Tuesday, March 31, 2009

Happy Birthday, Princess!

Clare turns four years old today! Happy Birthday!

We had a princess party (of course!) this weekend for Princess Clare. Shawn bought her a new Cinderella dress from the Disney store (her first "real" princess dress), and Clare truly looked like a princess. She has been so excited about her birthday and princess party for days. This was the first time I think that Clare understood it was her birthday, and she was so thrilled about the whole day. There were games (Kiss the Frog and Pass the Tiara), presents, a pinata, and a castle cake. Clare enjoyed the idea of the castle cake more than the eating of the cake - she is not a big fan of cake or candy, unless it's chocolate, but she loved looking at her cake. And she had fun goofing off with the cake for her friends!

I say it every year, but it's hard to believe that Clare is now four. Four just sounds so old. Where did my baby go?? Who is this big girl who looks so tall these days (relatively so!)? Clare is learning how to play games with Jamie (she especially loves her new animal match-up memory game from Auntie Becky, Jasmine, and Alex - we play it multiple times a day), she speaks in complete sentences the majority of the time, she even has a preference with clothing now. It is so exciting to see Clare growing up!

We received Clare's second trimester report card and IEP progress report yesterday. We are very pleased with Clare's progress at school, and it is obvious that she loves school, her teachers, and her classmates. And they love her, too! Last trimester, she received "Satisfactory" in all areas except for her attention span, where she received a "lower" designation. We were pleased to see she has moved up to a "Satisfactory" in that as well! (It's kind of odd to me the way her report card levels are grouped, but it goes "Mastered," "Satisfactory," and "Making Progress But Not At Expected Rate.") Her IEP review shows progress in all areas - speech, occupational, and physical therapies. Clare still has much to work on, but that is the point of school! She brought in cupcakes to share with her classmates and eagerly told us how they sang "Happy Birthday" to her at snack time. (And she informed us that her classmates sang "Happy Birthday, Clare" but that she sang "Happy Birthday, Princess!")

Clare also had her pre-op physical yesterday for her surgery next Monday, and she is good to go! Finally healthy! Let's keep her that way!

Monday, March 23, 2009

LLL Article

While looking some stuff up online (mainly because Violet has thrush right now and she is my first baby to develop this), I stumbled across this article on the La Leche League website. Obviously I knew this piece existed because I wrote it and saw it published in New Beginnings magazine, but I was surprised it was on the Internet. It was neat to re-read my words of three years ago about the beginning of our journey with Clare from my breastfeeding perspective. (There's your warning about what the piece is about!)

Clare's Story


When your back is turned loading the dishwasher, and your almost 2-year old keeps saying from his high chair, "Mama, eyes. Mama, eyes," you really shouldn't just keep responding "mmmm" and continuing what you are doing without looking over at the said almost 2-year old. (In my defense, Simon says about a trillion times a day, "Mama, fill-in-the-blanks-of-whatever-he-wants-me-to-look-at.") So it serves me right that when I finally turned around, Simon had decorated his entire face and a good portion of his hair with ketchup. If only the digital camera hadn't been upstairs and the fact that even the smell of that much ketchup makes me queasy (I am not a ketchup fan at all!), I could have shared his red loveliness with all of you.

Friday, March 20, 2009

More Clare

Okay, all you seasoned moms have convinced me to keep on trucking with Clare's therapy! Thank you!

Clare is still not 100% herself, which is contributing to her increased tiredness as well (and her looming echo in April can't come soon enough so I can have some peace of mind that it's not her heart acting up). The last three winters have been so tough on Clare health-wise. Once she catches a cold, she cannot get rid of it easily and usually coughs and has congestion for the rest of the winter. The last two Aprils have landed Clare in the hospital for severe dehydration following a stomach virus. I think by April, her immune system is just run down from fighting colds all winter that one virus wipes her out entirely. Then she usually bounces back in the spring and is fine until the next winter. This winter has been worse than the previous two with Clare and illness, so I pray that we're getting the brunt of it now and not gearing up for a complete breakdown come next month.

Clare is still coughing and congested from her on-again/off-again cold/virus/bacterial infection/whatever she's had for weeks. Like this morning, Clare woke up covered in vomit because she had coughed so hard, she set off her gag reflex and threw up in her bed. ((I thought it was bad cleaning vomit from the top bunk down to the bottom bunk - this was the first time I had to clean it out of Clare's morning rat's nest of tangled curls. Sorry for the details, but it was gross!) That must have helped because other than looking extremely tired, Clare has been in good spirits for the rest of the day. I want her to rest, but she refused to nap, so I don't feel bad at all about letting her lounge in bed this afternoon watching "Curious George" while Simon and Violet nap, Jamie is at school, and I play on the computer! (Just while I am waiting for Clare's bedspread to finish in the dryer, of course.)

Wednesday, March 18, 2009

Signs and Colors

Back to the subject of Clare's speech therapy and my dilemma over whether to continue or not. I cannot gush enough about Clare's speech therapist, and I hate to let that go (and am afraid that once we are off Judy's schedule, it will be hard to get back on - she is in high demand). Clare's progress has been amazing after about six months of working with Judy. And Judy keeps telling me that we should see some "real improvement" once Clare has her tongue released. Real improvement?? Shawn and I marvel over the improvement already! But then it comes down to the question of which is more of a disservice to Clare - discontinuing speech or having her endure one really long day each week. (And before anyone offers this suggestion, it was almost impossible to find a time that worked for both us and Judy, so switching her speech to a different day or time is not an option right now.)

As I have said over and over, Clare's vocabulary has exploded, she now uses verbs and makes complete sentences, and is expanding her food repertoire (becoming stronger from the bite and blow toys Clare "exercises" with daily and tips from Judy on ways to help Clare eat better, both in diet and technique). One of the things that Judy has been working very hard with Clare on is her colors. Clare understands what colors are and can name them, but she cannot identify which color is which. We have played color games, looked at books, done all kinds of things for a long time now, but Clare still would only get the color right by chance. Until Judy introduced Clare to the signs for colors. When Judy holds up a banana and asks Clare what color it is, Clare cannot tell her. When Judy makes the sign for "yellow" while asking Clare, Clare immediately says "yellow." I don't know what it is about the signs, but Clare has an easier time identifying the sign with the name of the color. Or maybe she needs two visuals to make the connection? (The sign and the color itself.) I don't know why it works, but it does. So we are learning the signs for the basic colors - yellow, red, blue, green, orange, pink, and purple. Judy has also been using this technique to cue Clare in using verb phrases as well (such as "can I have," "it is not"). Once Clare has mastered identifying colors with the sign cues, hopefully she will be able to do it without the cues as well. It is an interesting technique, and one that seems to be working very well with Clare. I know not to expect Clare to be able to do everything on the same time table as Jamie, but she will be four in a couple weeks and cannot identify any letters, numbers, shapes, etc. This is one of the areas where I feel her work with Judy is helping so much. Clare loves to play with Judy and eagerly looks forward to their visits, so I am really torn as to what is the right thing to do for Clare's sake.

Monday, March 16, 2009


I know all parents are tired, but I am wiped these days! Violet is finally sleeping a little better at night and is not so gassy, but my body is still getting adjusted to waking up every 1.5-2 hours with her. Then we usually have both Clare and Simon up by 6am every morning, and it's go go go until bedtime.

The kids are all still up and down with illnesses. Just when we thought everyone was getting better, Clare came down with conjunctivitis and quickly passed it on to Simon. After another round of antibiotics, Clare's eyes cleared up, but Simon is still fighting his.

Jamie is under attack from his allergies again, and we haven't even really hit spring yet. We have an appointment with the allergist at the end of this month to discuss changing his treatment. I am praying we are not at the point already where he needs allergy shots, but I am not sure where else the doctor can go at this point. Jamie is already on three allergy medications (two different oral antihistamines and a nose spray), yet he continues to be congested with red eyes, sports the huge allergy shiners, and has a lingering cough. He spent the last two days in RI with my family, which equates to loads of fun and late nights. We get to endure the effects of his withdrawal today! Needless to say, he is one tired kid. And now Simon has spiked a high fever and developed a rash on one of his cheeks. After dosing him with Tylenol and Benadryl, per the pediatrician's orders, we put him to bed at 5:30pm. The pedi's office wanted to see him, but I am too wiped to even think about bringing someone to the doctor's, so we opted for the put-to-bed-immediately option and see how he is doing come morning.

Then there's Miss Clare. She seems to finally be feeling somewhat better cold-wise (still has a slight cough and runny nose, though), but Mondays are a tough day between school and speech therapy. She was so distracted at speech this afternoon. She kept flitting around like a little butterfly - just could not settle down and focus on a task. Judy is AMAZINGLY patient (I need some of that!) and kept reminding Clare about "quiet hands" and finishing the game before starting something else. Judy uses a schedule board with Clare to keep her focused on what they are doing at the present moment. This allows Clare to know what's coming up next (such as today went game, snack, coloring) so she's not preoccupied wondering about that. Usually the schedule board works great, but Clare was so unfocused today that that didn't even do it. She did not have any meltdowns at speech, but once we got home, she was so tired. All she could do was cry and scream at us. She literally could not function. Clare's oral motor skills go down the drain when she's tired, so she was slurring her words. We cannot understand her then, and she becomes even more frustrated. It breaks my heart (and it takes every ounce of patience and tolerance I have to not start screaming back). We see such great progress with Clare with her speech therapy, but if she is exhausted to the point of not being able to function every Monday afternoon, then I am not sure how long it can continue. Clare is having her surgery in a couple weeks, so we want to see what happens after that. For now, we are just going to keep at it and hope for the best.

And the queen of the castle is finally getting her crown. Unfortunately, it's on the bottom left side of my mouth. On the positive side, Shawn found me these delicious fruit "popsicles" by Edy's. I am a sugar junkie and have cut out heavy sweets from my diet (like chocolate, cookies, cake, brownies, ice cream, all the stuff I crave) - partly as a Lenten sacrifice and partly to lose my baby weight. I admit I definitely eat when I am stressed. These fruit bars are delicious, made out of real fruit, and only have 30 calories per bar. Eat up, baby!

Friday, March 13, 2009

Miss Popularity

As I was walking Clare into school yesterday morning, another mom stopped me and asked, "Is this Clare?" I knew her little boy was in Clare's class, and I said, "Yes, and you have A, right?" She said that her son talks nonstop about Clare at home, so she wanted to know which child was Clare. I thought that was sweet.

Then when I picked Clare up from school, her teacher said that one of the other children's moms came into the classroom and asked Miss Pam to point out Clare to her, explaining that her son J talks all the time about Clare. I laughed and told Pam what A's mom had said to me that morning. Pam informed me that the afternoon 4-year old class (the majority of which is comprised of the students that Clare was in preschool with when she first started in April of last year - Clare still being 3 when school started this past fall did not move up with them) still talked about Clare and, whenever they saw her name tag hanging up, asked about her.

And then when I picked Clare up from school today, Pam told me that Clare and J were sitting next to each other today, and Clare said, "J, I love you." And J responded, "I love you." And then they kissed! (I am not ready for THAT yet!)

It definitely gives me those warm fuzzies to hear how the children love Clare. And obviously talk about her so much at home that their parents want to know who Clare is as well. I know that is one of the "gifts" of Williams syndrome - that endearing personality and the ability to charm anyone and everyone! Clare certainly has that gift!

Friday, March 06, 2009

Madhouse Days

It's one of those days when I feel as if we live in a madhouse. The kids are all being very well-behaved (for once!), but hours of running around here and there is making me loony!

Violet had her appointment with the ENT today. Shawn met me at the doctor's since I had Jamie and Simon with me as well (Clare being at school). The doctor examined Violet again, and after forcefully pushing her tongue up and around with thick-gloved hands, Violet graced him with the biggest grin we have seen yet! Dr. Z went over our options again and the pros and cons associated with each option - either release the tongue right then in the office with a topical anesthetic, have it done under general anesthesia in the hospital, or continue to do nothing and see if Violet has problems in the future. Given the speech and feeding problems we currently face with Clare (although we do acknowledge that Clare's low muscle tone contributes to those issues as well) and that we would rather avoid general anesthesia if we can, we chose option one and had Violet's tongue clipped immediately.

I was shocked how easy the procedure was and how well Violet did! Dr. Z warned us that the topical anesthetic tasted horrible (he applied it under her tongue using a cotton swab) - Violet never made a face or sound and even appeared to be trying to taste it. Then Dr. Z warned us that Violet would probably cry once he clipped the skin and would bleed for a few seconds. Violet did neither of those things. No crying, not even flinching and no blood at all! Dr. Z was even able to clip the skin a good ways back under her tongue, so Violet should not have any trouble in the future. The entire appointment lasted about 17 minutes. I am so glad we were able to get this procedure done with little fuss.

Violet is already starting to lose her "lizard tongue," although Dr. Z said it may never truly go away because that's how Violet's tongue was formed. But it has rounded out a bit so far!

Monday, March 02, 2009


Violet and I spent a long weekend in Philadelphia with my sister Christina, Tee Jay, and my new niece Casey. We had a wonderful visit (and thank you, thank you, thank you to Shawn who bravely held the fort down at home with the other three children!). I was able to do some cooking, baking, and grocery shopping for them and stock them up for a good week or so with food. Casey is their first child, and we all know how hard new parenthood can be!

Casey is gorgeous! Being only a week old, she made one-month old Violet look huge. Of course, we had to dress the girls in matching outfits and snap some photos.