddy, helping me with Molly and Brady at the games.

5) I am grateful that Michael is on a baseball team that is fun for him, where the coaches are there for the kids to have a great time without stressing them out (they are 10-2!), where we on the sidelines have a blast rootin' for the kiddos.

Saturday, May 17, 2008

I am getting tired of my old line, "things are really crazy here" as to why I haven't posted lately. I have the video almost done on Brady's Walk --just still figuring out the dang-#%& music! I will get it eventually; it took me a little while with last year's too. Hopefully that will be posted over the next day or two.

Back to my first point -- yes, it has been crazy, with baseball, school projects, transition meetings (yep!) but I have to say I don't think that is my only reason for not posting. It is easy for me to post to ask for advice or to vent; but when things are the way they are for us right now, I find it hard to come to the computer and write something out every day.

Brady is doing... really well. He has been progressing very well, very fast. We went to see the preschool Brady will be going to in the fall about two weeks ago, then met with the therapist team from the school this week so they could evaluate his needs (he will have his IEP meeting in September for his October start date). When we went this week, the preschool director was amazed at how much he has progressed in just those two weeks. He has been pulling to a stand for a while, but now he is doing it more correctly and very quickly. He is starting to cruise a bit more. He is still taking his milk from his bottle, but everything else is by straw (he just couldn't do the sippy cup, but his ST says this will be more age-appropriate anyway). You can play with him more; he enjoys toys now. You can make him laugh. We told him to say goodnight to Michael, and he tried to kiss him :)

And the list goes on. I think this explosion started after we went to Kentucky in January and really took off after his eye surgery. (Who knew how blurry things were before surgery??) I had always heard 18 months is the age that "everything happens" developmental-wise. Well, I have begun to think of Brady not as a 2-1/2 year old, but as a 1-1/2 year old, since that is really where he is. In that line of thinking, coincidentally he is about 18 months old now.

I am excited and relieved and .... content. Having to wait for so long to see some kind of development, but knowing it would happen, I finally feel that my optimistic attitude has earned its stay. I know he will come to more challenges and obstacles, but we have been waiting so long for this child to "show up" and he finally did. All the other WS kids I know have hit these milestones long before Brady. I finally feel like we have a "kid" versus a "baby".

It's not hard for me to be positive and to be happy for the way Brady has gone on, and I definitely like to give the kid his props for achieving so much. I celebrate each new facet in his life, then move on to the next.

I have another revelation to share... I am past, and have been for quite some time, the feeling that WS has "ruined" our life. I am sympathetic to those who are still struggling, because it is a hard peace to find, I think. I will always be a shoulder for those people, because I know sometimes it is only time that helps people find that inner peace. Sometimes it is only coming across families who have had much worse conditions than WS. I think that has a lot to do with my thought process.

I don't wish for my son to have his heart condition, or have to be extra careful with his calcium intake or in the sun. Because of his radio ulnar synostosis, I need to be taught how to help Brady catch a ball or even eat with a utensil. But I see changes in me and Tom that would not have come with WS in our lives. Patience. Respect. Care. Optimism (in Tom, not me LOL). Loyalty. Knowledge - of what is important in life. Understanding. It has been said that special needs children are only born to those mothers who are able to "handle" being a mom to a special needs kid... I also think the special needs kids are born into families who need them.

Sometimes I feel overwhelmed in what has to get done, but I have never felt that I was drowning. Sometimes I am fearful of what is to come in the future, but I am so very Scarlet O'Hara and "think about that tomorrow". LOL Sometimes I worry what would happen if I was to drop dead tomorrow.... but all these things are what every mother feels regardless of her child's development. In fact, most of my worries are based on tomorrow, not today. "Today Brady took a BITE out of an Oreo." "Today Brady grabbed Tom's arm so he could drink more Pepsi." (Today momma gets a big bill from the dentist LOL) "Today Brady had a great day at playgroup, not ONE cry!!" I can't worry if Brady will have friends when he is eight - he's not eight yet. (And then I just think of Michaela anyway :) )

Am I only content because Brady is progressing? No, I have always been optimistic among my vents and letdowns. I am sure I will still have them! But no different than the ones I have for Michael or Tom LOL.

Life is what it is... this is my life and here we are.

Sunday, May 11, 2008


I have one blessing this Sunday ~ I am blessed to know all the mommies who have helped me, guided me, supported me, strengthened me, humored me, uplifted me, relieved me and relaxed me. I am forever grateful, whether I have "met" you in person or online. Brady has many "mothers" out there .... thank you and Happy Mother's Day!

Thursday, May 01, 2008

Brady's Walk 2008 ~ a HUGE Success!


Brady's Walk last weekend was a HUGE success! Just check out this picture above - Can you believe this picture? It was taken at the Park before we started the Walk. And it isn't even everyone - another six were not in the picture. Plus the MANY more who donated but were not able to come to the Walk. I think I counted 85 people AT the Walk. How amazing!

And how touching ~ how do I even thank all the numerous people who supported Brady's Walk? I received checks from people in the hundreds who did not even know Brady, they just knew someone who knew us. Since having Brady and experiencing the support from strangers, it has changed Tom and me profusely and forever.



The day was beautiful; the threat of rain disappeared and the skies were sunny and bright. Of course I was late getting to the Park, but the amount of people milling around waiting just blew me away. We quickly passed out tshirts and bracelets, took a couple of pictures, then we were off! Walkers, strollers, scooters, bikers, we all headed off around the lake.


We had six WS families there (you'll see in the picture here): Brady, of course, Michaela and her family, Lucien and his family, Coleman and his family; plus two people we hadn't met before - Truman and his family and Brianna and her family. It was exciting to meet the other families, who live not too far away. I hope we will get together with them again in the near future. I know we all see similarities with our WS kids, but Truman and Lucien were identical! They both had that tousled curly brown hair and big grins on their faces.


After the Walk, most of us headed to Ang's house for lunch and fun. Our Music Therapist Danielle and her mother had the whole sound system set up and sang for hours for the crowd. They were phenomenal! After lunch and dessert, we had some raffles that were a big hit. It was relaxing to just be able to talk to everyone, although you never have time to talk for long, of course! I did had out some special flowers to our host, Angela; my sister Kathleen, who donated her February Tastefully Simple profits for the Walk; and Laura for being the New England Chairperson for the WSA and being such a great source of information and support. I was a tad bit emotional (well... just a tad! LOL) but I am in awe of these people who have helped so much.

Thanks to everyone who brought food to the party; thanks to Danielle and her mom for the entertainment; thanks to (another) Kerry who designed the logo; thanks of COURSE to Ang for hosting -- nine months pregnant to boot! Right now... we have raised over $2,700 ~ plus there is still more money coming in! Woohoo!!!!
I will put together Brady's Walk 2008 movie over the next few days. I have a ton of pictures to sort through. I am so excited to have had such a glorious day and to have been able to meet more friends with WS. Thank you all so much!

Monday, April 21, 2008

Brady has decided "I'll show them. They want me to move on forward? I'll show them!"

I know this is his thought process. You see, nap time, bed time, it's always the time to pull yourself up, stand on the side of the bed and chatter until someone picks you up! Please leave that door open so I can stretch my neck out around the dresser and spy you in the hallway, while standing in my crib. If I spot you, I might start jumping around and wiggling my way around the bed.

Can we even GET mad over this? :)

Friday, April 18, 2008

The countdown is on! Only a week left until Brady's Walk and we're really excited! I still have some details to do for it, finalize food details and such, but the tshirts and bracelets have been ordered, flyers done, emails sent. I hope some of our WS families can come and I hope we have nice weather! We're gathering at a friend's house for the after-party with food, music and some surprises. If you need details, email me and I will get them right out to you.

We had our new ST Rebecca today who is extremely SMART. She is so hands-on with Brady. She had him obeying her when she said "Stop" shaking the rattle and "shake" it. I never really saw him "obey" like that before... it's amazing all the things I realize AFTERWARDS that he can do. I must start challenging him more, because I think he is not as far off as I think he is

Sunday, April 13, 2008


On Friday mornings for the past month, I have been dropping Brady off at our Early Intervention childcare center at 9 a.m. to his Developmental Therapist Julie, and then picking him up at 11 a.m. He's had Circle Time, Snack, played outside with other friends, and done arts and crafts. He did his first project there, a big green shamrock with paint and glitter. This is a great program for him and a great sample of what's to come next October when he turns three and starts preschool.


He's had some good days, some bad days. We're getting to the more frequent bad days.


In the past, Julie has reported to me that he seems to get upset and startle with the kids. She was thinking the very bright hospital-like room and the other kids bothered him. I didn't buy it - Brady's been in lots of situations where there is a lot of kids and he is fine; in fact, he is very interested in watching them. My house is hardly a quiet one. I bring him to the store with me because he loves watching people and looking up at the lights. But there was definitely something not right, and I do believe Julie is a good therapist so I was ready to listen. We talked about starting up the brushing again to help in this sensory overload. I also made a note to make sure he had eaten a good breakfast since one time he was definitely hungry.


Brady's PT was at the school with him on Friday as Julie was out. When I came in to pick Brady up, I saw him sitting on Lisa's lap, head buried in her chest, almost asleep, with red cheeks. Not a good sign. She saw me walk in and said immediately, "OK, we need to have Tara (his OT) come and observe him, because he is definitely having sensory issues." As soon as I had left two hours earlier, he cried for awhile, then was fine, did great feeding himself, then when they went outside he freaked out, almost a panic attack, as Lisa described. I have NEVER seen him have any sort of anxiety issues, nor had my mother or Tom. Lisa acknowledged there was a new kid at school that day who cried off and on and that set Brady off. I know he is very sensitive to other kids crying, he gets upset for them. (What a sweetheart! :) )

Lisa said they are going to make some changes in the room, turn off one of the fluorescent lights, make a quiet reading area for the kids which will be Brady's quiet area too. But the biggest revelation was what Lisa thinks might set him off in the beginning: he misses me! She said a few times when I have gone to work and left him with her for PT at home with my mother, Brady has cried lately. And --duh!-- it is very common for 2-1/2 year olds to have separation anxiety from their parents -- WS or typical. We're always thinking about the WS factor in things, we forget about the regular stuff! I said Brady goes to others very easily, but Lisa pointed out I am usually there. Even though he has known Lisa almost his whole life, I am not there.


I never went through that with Michael. Michael was and is a very social kid, asking store clerks where to find things and asking other kids n the playground to play. At his first day of preschool it was "Bye, Mom!" I suppose if he was a little sad to see me go, I might have thought of that with Brady. It's nice to know Brady likes me!


I am hoping we will be able to soothe Brady and keep the playgroup and enjoyable experience for him. (Although it is nice to know that the consensus is he really likes me :) )

Friday, April 11, 2008

MRI Update

So this is what it feels like... to leave a doctor who says we don't need to see him again except for consults :) We still see every doctor we have been introduced to... now we are EX-neuro patients!

The MRI came back fine, everything looked "normal" with no problems. They were looking for more of a reason other than WS why Brady was delayed, also a reason for his hypertonia. It's all WS, baby! The doc said we can come back in a year, or he can just be our contact person for neuro if we ever have a need, or if Brady develops issues.

I will leave you all with those good thoughts and leave the horrid school day to tomorrow's post ;)

Thanks for all the well wishes!

Thursday, April 10, 2008

Today we started with our new speech therapist. We still have our old one on Tuesdays until June; then she moves to Arizona. :( So Rebecca started today and will come on Thursdays until June, then she will come twice a week. She is working on communication and feeding as well, and seemed very knowledgeable, gave me a few hints and ideas to help Brady. I think it will be a good fit. She was here for over two hours though, which knocked out the only hour I had in the day scheduled to do stuff around the house. Argh!

Tomorrow we see the neurologist to give us the results from Brady's MRI last week. I will post as soon as I can - the appointment isn't until 4 p.m. Double Argh!!!!

Pleasant dreams everyone, I am off to clean my kitchen (yes, I know it is 10:00 at night!)

Tuesday, April 08, 2008

Heh, heh, heh.

Yep, that's Brady. He's a little sneak.

We've all been fooled. This little cherub has played the "I can't handle eating textures" card long enough!

You see, Brady makes a big deal when he's got some extra textures in his mouth, some chunk to his food. HOWEVER, as we noticed today, he has NO problem with chunks of OREOS in his pudding. NO problem with slabs of chocolate icing sticking in his mouth. NO problem with that straw when there's Pepsi at the other end.

Aha! I've got your ticket, buddy!!!

Sunday, April 06, 2008



We have all made changes in our life based on our children. We don't always stay up too late because we know we have to be up with them the next day. We may forgo a nicer restaurant because they don't have Dinosaur Chicken Nuggets on the menu. We may have to take a break from driving a long distance so people can go potty. We watch our language, watch our friend's language, try to set a good example.


Those of us with WS kids may make other changes. Some forgo noisy environments. Some forgo crowded establishments. Some forgo places too bright, too dark, too many flashing lights. Some of these may be the same for typical kids as well, but I know with having both a typical kid and a WS kid, I would take a chance on some things with Michael and definitely not with Brady.


I know what Brady needs; for example, if he gets upset, he likes to stretch out. I have been known to lay him on any floor, germs furthest from my mind - hey, isn't that how we build up our immunities? LOL. I do have my limits, like the movie theatre floor would be a stretch for me. But we purposely sit on the edge aisle in church so he can sit on the carpet if he needs to. We don't interrupt or bother anyone else and it gives him a little more room.
Brady isn't bothered by loud noises, so we can bring him to the movies without a problem. He is actually really good, not a peep, and I can sit with him in the stroller and feed him a pudding if need be. At church, he only gets startled by the bells the altar boys ring at one point in mass. I am now an expert on detecting when that is; I slowly start patting Brady's head a minute or so before, then put my hands over his ears when they ring. Doesn't even flinch now!
He loves watching people and animals. I rarely go to the store without him because he is so interested in everything around him. There goes my few moments by myself so Brady can have some interaction. I used to have to get certain shopping carts, though, so he wouldn't slide out of the seat (thank you, low muscle tone).

I really noticed all this today when we were late to church and missed our usual seat. We almost sat down in a pew when I realized we didn't have that little spot for Brady to stretch out in, or even any room for him to stand, which is his other passion. We quickly maneuvered over and sat a few rows behind our regular seat, which also had that little spot for him. Phew! We would be able to stay.


Some things we do automatically (leave the house, make sure he has his blankie, milk, diapers) and some we learn as we go along (five, four, three, two, one.. cover his ears... NOW!). Some we learn by the great advice we get (thank you, mommies!).

Saturday, April 05, 2008

I know it has been awhile since I posted a "real" entry. Yes, partially because of the insane moment I agreed to own an eight-week-old puppy (although Molly is doing great now, and housebreaking is coming along fine!); yes, partially to an overloaded schedule of therapies, PTO, Cub Scouts, Brady's Walk, baseball, work, being a mom, wife, friend, daughter, sister (some of which are my fault, LOL); and yes, partially to a never-ending winter season that sucks all the energy out of you.


I spent the end of March and beginning of April away from my computer and the blogs. I felt a little overloaded in my life both physically and mentally, and did to myself what I do when the computer acts up: turn it off, wait a little while, then turn it on again. Do something small on it at first, then gradually work up to the potential you had before.


I felt like I was on auto-speed, never catching up on what needed to be done, and never getting ahead to make things easier. I still have things looming over my head that I have to do, and they sit there, mocking me. I think I also felt overwhelmed with Brady, who had been advancing really well for many months. All of a sudden, his eating habits froze up again for a few weeks and he would only take the bottle. He is back to his regular eating now, but it always throws me for a loop whenever he gets off track with his eating. It's like we accomplish, accomplish, accomplish... then BAM he goes on strike and we have to start over. He is so delayed in all areas that I don't think it is asking too much for him to graduate past eating Stage 3 foods.


It is this never ending cycle; Brady falters and steadies himself, then gets up and moves along.... then he trips and steadies himself, then he moves along... etcetera, etcetera. I think I got tired of starting over again. Things are back on track; my head is clearing, he is back to his good eating habits and I am clearing my schedule for only the things I really have time to do. We also only have one more Children's Hospital appointment (this week coming up) until June, so that is a little breather, as we have been going, going, going (more on that below).


I am catching up on the blogs, so although I may not post I am reading and putting my two cents in when necessary LOL. For those of you I spoke to, thanks for bringing me back down to Earth.


SO... what has Brady been up to, you ask? WELL... in a nutshell:

(1) we got his DAFO's, an insert in his shoe that goes above his ankle to give him support. We were supposed to get his soft hand splints, but I am awaiting a call from the OT at the hospital who has not sent the prescription in yet;


(2) his eye surgery recovery went well, his follow-up visit to the ophthalmologist went well also. We don't have to see her again until June - no glasses needed;


(3) our pedi was concerned that his phosphorous levels were high (5.5, she has 4.4 as normal, in the range of 3.3 to 5.6), so we decreased his yogurt and pudding intake (all dairy is high in phosphorous, but he doesn't drink enough milk to decrease that). I felt bad about his yogurt and pudding because he loves these and will eat all the time. We had to go to the nutritionist, who was helpful. We did see that his phosphorous levels had dropped since December, and his calcium was good (9.9) so I will touch base with his pedi about this next week at his weight check;


(4) we have secured another Speech Therapist for a second day of speech a week. We love our Speech Therapist we have now, but she is moving in June to Arizona, so since we need another day of Speech, we thought to add someone else in. The therapist we got was all of Brady's therapists' first choice, so I am excited about that. She starts next Thursday and will help with feeding;


(5) drop-off playgroup is moving along well, some good days, some constipated days :)


(6) Aspen sent me Daven's old walker, which Brady is using with PT. He stands up pretty well in it by himself. He tries to move sideways though, like when he cruises the furniture, so that his been a little tricky;


(7) Brady had an MRI on Friday for two reasons: because he has never had one and because he is delayed (even though that is common with WS kids). Long story short, we ended up waiting two extra hours to go in (a patient was late and backed everyone else up). So when we were about to go in, the anesthesiologist asked what time Brady had last eaten. At that time it was nearly 12 hours. He mentioned that they liked to do WS kids early so they don't become dehydrated with the anesthesia (since they have problems with anesthesia). He decided to give Brady his IV a little before he put him under, so it worked out fine, but now I know --and you WS mommies need to remember -- if you EVER get bumped when your child is fasting for anesthesia, tell the nurse, "Bump someone else, because my child has WS and cannot get dehydrated before taking anesthesia." Also, the anesthesiologist said in WS kids, upper right arm is best for blood pressure readings because the ventricles are wider there... or something like that. Just remember upper right arm - even though sweatshirts is fine.



The calendar says spring, baseball season has started, but it is definitely not spring weather yet... waiting, waiting, waiting. That should cheer everyone up.

Wednesday, April 02, 2008

Oops, the Walk is at 10:30 and it is actually less than 5k - it is a beautiful scenic stroll around a pond. Last year it took about 45 minutes or so, after we got going.

Tuesday, April 01, 2008

Brady's Walk 2008

(Hey folks ~ I promise to update more tomorrow, but I did want to put out the info I had on Brady's Walk. You can email me for more information or directions.)


On Saturday, April 26, Brady’s Walk 2008 will be held at D.W. Field Park in Brockton, MA to raise money for the Williams Syndrome Association.

As many of you know, my son Brady, was born in October 2005 with this genetic condition that affects 1 in every 7,500 births which causes physical and cognitive disabilities. The money raised will go to the Williams Syndrome Association (http://www.williams-syndrome.org/). This organization is pinnacle in aiding research efforts, WS education, and bridging a community of support and friendship.


Brady is now two-and-a-half years old and has had quite a busy year! He had eye surgery this past month and just received his DAFOs (Dynamic Ankle Foot Orthosis) to aid in his ability to walk. He continues with his Early Intervention therapies, and has added Music Therapy and Playgroup to his schedule. The Music Therapy class has invigorated him, and his love for the guitar has really shone through.

If you would like to join us in the Walk, please do! Last year we had over 35 adults and children (and one dog!) participate, by walking, scooting and bike riding. Let me know and I will forward you the info. There's no fee to walk -- just come along and hope for some nice spring weather!
If you cannot attend, but would like to donate to Brady's Walk, please email me and I will give you the info to send your check in. Thanks in advance!

Thursday, March 13, 2008

Introducing...


.... the newest member of our family, Molly Jane, a Scottie. We just got her last night from a friend. She will be eight weeks old on Tuesday and the cutest little thing. I know, I know... we don't have enough challenges in our life so why not throw a puppy in there??? I haven't been able to catch up on everyone's blogs either, so I will be doing that over the weekend. Hope everyone is having a great week!

Sunday, March 09, 2008

Counting My Blessings



1) The weather is getting warmer ~ yeah! It means spring is coming! I am SO ready!



2) Brady had his first Drop Off Playgroup on Friday. I dropped him off at the Early Intervention Center at 9 a.m. to his Education Therapist Julie, where he was under her care for two hours. I went back to pick him up at 11 and she gave me a report on his time at "school". He played, went outside, had snack, did puzzles.... he had a great first time! It was really strange to drop him off and go. I only managed to go to Target, but next week I will get to the Y and work out. He came home and ate lunch then crashed... he definitely played hard! I am so thankful that it went well.

3) I am VERY grateful I went to my friend's house for an all-day scrapbooking day. I think I haven't been there in a year so it was much-needed and a lot of fun. The girls who are there are a blast and I got a few pages done. Tom and I trade off here and there so we can each have time to do the things we like -- he knows the golf season is coming up! LOL.




4) I am thankful that we had over Tom's sister and her new husband for dinner this weekend. It was great getting to know him; he is very upbeat and friendly and we had a fun time playing games after dinner.




5) I am very blessed to FINALLY be reading a good book: it took awhile to get interested but now I am gung ho. I find my life always flows better when I am reading something good. Not sure why that is ~ maybe it's a little treat for myself each day. Whatever it is, I am glad to have it. :)