Clare Bear

Clare has one week left of her preschool summer session. She loves school (can I say it enough?). We had one day where she was reluctant to go in, and that was Auntie Erin's first day with us. (She was afraid she was going to miss out on a whole lot of fun while in school!) Her vocabulary and sentence formation continues to explode. When we wrote her IEP for the 2008-2009 school year, one of Clare's goals was to make 4-5 word sentences. Even though this goal was written for September's IEP, Clare has not only started coming out with sentences that long, but she strings sentences together and has even started having little conversations with us. She stills slurs her consonants together, though, so a good portion of her speech remains unintelligible. Every day, we pick up more and more of what she is saying, but an outsider would probably still have a tough time. Right now, she only receives group speech therapy at school, but if we do not see any improvement in her enunciation, then we are going to look into getting some one-on-one speech as well.

Clare's teacher told me this morning that "Clare is becoming comfortable in school" to the point that she is very "chatty" in circle time. Her teacher laughed about it and said it was so cute, but, being the parent, I was more concerned that Clare was behaving herself! I was assured that Clare did listen when she was told to stop talking or given other directions. Of course, I think it's cute that Clare is chatty, but I don't want her to be a disruption either! All the teachers in Clare's classroom just love her. (What's not to love, right?)

In medical news, Clare has her next echo scheduled in September. When that appointment comes, it will have been six months since her last echo! We think she's doing fine because her energy level has been great, her eating is going well, and she looks beautiful, but I still have trouble waiting to find out what's going on in her heart. Clare's eating has been going so well that we cut out her appetite stimulant a couple months ago and have noticed no change in the quantity that she eats. We also cancelled our next appointment with the feeding team since skill-wise, she can eat almost anything (except meat - she still has a tough time chewing meat). Her biggest challenge remains her pickiness. Top foods on Clare's list - toaster strudels, poptarts, cheese puffs, and cheese and crackers. She has made strides in school with eating creamy textures, such as yogurt and pudding. But no luck when it comes to fruit or vegetables. Bananas remain her fruit of choice. We notice that she definitely still leans towards foods that do not require much chewing. And she has graduated from M&M's to the finer chocolate - mainly Dove. She is not satisfied when we offer her M&M's anymore - she tells us sternly, "No, chocolate. I want chocolate." A chocolate connoisseur at the age of three.

Other than a bad double ear infection a month ago, Clare has been doctor-free this summer. It has been so nice! With fall, comes a slew of appointments, but for now, we are gearing up to enjoy the last month of summer. I cannot believe it is almost August. Wow!

Shame

You know your housekeeping skills need reevaluating when your 5-year old comes up to you after his bath and says, "Mom, I cleaned the tub for you." And, even though he used the baby's washcloth and your expensive, fragranced body soap, the tub looks the cleanest it has in a month.

Eye Can See You

Today was Simon's eye surgery. The technical name for Simon's eye problem is right eye dacryostenosis (i.e. clogged tear duct). This is a very common issue in infants that commonly clears up in the first 6-9 months. However, since Simon is almost 15 months old and has had a gunky right eye every day of his life and numerous eye and skin infections, it was time for surgical intervention.

The actual procedure was fairly simply - wire probing to open the clogged duct. He was under anesthesia for 30 minutes tops, with the actual probing taking only 5 minutes. Simon is such an easygoing boy that I know things could have gone much worse. He was NPO (cut off food and drink) after midnight, so we were not sure how the morning would go. The little stinker (whose normal rising time is 5:30am) had to be awakened at 6:45am so we could make it to the hospital on time! On the plus side, he did not realize that we had neglected to feed him breakfast until about 8:30am. After exploring his crib, the hunger grumpies did set in (add to the fact that four of Simon's molars cut through overnight) so the next hour was spent passing the crying toddler from parent to parent. Once the nurses came to get him, though, he went willingly into their arms and they carried him off without a fuss. After surgery, the recovery nurse told us that he didn't make a peep when they put the anesthesia mask on them. He just stared at the doctor with his big eyes, then fell asleep.

(The weirdest part for me was that I just couldn't shake the feeling that we had brought the wrong kid! Comforting him in the crib, pacing the pre-op area with a crying baby, seeing Simon with leads on his chest, it all felt very surreal.)

Once the surgery was over, we were brought back into recovery where we could hear Simon crying. The nurse passed him to me, and we sat in the chair rocking for about fifteen minutes. He was inconsolable - did not want to eat or drink and could not get settled. Finally, he fell asleep again. They monitored his vitals and said the best thing was for him to sleep off the remainder of the anesthesia. After about 45 minutes, Simon woke up. Blinked twice, broke into a huge grin, and was his normal sunny self. He ate Pirate Booty, downed some water, charmed all the nurses, and proclaimed good-to-go. Erin was with Jamie and Clare, and we made it home about 15 minutes before they arrived home from picking Clare up from school. They were happy to see Simon home, then he went down for a four-hour nap! We had a quiet afternoon, delicious dinner brought to us (thank you, H!), and when Simon woke up, his eye looked terrific. You would never know he had surgery on it hours before.

It is too soon to tell if the surgery was long-term successful. If Simon's duct clogs again, it will eventually require the placement of an artificial drainage tube to relieve the chronic tear duct obstruction. However, right now, his eye looks great - a little pink around the edges, but other than that, nice and clear! I am glad everything went so well, and it is all behind us now.

(Shawn laughed at me for bringing the camera, but I like to document this stuff! The top photo is Simon enjoying the hospital crib when he was still happy. The bottom photo is on the way home. A little groggy, but looking good.)

Best of the Best

Best Housekeeping Award: to our cat Midnight... for taking all of the small toys and items I had placed on top of the piano (for putting them away upstairs at a later time) and removing them to the far reaches under the piano.

Best Discipline Award: to the mom at swim class this morning whose 4-year old kept going too near the edge of the pool... after the tenth time of yanking him back to the bench, she said, "If you don't behave, when we go to the doctor's this afternoon, I will tell him to give you a shot."

Best Mommy Suck-Up Award: to Clare... when asked "Who's the prettiest girl in the world?" she answered "Mommy." (Okay, her first answer was "Papa," but I'll take second place.)

Best E-mailer Award: it's a tie! to my sister Christina... who keeps me in stitches with her witty comebacks to ridiculous e-mails I like to share with her and to the former fellow parishioner who has so thoughtfully put me on her mass e-mail list... for thousands upon thousands of forwards ranging in everything from the deal of the day at Mary Kay to the warning chain-mail on the evils of Baby Orajel.

Best Food in the Entire World Award: to nachos... I think I've had nachos five times so far in the last six days. And just made them again for myself at lunch. And will probably order them tonight when we meet my mom and sister at Chili's for dinner. At least it's a fairly healthy craving.

The View From the Toilet

This pregnancy has thrown a lot of "morning" sickness my way. I was fairly nauseous during the first trimester of Simon's pregnancy as well, so I am not surprised, but it still is rough. My general feeling of yuckiness has actually gotten better - from an all-day thing to usually just 2 pm on. But it still throws me for a loop. I hate that I constantly feel like I have a big dead weight in my stomach. I hate that my house is a mess, prepared meals are a distant memory, and the afternoons find me prone on the couch while the kids play around me. I hate that if Simon pushes too hard on my stomach or Clare elbows me in just the wrong way, I will have to make a mad dash to the bathroom. (Although I admit it is cute that Clare now will spontaneously start play-coughing, run to the bathroom, make some fake gagging noises over the toilet, then come back out to me. With a big grin on her face, she will wipe her mouth with her hand and say with a big sigh, "all better." You little stinker...)

At the same time, though, I cannot help but marvel over this new little life, gagging and all. For those who don't know me well, becoming pregnant is not an easy thing for me. To put it briefly, Jamie, Clare, and Simon were all extremely well-planned. Baby Bonita is a shocker. I never thought I would just get pregnant. In fact, at my six-week postpartum OB visit after Simon was born, my OB brought up birth control. I don't believe in artificial birth control, and we practice Natural Family Planning. Plus, as I cheerfully reminded my doctor, avoiding pregnancy was never our problem. My OB knows my views on this, but she still equally cheerfully reminded me that just because I needed some help becoming pregnant in the past and just because I was nursing did not mean I could not become pregnant. Well, I am thrilled to say she was right!

So while I am hovering over the toilet, I remind myself that all of life is a phase. This too will pass. Hopefully in the next week or so (now that I am almost in my second trimester). Then I will have other equally delightful pregnancy woes to moan about!

Barbecue Slideshow

Williams Syndrome Barbecue

We hosted our first Williams syndrome event yesterday - a big backyard barbecue at our house. We were thrilled to have 11 families attend! The individuals with WS ranged from a beautiful 9-month old (recently diagnosed who lives about five minutes away from us!) to a 24-year old woman. (Who also lives in our town and happens to be the same woman I met by chance in Clare's cardiology office a few months ago.) I have to say the barbecue was a great success!

We visited with families who have become friends over the past three years and met many new friends. It's amazing how complete strangers can become so close simply because you have walked in similar shoes. These events give us a chance to share and learn from each other. We commiserate over the scary moments, discuss treatments, options, doctors, therapies, you name it, and can actually compare our children developmentally without sounding like snotty "playground parents." Most importantly, to me at least, it reminds me that our family is not in this alone. Sometimes it feels as if we are the only people in the world living with a child with Williams syndrome. None of our friends understand the ins and outs of what we go through with Clare. Even our extended family can never truly comprehend the struggles and challenges. But these other families can and do. I am so grateful that we live in an age where our world has gotten smaller through technology, and we have this opportunity to connect with those who live miles and miles away.

I hope everyone had a great time! We did! I ate too much and didn't get to spend enough time talking with everyone. We cannot wait to host another barbecue next summer.

I have not downloaded my camera yet (I know, I know, big slacker), so pictures are forthcoming. But Laura did a great job putting together a slide show of the kids at the barbecue, so check it out at her blog.

This Just In

It's time for lazy summer blogging. You know, where we are so busy bumming on the beach or doing that elusive strawberry picking that I have no time to write. Oh, I wish. The sad truth is we have all been sick in one form on another for a couple weeks now. It started when Simon came down with a high fever and vomiting. After a couple days of that, he was back to his smiling self, but then Clare came down with the same virus. Of course, since this is Clare, it also entailed a doctor's appointment, near dehydration, and two miserable days of Clare whimpering and moaning between her bed, the couch, and our bed. Thankfully, we avoided the hospital this time and Clare also was back on her feet. Then Shawn and I were both struck down with severe head colds at the same time. And finally Clare developed a severe double ear infection as a lingering result of the virus, so has been a short fuse of temper lately. Add to that, my never-ending all-day nausea, and our house was not a pretty sight. Only Jamie escaped unscathed. (I think he paid his dues with weeks of allergy attacks early in the summer.) Now everyone is more or less almost back to normal, Clare is on antibiotics, and my mother-in-law (God bless her) is here for a few days.

In other exciting news, my sister Christina announced she was pregnant last weekend! (Thus the Baby Bou timeline along with Baby Bonita's.) She is due just a few weeks after I am, so it is exciting to be pregnant at the same time and that the cousins will be close in age. And my other sister Erin is coming for a long-awaited visit in a couple weeks. The kids have missed her dearly since she moved about a thousand miles away, so we are all looking forward to her trip!