Unexpected Journeys

Second Hit

2010-09-03T15:59:00.004-04:00

It is without a doubt one of the best decisions we made - to go to the WSA convention this past summer. That decision led to us sitting in on one of Dr. Morris' lectures on the ABCs of WS and where kids should fall in their development. Brady has always been behind the WS kids his age and we just assumed he was on the other end of the spectrum. But when asked, Dr. Morris suggested we look into having the chromosomal micro array testing - where basically all chromosomes are looked at, not just chromosome 7 which is owned by WS.

That decision led to our appointment with Dr. Pober, WS geneticist expert extraordinaire, who examined the boy. She acknowledged his consistent progress, albeit slow; his good health, and our good attitudes. Then she ordered the tests.

Two weeks later, we have been hit.

The micro array showed Brady has a larger deletion than his WS counterparts, it extends beyond chromosome 7 and includes additional genes. There is also a second change in another location down by chromosome 11, where part of the chromosome is missing but no genes are missing. The typical deletion for WS is a loss of 26-28 genes. Brady's micro array showed he is missing an additional 75, a total of 100 genes missing.

More genes missing means there will be more interference with normal growth and development. Dr. Pober said she needs to research the genes missing since they didn't know how they contributed to a person, and they may not even be able to find out what each one does. The idea is to follow medically anything that they could help with, but that is about it.

For example, she did note that one particular gene they knew that was missing would put Brady at a higher risk of seizures. Seizures that went untreated would cause a person not to learn as well. While we have never witnessed Brady having a seizure, she is setting up a consult with a pediatric neurologist for a brain scan. The "autism 2" gene is also missing, but Dr. Pober discounted that he had autism. She felt it was more of an association that he didn't have that one particular gene.

The second tiny chain of missing chromosome was down by chromosome 11, where no genes were missing. She felt it was likely irrelevant and thought it was a more of a "fingerprint" of his DNA and wanted Tom and I to give bloodwork to see if it was hereditary. We will visit with Dr. Pober in about four to six weeks once they have done more research on the missing genes.

I am typing this watching Brady... he was sitting in the middle of the floor, pulled himself up independently, walked to me and peered over the table to see the computer monitor. Uninterested, he turned, walked into the living room to the coffee table, grabbed a couple Fruit Loops, climbed on top of the table, ate them, got off the table and walked back into the kitchen to check out the CD playing ("Almost Famous" soundtrack, incidentally, fabulous). I smile.

How far he has come... yet now I know for sure he is 100 genes less. So easy to slip into that black hole cycle... but how can I possibly, seeing his progress? Seeing his quirky smile, upon which I am reminded all the time it took 14 months to get, yet is here all day now? Just another deep breath, I am sure this is not the last of news I don't want to hear. But the news I do enjoy getting, I am reminded daily.

Back to School

2009-09-14T23:42:00.004-04:00

Back to school time... and we've got a brand new schedule here. Brady is going every day but Wednesday, full days, plus taking the bus! We're only on Week Two of this, but it has been a huge blessing. They also plan on phasing in Wednesday mornings and eventually bringing him in all day Wednesday by the end of the year. He only has one more year of preschool after this one, then he will be moving on to kindergarten.

Brady spends half the day in the classroom, the other half in the Learning Center, where they work on ABA type therapies and other therapies needed for his development. He is doing fabulous, not being completely wiped out all day, but coming home eating huge amounts of snacks and crashing by 8.

The school has noticed huge strides in his abilities. I see it everyday, just in his interest level and his thirst for being on the move, climbing, exploring... who knew how bored he was before??

We went to an Augmentative Communication Clinic last week -- this is our third time going and I love the info we receive there. They try different modes of communication, from pictures to switches to computer programs. I get a very detailed recommendation packet from them upon which I will go over with the preschool. Some of the items -- switches PEC system -- the school already uses. They are very excited to hear about the suggestions and always find ways to incorporate them into his schooling.

Summer days 2009

2009-08-25T17:31:00.001-04:00

It seems like we have a new child who lives with us. Who would have thought that a little open heart surgery would bring out this energetic, seemingly understanding our words, jokester. But it has happened - every day we are marvelled at Brady's new found freedom on getting about the house, eating more and interesting foods, and cracking himself and us over little sideways looks and get-away tactics. And that is what, in a nutshell, we've been doing this summer.

Summer at the preschool was fabulous - Brady bonded with everyone, but most especially with the director's son who took it upon himself to be Brady's best buddy as his teacher. Every morning there would be water play before the kids would move inside for snack, but outside was definitely Brady's favorite time. A water-baby he certainly is, as has been tested all this week since we've been on vacation in Maine. Even now, we are heading out to the beach and water park, which is only a concrete slab of spritzers and sprayers, but where we spent over an hour as Brady led us around from one spray to the next, dousing his head under the showers.

Yes, led us - we are working more and more actively on walking --holding two hands, holding one hand-- as he tries to balance himself. His biggest obstacle is that he is trying to walk so quickly he is off-kilter and looks like a drunk at two in the morning. Using the walker he zooms by so fast he doesn't have to worry about that. But now, although he realizes how advantageous it is to walk unassisted, he is realizing he might have to slow down. Even though the boy doesn't talk, be assured I know he is none to pleased about that.

We are excited to be starting school in another week. Brady will be going four long days AND take the bus... oh my! We're even more excited that his WS friend Lucien will be in his class - how can we get any luckier than that?? We have always been blessed to have so many friends in the area, including his friends Coleman and Clare only a hop-skip-and-a-jump away, but to actually have them go to school together will be terrific.

The little man is climbing on the back of the couch to the air conditioner right now... time to get going to the beach....

Welcome to the Club

2009-05-03T22:11:00.001-04:00

I will post Brady's Walk photos and results in a few days, along with a little speech I said at the After Party.

In the meantime, I wanted to post an amazing letter a fellow WS mommy and dear friend Laura recently wrote. This is how it is.

My dear friend, I am so sorry for your pain.

Don’t worry; no one else sees it, I promise. To the rest of the world, you’re fine. But when you’ve been there, you can’t miss it.

I see it in your eyes. That awful, combustible mixture of heart-wrenching pain and abject fear. God, I remember the fear.

I see it in the weight of that invisible cloak that you wear. I remember the coarseness of its fabric on my skin. Like raw wool in the middle of the desert. You see, it was mine for a time.

I never would have wanted to pass it on to you, my love. I remember so well suffocating under the weight of it, struggling for breath, fighting to throw it off while wrapping myself in its awful warmth, clutching its worn edges for dear life.

I know that it feels like it’s permanent, fixed. But one day down the line you will wake up and find that you’ve left it next to the bed. Eventually, you’ll hang it in the closet. You’ll visit it now and then. You’ll try it on for size. You’ll run your fingers over the fabric and remember when you lived in it, when it was constant, when you couldn’t take it off and leave it behind. But soon days will go by before you wear it again, then weeks, then months.

I know you are staring down what looks an impossibly steep learning curve. I know it looks like an immovable mountain. It is not. I know you don’t believe me, but step by step you will climb until suddenly, without warning, you will look down. You will see how far you’ve come. You’ll breathe. I promise. You might even be able to take in the view.

You will doubt yourself. You won’t trust your instincts right away. You will be afraid that you don’t have the capacity to be what your baby will need you to be. Worse, you’ll think that you don’t even know what she needs you to be. You do. I promise. You will.

When you became a mother, you held that tiny baby girl in your arms and in an instant, she filled your heart. You were overwhelmed with love. The kind of love you never expected. The kind that knocks the wind out of you. The kind of all encompassing love that you think couldn’t possibly leave room for any other. But it did.

When your son was born, you looked into those big eyes and he crawled right into your heart. He made room for himself, didn’t he? He carved out a space all his own. Suddenly your heart was just bigger. And then again when your youngest was born. She made herself right at home there too.

That’s how it happens. When you need capacity you find it. Your heart expands. It just does. It’s elastic. I promise.You are so much stronger than you think you are. Trust me. I know you. Hell, I am you.

You will find people in your life who get it and some that don’t. You’ll find some that want to get it and some that never will. You’ll find a closeness with people you never thought you had anything in common with. You’ll find comfort and relief with friends who speak your new language. You’ll find your village.

You’ll change. One day you’ll notice a shift. You’ll realize that certain words have dropped out of your lexicon. The ones you hadn’t ever thought could be hurtful ...Dude, that's retarded... Never again. You won’t laugh at vulnerability. You’ll see the world through a lens of sensitivity. The people around you will notice. You’ll change them too.

You will learn to ask for help. You’ll have to. It won’t be easy. You’ll forget sometimes. Life will remind you.

You will read more than you can process. You’ll buy books that you can’t handle reading. You’ll feel guilty that they’re sitting by the side of the bed unopened. Take small bites. The information isn’t going anywhere. Let your heart heal. It will. Breathe. You can.

You will blame yourself. You’ll think you missed signs you should have seen. You’ll be convinced that you should have known. That you should have somehow gotten help earlier. You couldn’t have known. Don’t let yourself live there for long.

You will dig deep and find reserves of energy you never would have believed you had. You will run on adrenaline and crash into dreamless sleep. But you will come through it. I swear, you will. You will find a rhythm.

You will neglect yourself. You will suddenly realize that you haven’t stopped moving. You’ve missed the gym. You’ve taken care of everyone but you. You will forget how important it is to take care of yourself. Listen to me. If you hear nothing else, hear this. You MUST take care of yourself. You are no use to anyone unless you are healthy. I mean that holistically, my friend. HEALTHY. Nourished, rested, soul-fed. Your children deserve that example.

A friend will force you to take a walk. You will go outside. You will look at the sky. Follow the clouds upward. Try to find where they end. You’ll need that. You’ll need the air. You’ll need to remember how small we all really are.

You will question your faith. Or find it. Maybe both.You will never, ever take progress for granted. Every milestone met, no matter what the timing, will be cause for celebration. Every baby step will be a quantum leap. You will find the people who understand that. You will revel in their support and love and shared excitement.

You will encounter people who care for your child in ways that restore your faith in humanity. You will cherish the teachers and therapists and caregivers who see past your child’s challenges and who truly understand her strengths. They will feel like family.

You will examine and re-examine every one of your own insecurities. You will recognize some of your child’s challenges as your own. You will get to know yourself as you get to know your child. You will look to the tools you have used to mitigate your own challenges. You will share them. You will both be better for it.

You will come to understand that there are gifts in all of this. Tolerance, compassion, understanding. Precious, life altering gifts.You will worry about your other children. You will feel like you’re not giving them enough time. You will find the time. Yes, you will. No, really. You will. You will discover that the time that means something to them is not big. It’s not a trip to the circus. It doesn’t involve planning. It’s free. You will forget the dog and pony shows. Instead, you will find fifteen minutes before bed. You will close the door. You will sit on the floor. You’ll play Barbies with your daughter or Legos with your son (or vice versa). You’ll talk. You’ll listen. You’ll listen some more. You’ll start to believe they’ll be OK. And they will. You will be a better parent for all of it.

You will find the tools that you need. You will take bits and pieces of different theories and practices. You’ll talk to parents and doctors and therapists. You’ll take something from each of them. You’ll even find value in those you don’t agree with at all. Sometimes the most. From the scraps that you gather, you will start to build your child’s quilt. A little of this, a little of that, a lot of love.

You will speak hesitantly at first, but you’ll find your voice. You will come to see that no one knows your child better than you do. You will respectfully listen to the experts in each field. You will value their experience and their knowledge. But you will ultimately remember that while they are the experts in science, you are the expert in your child.

You will think you can’t handle it. You will be wrong.

This is not an easy road, but its rewards are tremendous. It’s joys are the very sweetest of life’s nectar. You will drink them in and taste and smell and feel every last drop of them.

You will be OK.

You will help your sweet child be far better than OK. You will show them boundless love. They will know that they are accepted and cherished and celebrated for every last morsel of who they are. They will know that their Mama is there at every turn. They will believe in themselves as you believe in them. They will astound you. Over and over and over again. They will teach you far more than you teach them. They will fly.

You will be OK.

And I will be here for you. Every step of the way.

With much love....

Brady's Walk 2009

2009-04-07T06:57:00.003-04:00

On Sunday, April 26, at 1 p.m. the third annual Brady’s Walk 2009 will be held at D.W. Field Park in Brockton to raise money for the Williams Syndrome Association New England Region.

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. This Fall, the WSA will be holding the first-ever Regional Conference to help families in all aspects touched by this syndrome - medical, social, behavioral. We are excited to help bring this conference into being!

Brady is now three-and-a-half years old and has been on fire! In October he started preschool at the Bellingham Early Childhood Program four mornings a week, where he also has all his therapies. He is thriving at this school he loves, having fun with friends and at the water table, his favorite. He is using his posterior walker to get around, and is practically racing in it -- we are hoping that he will soon just start walking without it.

Health-wise, this has been a positive year. Brady had open heart surgery in February where he and I camped out at Children's Hospital for 10 days. Thanks to all of you for your prayers, visits and gifts... as scary as the situation was, it was well worth it -- as just spending one afternoon with him NOW can attest to! The surgery has done wonders for his energy level and aptitude. He doesn't slow down, cruising around and talking up a storm. It seems there is a light on the horizon now, as his development keeps moving forward at a great speed.

If you would like to join us in the Walk, please do! Last year we had over 85 adults and children (and two dogs!) participate, by walking, scooting and bike riding. We've seen the walk grow every year, both in numbers and in the size of the check we are able to donate to the WSA. We also have some fabulous raffle prizes this year, generously donated... a couple of nice surprises!

Donations for Walkers are $5 for a child, $10 for an Adult, or $25 for a Family. Attached is a pledge sheet if you would like to get additional sponsors. (Checks are to be made out to WSA.) Please let me know if you are walking, so I can order your t-shirt and send you information for the day. You'll also get details about the After Party, always fabulous with food, entertainment and fun!

If you aren't able to come but would like to donate, please email me and I will let you know the address. Checks are to be made out to WSA. If you would like to donate a raffle prize, please email me at farrell4503@comcast.net.

Thanks in advance!
Kerry Farrell

Brady's Walk 2009!

2009-03-26T23:54:00.002-04:00

Sunday, April 26... same place, DW Fields Park, Brockton. Time will probably be 1 pm - I just need to coordinate with my partner in crime! More details to follow~

Back in the saddle again

2009-03-25T07:22:00.004-04:00

It's been a whirlwind since coming home from the hospital. Brady has taken off like a rocket and I am amazed at how different he is.

When we came home from the hospital that Tuesday night he was off crawling around, cruising... I had to call the nurse's station to make sure it was okay. They said whatever he was doing himself was fine, he wouldn't push himself to get hurt -- but I was amazed at this kid and his obvious forgetfulness over having open heart surgery just a week earlier. And he didn't slow down. His energy level was one thing --quickly crawling around, cruising more, jumping in bed every morning when I walked in to get him up-- but the other was his intent. Now you can see he has his eye on something and is going for it. Two minutes out of my eyesight the other day got him three-quarters up the basement stairs. Not moving the dog food bowl quick enough gets the food spread out all over the kitchen floor. Little, typical things that every two-year-old does that Brady is finally doing at three.

Being feisty has been a real interesting aspect as well. His squirming and quickness made it especially hard to pick him up, especially since I couldn't pick him up under his arms until two days ago. We started back at school last week, where they noticed an instant improvement. They were happy to report how opinionated he has become - a sure sign of development. Of course, that excitement will probably begin to wane and we'll have to start some behavior modification, I am sure!

Health-wise, Brady only lost a few ounces, which was amazing. His eating has improved. His recovery with his incision was remarkably quick. He has a different look on his face, he smiles more easily and readily. It actually frustrates me in one aspect, because I am wondering how he felt before the surgery -- he has a more relaxed look about him now. I have never been so aggravated over his non-ability to converse with me. What I wouldn't give for just a simple, "I feel great, mom!"

(You'll note in these pictures Brady is actually doing SOMETHING... very little laying around now... he's outta here!!)

Almost Over

2009-02-16T00:59:00.002-05:00

It's Sunday night and we're on the countdown for home. It looks like it'll be tomorrow or Tuesday, depending on when Brady will start drinking more on his own. He has had fluids the past few nights because he is drinking minimally, although he started eating better today. I really don't want to go home until I know he is not going to dehydrate.

Even as I type this, Brady is rolling over on his stomach, pulling into sitting position. He will probably pull himself up and stand against the crib rail. He did this a few times today and scared the daylights out of me. He looks great though!

I am a little nervous about going home -- how do you keep a three year old in one place?? I have been told that whatever he does on his own is fine, although he's not supposed to crawl. Yeah, right! This is going to be an interesting six weeks. Plus I can't pick him up under his arms - which is basically how I always pick him up. He's gone and gained all this weight, and now I have to pick him up like a baby, under his head and bum. Not TOO hard! Of course how can I complain... almost done!

Day Five

2009-02-13T22:19:00.002-05:00

Today was a little more exciting. Brady has had a couple days of chest PT, where they banged on his back to loosen up the junk in his chest. It's done wonders and he sounds clearer each day. He had a temp - only around 100 degrees - that they think came from all the mucus, since his white cell count they had done in the labs this morning came back fine. But for a few hours we were watching his temp and making sure it didn't go up.

Eating wise he started off great - ate a whole yogurt mid morning - but never dove into the apple juice that was offered. Finally, during the evening I used my brain and warmed milk for him. So far he has taken 10 ounces. I think tomorrow will be a better day. We're also going to take him for a ride around the floor - -woo hoo! Tom will bring Michael up after the Pinewood Derby, which is great since I haven't seen him since early Monday morning. Can't wait!

Day Four

2009-02-12T23:54:00.003-05:00

Cardiologist: Well, after his echo and we see how well he eats, he can go home tomorrow.

Me: WHAT?!?!?!?

Cardiologist: (smiling) Well, only if you're comfortable.

Me: Yeah - ummm... we're not going anywhere.

Yeah - we have open heart surgery on a child with Williams Syndrome and a dehydration issue and you suggest you go home without eating or drinking successfully for a few days? You better smile, doc!

To be fair, the cardiologist suggested this before he realized he wasn't eating or drinking. Once he realized that, his tune changed. Brady in general is doing better, he just needs to get off the fluids and start eating and drinking more. They put him on fluids at night to keep him hydrated, but we try to encourage drinking by mouth during the day.

He had his echo which showed that "you could drive a truck through his aorta, not that you'd want to do that," his doctor comically told us. When the tech did the echo she had to use a red iodine to prevent an infection -- it looked like a bloody mess, which I accurately scared my mother with when she came back in the room. Hey, when you're in the hospital for five days you need a little comical relief. :)

But what the echo showed was fabulous: the SVAS is completely gone -- how strange is that?? The pulmonary stenosis is still there, very mild and slowly lessening, but will be followed by echo, of course. It also showed that there is a little aortic leaking -- which I don't understand but apparently is common and not a big deal. Really?? It seems a little freaky to me, but I'll go with it.

We had a lot of visitors today; Kathleen and Cooper came over, along with Grandma, Josh, Pa, Doris and Amy. Teresa and baby Violet came which was extra special so I could meet the newest little one. She's so tiny -- Teresa kept reminding me "She's only three weeks, Kerry!" but she made Brady look so big - not an easy feat!

Day Three

2009-02-11T23:24:00.003-05:00

It's hard to believe that only two days ago Brady had open heart surgery. He's not jumping around or eating much, but today they took out his lead wires to his heart and took him off oxygen, as well as started to give him his pain meds orally instead of through an IV. They were set to take off his IV, but since he only drank a couple of ounces and ate half a pudding, they decided to give him fluids to keep him hydrated.

Brady is still mostly sleeping, getting a bit agitated right at the time when he is due for pain meds, so he is far from 100 percent, but slowly and surely he is making amends. The bandage covering his stitches came off today, which is a bit scary to see. There is a small bandage covering his bottom stitches they needed to reopen yesterday, and I'm already starting to hear the rules that will follow us home - no lotions or powders on the stitch site for months, no picking him up from under his arms for weeks and weeks... I think this will be an interesting set of rules we will be bringing home.

Tonight Nance and Stef came by with buffalo wings- yum! It was a fabulous treat during these long days. Grandma came again today with yet another present for the patient, of course :)

Day Two

2009-02-10T20:30:00.002-05:00

Mr. Brady is sleeping. We are in our room on the cardiac wing, sharing with a one-month-old little girl who will have heart surgery on Thursday.

Today has been a long one. It started off good - they took out the breathing and feeding tubes around 4 a.m., with little crying from Brady, and then he went right back to sleep. His morning was uneventful, mostly sleeping. Late morning they attempted to take out the chest tube - usually the nurse can just pull it out and tie off the small stitch. His did not pull out. The attending surgical consult could not take it out either, so they contacted Brady's surgeon and he came up to check on him.

After deliberating, they decided they needed to undo his bottom three stitches and take out the chest tube that way. This would mean intubating Brady again and giving him sedatives. The whole procedure took little time with great success. Since he was sedated, they planned on keeping him intubated for a few hours, then, as he woke up they would excabate him.

Well- Brady apparently didn't hear that plan! Something common with three-year-olds is manipulating the tube with their mouth and tongue. This is what Brady did, thus knocking his tube out of the trachea. They had to excabate him and manually gave him oxygen while they determined if he was able to breathe on his own or if they needed to intubate him for the third time in the day. After watching him for about 10 minutes, they could see he was breathing on his own so they didn't need to do it again. Phew!

After a nap-filled afternoon, Brady moved into his room at 7 p.m. He has had about three ounces of apple juice and still sleeping. In the morning they will take him off the oxygen. Grandma was here all day (thank you!!) and Grandpa came too, which was great. I'm wondering how much energy this little rugrat is storing up that we will see tomorrow. :)

Day One

2009-02-09T21:10:00.004-05:00

It's been a long day. Not going to bed til 2ish, getting up at 4:45, a little catnap around 10... I am ready to drop. I am sitting on a bed at the Best Western next to Children's, hoping to get more sleep that if I was laying on the little bench behind Brady's twelve beeping machines. Completely zonked until tomorrow, the little boy doesn't even realize that I am gone, which is of course the only reason why I am here, and not there.

The day started pretty well - not too much traffic driving in, then Brady crashed pretty quickly on the sedative they gave him. By 7:45ish he was whisked off to be prepped. By 9:25 they had made their first incision. Not too long later he was on the bypass machine, then at 10:50 the surgeon was walking out to meet us. Things had gone very smoothly to repair Brady's supravalvular aortic stenosis. They also removed a flap that was over the coronary artery, which, apparently, is common with WS kids. And since they were hanging out around the heart anyway, they repaired his little VSD.

He's been pretty much plowed since then; in fact they decided a short time ago to wait to excabate him until tomorrow so he can continue to be sedated. The docs like their patients to be awake to be excabated, but then they would have sedated him again to rest and they didn't want to put him through that back and forth. Brady tends NOT just lay down and chill out, so I think it is a good plan.

So here I sit, with a borrowed laptop (Thanks, Lisa K!!) and a help figuring it out how to work it (Thanks Lisa R.!). I will be able to keep up with everyone over the next week while we are here. Thanks especially to Nanci for all the advice- I am using it all!! And once again, thanks to everyone for their prayers, gifts, Michael-sitting, and dinners... I know the BEST people!

Big Day Tomorrow

2009-02-08T17:40:00.002-05:00

Tomorrow is the big day - open heart surgery for Brady. We need to get to Children's by 6:30 a.m. and they will start the sedative and be ready by 7:30... wow!

Pre-op went well. He still has a runny nose, but no fever. His white blood cell count was high, but they said it was probably because he had been fighting the virus. As long as he doesn't have a fever, we are good to go.

I have had so many good wishes and prayers, gifts and food come my way -- THANK YOU ALL!! It is a relief to to worry about anything at home, it is all taken care of. Brady is on about five church prayer lists, plus Tom's father's cousin's nunnery - can't beat them! They've got the closest conversations to The Big Man!

I will have a laptop (again, another generous friend) so I will update while I am hospital bound. I will also be on Facebook too.

Thanks again to ALL of you!! Talk soon~~

Random Thoughts

2009-02-04T21:04:00.004-05:00

The countdown is on - less than a week now until Brady's surgery next Monday. Funny, time doesn't stop for you to catch up and get everything done when there is something big on the horizon. Luckily, I have had numerous friends and family offer their help in terms of watching Michael, the dog and feeding Tom, and I appreciate them ALL ... I'm taking people up on them as well! Heck, I'm even asking people who didn't offer just because it made sense depending on timing and the fact that Michael wants to play with their child. :) Shy? Nope, not me!

Brady got a runny nose this past week, so I kept him out of school earlier than I planned, but I was able to bring him in so he could pass out his Valentines on Tuesday. He had gone to his FIRST non-relative/non-Mom's friend birthday party from a girl in his class a few weeks ago. He had gone barreling in to the play area with his walker and the kids were all, "Brady! Brady! Brady!" Once they entered the bouncy-filled room, they quickly sped off, but for the first 15 minutes he was the center of attention. :) It was fabulous!

I was lucky enough to see Teresa, pre-Violet's entrance into the world, and meet another WS mom, Tammy. Her son is the same age as Brady and their issues are very similar, so it was great to compare notes and get some advice. I am so glad I got to spend time with them, especially since I missed the January meeting of the WS moms at Laura's (due to trying to get everything done and poor timing) and sickness has kept away Coleman's and Lucien's families.

I am getting a lot of helpful advice from other WS moms whose children have gone through heart operations, and it has been such a blessing. I've been asked if I am nervous, but I honestly haven't had time to think about being nervous. I plan on staying with Brady at the hospital, which means an 8-10 day stay, so trying to get everything organized and done before I take off is all I have been doing. I am borrowing a laptop so I can keep the updates going and continue my ever-growing obsession on Facebook. :)

Amidst all this, we have also had some hard times. My Aunt Sadie passed away on February 1, and it's so hard to think she is no longer with us. She is in our prayers, and I know she is looking out for Brady as well.

I am confident this surgery will do wonders for my little man... I think he will really take off once he has the energy. He already has the drive, it is obvious just keeping him home these past few days. With no fever, no aches, just a runny nose, he was definitely going full speed. How is he going to top this?? I can't wait to see!

Woo hoo!

2009-01-07T22:19:00.003-05:00

Even with Brady's sickness for two weeks, he gained SIX OUNCES this past month - he is now at 22 lbs. 1 oz. I was certain he would have lost... man, I wonder how much he would have gained had he not been sick?

I beat him, of course - I gained back all my sickness weight lost :) Oh well....

Kids Bunco

2009-01-03T10:55:00.004-05:00

Once a month a group of overtired, kid-free, husband-free, anxiously-going-out mothers gather to play Bunco, a fun dice game that you need not pay too much attention to play. This is great so that we can chat, eat and drink and still play - I highly recommend it to everyone!

One mother suggested getting the kids together for a Bunco night of their own, since many times they are trying to sneak in to play at ours. Everyone turned in $5 and the kids played for dollar-store type prizes. They had a blast.

The mother who organized it suggested giving the $60 raised to the WSA in Brady's name. She is always present at Brady's Walks and visited us in the hospital when Brady was born. Her daughter is just a month younger than Brady and was his first playdate at two months old :)

Thanks, to everyone who came to Kids Bunco and supporting the WSA - and thanks to Shari for putting it all together!

Surgery Update

2009-01-02T01:01:00.005-05:00

Brady's surgery has been slated for Monday, February 9; plus we get the added bonus of spending all day Friday, February 6 at the hospital (7:30 a.m. start time!) for pre-op. I also added a Genetics appointment for that day, switched it from January since we were going to be there anyway.

I have to call the cardiologist and ask him a few questions, because I am being asked questions I don't have the answer to! It was a surgery we knew was going to happen, he told us we were having it, so I was all set. We got our summary letter he always sends and there's a few more things they are "concerned" about that I don't recall talking about... or perhaps we did.... even with my mother there it's all info way over my head. Brady has his weight check on Wednesday so I may even ask her a few questions.

Happy New Year

2009-01-01T10:38:00.003-05:00

Happy New Year! It has been a whirlwind this past month, as I am sure it has been for everyone else. On top of our regular holiday activities, Brady set off a week of sickness beginning Christmas Eve that spread to everyone in our house, plus my parents, my sister, my brother, my father-in-law, two of my sister-in-laws, and my brother-in-law. Now, while we can't be certain that Brady was the original culprit (it IS December in New England, germs are everywhere!) there is a lot of finger pointing at the two-and-a-half foot tall cutie. Everyone is on the mend now, and after going a little cabin fever we are moving into the new year with open arms.

We're always talking about what to give the kids for gifts - I have to say we did well with Brady this year. He didn't need a lot of clothes, but he did get a few outfits that are adorable and pajamas and socks that he did need. He received music CDs and a Veggie Tales Silly Songs DVD that is a hit (with Michael too - he loves "Oh where, is my hairbrush?"). He received Pampers, wipes, Easie Eaters (bent forks and spoons so he can feed himself easier), a few toys but nothing insane. A new backpack for school. The Wiggles toy car (see in pic), a wave drum (loves!), puzzles with big handles (by Melissa & Doug - found cheapest at AC Moore) a music table, a new swing for the swingset and a trampoline that we played with at the WSA Christmas party that he LOVED. Tom did not love putting it together, but I know Brady will love it and it will be good for him.

A friend and I were discussing how Christmas was pared down this year with the economy the way it is and all. She noted that she gave her son just a couple of the items on his list and he was extremely pleased with them and didn't mind that he didn't get the entire list. She said, "I realized right then that we've been doing too much; he was happy with what he got." Something to remember and stick too, even if the economy turns around. I am sure that we're all being taught a lesson by someone above because it seems we all seem to overkill. I think I have a good head on my shoulders, but I know places where we can cut back that would be good for our minds, never mind our wallet.

OK, soapbox #1 is over! Here's a toast to my fellow WS moms and friends out there to a fabulous and healthy New Year -- clink, clink!

2008-12-11T22:18:00.003-05:00

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...

Meet me in St. Louis...

2008-12-10T22:57:00.003-05:00

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!

2008-12-03T22:39:00.002-05:00

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 :)

Brothers

2008-12-01T23:56:00.005-05:00

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.

Ode to Love Puppy

2008-11-25T23:30:00.008-05:00

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!

What's wrong with you, boy?

2008-11-09T23:20:00.005-05:00

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.

Boo!

2008-11-05T17:02:00.004-05:00

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???

Quick update

2008-10-30T15:30:00.002-04:00

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!

Brady Goes to School

2008-10-16T22:48:00.007-04:00

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 :)

Happy Birthday Brady!!

2008-10-13T19:39:00.004-04:00

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!!!

What we've been up to

2008-10-02T12:37:00.014-04:00

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 :)

2008-09-17T23:39:00.002-04:00

Be kinder than necessary,

for everyone you meet

is fighting some kind of battle.

Prayers

2008-09-12T08:12:00.002-04:00

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~

Another Day in the Neighborhood

2008-09-01T21:33:00.002-04:00

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.

Time Out for Some Humor

2008-08-29T18:07:00.003-04:00

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.

What Not To Say

2008-08-28T12:55:00.003-04:00

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.

Do you need a ride?

2008-08-27T13:07:00.002-04:00

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!

The Old Days

2008-08-22T21:17:00.005-04:00

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.

Just yesterday...

2008-08-18T23:11:00.002-04:00

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!

Counting My Blessings

2008-08-17T21:15:00.007-04:00

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 :)

Numbers

2008-08-16T08:58:00.005-04:00

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.

B stands for Lobby

2008-08-14T18:24:00.003-04:00

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.

Thanks~

2008-08-13T15:14:00.004-04:00

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!

Finding New Friends

2008-08-12T16:50:00.002-04:00

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.

2008-08-11T21:47:00.002-04:00

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

2008-08-11T18:53:00.004-04:00

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.

2008-08-10T23:44:00.008-04:00

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!

2008-06-30T17:36:00.003-04:00

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??? :)

2008-06-26T22:38:00.004-04:00

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??)

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

2008-06-16T23:08:00.007-04:00

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.

Finally! Brady's Walk 2008

2008-05-27T23:56:00.001-04:00

Counting My Blessings

2008-05-18T08:59:00.002-04:00

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.

2008-05-17T20:37:00.004-04:00

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.

2008-05-11T21:59:00.002-04:00

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!

Brady's Walk 2008 ~ a HUGE Success!

2008-05-01T08:44:00.000-04:00

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!

2008-04-21T23:40:00.002-04:00

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? :)

2008-04-18T00:36:00.003-04:00

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

2008-04-13T23:31:00.008-04:00

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 :) )

MRI Update

2008-04-11T22:14:00.002-04:00

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!

2008-04-10T21:54:00.002-04:00

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!)

2008-04-08T23:29:00.002-04:00

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!!!

2008-04-06T14:59:00.005-04:00

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!).

2008-04-05T08:19:00.005-04:00

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.

2008-04-02T23:26:00.002-04:00

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.

Brady's Walk 2008

2008-04-01T20:32:00.003-04:00

(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.

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!

Introducing...

2008-03-13T14:04:00.003-04:00

.... 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!

Counting My Blessings

2008-03-09T22:07:00.005-04:00

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. :)

2008-03-07T06:34:00.005-05:00

Wow - is it Friday already?? This week has been crazy, although I am noticing I am always saying that. Maybe I need to redefine "crazy".

Last week, we went in for Brady's echo needed for cardiac clearance for his eye surgery this past Tuesday. After we got the clearance from the cardiologist, we went down to Pre-Op to find out if we had to hand in our little piece of paper marked "CLEARED". Nope ~ they sent us back to cardiology for the cardiac anesthesiologist. After the nurses discussing for a few minutes, they said we were all set and Brady would be taken care of on Tuesday. Great!

Friday came and went with no phone calls asking us to do anything different before surgery, so Monday morning, before I went in to work, I called Pre-Op. Just checking in... the nurse looked him up, saw he was in the system and said we'd get a call in the afternoon about what time to be there the next day for surgery. Great! I kissed Brady Bunch on his head, said bye to my mother and left.

About 10:30, I get a call from the surgical coordinator at the Ophthamologist office. She said, "Umm.. I Brady needs to go to Pre-Op today before 1:30, when they close. If you don't go he won't have surgery tomorrow" WHAT?!??! Of course this is also the Coordinator who DIDN'T coordinate the need for the echo last month, when we were SUPPOSED to have surgery and it got bumped a month. So, I called cardiology and a nurse there spent almost 10 minutes researching the whole thing. (They always help me :)) She comes back to the line and says, yes we did have to go and explained he needed to see anesthesiology, and get his vitals.

ARGH! Obviously whatever needs to be done for Brady is fine, but couldn't we have a little more notice than this? That's why my mother and I trekked around the hospital last week, why I called the morning before. I wouldn't have gone to work if I knew I had to be at the hospital - I only work one or two days a week as it is, and luckily they just go around my schedule. I then had to call in more favors so someone could pick up Michael (Thanks, Stef!).

My mother drove to my work, picked me up, then we drove into the hospital. When we finally saw someone, they mentioned Brady would probably be staying overnight after the surgery. WHAT!?!?!? Everyone who has this surgery goes home after, even those with worse cardiac issues than Brady. The nurse said it would be up to cardiology after the surgery, but pack a bag just in case. Again, whatever is best for Brady, but I didn't even know this was a possibility. I spent sometime on the phone then juggling where to send Michael off to now. I got home that night at 7:30 after hitting the store on the way, exhausted.

The next morning we headed out, and everything went smoothly, more or less. They had to wait for a cardiac anesthesiologist which put us about an hour behind schedule, but the anesthesiologist we had was FABULOUS and spent extra time with him. Brady himself did great - with no food for eight hours and only an ounce of apple juice three hours before surgery, he was not crabby or cantankerous. He sailed through with flying colors and recovered very well, sleeping most of the time in the recovery room and eating a popsicle or two. We were able to be cleared to go home 4-1/2 hours after surgery when they saw everything was fine cardiac-wise and anesthesia-wise. He actually does very well with the anesthesia, not getting sick or crabby. He just slept. We got home about 7:30 again, he drank a little juice, then went back to sleep for the night. I was so glad to be home!

He was a little constipated the day after surgery - I didn't realize it could be a side effect to the anesthesia (you remember, the surgical coordinator did not do a great job). I will just remember to give him Glycolox after he wakes up from surgery in the future. His eyes were only a little red after, and three days later they are still red in the center, and will be for another week or more. His eyes seem rounder for some reason, maybe just because he is more aware of what he's looking at now (my girlfriend said, "yeah, now he sees how ugly we are all now!" LOL). Every day I notice a little more interest in him and his surroundings. We go back to ophthamology in two weeks for a follow-up, but I think it turned out great. (except trying to get this ointment in his eyes twice a day - ack!!! Impossible!!)

Funny how the biggest pain was the day BEFORE the surgery. Just aggravation~ especially since it was all stuff I COULD have known beforehand. I can work with whatever is thrown at me, but if you KNOW I have to go to Pre-Op, can you give me more than three hours notice when I am 45 minutes away from my house? All that matters, of course, is Mr. Brady and see how great he is:

2008-03-05T12:25:00.002-05:00

Hey folks~ thanks to ALL who have been praying for the little Braidster. We are home and doing great. I will post pictures and the whole story tonight, including my AGGRAVATION factor the day before ;). But the little man is back to himself and we are all doing better. Thanks Mom, for coming with!!!

Counting my Blessings

2008-03-02T14:17:00.006-05:00

1) I am very blessed that Brady's echo went well enough on Thursday to pass him for his eye surgery this Tuesday. It wasn't 100 percent fabulous news.... the gradient in his SVAS did increase slightly, from 35-40 to 50 since last September. We have been lucky that for the past two years it has not been going up and we have avoided having a cath. Now, instead of going back in six months for another echo we are going back in June. Our cardiologist said if it goes up even a little we will probably have a cath. I knew it would come at some point, so I wasn't really too surprised. And, again, I do feel lucky that it is not at some horrendous number that he isn't cleared for surgery. I can't wait for this surgery to be done so we can see what differences will happen in Brady.

2) I am very grateful that the new temporary permanent (LOL) pastor at our church seems to be a great guy. We met him today for the first time; and while he is not as charismatic as Father Dennis, he is upbeat, energetic and friendly. He came right over to Brady when he saw him and talked to him (Brady has that way with people!). Later on, during coffee hour, Michael took Brady up to him and we were able to speak to him a little longer. I spoke about Brady's upcoming surgery and Father Moroney blessed him. He was asking questions about Brady's health so I said he had Williams Syndrome, and he said knowingly, "Ah, yes, Williams syndrome." Turns out he has spent much time in Children's hospitals and knows the syndrome quite well. How bizarre! I said, "Well, you're one of the few!" We have Father Moroney until June at least, then our permanent permanent pastor will be named. I think it will be a good spring.

3) I'm grateful for the friends where you can just kick back and be yourself, including those we were with on Friday to celebrate our friend Jim's 10th birthday! Actually, it was the big 4-0 but since his birthday falls on February 29th, he is REALLY only 10. :) We went out for dinner and gambling and even the 15 minute ride there and back was a hoot and a half (...and a little smelly). I am thankful that there are as strange people as we are out there :)

4) This week I had a Fourth Grade Activities meeting (Michael is a "senior" at his elementary school and they get a bunch of fun activities this spring) and a Den Leaders Cub Scout meeting. I am thankful that we have such great volunteers in our community... but more important I am thankful I am able to do these things for my son, and Tom understands how important they are to me. I am big into the motto "Our kids are only little once" and I would like to help where I can. I know that time is ticking away and pretty soon Michael will not seek me out at the halls of the school to give me a hug as he does now, but instead turn his head and ask me NOT to be around so much LOL.

2008-02-27T00:05:00.007-05:00

He will be with you also, all the way, that faithful God.

Every morning when you awaken to the old and tolerable pain,

at every mile of the hot uphill dusty road of tiring duty,

on to the judgment seat, the same Christ there as ever,

still loving you, still sufficient for you, even then.

And then, on through all eternity.

-Thomas Kempis

May our children be watched over and may our prayers help ease the families of those who are suffering. Baby Blake is having such a hard time right now... we are all thinking of you, Whitney.

Wednesday, Feb. 27 - I just heard that baby Blake has passed. You will be in our hearts forever, little one.

Counting My Blessings

2008-02-24T14:35:00.006-05:00

1) I am fortunate to know many wonderful WS families, but I am concerned for so many right now; I am just keeping up with the medical updates from Blake, Ava, Ava Jewel, Michaela and a few others who also have surgeries coming up. Brady has eye surgery next week, but these other little ones have some major issues that break my heart. Please send all your special prayers out to my fellow WS families.

2) I am thankful for the progress Brady has made over the last few months. His progress over the last year was made evident when we did his yearly assessment through Early Intervention on Saturday. He is scoring around the 12-15 month range, with Gross Motor being around eight months (thank you, low muscle tone!). Everything is a HUGE leap forward and I can't begin to explain how obvious it is to see how well he is doing. We had to LOWER his crib today because when I went in to check on him, he was high kneeling against it, then in front of me he stood up, ready to hang over the edge! Aahhh!!! (Yes, mother, you were right!)

3) I am thankful for all the little buggers who crack me up... especially my nephews Jack and Adam. Jack is three and acts like all three-year-olds which is funny right there; plus he comes out with such fabulous one liners that he has adults mimicking him. Our latest and greatest line is "What the heck is that, Kerry?" Imagine that coming out of a pint-sized little cherub with a serious tone. Michael and I quote him often!

My nephew Adam is 10 and has such a dry sense of humor, he is funny sometimes and doesn't even realize it. He also cracks us up with jokes he plays on himself. It's nice to be able to hang around with a kid who is entertaining. We often "borrow" Adam so Michael has someone his age to play with on trips and sleepovers. They get along like brothers - fighting one minute, loving each other the next. In fact, when they are fighting, I tell them, "Ok guys, time to kiss and make up!" That usually sets the mood back to normal!

4) I am thankful that my niece Amy is in love with Brady as we are and will babysit. I am completely comfortable with leaving Brady with her for overnights as well. She is an amazing person and I am so grateful she is in our lives and not sick of us yet :). As she has grown older, she has become an amazing woman whom I know will bless others.

Play Date

2008-02-20T22:08:00.013-05:00

Last Sunday, we were fortunate to have a little gathering with other WS friends. Including Brady, we had five toddlers with WS over for lunch and music class. In the first picture above, left to right is Brady, Clare, Luke, Coleman and Lindsey.

Almost-three-year-old Clare came down with her family. Clare and Brady get together often, for which I am very thankful. Clare's family is pretty fabulous, and we are quite comfortable with them. We met Sue and her daughter Lindsey for the first time, who lives in a neighboring town. Lindsey will be four this summer, and a real cutie patootie. Our little Music Therapy buddy Coleman, 15-months-old, was here as well, bustling about wondering what everyone was doing here, smiling all around. And we had just met friendly little Luke, 18-months-old, who lives in the same town as us. Luke and Brady share their OT. In fact, it was seeing a picture of Clare that brought the idea up to the OT that Luke might have WS in the first place.

Everyone came at pretty much the same time; unpacked the diaper bags and started chatting right away. I felt like there was an instant conncection with everyone; I don't know if it was the common WS denominator or the fact that we are all fabulous people LOL. Tom and Michael were originally supposed to take off to work on Michael's Pinewood Derby Car, but Michael headed off to play with friends and Tom was a helpful pair of hands... in fact I think he held more of the kids than anything! He is a child magnet.

After lunch, we all sat in the living room and sang along with Danielle and her guitar. (There are seven days, seven days, seven days in a week...) Then she sang for us, a beautiful, husky voice that always amazes. She pulled out the shakers and drums for the kids to make music with. They were all enthralled with her and the guitar; Brady is mesmerized when ever she is here. You can physically see a difference in him as he drinks in the music, the beat. Was I looking for this child to have some musical appreciation since he was WS? I don't know, but it is vivid.

Writing this a few days later something has occurred to me: throughout the day, there was not a cry in the house - they were all quite busy playing with toys, eating or enjoying the music class. I can't say with all the playgroups Michael has been in over the years when he was young that there wasn't SOMEONE crying. Not this troop! They were interested in what was going on, they were busy having a good time -- no time for crying! :) It was a fabulous Sunday, hopefully one of many tp come with these wonderful families.

On a sidenote ~yes, that IS a picture of me! Oh my! ~ you'll see my rock bracelet on my left arm. Lisa and I have matching rock bracelets from when we visited them in January. As Joey Tribiani would say, "We're bracelet buddies!" LOL

Counting My Blessings

2008-02-10T17:18:00.000-05:00

1. I am blessed that Brady and I had a fun day with Angela and 1-1/2-year-old James this week - we hit a kid's play area which had a bouncy, ride-on toys and little jungle gyms. James was all over the place, running around and enjoying himself and I am happy to say Brady did partake in some of the toys as well. He sat on a little car for a roller coaster and held tight as it made its way down the track. He bounced his legs up and down on the edge of the jumpy. He sat on the little police motorcycle rocking toy and rocked back and forth (with mom pushing of course). It was nice to do something "normal" ... I am always thinking of things I did with Michael that I can't do with Brady, but he is getting stronger and able to do more every day.

2. I am blessed with a healthy family as I hear everyone around me getting sick with colds, pneumonia, you name it (I hope I didn't jinx anything!). We always joke that besides Michael's peanut allergy and Brady's heart condition, we are a pretty healthy family! I don't envy those who seem to get hit everytime something goes around.

3. I am blessed for my sister, Kathleen, who is donating 100% of the profits of her February online orders to the Williams Syndrome Association for Brady's Walk 2008 for Tastefully Simple products. This unselfish act reminds me how wonderful and generous people are. I know she has already received orders from St. Louis (thanks, Kel!). Her website is http://www.tastefullysimple.com/Cultures/en-US/.

4. I am thankful for the lazy weekend evening Michael and I had... popped some popcorn and watched "Hot Rod" (the humor of "Napolean Dynamite") under cozy blankets. I must admit I might have dozed off one time LOL, but it always makes my day to have some fun one-on-one time with him. He enjoys picking out the movie and cuddlin' up too~

2008-02-09T22:07:00.001-05:00

Mr. Brady has been very active these last couple of weeks. He is not content just hanging out anymore -- he wants to MOVE! He crawls backwards, I think just to move, not to necessarily get anywhere. He is eating food more readily, although we are still stuck at the Stage 2 baby food. He is eating that more than his bottle though, so although he is eating more he doesn't always gain a lot of weight without his bottle too. We'll see how he does at the end of the month at weigh-in.

I had put Brady down on the changing table and after walked away to throw away a diaper -- this is what I saw when I came back (about 4 seconds later): Aah! No more walking away from this kid!!

Being a mom

2008-02-07T23:02:00.000-05:00

I actually have some news to report on the little man.... like he is crawling backwards, he does not sit still, always wanting to move, eating great... but I was sent this story the other day and it sounds like everything I feel and more.

We are sitting at lunch one day when my daughter casually mentions that she and her husband are thinking of "starting a family."

"We're taking a survey," she says half-joking. "Do you think I should have a baby?"

"It will change your life," I say, carefully keeping my tone neutral.

"I know," she says, "no more sleeping in on weekends, no more spontaneous vacations."

But that is not what I meant at all. I look at my daughter, trying to decide what to tell her. I want her to know what she will never learn in childbirth classes. I want to tell her that the physical wounds of child bearing will heal, but becoming a mother will leave her with an emotional wound so raw that she will forever be vulnerable.

I consider warning her that she will never again read a newspaper without asking, "What if that had been MY child?" That every plane crash, every house fire will haunt her. That when she sees pictures of starving children, she will wonder if anything could be worse than watching your child die.

I look at her carefully manicured nails and stylish suit and think that no matter how sophisticated she is, becoming a mother will reduce her to the primitive level of a bear protecting her cub. That an urgent call of "Mom!" will cause her to drop a soufflé or her best crystal without a moment's hesitation.

I feel that I should warn her that no matter how many years she has invested in her career, she will be professionally derailed by motherhood. She might arrange for child-care, but one day she will be going into an important business meeting and she will think of her baby's sweet smell. She will have to use every ounce of discipline to keep from running home, just to make sure her baby is all right.

I want my daughter to know that every day decisions will no longer be routine. That a five year old boy's desire to go to the men's room rather than the women's at McDonald's will become a major dilemma. That right there, in the midst of clattering trays and screaming children, issues of independence and gender identity will be weighed against the prospect that a child molester may be lurking in that rest-room.

However decisive she may be at the office, she will second-guess herself constantly as a mother. Looking at my attractive daughter, I want to assure her that eventually she will shed the pounds of pregnancy, but she will never feel the same about herself. That her life, now so important, will be of less value to her once she has a child. That she would give herself up in a moment to save her offspring, but will also begin to hope for more years, not to accomplish her own dreams, but to watch her child accomplish theirs.

My daughter's relationship with her husband will change, but not in the way she thinks. I wish she could understand how much more you can love a man who carefully bathes the baby or who never hesitates to feed, change or play with his child. I think she should know that she will fall in love with him again for reasons she would now find very unromantic.

I wish my daughter could sense the bond she will feel with women throughout history who have tried to stop war, prejudice and drunk driving. I want to describe to my daughter the exhilaration of seeing your child learn to ride a bike. I want to capture for her the belly laugh of a baby who is touching the soft fur of a dog or cat for the first time. I want her to taste the joy that is so real it actually hurts.

My daughter's quizzical look makes me realize that tears have formed in my eyes. "You'll never regret it," I finally say. Then I reached across the table, squeezed my daughter's hand and offered a silent prayer for her, and for me, and for all the mere mortal women who stumble their way into this most wonderful of callings.

Simple Sunday Thanks...

2008-02-03T14:07:00.000-05:00

1. I am grateful that Brady has been on an eating and moving surge this week. I am finally feeling like a parent of a two-year-old instead of a newborn who just sits there. We've always been a little boring over here, but now he is not content just hanging around too long without something to do.

2. I am grateful to meet our new friend Lucien, an 18-month old with WS, who lives in our town. He is so adorable and lovable, and we were able to hang with him and his triplet sisters this weekend. I am hoping to get together with his mom often, as she is such a nice NORMAL person LOL (Hopefully she thinks I am!). Lucien is doing great, crawling around like a caterpillar.

3. I am SO grateful we had Music Therapy this week with our friend Coleman. Brady does so well in Music Therapy - you can see his excitement and he seems to have such a great day after. Having Coleman here is also fun, I love for Brady to be able to hang with peers. I know he will get so much input that way. The therapist, Danielle, does such a great job entertaining the boys with her sultry voice and musical instruments. I am SO lucky we found her!

4. In fact, I am grateful for my whole Saturday -- meeting Lucien, playing with Coleman, Grandma and I hung out and had lunch; we had a relaxing day and then Tom and I went to the movies alone (gasp!) and had appetizers after. Brady and Michael were left in the capable babysitter's hands without a worry in our heads. Ahhh....

5. I am grateful we had a great visiting priest this morning at church. We have had some bad times over here... our beloved Pastor has been removed from our parish and there seems to be a dark cloud over everyone's hearts. I know it is for the best, as he is a recovering alcoholic and needs to address that addiction illness -- he can't take care of his congregation if he can't take care of himself. I almost feel guilty being so sad and feeling lost. Father Dennis has such a magnetic personality I worry about who they will replace him with come March. I can only hope and pray that we are able to have someone as blessed as him. But being able to say that I am grateful we had such a good priest today gives me hope that we might find someone wonderful.

6. Last but certainly not least... I am grateful for the PATRIOTS going to the SUPERBOWL tonight! Yahoo - Go Pats!!

2008-01-29T21:11:00.000-05:00

At 27 months, Brady is no longer just a roller... he is officially a layer-downer-who-puts-himself-in-sitting-position! Yahoo! He did it once yesterday, but I refused to believe it was the real deal... so today he did it with OT, then the rest of the day! Yahoo!!

In the middle of him doing all this, he keeps trying to pull himself to stand. He has always loved to stand, but he is so intent on getting there now. I think we are in for a crazy time here, as I see so many things falling into place for him now.

Here are some pics of Brady and his cousin Cooper hanging out. Cooper is seven months old and very intent on trying to play with Brady and his toys, as you will see in these pics~~

"Hey, there, how you doin'?"

"Baby RAW... I'm gonna get you!"

"MOM.. can Cooper go home now????"

"So, you're telling me there's a guy's hand up Elmo's butt?? Gross!!!"

Being thankful

2008-01-27T22:12:00.000-05:00

Every Sunday, Kayla's mom Michelle (http://mdbeau.blogspot.com/) posts her Grains for Gratitude. Such an inspirational list of thanks lifts my mood every week, even when the thanks are such small items, like going out to see a movie with a friend. I am thankful for all things in my life, so I am going to rip off Miss Michelle and (hopefully) post often as well. Remembering why we are thankful will certainly push aside those times we are down.

1. I am thankful to Michelle, Kayla's mom for inspiring me every time I read her blog... as I am also thankful to the other mom bloggers out there - Nancy, Lisa, Teresa, Aspen, Amy, Noel, Heather, Julie, Penny, Laura, Katie, Tara, Camille, Michelle, Nicole, Kim, Anna... and the many more I read - who advise me, cheer me up, bring me back to Earth, and find me solace.

2. I am thankful for the peace of mind I have since completing our trips to Kentucky and Children's Hospital WS clinic. I am more at ease with Brady, like we are on track and have strong, defined goals in front of us. I know he is more delayed than other WS kids his age, but he is also more capable than I give him credit for.

3. I am thankful for Mom and Dad giving me a new book for Christmas that I am hooked on - Keeping Faith by Jodi Picoult. Yes, it is one of her amazing stories, and it is about faith. I will certainly send off a full report when I am done. I am just thankful to be in the middle of a good book right now, because I find having any little time to read and chill out is a gift to myself that I don't always remember to do.

4. I am thankful that Tom was fixing the grout and caulking in the bathroom this weekend so I couldn't take a shower until later in the day today -- which means the kids and I did not go ANYWHERE today and played and relaxed. The fact that it was lightly snowing was a topper. I suppose it also means that I am thankful that Tom can fix things like that, he is such a handy guy! :)

2008-01-22T13:10:00.001-05:00

SO.... long story short, we have had to cancel the MRI that was scheduled for today and postpone the eye surgery for Feb. 5 because the ophthalmologist did not check "Needs Cardiac Anesthesiologist" on the form. This meant that cardiology needed to review the case, which they did and said Brady needed an echo before he goes under since it his last one was in September. It was a mistake, and the ophthalmologist did call me herself to apologize. She was surprised that the computer didn't catch it though, because she said with his cardiac issue it should pop up that he needs the extra care.

Anywho, EVERYTHING got changed... so I spent the better part of today making the new echo appointment (Feb 28) cancelling the old one, making the new eye surgery appointment (March 4) then the eye doctor follow up appointment (cancelling both the old ones), then the new MRI appointment (April 4) then the new neuro follow up appointment (by the way, these are five different offices I had to call and coordinate!), THEN call and make the new weight check appointment with the pediatrician and call for the bloodwork order to be sent over to the lab so we can get his calcium checked! Was that it?..... ummm... wait, there's more! I also planned out his Music Therapy visits, sent those off to the other mom doing it with me and the teacher, THEN try to coordinate new appointments for OT because she has to switch her Thursdays to Saturdays for a few months, AND try to figure out which days I am going to work so I can ask Grandma and Pa to babysit!

Ok... now I'm done!

We're goin' to the Superbowl!!!

2008-01-20T22:25:00.001-05:00

Michael was MORE than happy to call Lisa's husband Chris tonight and tell him the PATRIOTS were going to the SUPERBOWL! Yahoo!!!!

Day Three

2008-01-20T16:10:00.000-05:00

On our final day of the Children's Hospital WS clinic, we left home at 6:30 a.m. to get to the hospital for our 8 a.m. Physical Therapy appointment. For almost two hours, Brady played with toys, moved around, did pretty much all that was required of him while the PT gave me suggestions and noted his abilities and difficulties. She felt he did not need any DAFOs or AFOs or anything else ending in AFO for his feet/ankles yet. She thinks we should wait until he is cruising along the furniture to see how he does and if his feet turn in at all. I am inclined to agree, mostly because it is one less thing to worry about when he really isn't going to be walking next week, I'm sure.

The PT noted that his services he is receiving now through Early Intervention are excellent. She said after his eye surgery we may need to do some neck therapy, because he tilts his head to focus on things right now. Hopefully he won't be doing this after his eye surgery, but he may need some help there since he has been doing that for so long. She also agreed with the whole midline positioning that OT stated the day before, and to help him transition in and out of positions. He was pretty interested in her toys, so I am on a shopping hunt.

After PT we went to Neuropsychology Testing, which was pretty much all the same tests as Mervis... once again Brady mastered these feats although he was exhausted by the time we got to her. Remembering another WS mom's plight, as soon as I walked in to the psych office, I said, "Brady has been awake since 6:30 (it was 10:15) and we just did two hours of PT." I wanted to qualify any problems we might have. Well, that was a needless thing to say because he did great, even though he was tired he came alive and grabbed at the items like a pro. This doctor didn't give me too much info as we were sitting there, but there really isn't much to "help" me with anyway. I will be interested to see what her report says.

This ended our clinic. The seven doctors/therapists met on Friday afternoon to discuss Brady and his testing. I should get a comprehensive report from the geneticist within one-to-two weeks, plus a report from each separately. They all gave me their cards and said if I didn't get their reports within the next two weeks to call. This is perfect because Brady has his Early Intervention annual meeting February 23 and we will be able to include their findings within our report as well.

The experience was fabulous; the therapists and doctors were all extremely helpful and knowledgeable. I felt I could stay for hours asking every nook and cranny question if need be. Plus I got ANSWERS which was cool. I would go so far as to say I had a more fulfilling time at this clinic than with Mervis this past trip. To be fair, it could just be because Brady was more receptive, and Mervis' information was really only one part of what we accomplished at Children's -- we also did PT, feeding, etc. at the hospital. The thing is, they are all linked. Brady's PT is really important for him and hinges on his other neuropsych stuff. Thinking back, those two hours of PT probably helped his Neuropsych testing because it awakened his body and let him know "where he was in space" (I think I am going to be saying that a lot now!). I don't think he could have accomplished some of his goals without reawakening his body. It brings us back to his brushing we did when he was younger.

I will still go to Mervis next year, but I don't feel like if I don't go I will be lost without it now, knowing I have phone numbers and names of people who can help me here who are knowledgeable with WS.

This clinic was done at Children's Hospital in Boston. I believe many other hospitals around the country do WS clinics. I would definitely find out if one near you offers it. This information would be priceless for EI and IEPs, plus they seem to lean towards the "more is better" theory of therapy, so that would help with gaining services.

Day Two

2008-01-17T22:03:00.000-05:00

Day Two started a little earlier today, beginning with OT. Rayne was the OT and fabulous; she sat with me first and we went over Brady's history and his abilities. She then brought him in and did a series of tests similar to the ones Dr. Mervis did, although this time Brady did everything she asked of him. In Kentucky he seemed more disinterested and didn't pick up the block, for example when I know he can. After that, we went into a sensory room which was complete with gymnastics mats on the floor and a swing in the middle of the room. I took some notes from her, but Rayne, like all the other people Brady is seeing, will be sending me a full report including suggestions for us to work with him.

A few things she noted was how it seemed that Brady thinks his right and left sides are separate; he rarely crosses midline, which is probably why he doesn't clap. She is also recommending that he wear small "mickey" splints during the day to keep his thumb out; he currently alternates hands wearing a harder splint at night and it has really helped. He wears them because at rest he keeps his thumbs in his palm and the splints help stretch the thumb out.

A big thing we talked about was how Brady is a bit "lost" on where he is in space -- he has not fully grown with his vestibular sense (awareness of body balance and movement). It falls right in line with having such low muscle tone. That is why he might shake his head, why he enjoys deep pressure (we have always patted him on the back very hard), why he enjoys being upside down. She put him in the swing and swung him around high, twirly, fast -- he loved it! He got so excited and energized. Then she placed him on one of those big yoga-type balls and stretched him out so his body molded the ball. She pulled him back and forth. He was in heaven! It was so interesting to see how he enjoyed it and how "alive" he was after. So of course I plan on hitting Target to get one. Rayne said doing it everyday, and as much as possible, will really help him grow into his nervous system.

After OT we had a break for a few hours so we went to lunch. Thankfully, Brady took a nap, albeit only an hour but he still got some time in. After that we went to Behavioral Psychology. This psychologist handles all the WS patients and was very interesting. Although Brady doesn't have any behavior issues right now, we talked about what to do with him when they arise. For example, WS kids crave that personal connection. So if one day Brady bites his friend, I won't say "Look at me, Brady. There's no biting!" and then talk to him (like I do with Michael!). You are giving them exactly what they want when you are telling him to look at you and talk. This psychologist spoke of a WS patient of hers who loved being with his family all the time. It was set up that when he was misbehaving he had to go sit in the dining room, away from the family. It worked wonders because he did not get when he wanted -- attention from his family.

Another thing she said that was just in her opinion was in regards to anxiety. She said she has seen in just about all her cases that the hyperacusis and anxiety go hand in hand; it is neuorpsychological. If I remember correctly, I believe she said she hadn't seen a child with anxiety who didn't have some form of the hyperacusis. She stated that for those situations, medication is usually needed because it is not a behavior issue; it is simply the way you were programmed and need the help the medication gives.

After Behavior, we went to Speech and Language Therapy. Christina first spoke to us about feeding, and reiterated the fabulous Growth and Nutrition Clinic the hospital offers. It sounds like something that would be good for Brady, since he still has feeding issues -- will we ever get past pudding and yogurt?? Christina felt that Brady was on the cusp of moving ahead in terms of speech and gave us a lot of instruction on things to do with him. She also recommended more Speech from Early Intervention since right now our ST spends half the time on feeding too.

Speech was the last one of the day, so after waiting to get the car from valet, Grandma, Brady and I headed out and had dinner on the way home since we were in rush hour traffic. Brady and I rolled in at 8 p.m., where he promptly went to bed for the night. One more day to go!

Day One

2008-01-16T22:14:00.001-05:00

We had our first day at the Williams Syndrome clinic at Children's Hospital. It was a relatively easy day. First up was Audiology. We had been meaning to test Brady's hearing so I am so glad this was part of the clinic. We arrived early, went in early, and left early... plus Brady has no problem with his hearing. Yeah! Even with his little cold, he has been signed off on hearing exams in the future. The audiologist said we could just take part of the ones offered in clinics like this, but no need for any secondary testing.

Next up was his comprehensive medical exam by his geneticist. We had just seen her in September, so this also went fairly quick since she was pretty up-to-date with his info. I gave her a little summary about our Louisville trip, which she was interested to hear about. She immediately squashed Morris' theory about his brain developing abnormally-- "let's wait until we see the MRI", although we both acknowledged that obviously Brady's brain is somewhat abnormal since he has WS. In my opinion, I think she respected the advice and info we got from Morris and Mervis, but didn't want me to put their words in indelible ink.

Our geneticist said all the doctors from this clinic at Children's will be meeting Friday afternoon after all our consults are over to discuss Brady. She will send to me within a week or two a summary of each specialist and information we can use for IEPs, Early Intervention, etc. This is great because Brady's annual EI meeting is the end of February so it will come in time to put some of their suggestions to use.

So far, so good.... I'll let ya'll know how Day 2 goes!

2008-01-15T22:23:00.000-05:00

We're preparing over here for our next round of doctor visits - we go to Children's Hospital for the next three days of clinical testing at their WS clinic. Tomorrow is an easy day: audiology first then a comprehensive medical exam by his geneticist, whom I adore. I was glad we were doing audiology because we were trying to fit in a hearing test at some point because he hasn't had one since he was two months old. I don't suspect we will find any problems, but it's been on the list of things "To Do" since September.

Thursday is a full day: OT for two hours, a two hour break, then behavioral psychology for an hour, and finishing the day with speech and language therapy for two hours. Speech at the end of the day??? Yeah, that'll work. I know something has to go last and hopefully they have a method to their madness. Friday starts off with two hours of PT then an hour-and-a-half of neuropsychology testing (whatever that is). I am interested to see what kind of info we will be getting, especially since we just saw Dr. Mervis and Dr. Morris two weeks ago. On top of all this, Brady has a little cold that will hopefully not impede the outcome.

On a sidenote, who needs screenwriters when we have Reality TV?? "American Idol" started tonight and Michael got to stay up late and watch the first group of high-hopers parade in front of the camera showing off their wares. One of the singers who made it through to the next round was a young 20-year old girl who has a two-year-old daughter with Rett Syndrome. Not knowing anything about the syndrome, I Goodsearched (http://www.goodsearch.com/) it and read the description about the condition that almost exclusively happens to girls. It broke my heart. The mother said her daughter was growing normally, walking, "snatching cookies from me" and then suddenly, it was like she "went to sleep one night and woke up a different person." Rett Syndrome is described as "after 6 to 18 months of apparently normal development, girls with the classic form of Rett syndrome develop severe problems with language and communication, learning, coordination, and other brain functions."

Of all the things we have gone through over here, all the disappointments and heartbreak, I still cannot imagine having a child all of a sudden deteriorate before me. This mother was a young woman and I am amazed at her strength to tell her story, very sensitively, positively and strongly. She was not some attention-grabbing celebrity-wanna-be. I'm sure she touched many hearts.

My (local) friend Nancy has always been a Reality Goddess and I think she is rubbing off on me. While watching "American Idol" I taped "The Biggest Loser" - I'm not sure when I got into that show. And of course, "Big Brother" starts in February, normally a summer-only event when you could justify watching it because nothing else was on. Last week I also caught "How To Look Good Naked" on Lifetime -- a very endearing show in which the people change their hair, makeup and bra and instantly lost 10 pounds. One of my secret loves is "My Sweet Sixteen" on MTV where obnoxious rich girls and boys plan $100,000 Sweet 16 parties. I did try to watch "Celebrity Apprentice" last week, but was very sad that Trump fired Nadia Comaneci whom I adored growing up that I am not checking that out again. And this season, Michael and I were very excited to see Jen and Nate kicked off "The Amazing Race" last week and are preparing for its finale this Sunday. It's actually a very good show for Michael to watch - people race around the world and intertwine themselves into the cultures of each country. We are both learning a lot from it

And, no, Nance.... I am not watching "Little People, Big World"....YET. I have to stop somewhere.

Ho hum

2008-01-11T12:53:00.000-05:00

It's a dreary Friday here in the northeast - rain, rain and rain, plus thunder and lightening. This past week it was in the 50s and beautiful; a hint of spring to come. Oh well.

Our scheduled MRI for today has been postponed to January 22. Brady had a clear drippy nose this week, and while I thought it was nothing serious, I didn't need to drive to the hospital at 6:00 this morning, after displacing Michael somewhere else, to be told by the anesthesiologist they wouldn't put him under. Both the nurse I spoke to yesterday and I felt that was a strong possibility. It was the right decision, since I think he now definitely has a little cold brewing and Michael keeps blowing his own nose, too. We also cancelled Music Therapy for tomorrow for the same reasons, plus the other WS child coming over is going to see Dr. Mervis this week coming up and I certainly want him in top form.

So I am hibernating today and cleaning around the house, doing mounds more paperwork for the Children's Hospital in Boston clinic we are going to this week and more insurance papers... never ending. I dosed out some Tylenol to Brady and he is finally sleeping, hopefully for the next three hours. In fact, the rain is a welcome addition to the day, making it more reasonable that I've taken a shower but I'm wearing comfy pj bottoms and a sweatshirt. The only saving grace to a completely depressing day is going out with Ang tonight.

I keep reading lately from the other bloggy moms what a funk everyone is in right now. I feel it too. I love January because to me it was always a "clean sweep" type of month - clean out, throw away, start fresh. I am feeling a little overwhelmed right now. Not with the committees I am on, or even the new activities we are starting, like Michael's guitar lessons or Brady's music therapy. Just stuff at home. There's so much STUFF it is clouding up my aura! LOL I took a big trash bag to Michael's room today and am starting downstairs too. I used to love Flylady so I might need to venture that again (www.flylady.com).

Kentucky Trip Part 2

2008-01-07T23:42:00.000-05:00

Our trip down to see Dr. Mervis and Dr. Morris started off with a bang... a nice, soft, white, winter bang called snow. We started out on Tuesday, January 1 and drove right into rotten road conditions in Connecticut.... don't they plow in that state??? Because there was a threat of a huge snowstorm in New York, we ended up re-routing our trip and went through Pennsylvania and West Virginia to get to Kentucky, instead of our original route down through Ohio. We ended up only driving six or seven hours that first day, then did the final eight on Wednesday. ("We" meaning "Tom" as he did all the driving!)

Michael spent most of the time watching movies (Santa brought a portable DVD player... definitely a lifesaver during this trip since the road conditions weren't great... less stress) and Brady loved playing peek-a-boo, which you can see in the pics! Both kids did great, and I breathed a sigh of relief at that, since Tom and I do like to travel via car around the country. (Although I do believe Tom is all set with driving right now!)

On Thursday we headed in to the University and Brady did his assortment of cognitive testing, playing, etc. After we were done for the day, we went to the Louisville Slugger Museum for their factory tour... it was so cool! We saw all the Boston Red Sox official bats (Ahem... you know, the World Series Champs??) and Michael tried to hit a few 50 mile hour pitches. We also took in "Alvin and the Chipmunks" that night.

The next day Brady did two more tests and then we conferenced with Dr. Mervis and Dr. Morris. (It seemed to me that he did more testing back in June, but that may be because of his age.) When we sat with the doctors, there was also a developmental pediatrician there, as well as a geneticist. Dr. Mervis felt that his strongest advancement has been in his PT work, and that he has not made any new strides in OT and Speech since June. In fact, she felt that he did little more last June in fine motor skills than this time. I do see where he has not advanced very much in these two areas, although I do feel he is further along than last summer. It is questionable at this point whether Brady is having issues with his strength, his eyesight, or his understanding (neuro). Dr. Morris felt he was trying to pick up blocks by moving his whole shoulder, as opposed to just his arm or hand, which may indicate more muscle issue. That is all just plain PT work, nothing new. Dr. Morris also felt he was trying to focus in on the items to pick up, which would be issues with his strabismus,

which he is having surgery for on February 5.

In terms of his "understanding", he is having an MRI this Friday and Dr. Morris is interested in seeing the results of that, upon which she will contact me with another report. Dr. Morris feels we may see irregular brain growth patterns, more so that other WS children. She feels that Brady has "Unruly Hair Scalp" ... no I am not kidding! What this basically means, is that his a la natural Mohawk is due to the fact he has more than one "swirl" in his hair growth (we all have one at the top back part of our head). We get these swirls when our brain is forming and growing in utero. Brady having more than one means his brain did not form in the typical fashion everyone else's did. What does this mean? We won't know til after the MRI. It could show nothing, it could show abnormal brain growth consistent with other WS people, or it could be more than usual abnormal brain growth. It may explain why Brady is more delayed than other WS kids his age.

We also received directions on what to work on with Brady, i.e. using objects appropriately (comb, cup, etc.), rolling a ball, books, etc. (I did point out he obviously doesn't know how to use a comb because we never use one on him, LOL!). We also need to have our OT help us help him hold objects to the best of his ability with his radioulnar synostosis. Usually kids just adapt, so we have to help him figure it out for things he hasn't done yet, like the bottle and cup. He does it with a spoon, toothbrush and his pacifier.

We won't be back now to visit Dr. Mervis until next year - although I will move our next trip back a few more months to April-ish so we'll have warmer weather. I was glad we made the trip, although I think I got more information last June. I don't think I was too surprised at what they said, but it will be interesting to hear what they say at Children's Hospital next week when we go to THEIR WS clinic

Kentucky Trip Part 1

2008-01-07T21:51:00.000-05:00

Twenty-four hours home and it seems like it's been... twelve (considering I have not been able to get everything done on my "To Do" list, although most know how long my "To Do" lists usually are).

Let's start with the fun stuff - hanging out with Tatum, Emma, Lisa and Chris over the weekend was fabulous! I instantly felt at home with them, even though this was actually our first encounter "in person". They were wonderful and fun hosts and the kids had a blast... I know Michael loved all the extra attention Miss Emma laid on him, and Tom and Chris hit it off. I can't believe there is another guy out there like Tom! (I thought they DESTROYED the mold, LOL!)

We got in late Friday night and chatted til later... then on Saturday took a drive into downtown Frederick, Maryland and walked around. We were back in time to watch the Redskins lose (sorry, Chris!) and then Lisa and I went out to watch the Steelers lose! It was a sad day for those fans! Lisa and I hooked up with all her friends, who were really fun to hang out with. I even met a fellow Patriots fan, although I KNOW there are closet ones out there!

After brunch on Sunday we headed for home, promising to return soon. I know that will be an easy promise to keep... we'll do DC next time we're down there and maybe even get them up here to go to the Cape.

What was fun for me too was watching little Tater Tot move about the house, grin wickedly, eat EVERYTHING and play with all the toys around. She was so interested in watching people -- I think she and Tom had a staring contest -- and it was so cute how she would watch Brady tentatively play with a toy. I think Chris and Lisa will have their hands full with these two beauties of theirs. :)

Thanks, Lis for a FABULOUS time.... and although we may not DRIVE in January again, we will definitely be there soon :):):):)

2007-12-31T00:34:00.001-05:00

It's been a crazy week, as I am sure it has been for everyone. Christmas has come and gone so quickly, although the toys piled in my house are a testament to the fact that Christmas was here. Plus the fact we are getting no sleep, what with playing Guitar Hero III every night til 11:30... does that make us bad parents??

On top of Christmas, we celebrated Tom's 40th birthday with a birthday weekend filled with events (what a great wife he has!), plus we have also been trying to gather together our things for our drive to Kentucky to see Dr. Mervis. We leave on Jan. 1. THEN, a week and a half from getting back from Kentucky, we are going to the Children's Hospital in Boston's WS clinic over three days. Phew!

One great big light from all this chaoticness will be hanging out with Lisa on our way home from Kentucky. Yeah! We are so very excited.

Oh yeah.. Christmas? We had an excellent day and Michael loved all his gifts. Brady's favorite ( I think) was his fleece blanket I bought at Bass Pro Shop... he kept pulling it up over his face to play peek-a-boo. :) And a little present for Tom was Brady's first real sucking from a straw. Of course it was Pepsi and now I think he is addicted... he definitely has a little sugar issue, methinks.

Patriots are 16-0!!!

2007-12-31T00:25:00.000-05:00

In case you are living under a rock, the New England Patriots are now 16-0 ~ Woohoo!!! Michelle - I know you are celebrating with me out in the Southwest!

Merry Christmas!

2007-12-23T18:52:00.001-05:00

Amidst the malls, Playstations and wrapping paper... let's not forget what Christmas is all about. Thank you to all my blogging buddies who have helped me, cried with me and laughed with me. Merry Christmas and Happy New Year!

2007-12-22T16:54:00.000-05:00

The bloodwork is back and for the most part, everything is relatively normal. Calcium is back to 10.2, from 10.6 two weeks ago (I stopped giving him yogurt every day - every other day is fine, apparently). The only thing that is puzzling to his doctor, is that his magnesium and phosphorus levels are elevated. His doc found this a little weird and asked me to check with the nutritionist if there are certain foods he should avoid. I reminded her that we just started vitamin drops since we are off the Enfamil now, and she said that might be a reason for the elevations. So we stopped the vitamins until I talk to the nutritionist and his next round of bloodwork in a month.

Anyone else have these weird elevations?

2007-12-20T20:33:00.000-05:00

Just a quick update on the Braidster: We FINALLY got his bloodwork done this afternoon. Still not easy - the phlebotomist fished in one arm before moving to the next arm to check those veins. She didn't prick that arm, instead moving to his hand and got what she needed that way. Phew! That's over (for now...). We should hear something tomorrow.

The ophthalmologist appointment went as expected: he is the perfect candidate for surgery. His strabismus has actually gotten better, his muscles are stronger now, but still not where they should be. His vision is completely fine, ironically. So we are on the books for a February 5th, one-and-one-half hour surgery. How bizarre it is done so quick and we're all set.

2007-12-20T06:54:00.000-05:00

Deep in the holiday rush of shopping, decorating, and caroling -- not to mention planning our January trips to Kentucky for Dr. Mervis and Children's Hospital Boston two weeks later for THEIR clinic -- we had to re-do Brady's bloodwork. Brady had his blood drawn about two weeks ago in one gigantic crying fit, screaming so bad he got the pitiki (sp?) rash on his arms. Normally, Brady is not a screamer; he does a huge cry when he gets injected then chills out. He started crying when he was being held down to get a vein and then it escalated. Well, his bloodwork came back completely abnormal, some tests not making sense because one part was fine, another was off, etc. After his pediatrician spoke to Brady's nutritionist, cardiologist, neurologist and geneticist, she decided on Tuesday to have Brady re-do the bloodwork and then we would go from there. Easier said then done.

After his pedi stated to re-do the bloodwork, Children's added a few tests to it and asked for Brady to fast beforehand. So, yesterday, we arrived at the pediatric lab close to home at 8 a.m. for his bloodwork, before his first bottle. He came in his pajamas and was pretty content. Of course, he did not stay that way. The phlebotomist handling the injections has done Brady before lickety-quick, so I wasn't too concerned about her abilities. She got a nurse in the other lab to help, as this little strong guy always needs two people to withdraw blood, mother not included. She was able to find a vein, but since he hadn't drank anything, his veins were even smaller than normal, which is hard enough as it is. She fished in both arms before she stopped, poor Brady screaming, of course. I stopped her from fishing after 30 seconds, as I know how that feels -- not too nice! I didn't want him to get a huge bruise, knowing we would probably have to repeat the process to get the bloodwork, and it wasn't helping anyway.

So today we try again. The good news is that I can give him his bottle, and just before he needs the next one is when I will do the bloodwork. The pedi office said that if we can't get the bloodwork with him fasting, oh well! We'll do it anyway. I'm not sure why Children's needs him to fast - I don't think we are testing Brady's cholesterol! LOL. We have his opthamologist appointment this morning, where I'm pretty sure she will try to schedule surgery for Brady's strabismus. I am definitely not doing THAT until February, at least. I don't think I can add one more thing in January.

It's so... ANNOYING when you are just going about your business, living life and then BAM! something bites you and the fact that your child needs this special attention is plain in your face. It's things like the screaming child doing bloodwork (I hope that's not how it is going to be from now on! He is two now so maybe he is figuring out what is going to happen at the lab.) that makes me shake my head and curse WS for putting my child through this. But I also had to go to two stores to find candy canes to bring to the Cub Scout Pack Meeting that did not have a peanut allergen warning for my older son.

It's all in that lovely game called MOTHERHOOD, much like Monopoly. Wanna play??? Instead of drawing the card that says "Go to Jail, Go Directly to Jail", you get sent to Motherhood Guilt Factory when your child tells you "You're mean!" Instead of landing on a hotel and paying the next player, you get to pay doctor bills. Instead of landing on a utility company and paying four times your die, you get to change four diapers in an hour because of diarrhea. Instead of collecting $200 for passing Go... you get hugs and kisses and "I love yous". All right... I'll play! :)

2007-12-13T14:01:00.000-05:00

My son Michael was born in 1998, not too long after the McCaughey septuplets were born. I have been reading about these kids over the years, watching them grow up. Last night, I saw their latest update on Dateline, about the kids in their tenth year. (This was aired last year, but I must have missed it.) This time, though, I was watching for a different reason: I was curious to see more about the two septuplets who had the more serious health problems, Nathan and Alexis.

Both Nathan and Alexis have cerebral palsy with other health and neurological problems. It broke my heart to see how much they have worked to get to where they are. They both struggled to be able to walk. They have had countless doctors' appointments, medical issues, and learning disabilities. I suppose in the back of my head I am thinking about Brady and all he will have to endure as well, and what he is enduring right now.

But then Ann Curry asked the question, "Knowing now where Alexis is, do you feel any regret about your decision to carry all seven babies?" The McCaugheys knew there was an increased risk of cerebral palsy by carrying so many babies to term instead of selectively reducing the number of fetuses.

The mother, Bobbi, answered. "How could I? Look at Alexis. There's not a person in this world who loves being alive more than she does. How could I feel sorry that I had all of my children?"

It's amazing how a different perspective can change the entire meaning of a life. Nathan has worked very hard, enduring two major surgeries, to walk. His father said that Nathan was "determined to conquer this physical impediment. That's what his legacy might be."

So what if it is easy for me to walk? It may be hard for Brady, but it may be easier for him to be happier in life than for me. It seems that way for little Alexis McCaughey. She is fiercely loved by her siblings... the brothers who run quick and play football and the sister who has been inspired by her to become a doctor. And Nathan has struggled, but he has also inspired others around him to be stronger, to strive for more than what was given.

I know all our children are inspirations. It may sound kooky, but I was definitely inspired by these little children, who have endured so much. I say "so much" , but they may look at me and think that the things that I have endured are "so much" when to me it is just my life. Perspective. Hmmm.....

Pats are 13-0!

2007-12-10T21:23:00.000-05:00

Did everyone watch the game on Sunday? And by "the game" I mean the New England Patriots beating the Pittsburgh Steelers! Folks - that makes the Pats 13-0!! So here's a little joke to celebrate:

Three quarterbacks, Peyton Manning, Tony Romo and Tom Brady, go to heaven to visit God and watch the Celtics play a game. God decides who will sit next to him by asking the boys a question...

God asks Peyton Manning first: "What do you believe?" Peyton thinks long and hard, looks God in the eye, and says, "I believe in hard work, and in staying true to family and friends. I believe in giving. I was lucky, but I always tried to do right by my fans." God can't help but see the essential goodness of Manning, and offers him a seat to his left.

Then God turns to Tony Romo and says, "What do you believe?" Tony says,"I believe passion, discipline, courage and honor are the fundamentals of life. I, too, have been lucky, but win or lose, I've always tried to be a true sportsman, both on and off the playing fields." God is greatly moved by Tony's sincere eloquence, and he offers him a seat to his right.

Finally, God turns to Tom Brady: "And you, Tom, what do you believe?" Tom replies, "I believe you're in my seat."

Just trying to take a picture....

2007-12-09T22:32:00.000-05:00

2007-12-06T23:44:00.000-05:00

It's been a whirlwind week over here - Brady has moved to new levels!

Mr. Brady attempted to crawl by himself today! :):) It was just once, but he did it without prodding and without help. I know he still has mucho work, but just seeing that he is attempting and getting it is such a happy time.

Yesterday, Vikki, his ST, was working with him on sounds. She was doing the "sss" and saying "sun"... he dropped his chin, stared at her, then said "sun" in the total deep, gruff voice like the little boy in "The Shining" when he was saying "red rum" (http://www.houseofhorrors.com/redrum.wav). We almost fell over. I asked her, was he saying "sun" like he was saying Vikki had a "sunny" personality? She thought he could be saying "son" like he is the son. My mother thinks he might have been in the middle of calling us a name -- "son of a &%$#". We know he was mimicking, but that is big over here too. Any of it works for me!

2007-12-02T22:01:00.000-05:00

We must be willing to get rid of the life we've planned, so as to have the life that is waiting for us.
~ Joseph Campbell

It has been hard for me to realize that I will not have three children, two being sisters; I will not be that perfect mother always having dinner on the table at 6 p.m. sharp; I will not never yell at my children or never let them watch TV so I can get a few things done; I will not be the mother who has never been to Children's Hospital; I will not be the mother who can take a backseat to a child's education career and let them "figure it out as they go along".

I will be the mother who fights for what is right for her children; I will continue to be amazed at what a great brother Michael is to Brady, maybe because they are seven years apart; I will be the mother who is most knowledgeable about her son's medical condition because I have to be; I will be the mother who will be a support and friend to those who need it.

I will be the mother who has learned that the lives we were planning on having may not be the ones that are planned for us. It is hard to remember... but now that I am finally enlightened with this knowledge, I will be a better mother, wife, friend, sister, daughter, person.

2007-11-27T23:11:00.001-05:00

When Michael was a little under a year old he fell down the stairs to the basement. I managed to catch him midway, luckily, before he hit the cement floor below. He cried as I held him and called the doctor, then stopped crying and was fine. The nurse on call asked me questions about his reaction, his pupils, how he seemed. She deduced he would be okay and told me what to look out for over the next few hours. As usual, Michael was playing happily quickly thereafter and I never worried during his nap time. Almost 10 years later, and as memories fade from my mind, I will never forget that feeling of watching him fall down the stairs... the way time slowly froze frame by frame as his body bounced down the stairs. The feeling of helplessness and the wave of grief thinking he could die if he hit his head just so or cracked his neck. Almost 10 years later, and I can instantly recall that pit in my stomach.

Today I had it again. I was holding Brady, walking into the school for swimming with OT, when I stepped off the curb and fell. In the nanoseconds of going down, I was mindful of holding this little cherub in my left arm. I instantly tightened my grip and slowly watched the back of his head hit the pavement. It happened in such slow motion, I can't believe I couldn't stop it. He instantly started to cry, which relieved me immensely because this child never seems to cry when he should be hurt, I think. I was still on the ground trying to pick him up and waving to the grounds crew cleaning the leaves. One of the men waves back - and not until a few minutes later realize that I need help. One of the crew comes over and offers to bring me to the first aid station, but I pick Brady up and run inside to where the OT and lifeguard are. Tara, his OT, is looking at me, wondering what is wrong and jumps out of the pool. I am hysterical, although I was the only one - Brady is not crying anymore and is looking around, his face searching for the reason why he is not in the pool yet. Tara takes him and I start to calm down, and realize I am in pain. They send for a nurse, who examines Brady and says he looks fine - he got a couple prickly red spots and was starting to get a bump on the back of his head, but that was it. Of course, she checks my elbow and thinks I may need stitches, but after she. cleans it she states I could probably get away with not getting them. As the day goes on, I realize that my leg is scraped up pretty bad, my right hand has serious road burn on it, and my left elbow is allowing me no strength whatsoever - I am not even able to carry Brady to the car.

I called the pediatrician and told them I was coming right over since I was only a few minutes away. Of course, now Brady is getting cranky because not only did he not get to go swimming (which he loves) but now he is getting tired. Luckily, the doctor thought he was fine, told me what to look out for, and sent us on our way. Brady is fine. I, of course, am a mess. Physically my arm is killing me, and mentally I am exhausted over my petrified moment. Just like with Michael, all I could think of was Brady jumbling his brain. Someone my husband knows is in a coma right now after being punched in a fight and hitting the ground, so of course this is all I could think about.

Strangely enough, I have been concerned for awhile now that I would fall holding Brady. A premonition or have I been preoccupied with the thought that I caused it? Very strange. All I know is that once again, that pit in my stomach is there. That feeling of helplessness and despair, so overpowering that nothing can erase its memory. Yes, the angel sleeps now peacefully, as I go and watch him for a few minutes ....

Ho Ho Ho

2007-11-26T22:37:00.000-05:00

Tis the season to be jolly...although jolly isn't quite the word I would use to describe Brady here - he was a little perplexed as to what this thing was on his nose. Five seconds later it was off, so you are quite lucky to be seeing this picture at all.

We are in Christmas season mode over here -we put the tree up over the weekend and are slowly unloading our holiday decorations all over the house. The Christmas shopping is getting done, our cookie-making day is set, and I am thisclose to ordering my Christmas cards. We have been going on warped speed over here - between Cub Scout activities, therapy appointments and whatnot, the calendar is filled to the brim. I am making it a priority to downgrade a bit and have some just chillin' out time.

One of our nights consisted of going to my (gasp) 20-year high school reunion. I had hooked up with some girlfriends I hadn't seen in awhile the week before, so I was lukewarm about attending. Glad I ignored myself - it was a blast! We all kept saying, "Wow! You haven't changed at all!" and of course, dear husband later on pointed out that we really were pretty old :). It was interesting to say the least, and as the night went on, you can see the little cliques begin to form again. I suddenly felt like I was back in that big school again. I still had no patience for some of the obnoxious boys and the fake smiles of the plastic girls. My girlfriends and I went around and talked to everyone, and I was able to hook up again with a few old friends again, so that was great. It's amazing how no matter what time has passed and how different your life becomes... some things just don't change. I looked around the room at these people, most who knew me from when we moved here when I was 11.

This weekend we met up with Coleman and his family. Coleman just turned a year and has WS. He has had numerous health issues over the past year, but he is such a little ham and was all over the place on Sunday. He is crawling and pulling himself up on the furniture, and giving us big smiles at every turn. It was so cute - at one point he did a scrunched-up smiley face and started waving his hands around and one minute later Brady did the same thing sitting right next to him. It is always comforting to see the similarities with these kids; how the parents know what you are going through. We will hopefully gather together often, as they are only half an hour away.

All right - I am posting this because I have been trying to add to it all day and I have not gotten any further. Tomorrow I will tell y'all one HECK of a story....