Thursday, May 21, 2009

Quarterly Report

It's been a while since I just chatted on how life is going in our land. With Simon's 2nd birthday over, we are through with the run of birthdays in our family until 2010. Thank goodness! I am quite done with entertaining my family and friends (just kidding... ha ha ha!).

Jamie graduated from kindergarten on Friday. He did his assessment testing for first grade at his new school and sailed through it (no surprise there). Overnight it seems, Jamie is reading. He reads everything he can get his hands on (even things I wish he wouldn't know how to read - such as bumper stickers on other people's cars). He loves to read to Clare and Simon, which is so sweet to see. Shawn and I are both huge readers, so I hope Jamie always loves to read. He gets to go in one day next week to spend the day with his new class (since they are not done with kindergarten yet), and he is so excited to do this! I think it's adorable that he is thrilled about packing a lunch and wearing a uniform. I won't hold my breath that he will be thrilled about this in a couple years! We are sad to say good-bye to St. Mark's Nursery School. It has been a fabulous experience for Jamie and us - a great introduction to the world of education. I am already looking forward to starting Simon there in a couple years. Jamie and Shawn are in the middle of their t-ball season (Shawn is coaching again). This will be Jamie's last year in t-ball before he moves up to the instructional baseball league. I am enjoying being a Saturday morning baseball mom again, which basically means I run after Clare and Simon as they play near the field and only get to actually watch the game whenever Jamie is at bat. It's been a tough couple of weeks medically for Jamie with two tooth extractions and starting allergy shots. Let's get all this out of the way so we can have a good summer!

Clare, being in the public school system, still has a month of school left. We continue to wait for the call from Children's Hospital about scheduling her wrist procedure. The fistula/aneurysm thrums all the time now, and she frequently complains that it hurts. Hopefully it will only be two more months max before it is repaired. Her speech therapist is still "on us" about having her tongue released, so as soon as we hear from Children's, we are going to look into getting that procedure scheduled for the third time! I know the therapist feels the tongue-tie is really impeding Clare's articulation, so she is currently concentrating more on sentence structure, grammar, and cognitive speech (such as recognizing shapes, colors, numbers - Clare can now count to ten and identifies a few colors). I am so proud of how hard Clare works with Judy. I can really see that her attention span and focus are increasing in length. She can make it through the entire one-hour speech therapy session and continue pretty much on task. Of course, we usually have a meltdown at the end from exhaustion! Clare has been asking when she gets to play t-ball. Our city has a league for kids with special needs, which she can begin when she is five. She has sat through many t-ball and soccer games (and is Jamie's number one cheerleader), so we are definitely going to get her involved in something next year. We also have received notices from her preschool about Special Olympics, so I am going to look into that as well. We have hit a "sad" phase where Simon is starting to pass Clare developmentally (sad for me, at least). Clare and Simon are unaware of this, but Jamie has noticed and is starting to question why Clare, at 4, does not know and cannot do many of the things that 2-year old Simon can. I am still formulating my answers to these questions.

Simon is a whirlwind these days! A very, very busy 2-year old. He and Clare have fallen in love with playing outside, and the two of them beg to go out all the time. They enjoy playing on our swingset or just exploring the great outdoors. I find them collecting buckets of rocks to throw into the sewer grates or rearranging Daddy's box of firewood or picking flowers (aka dandelions). Simon has started to develop cognitively by leaps and bounds. Now that Simon has mastered numbers (he can count to twenty and recognizes all his numbers) and letters (seriously, the kid is scary smart), he is working on shapes and colors. Actually, he has shapes fairly down pat as well now. It is such a dichotomy to watch Clare versus Simon develop. It amazes me how easy everything seems to be for Simon. I can read a book to him just a couple of times, and he has it memorized. I catch him multiple times a day sitting on the floor near the bookshelf or on the couch looking at books. He loves to read and be read to (a boy after my own heart!).

Violet turned four months today. In the last couple of weeks, her personality has blossomed. She can roll over, smiles all the time, and we have started hearing little giggles out of her. She always has a bright smile for us. Violet loves to just sit on my lap and watch the entertainment that having two older brothers and an older sister provide. She loves to play with her activity gym, and I started putting her in the exersaucer, which she loves as well. All kids seem to grow so fast, but I find that the more I have, the faster they seem to grow! We recently moved Violet out of our room and into the nursery. That event is always bittersweet because it means I don't have a newborn anymore, but it is nice to have my bedroom back!

Tuesday, May 19, 2009

You Choose...

which moment of my day was the worst:

1 - Watching Jamie have a tooth extracted and making an appointment for next Friday to do it again.

2 - Having the road crew who is re-paving my road yell at me, "What are you doing, lady???!!!??" as I am driving down my road (on the side that was completed yesterday, mind you) to get into my driveway. (If you're curious, I just yelled back, "What do you want me to do? I live here!!!!")

3 - Facing said road crew four more times as I do my daily school drop-offs and pick-ups.

4 - Comforting Clare during a hysterical meltdown as we are eating ice cream at Mack's Apples because two fire trucks, an ambulance, the fire chief, and two police cars all with sirens blaring scream by us.

5 - Dealing with the woman who said to me, "You have too many children." Right in front of my four beautiful children!

6 - Having the double-stroller tip over backwards with unbuckled Violet in it.

(Yes, I am having a let's-complain-about-everything moment.)

Sunday, May 17, 2009

The Things That Make Me Cry

I doubt this will make you cry, too, but I started crying when I read in a Williams syndrome publication that a new collaborative study is being done between scientists in the fields of cellular biology, cardiovascular gene therapy, and pharmacology. As the article states (because I could never paraphrase this properly!): "The study will examine possibilities for 'turning on' the elastin gene, modulating genes in the WS region on chromosome 7, and investigate rapamycin therapy as a way to slow down muscle overgrowth responsible for the stenosis in blood vessels."

People with Williams syndrome are missing a portion of genes on chromosome 7, one of these being the elastin gene. Elastin is used in the construction of blood vessels. Since people with WS do not produce elastin, this is why almost all of them have heart defects (ranging from mild to severe). I know this won't "fix" Williams syndrome, and it may not even have an impact on Clare. But to think that future generations of individuals with Williams syndrome may not have to face the severe cardiovascular issues that we have gone through with Clare overwhelms me with emotion.

Thursday, May 14, 2009

Belated Mother's day

S~ Okay, I know what all of you are thinking...Where was this post ON Mother's day? Well I am not going to make any excuses and I will follow the advice of a lawyer and keep my mouth shut. I did however want to post something on just how AWESOME my wife truly is. Anyone who has walked in her shoes (and my Mom and I have done this) knows that the schedule and routine my wife keeps is not an easy one. Shuttling the kids to and from school, scheduling all the doctor's appointments; the feeding, clothing, and keeping after four very active kids. She also makes sure that our house is always warm and inviting. And at the end of the day, she still feels guilty if Violet did not get enough mommy snuggle time. I remember hearing on the radio years ago that if they calculated up the income that a stay at home Mom should make for all the duties they do it would be an annual salary of around 250K, of course the IRS would take about 50% of that, but it is perfectly clear that this stay at home Mom clearly out earns me. However her pay comes in the form of dirty kisses from little boys who have been playing outside, hugs and smiles, from Dinosaur romps throughout the house, from stressed out daddies who have been struggling with a 2 year stop shipment,and lastly from constant complaints on the dinner she slaved over during the kids most pleasant of hours (we term it the witching hour).

So she gets one day all to herself to be pampered and praised and gushed over. However, this year Teresa sacrificed that so I could spend a weekend with my Dad fishing up North. We all met up at a lake in Manchester so the kids could go fishing and we had a picnic with my parents. I knew it was not the perfect day for her, but she smiled and had a good time anyway, and for that I love her. I love her and admire her for all that she does. Happy Belated Mother's Day Post to the most wonderful Mother and Wife!

Friday, May 08, 2009


I wish my child was normal. That when I turn around in the car to find her smearing herself and the car seat with cream cheese, and I speak to her sternly, she does not launch into a hysterical crying fit. That I didn't then feel horribly guilty about disciplining her and causing her to be so upset. That I didn't worry about what this was doing to her blood pressure, her heart, her aneurysm. That I didn't have to wonder if she truly didn't understand why I was upset and that I was too harsh. That I could just parent her as I would any other 4-year old. That she didn't spend the remainder of the car ride crying in the back, while I did the same up front.

Friday, May 01, 2009

Happy Birthday, Simon!

Happy Birthday to our number-counting, dinosaur-roaring, elephant-stomping, hug-giving, newly-turned 2-year old boy. We love you so much, Simon Joe!