Monday, December 31, 2007

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!!!

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!

Sunday, December 23, 2007

Merry Christmas!

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!

Saturday, December 22, 2007

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?

Thursday, December 20, 2007

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.
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! :)

Thursday, December 13, 2007

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.....

Monday, December 10, 2007

Pats are 13-0!

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."

Thursday, December 06, 2007

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!

Sunday, December 02, 2007

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.

Tuesday, November 27, 2007

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 ....

Monday, November 26, 2007

Ho Ho Ho



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....

Sunday, November 11, 2007

Howdy!

YAAAAWWWNNNNN... oh!... here I am!

That was a nice week nap of blogging I took! When you do the 100-mile dash of everyday posting for 31 days, sometimes you just need a little snooze alarm. Not that there was anything y'all were missing... it's been pretty quiet over on this front. We did Brady's two-year-old pictures, which came out adorable. I did notice that there was NO difference in his one-year-old and two-year-old pictures -- except his hair was longer. The rest of his face looked exactly the same, chubby cheeks and all.

Last Thursday we got a call from Children's Hospital asking us if we would like to move up our January appointment in Neurology to Friday. This was a first time visit recommended to us by Brady's geneticist. She felt because of his delays he should see someone there to rule out anything other than Williams. Plus, both the geneticist and Dr. Mervis in Kentucky felt he was still exhibiting some baby behavior that he should have outgrown by now, not typical of WS.

So, we trekked in, was seen 20 minutes late by a resident who examined Brady then reported his findings to his "supervisor". The resident was clueless about WS, admittedly so, which immediately made me feel concerned. I do appreciate his willingness to admit he knew nothing about WS, but how can he properly examine this child when he doesn't realize what is "typical" for WS and what isn't? He did spend a lot of time with him, and a lot of time discussing with his boss, then they both came in and clarified a few more things. I felt a bit better at that point.

They determined that his delays seemed typical of WS. One thing that he still has not outgrown from his baby stage is his flapping of the arms when he gets excited. He used to do it a lot more, for a lot of reasons, but it has definitely decreased. The doctor felt that since he is only two, his behavior has not regressed, and he seems to be "growing out" of the stage, they are not concerned. If he was four and doing that, it would be a different story. They did order a blood test to check his thyroid, since it hasn't been checked before, and an MRI to check for anything they are missing. Basically, all good news; not jumping for joy over the docs, but I know it could be worse :)

On another good note, I ran out of Enfamil last week, so I've been giving Brady half Calicilo, half whole milk for his bottle, on top of yogurt and ice cream. We had his calcium level checked and it has not gone up! He is at 10.3, normal is 8.5 to 10.5. Yeah! I am going to keep his bottle like this until we see the nutritionist in the beginning of December, then I will probably stop the Calicilo. It is covered under insurance, so it doesn't really matter. I am really trying to get him moving on the food ~ taking it, chewing it - ANYTHING! Michael gets nervous when he sees Brady gagging when there is food in the middle of his tongue - -we're all yelling, "Just move it, Brady! You can do it!" His little cheerleader section :)

Thursday, November 08, 2007

Wednesday, October 31, 2007

Happy Halloween!!! The punk rocker and scary monster had a great time trick-or-treating!




Tuesday, October 30, 2007

Joy

Here I am, the day before my last entry in the "31 for 21" challenge. The challenge was to blog every day for the month of October, which was Down Syndrome Awareness month. It has been hard - even though I talk a lot, finding something newsworthy and/or interesting every day to blog about was difficult. I found that there were days I was a lot more negative than I usually am regarding Williams Syndrome. Was I just trying to find a topic? I actually think that was the case. I definitely have my days where the world is bleak, but they pass, and I move on. This month I captured them and kept them alive. Didn't mean I didn't have them, but I think I widen the spotlight, sustained it.


Here's the truth... and I will swear to it: Brady brings me joy. His every obstacle and hurdle that he leaps over, his scrunched up face that breaks into a smile that I waited for for 14 months, every happy dance I do when he eats the whole container of yogurt... simple and serious, he brings me joy. Does it break my heart he struggles to learn to sit up? Yes. But then he accomplishes that task and my heart bursts with joy. Does it break my heart when I feel we're left out of children's activities because he hasn't developed? Yes. But then today we spent the afternoon with Clare, 2 w/WS, and we make plans to visit Tatum in January :):), and we don't feel alone. Especially when we gets hugs from Clare, and Jamie to boot! Does my stomach tighten when we need to go to the cardiologist, the geneticist, the xxx-ist? Yes. But then I remember we live in 2007, with revolutionary treatments, medicines and therapies.


There's a cloud. There's a silver lining. The trick is to remember that all clouds have them.

Monday, October 29, 2007

Ok -Teresa started it, Kati followed suit, so now I will join the herd. A little info about me, author of the blog.

1. What time did you get up this morning? 5:45 a.m.
2. Diamonds or pearls? Hmmm... not a jewelry person, but diamonds are my birthstone!
3. What was the last film you saw at the cinema? Michael Clayton... very good! George Clooney is delicious!
4.. What is your favorite TV show? House, The Office, Criminal Minds (...and How I Met Your Mother)
5. What do you usually have for breakfast? Been on a cereal kick lately - today, Corn Pops!
6. What kind of soap do you use? Dial
7. What is your middle name? Grace
8. What food do you dislike? Olives & Guacamole
9. What is your favorite food? Bread ~ Which is why I joined Weight Watchers!
10. What kind of car do you drive? Toyota Camry
11. Favorite sandwich? BLT or anything from Panera
12. What characteristic do you despise? Selfishness
13. Favorite item of clothing? Pajamas - comfy clothes!
14. If you could go anywhere in the world on vacation, where would you go? Without kids - a beach, like in Aruba. With kids- Grand Canyon
15. What color is your bathroom? Mint green and white
16. Favorite brand of clothing? Old Navy/Gap... and one day, Express
17. Where would you retire to? where my family is, wherever that may be
18. What was your most recent memorable birthday? Nothing too exciting since I turned 30 and my husband threw a party for me
19. When is your birthday? April 17
20. What is your favorite scent? White Shoulders
21. Are you a morning person or a night person? Night person
22. What is your shoe size? 9.5
23. Pets? Our cat died last February... we may be getting a new pet soon....
24. Any new and exciting news you'd like to share with us? Brady is on the verge of something BIG, but I'm not sure yet what that is
25. What did you want to be when you were little? writer
26. How are you today? Inspired! Organized all my clothes :)
27. What is your favorite candy? I'd take a Hershey's bar with Almonds
28. What is your favorite flower? Tulips and Carnations, not necessarily together
29. What is a day on the calendar you are looking forward to? November 9 - Ange and I are going out for a night on the town! LOL
30. What church do you attend? Saint Theresa's
31. What are you listening to right now? TV is on upstairs and I am sure Tom is sleeping in front of it
32. What was the last thing you ate? Pork chop and applesauce (ain't that swell!)
33. Do you wish on stars? no
34. If you were a Crayola crayon, what color would you be? blue
35. How is the weather right now? Cold- turned on the heat!
36. Last person you spoke to on the phone? The other Kerry
37. What is your favorite soft drink? Pepsi!!!!!
38. Favorite restaurant? We're so lame.... Chelo's, a family restaurant
39. Hair Color? Brunette or Auburn, depending on my mood :)
40. Siblings? one brother, one sister
41. Favorite day of the year? Christmas
42. What was your favorite toy as a child? Barbies
43. Summer or winter? winter
44. Hugs or kisses? Hugs
45. Chocolate or Vanilla? Chocolate
46. When was the last time you cried? A few minutes ago reading some WS mommy blogs!
47. What is under your bed? Dust bunnies and my aunt's old suitcase
48. What friend have you had the longest? Michelle - from 6th grade!!
49. What did you do last night? Watched the Red Sox WIN the World Series!!!
50. Favorite room in your house? family room
51. What are you afraid of? my children being hurt or death of my parents
52. Popcorn salted? buttered? Yes!
53. Favorite sport to watch? football and baseball
54. Favorite sport or activity to participate in? softball or volleyball

Sunday, October 28, 2007

We are the CHAMPIONS!!!!
Way to go Red Sox!!!!!

Saturday, October 27, 2007

World Series, Game 3

Here we are again... it's the bottom of the sixth inning and Sox are beating the Rockies 6-0! Can you believe it - Dice-K hit a double!! There must be a lot of praying going on out there!

11 p.m. and the night is still young...

Friday, October 26, 2007

I have "met" so many people online whose children have Williams Syndrome. Some Brady's age, some older. Even though all the kids are different, I can get some kind of idea what is ahead of me. They all have differing challenges, but the core is pretty similar. I also remember when Brady was first diagnosed, I was told if Brady were to have a syndrome, Williams was the one to have -- I think in terms of future problems physically and mentally, plus the "happy" gene that follows so many of the WS kids.

I see Brady is delayed. I see Brady is a little peanut. I see Brady slowly getting to the crawling, walking, running stages in his life. I don't see a child who will not do what all the other children are doing. Will Brady be able to play baseball as good as his brother? Probably not, but that could have been like that anyway... nothing to do with Williams.

Today we had a sales rep from an equipment company join Brady's PT appointment, along with another PT who specializes in equipment. The equipment were items that would help Brady in his quest to walk and to aid with his low muscle tone. Things like specialized strollers, with removeable seats for a highchair or car seat; walkers; bath tubs in help him sit upright. Even though Brady has been making great strides, he is still working on everything. He sits great, sometimes he still squirms to lay down. Some items - like a walker - would be an aid for a few months or so; a stroller he could use up to age five if his energy is low. It would all be covered under insurance.
The other PT was nice and helpful; the equipment man was nice and helpful. Heck, here is an adorable picture of Brady and Lisa using the walker -- upon which he immediately started moving while he was in it:

Then they brought the stroller out - a stroller similar to the hundreds I've seen at Children's Hospital with severely disabled children in them. I immediately froze a bit, not that anyone noticed because they were too busy talking about all the great benefits. I understand why they brought it, I understand if he has trunk support while sitting at a table he can concentrate on doing OT type stuff without concentrating on sitting. I understand. And Brady's PT Lisa said how it would be great to use now while he's trying to reach his goals, that he wouldn't need to use them for a long time because he would reach his goals.
But I don't see my son in equipment like that. In a specialized bathtub. And not that he needs it, but the catalog was filled with other equipment that was for more severely disabled children. But the catalog is here in MY house, sent to help MY son. How ironic, just when he has come along so far, I see something like this and it hunkers me down to earth. I know once I get past the moment, I will be fine and realistic about his needs. But it was NOT the way to start my morning.

Thursday, October 25, 2007
















On the left is Brady coming home from the hospital - on the right is his two-year birthday. Whenever I think about how far behind he is, or how he's not doing what even a lot of other WS kids are doing at his age, I remind myself how far he has come, how much he has accomplished since even this past summer. I need to give him a break, before I break my own skull banging my head against the wall. Hey, I am always a little late myself, so what's the big deal if he is? LOL

I just declared it Relax-About-It Thursday today, so this is what I am chillin' out about!
GO SOX!!!!!!

Wednesday, October 24, 2007

World Series, Game 1

It's 11:08 p.m., the top of the fifth... 13-1, Red Sox. Can I go to sleep? I'm not sure. Who cares about the West Coast - can't they start the games at a more reasonable hour???? Only half-joking about not caring about the West Coast, LOL....

Tuesday, October 23, 2007

How do you measure the seasons of your life?

I have become obsessed with the song "Seasons of Love" from Rent. It started out very innocent - I watched most of the movie on HBO one night. That opening, signature song though stuck with me and I have been playing it on YouTube to get the words straight in my head. (Plus I looked up the lyrics so I could follow along - I told you I'm obsessed!) I even have Michael asking about it ("Is that really how many minutes are in a year??").

We all have our own ways of measuring our life. Mine is pretty simple. Three subsets of when I was child, all based on the three different states I lived in. Then it was college, then miscellaneous four years of career-mindedness until marriage, then my current season - motherhood. I think I will be here awhile.

Even as a mother, though, I have my subsets -- having Michael, raising Michael in toddlerhood, getting pregnant, Brady... WHAM. Even though Brady is only two, his life is much more measured. There's the first stage -- being born, finding out he had heart problems, and waiting for a diagnosis. Second stage - getting the diagnosis and beginning his therapies and doctor appointments. Third stage - endless crusade of babyhood and trying to figure out his needs and what was best for him while he just laid around, and waiting for him to smile. I think we're in the Fourth stage - watching him advance and helping him grow. One day, I am sure, this will all be lumped into one season for Brady -- before he walked, after he spoke, etc.

With Michael, it's different. His seasons for me are babyhood, preschool, elementary school.... next year it will be middle school (yuck). Obviously as he gets older the seasons cover more ground... but his baby days were not like Brady's obviously. Brady's milestones are much more defined, most likely because Brady has to work so much harder to get them. Michael was such a happy baby and is such a happy kid - it has been all fun and games with him and such a joy. With Brady, there are so many frustrations and concerns... but when he does hit some certain milestone, it is rainbows and butterflies.

I suppose I have gone through my own seasons... my own growth of learning about Williams and living with the reality that this will always be a part of our lives. We are always going through that next season. And the way I measure the year seems to be based on Brady - "Well, it was after his hernia surgery but before his diagnosis", "It was when he used to sleep all morning".
I know next year when he turns three and enters preschool, we will start a new season. Everything may be old hat by then, and all lumped together.

But right now I am looking forward to entering the season of crawling and playing and eating REAL food... I know it is just around the corner.

Monday, October 22, 2007

There was definitely a theme over here this past weekend. My horoscope said to "Go through and get rid of things" (I paraphrase); at church, Father Dennis spoke about how we need not need possessions to fulfill and enrich our lives (another paraphrase); and Brady has finally grown too big for some of his clothes in his closet -- which means I need to go through his stuff.

I have been on a decluttering kick for quite some time -- I am loving Clean House (on Style Network) and have found some cool websites too beyond Flylady (www.flylady.com). I really enjoy I'm an Organizing Junkie at http://orgjunkie.blogspot.com/.

I have lost 10 pounds so far, so I am slowly tossing my clothes out that should have been tossed but couldn't or I'd have nothing to wear. Michael is also growing taller, so I am beginning to pack up his outgrown clothes. And Brady.... he is getting taller but not wider, so we have a few problems! The 3-6 month pants fit his waist, but are huge floods on him. Even his work boots he wears can't hide that much airspace. So I am resorting to overalls right now while I look for more pants with inner drawstrings so they won't fall down when he stands up (this happens all the time - I will try to post a picture tomorrow!) The other problem I am having is that while I have TONS of hand-me-down clothes from Michael, plus a couple of other friends, Brady doesn't do well with a lot of them. Since they have already been worn and stretched, I'm finding the size 12 shirts are HUGE on him and the pants would never fit. He does well with the new skin-tight pajamas, for example, because they fit snugly and are not stretched out yet. Hmmm.. a whole new reason to go shopping!

I have also packed up some preschool toys of Michael's that I know I will not pull out for Brady - they have some shrilly noises that may not bug him so much as bug me. While he isn't super sensitive to noise, he will still get a little punchy if it's too shrill. So out they go. I also tossed a few toys that have seen better days and I know Brady will probably get some newer versions. I have also let go of a few household items I put in a box a few months back that I haven't missed. Ahhh... such a relief!!

One of my favorite little tidbits is from Flylady -- get up right now, grab a trash bag and throw away 27 items. You may not think you can find 27 items to toss, but you really can. Even if you just cleaned five minutes ago - suddenly nothing is off limits. Try it!

Sunday, October 21, 2007

Thank you to Kayla's mom Michelle (http://mdbeau.blogspot.com/) who gave me the blogger award. I would like to pass it along to Avery's mom, Amy (http://www.kleinertgrrrls.blogspot.com/). I learn something every time I read her blog,
or I am cracking up at her wit and sense of humor. Either way, it is definitely a treat to read.

Saturday, October 20, 2007

Standing Outside the Fire

Thanks for finding this, Noel!

WS stars

Laura, Michaela's mom and the New England rep for WSA, was invited to speak at Boston University about Williams Syndrome. This is the video slide show she played. The other WS mommies will have already seen it on Michaela's site, but I did want to share it with Brady's friends and family. You'll see a familiar face or two... and all the other lovebugs we cherish :)

Friday, October 19, 2007

Funny, I can't seem to look at anyone now without wondering what they looked like as a child. This includes the mugshots on the news, including murderers and thieves. The TV station flashes a picture of the accused and I look at him and picture a seven-year-old asking his mother to tuck him in. It's bizarre.

Thursday, October 18, 2007

The '80s

In honor of my (gulp) 20th high school reunion coming up, let's walk down memory lane:

You Know You Grew Up in the 80's If...
You've ever ended a sentence with the word "psyche."
You yearned to be a member of the Babysitters Club and tried to start a club of your own.
You owned those lil' Strawberry Shortcake pals scented dolls.
You know that "woah" comes from Joey on "Blossom."
Two words: Hammer Pants.
You had plastic streamers on your handle bars... and "spokey-dokes" or playing cards on your spokes for that incredible sound effect.
When it was actually worth getting up early on a Saturday to watch cartoons.
You wore a ponytail on the side of your head.
You made your mom buy one of those clips that would hold your shirt in a knot on the side.
You played the game "M*A*S*H." (Mansion, Apartment, Shack, House)
You wore stonewashed Jordache jean jackets and were proud of it.
You know the profound meaning of "Wax on, wax off."
You wanted to be a Goonie.
You ever wore fluorescent clothing. (some of us... head-to-toe)
You can remember what Michael Jackson looked like before his nose fell off and his cheeks shifted.
You have ever pondered why Smurfette was the only female smurf.
You thought your childhood friends would never leave because you exchanged handmade friendship bracelets.
After you saw Pee-Wee's Big Adventure you kept saying, "I know you are, but what am I?"
You remember "I've fallen and I can't get up"
You remember going to the skating rink before there were inline skates.
You ever got seriously injured on a Slip and Slide.
You remember boom boxes. and walking around with one on your shoulder like you were all that.
You still sing "We are the World"

Wednesday, October 17, 2007


Brady saw the flash of the camera and smiled for the picture!! This is his Halloween costume - we had a Cub Scout party tonight and he was thisclose to winning a write-in on "Cutest". He looked a bit like Boo from Monster's Inc.


And here he is with his PT and Service Coordinator Lisa.



And this is what he did for most of the Scout party.... sleep!

Tuesday, October 16, 2007

Medical Incredible

Erik's mom Nancy posted this video - thanks for finding it~

Having problems linking it, so until I figure it out, here's the shortcut:

http://vids.myspace.com/index.cfm?fuseaction=vids.individual&videoid=1407872

Monday, October 15, 2007

My Brady had his two-year-old visit today -- a whopping 17 lbs 2 ounces (up 6-1/2 ounces from a month ago, so his pedi was very happy) and 28-1/2 inches long. He IS on the WS chart, the lowest possible bar, but then again Michael ain't that tall either. I was happy to tell his pedi that his therapists are very pleased with his successes - they feel something BIG is going to come before the end of the year.... da da dum!

On a sidenote, I have to say I am very pleased with myself that I have made is halfway of this "31 for 21" challenge (see Oct.1 entry for info). I know that not every day is filled with exciting news, but I have had a nice ritual sitting down every evening, catching up on everyone else's blogs, then writing my own. I am very interested to see how I will fill these next 16 days ~ I promise I won't be a bore! :)

Sunday, October 14, 2007

Sensory problems with eating STILL

Tomorrow Brady goes for his two-year check-up. It's almost comical, because we are at the doctor's once a month already, so tomorrow we'll go and get a weight check, have a shot, then be on our way. I have given Brady whole milk a couple of times with some added heavy cream over the past week, but I just need to check with the doctor as to how many days she wants me to give it to him. I am assuming it will be a slow start so we can watch his calcium levels. He loves ice cream, so I am pretty confident he will make the transition pretty smoothly.

Now if he will only eat his food that smoothly! I am finding his sensory issues in his mouth are just getting more and more in the way. His Speech Therapist has worked with us for a LONG time regarding this, but it doesn't seem like it's improving. I don't know if I am doing all I can, or if we need to go about this a different way. It doesn't seem like a lot of WS kids were at this point at this age -- meaning he should be getting through this by now. Amy has helped me tremendously on this -- any more ideas from anyone??

Saturday, October 13, 2007

Happy 2nd Birthday!


Happy Birthday to you,

Happy Birthday to you,

Happy Birthday, dear Brady,

Happy Birthday to you!


Friday, October 12, 2007

Brady got some great CDs from his Aunt Kathleen - I highly recommend them: Best of the Land of Nod Store Music Volumes 1 & 2. Some recognizable tunes: Mahna Mahna (remember the monsters from Sesame Street singing this?), Linus and Lucy, the theme to Banana Splits (showing your age if you remember this!), and a ton more. You can find it here: http://www.landofnod.com/music/default.aspx and you can listen to the samples here: http://www.amazon.com/Best-Land-Nod-Store-Music/dp/B000B6TR5M/ref=pd_bbs_sr_1/102-3262982-1667340?ie=UTF8&s=music&qid=1192242963&sr=8-1

Sorry, I am not computer-savvy enough to just write "here" and have the link! :)

Thursday, October 11, 2007

21 Facts About Brady

In honor of the 31 for 21 challenge I am doing, here are...

21 Facts About Brady

1. Brady was born by cesarean section on Thursday, October 13... his first birthday would end up being on Friday, the 13th. His mother picked his birthday. (She had two choices - the 13th or the 6th.)

2. At birth, Brady weighed 7 pounds, 7 ounces. He was expected to be "way bigger" than his brother's birth weight - 9 pounds, 2 ounces.

3 Brady weighed 9 pounds, 2-1/2 ounces at three months old. He began to change and look more like his brother.

4. His eyes change color to what he's wearing -- from blue to hazel to green.

5. Brady's eyes scrunch up when he smiles.

6. When he smiles, he sometimes sticks out his tongue.

7. He didn't smile until he was 14 months old.

8. He smiles at his brother the most -- and the first.

9. His brother also makes him jolt and throw his arms up when he gets startled - a reflex he has not outgrown yet.

10. Brady also hasn't outgrown the act of throwing himself back when he's sitting for too long (but he's close).

11. He can sit when plopped down, but can't get into sitting position by himself yet.

12. Brady can roll around by himself in both directions, put his pacifier in his mouth, and play peek-a-boo with any piece of cloth or paper in his reach.

13. Brady's favorite game is peek-a-boo.

14. Brady loves The Wiggles, Sesame Street (Elmo), and Baby Einstein.

15. Brady will love going to Sesame Place next summer (any takers out there??).

16. In the summer, Brady likes swinging in the baby swing from the swing set.

17. Brady likes standing up much more than swinging, sitting, crawling or laying down. It will calm him down instantly if he's crying.

18. Right before Brady cries he will pout -- BIG bottom lip out!

19. Brady only cries if he's hungry or tired.

20. When Brady is tired, he can be put in his crib, snuggle him up to his blue bear and blue blanket bear, turn on his aquarium and he will go to sleep without fuss.

21. His brother gave Brady the blue bear -- and both make Brady smile.

Wednesday, October 10, 2007

Dum dum dum... he crawls!

I worked today.... I work ONE DAY this week. What day does he crawl????

My mother called and said he did it with his PT and my mother present, so there are witnesses.

And so it begins....

Tuesday, October 09, 2007

In my last entry, I touched upon the point of Brady being a hard person to buy for. Since he is just turning two, there are some things he"should" be doing play-wise that he is not. In fact, he just started playing with some toys he received last year and some toys he still is NOT playing with. We bought a sand/water table right before he was born thinking to give it to him for Easter or his first birthday... it still sits in the attic waiting for the right time.

Time does go by, and Brady has grown... slowly. For awhile it felt like we were in this hamster wheel, running and running but not going anywhere. I know it takes time to see the accomplishments of his work, but it just seemed like such a LONG time before he really did anything but sit around. It made life somewhat easier than my friends, who were running around after their toddlers. I could just bring Brady somewhere and he would sit contently.

Then, around the beginning of this summer, I noticed little changes. He played a little more with toys, more than the spinning he found easy to do. Over the summer I noticed he actually LOOKED bored if he sat in one place too long. By the end of the summer you could play with him a little --not for too long, mind you, but enough to say that he was "playing".


Now, at just about 24 months, he deliberately wants certain toys, looks interested at items, will repeat motions for cause and effect toys. He is still not "playing" in the eyes of parents of non-typical kids, but I bet the WS mommies online would constitute him playing. His Educator therapist said today she sees so much on the cusp, that she knows he's on the verge to crawl and/or walk. He just wants to MOVE!! (Yes, we want him to crawl first.)
This weekend I was pulling down some ride-along toys for the other kids to use at Brady's birthday party and brought out Michael's old green and black Big Wheel. I remembered he got it from his godmother for his second birthday. How strange it seemed -- Brady is obviously no where near using that kind of toy. The toys he got for his second birthday (mostly shown in these pictures) were perfect for him, including a Baby Einstein DVD that he loves.
I already know Santa might bring him diapers and some clothes, because it IS hard to buy for him... although since Brady loves putting his fingers in your mouth when you are holding him, my niece and I determined he wants to be a dentist, like Hermey, Rudolph the red-nosed reindeer's friend. Maybe Santa should bring him a little mirror.

Monday, October 08, 2007

The Party

Here is the little man on the day of his party ~ he is decked out in his Tom Brady jersey and looking very Patriot-like. A good 90 percent of the party goers wore their Patriots gear (my brother-in-law wore his Red Sox Schilling jersey, since they were on the TV following the Patriots game.) By the way, both the Patriots and Red Sox won - yeah!



We had five Crock pots going -- chili, cheeseburger (sloppy-joe like mixture with cheese), party meatballs, kielbasa with pineapple/ cranberry mixture, buffalo chicken dip; two warming trays --for Golfer's Chicken (Russian dressing, apricot preserves), cheese lasagna, and corn casserole; plus various dips --Mexican, BLT, onion, artichoke, salsa; and a cheese ball. Love the leftovers when I have parties -- although there wasn't a lot leftover this time. After the Patriots game, many stayed to watch the Red Sox triumph over the Angels, then the Yankees lose to the Indians :)

Brady had only a little nap before people came over so he was a very tired boy for his second birthday party. He managed to hang in there til we did cake and presents, sat on a few laps and had some bottle, even having some icing from his cake... then he was all done. No fussing - just putting his head down and snuggling in to whomever was holding him. So he was laid in his crib and the party went on around him.

He received fabulous gifts -- more Patriots wear (plus a new Brady jersey that will fit him next year- yeah!) along with toys, diapers (I asked for them!), cute outfits, and money for pictures and formula. People had asked me what to give Brady and all I could think of was diapers, so we got a few of those. I was psyched! As many of you know, it is hard to figure out what is age-appropriate for Brady. He is just now playing with toys he got last year. Luckily, the toys he did get this year fit right in to what he is doing now.

Michael had given Brady a Red Sox Build-A-Bear for his birthday last year (kind of a present for Brady AND Michael since Michael got to build it......hmmmm) so this year Michael built him a Cub Scout dog, aptly named Scout. Brady loved it of course, giving him kisses and hugs, all unprompted.


It was a fun day ~ plus we had today to recuperate and relax. He was very interested in his little buddies and cousins, and they were all so adorable and gentle with him. His real birthday is next Saturday, so he'll get his present from us then --don't tell him: it's a wooden sandbox with an umbrella/awning thing on top (gotta keep those WS kids out of the sun!). Tomorrow I think he's going to start on some whole milk with heavy cream with his speech therapist... I'll let you know how THAT goes!

Thanks for the well-wishes everyone!

Sunday, October 07, 2007

We had a great party today for Brady's birthday ~ the Patriots won (and the Red Sox!) and we had great food with friends and family. All the kids got along pretty well (only a few injuries) and it didn't rain or was 100 degrees. It was nice and cool, which made the house less hot. I will post pictures tomorrow after I upload them to the computer.

I am going to be lame and count this as my post because I am too tired to write anymore!

Saturday, October 06, 2007

Here I am on Day 6 of the "31 for 21" challenge and I have already resorted to pictures and song lyrics in my entries. In college I was a journalism major, and the professors always encouraged us to keep a daily journal... just sit with a pen and paper for 10 minutes and the words will all flow naturally. You will be surprised what you end up writing. SO here I go... free writing starts.... NOW!

I am sitting here with mozzarella cheese residue on my hands since I just made a lasagna for Brady's birthday party tomorrow. His birthday is actually October 13 (last year it was Friday the 13th!) but next weekend my parents are out of town, my sister is out of town, his buddy James will be in England... just wasn't going to work. So we are celebrating tomorrow, having a whole New England Patriots theme, with football food and decorations. I actually ordered his cake - it is a cute Patriots bobble head character (my husband is only interested in "who" the bobble head is - is it Bruschi or Brady???) with a Happy Birthday Brady on it. I usually make birthday cakes over here since Michael has a peanut allergy, but we've been lucky with this bakery and haven't had any allergen issues.

I crack up that we are doing Patriots theme... as opposed to Teletubbies, Thomas the Train, even just a big "2". Can you tell this is the second child?? Michael's second birthday cake was a cool-looking dirt road with trucks on it. All I know is that Brady has the perfect outfit to wear -- a Tom Brady football jersey onesie his godmother bought him last year. (For you non-football fans, Tom Brady is the quarterback.) Both Tom and Michael have jerseys, and I was going to resort to wearing a red shirt... then when I went to the grocery store tonight I found a pink Patriots shirt. Hopefully it will fit so I can be part of the team too.

We're having football-type food, munchies and a few non-meat dishes for the vegetarians coming (it's a cheese lasagna). Tom just realized on Friday afternoon he has Monday off, so I'm sure he'll be having a grand ole time tomorrow.

I will (of course) update with some pictures of the party tomorrow night -- hope everyone has a nice Sunday!

Friday, October 05, 2007

He ain't heavy, he's my brother


The road is long
With many a winding turn
That leads us to who knows where
Who knows where
But I'm strong
Strong enough to carry him
He ain't heavy, he's my brother
So on we go
His welfare is my concern
No burden is he to bear
We'll get there
For I know
He would not encumber me
He ain't heavy, he's my brother
If I'm laden at all
I'm laden with sadness
That everyone's heart
Isn't filled with gladness
And love for one another
It's a long, long road
From which there is no return
While we're on the way to there
Why not share
And the load doesn't weigh me down at all
He ain't heavy, he's my brother
He's my brother
He ain't heavy, He's my brother

Thursday, October 04, 2007

The calendar is never blank.

We just got booked in to the Boston Children's Hospital Williams clinic in mid-January. We go to the hospital daily for three days and see every specialist, along with OT, PT, developmental, consultants, you name it. I am pretty excited about it because I know we'll get some great feedback, but also some local help as well. I think they also have two families at a time so we'll hopefully meet up with another WS family. Brady's PT is interested in going with us one day too, which will be such a great addition. She'll get the first-hand knowledge.

This is not to say I'm not excited for our second Louisville trip also -- we're doing that at the beginning of January (Amy??). So basically, we'll be overloaded on information to start the new year, but I can't really help that right now. The Louisville trip includes a meeting with Dr. Morris, whom we didn't get to see in June. I enjoyed going last summer; I think I greatly benefited from that trip. I am interested to hear if Dr. Mervis sees any major changes in Brady.

I will probably need a little R&R come February. Las Vegas, anyone?

Wednesday, October 03, 2007

I have a confession to make: having a special needs child has made me less tolerant over stupid problems. The issue lies in what I consider a "stupid problem". I have actually gained more patience in general ("Is it really that important for you to be so upset?") but I am finding there is very little out there that I consider a major problem to be unnerved about. I am not comparing our shortcomings to someone else's -- just putting everything into perspective has made me realize that some things are not as bad as they could be.

It is a problem, really. I am realizing I have less and less sympathy for people who's major problems look like they belong in high school ("Are you mad at me?"), or problems that are easily avoidable ("Ummm... maybe you shouldn't have started dating a married man.") or problems that are blown out of proportion ("Yeah... a hangnail is a very serious condition for you to call in to work.")

Am I becoming a bad friend? Sometimes I feign sympathy because I don't have the guts to tell someone I don't agree with their thought process. And sometimes I know that's really all friends need to do -- just be a sounding board for people so they can figure out their problems themselves. I am sure I have bored a friend or two with things they didn't think were so important. But I am wondering if I will ever go back to having that non-judgemental ear.

Sometimes the most important problem for you is a minor one: sometimes you just need the simplest of things go right because everything else sucks. For example, your computer breaking down isn't the worst thing in the world, but it can be that last little thing to drive you over the edge. ("Look at everything in my life -- can't AT LEAST my computer work?????") I hear that~ it happens. And God knows I've been there. I have to remind myself to keep in check.

Who knows -- maybe it isn't because of Brady that I feel this way. Maybe I would've felt this way anyway since I am (gulp) getting older and less tolerant. I do look forward to that glorious senior citizen age where you can tell everyone exactly what's on your mind and people just expect it. Maybe I'll become more understanding by then.

Tuesday, October 02, 2007

This is what happens if you wait too long to put an almost-two-year old in for his nap....


Here is Brady hard at play.... he has become more interested in playing with toys over the last few months.

Monday, October 01, 2007

31 for 21

Today is the first day of Down Syndrome Awareness Month. I have been learning more about this syndrome as I now frequent Michelle's site (http://mdbeau.blogspot.com/) about her daughter Kayla. She has received a challenge to "31 for 21", upon which she put out for everyone else. This means to post every day in October (31 days) to raise awareness for Down syndrome, 21 referring to the 21st chromosome that people with Down syndrome have. You don't necessarily have to write about Down syndrome in each post, but to explain that is why you are kicking it off would be nice!

As I sit this first hour writing, I am smiling to myself at how much has changed in the past two years since Brady was born. Not regarding the Williams diagnosis, or just having another child in the house, but just the friendships that have been created and brought together because of our children. When Michael was just a toddler, I created friendships with women whom I am still close with to this day -- even though our children may not be close anymore, we still share a bond.

With Brady, my ties with people across the country through the internet are just as close. Why, just this day alone, at 1 p.m. in the afternoon, I have already mentioned Erik, Clare and Lisa (LOL). I speak of them and others as if they were just at my house yesterday. How can this be??? Well, Clare could have been :) but Avery is in Indiana, Erik in Oregon, Daven in New Mexico, Tatum in Maryland... and the list keeps growing.

I found Michelle's site through another blog and now I follow along Kayla's journey, as I do with all of the other WS mommies out there. It is helpful and refreshing to have the support and education from everyone... thank you all.

Tuesday, September 25, 2007

What's Your Name?

I copied this from another blog... what's your name???

1. YOUR ROCK STAR NAME: (first pet & current car), Linus Camry
2.YOUR GANGSTA NAME: (fave ice cream flavor, favorite cookie), Chocolate Chip Cookie Dough Chocolate Chip
3. YOUR “FLY Guy/Girl” NAME: (first initial of first name, first three letters of your last name), K-Farr
4. YOUR DETECTIVE NAME: (favorite color, favorite animal), Blue Panda
5. YOUR SOAP OPERA NAME: (middle name, city where you were born), Grace St. Louis
6. YOUR STAR WARS NAME: (the first 3 letters of your last name, first 2 letters of your first), Farke
7. SUPERHERO NAME: (”The” + 2nd favorite color, favorite drink), The Brown Malibu Pineapple
8. NASCAR NAME: (the first names of your grandfathers), Charles Charles
9. STRIPPER NAME: ( the name of your favorite perfume/cologne/scent, favorite candy), White Shoulder Hershey Almond
10.WITNESS PROTECTION NAME: (mother’s & father’s middle names ), Marie Michael
11. TV WEATHER ANCHOR NAME: (Your 5th grade teacher’s last name, a major city that starts with the same letter), Spitznagel St. Louis
12. SPY NAME: (your favorite season/holiday, flower). Autumn Carnation
13. CARTOON NAME: (favorite fruit, article of clothing you’re wearing right now + “ie” or “y”) Pear Aqua Shorts
14. HIPPY NAME: (What you ate for breakfast, your favorite tree), Mini wheat Dogwood
15. YOUR ROCKSTAR TOUR NAME: (”The” + Your fave hobby/craft, fave weather element + “Tour”), The Reading Breezy Tour

Friday, September 21, 2007

Children's Hospital -Week #2

Okeedokee... Monday we went to Orthopedics. I love our orthopedist. He is WONDERFUL. However, we did end up waiting an hour to see him, which through off the rest of the day and the OT appointment at the hospital afterwards. My mother was with us and pretty upset we had to wait so long. She was threatening to make snide comments when the doc came... I had to restrain her. I like this doc! She ended up behaving herself. :)

Brady's PT gave me a list of things to go over with Ortho, notably his hands -- he tends to keep his thumbs in at rest. He does open his hands all the way, pick things up and use normally, but they definitely need stretching out. His left is worse than his right and sometimes prohibits him from putting food in his mouth. He recommended hard splints to wear to bed. We went to the OT at the hospital and they made one right there and then - how cool! Brady wore it with no complaining. We ran out of time to make the other one, so we have to go back now NEXT week (Week #3 for those keeping track) to make the second one. It only takes about half an hour. While we're there we'll get his blood and urine test for calcium.

The Orthopedist felt his radial ulnar synostosis was fine, not prohibitive to him in any way yet. His hamstrings were a little tight, but both he and Brady's PT feel Brady is going through a growth spurt right now which could account for that. His PT also feels Brady's ankles are weak. His knees are fine, very strong. The orthopedist prescribed UCGLs which I think are a hard plastic brace for his shoe to support his ankle. They are not covered by insurance and are $250 each. Apparently insurance doesn't cover anything below the ankle. What?!?!?!??!

No biggee - the doc wasn't pushing for them right now (Since he's not walking or attempting to - we're still working on the crawling) and the Brace shop people said if he prescribed SPOs they would be covered. SO I will look into all that. Plus I am finishing up an insurance plan that would cover some out-of-pocket medical expenses, so we might be okay anyway.

Which brings us to Thursday... when we went to the Ophthalmologist. Yes, Brady got in a bit of trouble for taking his glasses off! But the doc did say she doesn't feel the glasses are really helping his eyes turning in anyway. They both turn in at different times, which is good because it means he is using both eyes. His vision is actually fine. She did say she thinks he probably will need surgery to stop them from turning in for cosmetic reasons. Basically, he will feel better about himself, give him confidence, it will aid him in being more social if he isn't self conscious about his eyes. I understand and agree. It's nothing that will happen soon, and they adjusted his glasses and we got a strap so if the glasses do seem to help over these next three months, maybe we won't think about surgery.

On top of all this, I think he has allergies. I think they spiraled into a cold, which we all have now.

I will write more later- but since I chose to read all the blogs before I wrote has led me to a late night when I am EXHAUSTED!

Sunday, September 16, 2007

Busy, busy, busy

It's been a little insane over here (I am noticing how many times I start a post like that...). We started the new school year and with that all the other new things -- a new Sports season (soccer), a new Cub Scout year (Webelos 1), a new Programming year for me with the PTO (scheduling and finalizing programs for the school), a new CCD class, a new homework/play/bed schedule, etc.

And on top of that, we have all of Brady's annual visits coming up. Within two weeks, Brady and I (and Grandma) have made/will make five separate visits to Children's Hospital, plus his normal therapy appointments (which Teresa has graciously pointed out to me is seven hours a week), plus a weight check at his pediatrician's. So... if I haven't called you back -- you know I'm not screening your call!

Our first visit was to Nutrition, where we had to see a new Nutritionist since ours is still on maternity leave from March (she comes back in November). We did like her-- she added more Polycose to his food, suggested we get insurance to pay for the Polycose (doing that right now!) and suggested we use the food processor on our dinner and give it to Brady for his, adding more calories and giving him more texture. Only thing, is that Brady is in a "No Food" strike right now because his two-year-old molars are coming in -- Brady's teeth are always the one thing he gets early or on time! He is taking his bottle so I'm not worried about him losing weight, and I think one just punctured through the other day so we are probably almost done.

Last Thursday Brady had his echo -- we have been going every six months because his heart problems seemed to stop escalating. This was no different -- no changes since March! Yeah! We don't go back til next March now. The only pain we had that day was waiting for the doctor because he was called to an emergency. We ended up not leaving until rush-hour traffic was starting and we were sans Grandma this trip. Looong day -- but good results. :)

Friday we went to Genetics. The ever-witty Teresa summed up the visit nicely for me: "What have you been doing? That's great, keep it up. Bye!" We love our geneticist so this visit is always pretty painless. She did recommend for Brady to see a Neurologist, only because he hasn't yet, not for any specific reason. Also, she wants his hearing tested again since it hasn't been done since he was five months old. She was pleased with his abilities, happy he was seeing PT three times a week plus the other EI appointments, and thought he was extremely cute. :) She said she wanted to keep an eye on his growth because he was barely on the WS curves for both height and weight. She is also having the coordinator from the Williams Clinic at Children's contact me so we can get in on that, which would be fantastic. We would see all his doctors over a few days and hook up with other families.

Tomorrow we go to Orthopedics (his PT gave me a laundry list to go over with him) and then OT at the hospital for measurements for possible splints for his hands. Thursday we go to the Opthomologist, where Brady will probably get into big trouble for not wearing his glasses. Hopefully she will solve that problem for us!

We were able to hook up with Teresa and Shawn both Thursday and Friday while they were doing Clare's pre-op then surgery. Good to see them, but not for good reasons. Please send your prayers out to Clare for a speedy recovery. Check out her updates here: http://www.claresjourney.blogspot.com/

Thursday, August 30, 2007

Wise words

I was blog-hopping and found an amazing post on a blog written by a mother whose four-year-old daughter has Down syndrome. Check out her post, titled Hope and Normalcy, Part 2, then read the rest of mine: http://mdbeau.blogspot.com/2007/08/hope-and-normalcy-part-2.html

I have noticed changes this summer. Changes in me, I think, but changes in others as well. I know people look at me with pity, with concern, with wonder that I have a "great attitude" for all we're "going through". I appreciate the concern, I don't want to appear rude. But, seriously, I have found that there are plenty more worse things than having a child with William's syndrome.

I can reiterate a lot of what Michelle wrote - just change Down syndrome with William's syndrome. Did I wish for my son to have WS? Of course not - life may be harder, his health will be riskier. And the stupid question would be would I sacrifice him to have a child without WS? Of course not. And about the "bad things" -- He'll have delays. He may live with us longer. He may not be a rocket scientist. He may have hard times growing up and maturing. (Ahem, all of these happen to "normal" people as well.)

I know people are trying to do their best to show me they care and are trying to be supportive. But I don't need or want people to act guilty their child is superseding Brady in development. I don't need people to look at me, sigh, and tell me how great I'm "doing", while patting my back in sympathy. My life is my life. Yes, we have countless therapy and doctor appointments. We are always trying to help Brady gain weight. We will always be in the middle of some "project" we are trying to help Brady with. You can show me support. Just don't show me sympathy. Seriously.

My girlfriend's friend's baby died when he was eight months old from a rare disease. Our PT know another baby who is living on borrowed time at 13 months. I know more than one person who can't even have children -- do you think they would mind having a baby with developmental delays? Our ST knows of a family where the father of five children died in an accident. I know a family whose son drowned at four years old.

For those of you who wonder why I have a "great" attitude -- THIS is why. How can I be sad over Brady when things like the above happen all the time? I am not some super-human. I am not extremely optimistic. I am actually very REALISTIC. Having William's syndrome is not the worst thing to happen.

Now you know my secret. Thank you, Michelle, for a great post and for making me realize why I may need support, I personally don't need sympathy. Just look at that cute little bugger :)

Tuesday, August 28, 2007

Goin' to the zoo, zoo, zoo... how about you, you, you...

We're in the last week before school starts so we're doing a few more fun things than normal. This is my bribery for Michael since we have to go to Children's on Thursday for the nutritionist appointment. (He'll probably get lunch out and the arcade for that visit!) Yesterday I took the boys and Michael's friend to Ang's house for swimming. After a lengthy nap, Brady came swimming too - he loved splashing and watching his buddy James thrash around.

Today we went to the zoo -- it is only 15 minutes or so from the house and when Michael was little I was a member, probably going once a week. It has a great playground and you can bring your own lunch, so even just to do something different we would head over there. I haven't gone in probably over a year, and so much has changed. It has definitely expanded, with fancier lunch areas and it even has a train that goes around the perimeter of the zoo.

This was Brady's first trip to the zoo, and he managed to sleep during most of it. I did get a couple of pics in and he got excited watching the pony show. He is enthralled by animals, which only gives Michael a better argument that we need a dog or cat. He follows their every movement and never seems to take his eyes off them. He doesn't seem scared, just interested.

In fact, he seems more interested in EVERYTHING. The big joke around here was that there was never a need for Brady to crawl, because he wasn't really interested in going anywhere, getting anything, going towards something or someone. Now, he spends some time laying on the floor rolling around to his toys... still not always purposeful, but definitely a little more thought-provoking. He has become very vocal, and I am wondering if his now-daily habit of three meals a day of baby food has helped bring that along. He's still not interested in chewing harder food; he will sometimes just put things in his mouth that's presented to him(like a chip or popsicle) but then just get the taste. Hey, we've gotta start somewhere!

I feel like I am getting to know Brady a bit better. You know right when babies are born they kind of just hang around, they are just "there"? For me, Brady was like that for a long time - he only showed real emotion when he was hungry and that was it. He was freakin' adorable and snuggable, but.... there wasn't a lot of else there. He has definitely "woken up". He is determined. He is playful --loves Peek-a-boo. He hates Mixed Vegetables -- and this is hard to figure out if you have a WS kid- you don't know if they don't LIKE something, CAN'T eat it, or CAN'T tolerate it. It's a major move! :) He gets excited. He smiles.

Ahh.... he smiles.... who'da thought I would be taking that for granted now?? Just read my first 100 posts :) :)