Thursday, August 31, 2006

Weight update...

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

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

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

Monday, August 28, 2006

Get a grip!

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

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

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

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

Friday, August 25, 2006

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

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

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

Tuesday, August 22, 2006

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

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

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

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

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

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

Monday, August 21, 2006

Ahem, and how old is your baby?

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

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

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

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

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

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

Wednesday, August 16, 2006

Happy New Year!

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

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

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

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

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

Friday, August 11, 2006

Another day in the life of Brady Joseph

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

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

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

God Makes No Mistakes

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

- Welcome to Wherever You Are
by Bon Jovi

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

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

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

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

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

Wednesday, August 09, 2006

And what did YOU do today?

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

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

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

Thursday, August 03, 2006

Just a Quick Note...

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

Wednesday, August 02, 2006

Oohh... a Camping we will go!

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

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

In other news....

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

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