Tuesday, October 31, 2006

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

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

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

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

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

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

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

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

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

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

Thursday, October 26, 2006

Scary lions!

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

Thursday, October 19, 2006

You'll be in my heart..

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

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

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

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

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

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

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

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

Cardiologist Appointment Update

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

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

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

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

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

Friday, October 13, 2006

Happy Birthday Brady!!!!

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

Wednesday, October 11, 2006

Almost a year...

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

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

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

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

Tuesday, October 03, 2006


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

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

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

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

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

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

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

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

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