In Session

We were at the convention "in session" for three days. Each day consisted of a morning keynote speaker then three information sessions (with multiple sessions to choose from for each time slot). Day One, we did everything. This is what the day consisted of:

Get everyone up, dressed, and to the continental breakfast. Drop Jamie off at the bus area for his school-age day camp. Drop Clare and Simon off at a different room for the preschool day camp, Shawn drop Violet off at another room for the baby camp (with me staying well out of the way so Violet would fuss just a teeny bit instead of a WHOLE LOT). Grab a second cup of coffee before securing seats for the keynote speaker. After the speaker, 15-minute break (with the familiar ladies room line that lasts the entire break), then off to Session One. Mad dash to the childcare rooms to pick up the three younger ones (Jamie stayed at the day camp off site and joined us again before dinner). Find somewhere to eat lunch, order lunch, coax the children to eat quickly because we only had an hour total to pick them up, eat lunch, and drop them back off. Which is not a lot of time in a big hotel with hundreds of other people trying to do the same thing (poor planning, convention people)! This time, Shawn and I divide and conquer - I bring Simon and Clare back to their room, Shawn is on Violet-duty. (More fussing from Violet than in the morning, but she still goes into childcare fairly well for a 18-month old who has never been in daycare, with a "strange" babysitter only once, and usually won't even hang out with the grandparents without looking around for mom). Arrive at Session Two a little late because the session starts at 1 pm, but the childcare rooms do not reopen until 1 pm (again poor planning, convention-people!). Session Two, 15-minute break, Session Three. Keynote speakers are incredible (made me cry two mornings in a row, dang it!). Sessions are chock full of good information, but now I am on brain overload - mentally-, emotionally-, and physically-exhausted. After Session Three, breathe a big sigh of relief, have about 10 minutes to do nothing, then it's pick-up time for all four children. Four children are extremely excited, wound-up, overtired, and fussy (all at the same time!) about their days. Enjoy about 30 minutes together before it's time to get ready for the evening event (which everyone is eager for because it not only includes horses, carousel, zoo, train ride, dinner, and banjo music, but also Auntie Erin!!), but everyone is also very tired and a little high-strung.

When Day Two dawned, I was already done. The sessions were so helpful and informative that I hated to miss any, but by the afternoon of Day Two, I needed a break. I went with Shawn to the keynote speaker and sessions one and two, but skipped the third session. I went back to the hotel room and took a nap (Shawn went on to his "dads only" session and the kids were all still at camp). By Day Three, Shawn was done, too. Since it was a Saturday, we had already planned months ago to only put Violet in childcare that day, and Erin would take the other three for the day. Erin picked them up for the Science Museum, but we did not put Violet in childcare. She had successfully lasted the first two days, but I think Violet was done with the whole childcare scene and was extremely fussy and clingy. Shawn and I agreed to skip all sessions on Day Three. Instead, we took Violet with us to the Vatican Splendors exhibit at the Missouri History Museum. Incredible! I am so glad we did this. The exhibit showcased art and artifacts from the Vatican's collection. Many pieces have never been outside the Vatican before. We saw amazing items, such as relics from Sts. Peter and Paul (actual pieces of their bones), Michelangelo's art and tools used in work on the Sistene Chapel, Pope John Paul II's chalice and patten, and the 16th century red cope worn by St. Charles Borromeo. We spent two peaceful hours at the exhibit (Violet cooperated by taking a nap in the stroller during the majority of this), ate lunch at a great little Mexican place, then found Gooey Louie's, a St. Louis bakery devoted solely to gooey butter cake. If you know me and my family well, you know that gooey butter cake is a staple in our diet! We were able to recharge during the day, then in the evening, Erin generously babysat in our hotel room (with pizza and a movie), and Shawn and I enjoyed the ending convention banquet minus children.

The keynote speakers we heard were Dr. Ray Guarendi (parenting "expert" - although he scoffs at that title - and father of ten children) and Gary Guller, the first man to climb Mt. Everest with only one arm. Not only did he reach the summit, he led an expedition of the largest ever cross-disability group to reach Mt. Everest Base Camp. Both men were exceptional speakers. Dr Ray had lots of good advice when it comes to parenting and discipline, but Gary Guller made me realize that we can't give up on our dreams no matter what life throws our way. That our kids CAN do anything, and it's not up to us or anyone else to tell them they cannot. Gary Guller was beyond amazing when it comes to being inspirational.

As I stated, the convention was overwhelming, but it was worth the trip. I still have not re-read and digested my notes and the binder of slides from the sessions we attended. I have a list of potential "issues" to look into and check off my list. We gained some insight into what's going on in Clare's brain, learned new techniques to help her cope with stress and anxiety, discussed ideas for a sensory diet, and added goals to her IEP, to name a few. We are very glad we made the trip to St. Louis (both in visiting family and for the Williams Syndrome Convention), but it always sweet to be home again!

Meet Me in St. Louis

We are back home after a two-week road trip. (We called it a vacation, but it was only semi-relaxing!) Every two years, the Williams Syndrome Association holds a national convention, and this summer it was in St. Louis. We had not attended a convention yet (Clare was too sick in 2006, and 2008 was held in California, which was too far away for us), so when we heard that the 2010 convention was to be in St. Louis, we knew we had to go. My dad is from St. Louis, and his family still lives out there, plus my older sister is currently living in St. Louis (an older sister who my children love dearly and who they have not seen since Christmas). Plane tickets, rental cars, lugging gear around was too much to handle, so a road trip it was! We journeyed in three legs both ways - our home to my younger sister's in Philadelphia (where we spent the Fourth of July), then Philly to West Virginia (where my grandparents live), then on to St. Louis. On the way home, we did it in reverse! They were six long days of driving (about 50 hours total spent in the car), but the kids did fairly well! They are little troopers, that's for sure.

So the convention... many people told us that once you attend a convention, you will never miss one again. Frankly, I am not sure I agree with that! There were many wonderful things about the convention, but it was also so overwhelming. I am not sure what I expected exactly, but this little story is a good illustration about how it was way more than I could have imagined. Our third day of driving was the worst. Everyone was sick of being in the car. The last two hours of the drive, Violet was so upset about everything, that she was making herself sick. We ended up pulling over and switching the seating arrangement. Jamie and Clare sit in the same type of car seat and so do Simon and Violet, so we can do all kinds of seating arrangements without moving car seats. Violet would only calm down if I rubbed her head, so I squeezed in the rear row between Clare and Violet. When we finally pulled up at the Hilton in St. Louis, that's where I was - wedged in the back between my girls. Shawn pulled up to the valet, and we all waited while he went in to register (you quickly learn at hotels NOT to unload all the kids until you're sure you're staying put). As we waited, I saw this little face pressed against the glass from inside the hotel. It was a boy, probably a little older than Clare, who without a doubt had Williams syndrome. After a l-o-o-o-ng two hours, seeing that smiling, friendly, oh-so-familiar face doing something I have seen Clare do so many times instantly brought a smile to my face. I thought, that's so cool - there's another child with WS inside that hotel! When Shawn came back out, I eagerly told him about the boy. His words to me were simple: "Tree, you haven't seen anything yet." I asked him what he meant, and he said, just wait.

After unloading the children, the luggage, and the gear, we entered the hotel lobby. And Shawn was right. I hadn't seen anything yet. The lobby was full of faces, just like the one I saw pressed up against the glass. Babies, kids, teenagers, adults - all with Williams syndrome. They were everywhere. We have attended numerous WS get-togethers, but never with this size crowd. It was unbelievable. It was also quite overwhelming. It was in-your-face Williams syndrome. And I am not sure I was ready for that.

(to be continued)

Clare

So much to say, so little time about our Miss Clare Bear! Clare is a proud preschool grad. I thought she would have some trepidation or anxiety about preschool ending, but either she does not fully grasp it or truly is okay with it. Her graduation day was full of songs, pictures, and treats. Her teacher cried as she handed out the diplomas which made me cry (totally ruining my punk look with my purple streaks - bad girls don't cry!). Clare has been with her teacher, Miss Karin, and assistant teacher, Miss Kelley, since she started in March 2008. They have watched her blossom from almost a baby into a big girl. They have been there with her as she learned to talk, run, climb, toilet-train, and spell her name. They should be proud at how much Clare has learned in the two-plus years in their classroom.

Clare will still do summer session at the end of July (she will miss two weeks because we will be on our big road trip to the National Williams Syndrome Association Convention!), but summer school is going to be in a different school (hopefully Clare will be in Miss Karin's classroom, though) with different classmates. In Clare's mind, she is moving on to kindergarten!

We had Clare's IEP meeting (minus Clare), in which we met the special educator for Clare's new school as well as the kindergarten teacher. The meeting went very well - we agreed with all the goals and were able to negotiate some extra PT sessions. Then we had a second non-IEP meeting at the new school (this time, with Clare) with the new staff - OT, speech, nurse, and special educator. We met the principal and assistant principal as well. We were able to go over Clare's medical and educational history as well as our concerns and goals in a more relaxed setting with Clare's new team. Again, we thought it went very well. Her new school is one of the best in the district and very small. Clare will be in a half-day morning kindergarten program. Clare and I attended her kindergarten orientation a couple weeks ago. She was thrilled to visit her new school again. We took a tour, met more teachers and staff, and played some games to get ready for kindergarten. Clare had a chance to explore the classroom, spend some time with the teacher (who I like so far), and meet some of her potential new classmates. She knew a girl from her preschool, a boy from the childcare room at the gym, and the twins that live down the street from us. We know Clare is in the morning class (we had it put into her IEP to be sure she was placed in the morning class), so we hope that at least one of the kids she knows is in her class as well.

Clare performed in her dance recital last weekend. The younger children in the ballet school danced in their production of "The Little Mermaid." Clare's petite ballet class were little fish, and they were so cute! Clare did a great job - she isn't able to perform all the moves because she has trouble with her balance, but she tried so hard, paid attention, and was not scared by the big stage, bright lights, and scores of faces! Her favorite part was being allowed to wear make-up. She talked for weeks about the make-up! Clare absolutely loves her ballet class. She is all about the music and dancing and girlishness of it. I think it is good for Clare because it helps her with her strength, endurance, and balance without being too strenuous. When Clare took swim lessons (something she also loved), the 30-minute class wiped her out for the rest of the day. Ballet is not like that, so it's a better choice of activity when it comes to Clare's endurance level. She is taking a break for the summer, but will resume ballet in the fall.

Health-wise, Clare is doing well. She had her recent endocrinology appointment, and once again, she has shot up! She has gone from not even being on the height chart to 10% a couple years ago and now she is at 19%. She is still slow on gaining weight, but has become so long and lanky. (Or lean and mean!) We recently went down to Children's Hospital for a renal ultrasound (no results yet - they are checking for any stenosis in her renal arteries as well as any issues with her kidneys because of her continued high blood pressure) and will go back to Children's in a few weeks for some dental work. Clare only needs a couple cavities filled, but because of her complicated cardiac history and increased anesthesia risks associated with Williams syndrome, the pediatric dentist wants her dental work done under sedation at Children's (they always want that cardiac OR back-up, just in case).
We are finally attending our first national Williams syndrome convention this summer in St. Louis and are so excited to go. Over the past five years, we have met many local families and been at gatherings with multiple children with Williams syndrome. I cannot imagine how it is going to feel to be surrounded by hundreds of people all raising children with Williams syndrome. We will also finally have a chance to meet friends in person that we have only chatted with online or on the phone for years. We are going to make a vacation out of it and visit both of my sisters, my grandparents, my grandfather, and aunts, uncles, and cousins along the way and in St. Louis. It is going to be one fun trip!

Construction Photos

After two months, our addition will be done in a couple weeks. Like pregnancy, it seems like the new addition would take forever, but now, looking back, I cannot believe how far we have come and that it is almost done. Other than our garage doors and row of small windows above the doors (which are on special order), the outside is complete - windows, siding, addition roof, new roof on house, doors, retaining wall, etc. Our driveway and sidewalk are being hot-topped as I type, and we are excited to start being able to park the cars in the garage at night. (We've done it a couple times to try it out, but it's hard to get over the lip where the driveway should be.)

Inside, the contractors are dry walling. Not my favorite part of the construction as it means the huge mess has moved inside my house. But the dry walling means we have been able to do some of the other exciting parts, such as choosing our paint colors, flooring, and light fixtures. We are definitely getting closer to the finish line!

April 13 - Our house before construction began.

April 13 - The excavator begins digging.

April 28 - Framing begins.

May 11 - Working on the roof and siding.

May 28 - Master bedroom.

May 28 - Master bath.

Simon

I don't know if it's a blessing or just cruel that I forgot how much worse 3-year olds can be than 2-years old! Clare's development has not been typical in so many ways, so it's been four years since we've had a typical 3-year old in our house. And Simon is giving us a run for our money!

Simon is a talker. And a charming talker at that. He can melt your heart with his sweet little face, big brown eyes, and words of love. His catch phrases right now are "I have a joke" and "I have a plan." They are then followed by some sort of imaginative nonsense that only a 3-year old can invent. The kind of nonsense that always elicits a dutiful smile or laugh from a doting parent, even though you have no idea what they're talking about. However, the talking is also non-stop, and Simon chatters right through everything. Not only events and activities (Mass, plays, school events, the grocery store, an hour's car ride) but any form of discipline, instructions, or other conversations in general.

Simon has also become the Master of Button Pushing. In two ways. The first is the obvious way in that he wants to be in control of every button there is in his environment. All the light switches, the TV power, the switch for the garbage disposal, elevator buttons, handicap door-opening switches, the dishwasher. If there is a button, Simon demands that it is his right to push it. Which leads to the second way in that he knows how to push the buttons of his older brother and sister. Many times these two button pushings collide, and he will race Jamie to be the first one to push the elevator button at the doctor's office (I have yet to discover the allure of this coveted prize - the pusher of the elevator buttons - but since we are at the doctor's frequently, it is a weekly battle.) Simon knows just how to make Jamie and Clare angry or upset. He may be the smallest of the three, but he can hold his own when it comes to the mental games of sibling rivalry.

Having a 3-year old in the house is challenging and, quite frankly, mentally exhausting at times. Simon very rarely naps anymore, yet there are days when he needs to. But if he does nap, then he is awake until 8-9pm, and I can't have that! (We have always had a fairly strict 6:30-7pm bedtime. I know many people think that's so early, but it works great for our family and my sanity.) Yet, in so many ways, Simon is the sweetest of my children right now. He is still very snuggly with me (Clare is, too, but Jamie is starting to outgrow that), and still often climbs into my lap. He loves to be read to and would read books all day long. He cannot get enough of books, and I love that about him! Simon has also taken quite an interest in doing what he calls "schoolwork" - coloring or preschool workbooks. He is very smart when it comes to numbers, colors, shapes, letters, and just loves doing activities involving those things. He is ready for preschool in the fall, and although he can still be clingy and a little shy at times, I know he will love it!

It is fascinating to watch Simon's imagination develop. He reminds me so much of Jamie at that age. He loves to play with his dinosaurs, Jamie's superheroes, and Clare's princesses. He will play quietly by himself in the playroom downstairs for an hour (and actually playing with toys, not getting into stuff in the storage room or Shawn's office, like Clare would be!). In many ways, I can trust Simon more than I can trust Clare. We may have our challenging moments, but, at the end of the day, when he puts his still-chubby little arms around me and gives me a big squeeze and tells me I'm a "silly head," it's all worth it!

Excuse List for Blog Neglect

1. Unseasonably sweltering late May/early June weather zaps my energy.
2. Men swarming my house doing various projects causing all kinds of messes.
3. Using whatever energy the heat has not zapped to clean up the above messes at the end of each day or I go nuts.
4. Three soccer activities per week.
5. Getting Jamie's migraines under control.
6. Scheduling dental appointments and renal ultrasounds at Children's Hospital for Clare.
7. Finishing end-of-the-school-year first grade project on Arlington National Cemetery, Tomb of the Unknown Soldier, and Memorial Day.
8. Husband away in Boulder, Colorado and Atlantic City (business not pleasure).
9. Keeping the toddler from killing herself on the playground. Violet loves the slides and stairs and ladders, but has no common sense.
10. Jamie's production of "The Emperor's New Clothes" and now Clare's ballet recital of "The Little Mermaid." Rehearsals, rehearsals, rehearsals.
11. Choosing shower, tub, tile, paint, doors, windows (exciting to be at this stage, but lots of decisions!).
12. Special Olympics Youth Athletic Program and its big Summer Games next week.
13. Throw in some fun random activities like hiking Quechee Gorge or impromptu weekend in Portsmouth.
14. A 3-year old who no longer naps, but desperately needs to. (Simon, you're ruining my quiet time!)
15. The thousand of other little daily chores to keep this house running (somewhat) smoothly.

Welcome to Neverland

Our Neverland Birthday Party

Shawn created a treasure hunt complete with a treasure map puzzle. The hunters (known as the fairies and the Lost Boys) had to answer questions about the movie Peter Pan. If they answered correctly, they received another piece of the map. When they fit the piece correctly into the puzzle, it showed them where to go for their next clue. The final piece directed them to a treasure chest - full of swords and fairy wings. Shawn and I conceived the ideas for the games together, but he designed them all. He needs to go into the party planning business!

Jamie helps Simon open presents. It was an unseasonably HOT day for the first of May, and everyone was glad to have a chance to cool off inside.

Another party game was tossing stuffed crocodiles at Captain Hook's pirate ship. The girls all looked so sweet running around with their brightly-colored wings on. (And the boys were warned many times about the foam swords! Perhaps those should have been handed out at the END of the party!)

Simon and Clare blow out the candles on their Neverland cake. (Which was my baby, and came out quite cute, if I may pat myself on the back!)

I bought these t-shirts off eBay for the birthday girl and boy to wear.

Violet

Violet turned 15 months old at the end of April, and I intended to write a post to commemorate that milestone, but it took me three weeks to do so! (And now another week to actually finish it, since Violet will now be 16 months old on Friday. How life is flying by!)

Even though my four children are each only about two years apart, I tend to forgot much about certain stages of their development until I experience it again with the next child. In Violet's case, however, she has been my earliest walker, runner, and climber, so at times, I feel like I am starting all over again with this parent stuff. The child is all over the place, but with almost no common sense (or fear)! Jamie and Simon were both around 15-16 months when they started to take steps and were fairly cautious, and Clare was almost 2 1/2 years old (and extremely cautious). So to see this little scrap of a girl literally running around still amazes me. She looks too tiny to be doing that! And not only running around, but having definite ideas of what she wants to do with her time. Her current favorite pastime is to push the baby doll stroller around (usually with a baby doll in it, but she does not mind if the seat is empty). What she insists on is having some sort of "purse" dangling off her arm while she does so. The purse can range from anything as random as a stuffed animal monkey purse to one of my red Target reusable shopping bags. If that purse falls off her arm, watch out - she is one ticked little girl!

While Violet has been the most advanced of my children when it comes to gross motor skills, she is not a talker like Jamie and Simon were (and still are!). Jamie had about a dozen words at a year old, and I vividly remember at his 18-month appointment, the pediatrician asked me how many words he had. I answered that I stopped writing them down when we reached 100 words, so I wasn't sure. The pediatrician laughed and said that he typically looked for between 12 and 30, so Jamie was doing just fine! Jamie being my first, I had no idea how verbally-advanced he was. Violet has no actual words yet, but she is a babbler, a shrieker, a giggler, and clearly understands everything we say to her (definitely not a quiet child!). She is still very attached to me, but has quite the silly personality once she warms up to other people. Violet is at a delightful age, and we all love watching this little spunky person doing her thing!

Snatches of Conversation, Part 2

I love that I never know what is going to come out of children's mouths! Every day is an adventure.

(Yesterday, after dealing with four grumpy kids the majority of the day, Shawn gave them a talking-to about their behavior and Mother's Day. Then they came up to me one-by-one.)

Simon: Sorry, Mommy. Happy Mother's Day! I love my new dinosaur bucket in my bedroom.
Jamie: I'm sorry, Mom. Happy Mother's Day! I love you. (with a big hug)
Clare: I'm sorry you are mad at me.



(This morning as I am trying to do something with the rat's nest of Clare's morning hair.)

Me: Clare, how about if I do your hair half-up?
Clare: (Now getting upset) I don't want happy hair! I want angry hair!

Snatches of Conversation

(In the car)

Clare: Violet, stop hitting me with your baby doll!

Simon: Just deal with it.

Happy 3rd Birthday, Simon!

Simon celebrated his third birthday yesterday (pics to follow because Blogger and my laptop do not get along). Since his birthday landed on a Saturday this year, we had a big party on his actual birthday (and combined celebrating Clare's birthday, which was a month earlier) with family and friends. One of Clare's favorite characters is Tinkerbell, so we decided a Peter Pan/Tinkerbell/Neverland party was a great theme for the two kiddos. Our backyard was hopping with fairies and pirates!. Simon is the last birthday of the calendar year in our family, so he has been waiting patiently (and sometimes not-so-patiently) for the big day.

Simon has been congested and coughing for a couple weeks now. Since it coincided with the explosion of tree pollen and no one else was affected, we chalked it up to allergies. It could still have been allergies, but it settled in his chest, and come late afternoon, he spiked a high fever. Poor birthday boy! I ended up bringing him over to our Urgent Care clinic last night after the party. There was literally no other patient there while we were there, so Simon, Violet, and I were treated like royalty. Once the nurses and receptionists found out it was Simon's birthday, they hyped it up even more. Since his oxygen stats were a little low, his fever was 103 on Motrin, and his chest sounded raspy, Simon had a birthday chest x-ray, which showed that he now has bronchitis. After 24 hours on his antibiotics and nebulizer treatments, he is fever-free today and feeling so much better. He still has a barky cough, but that could linger another couple of weeks.

So that is why his birthday post is a day late! Simon was still able to enjoy most of the party, and he spent a lot of time today enjoying the plethora of dinosaurs and trucks that have now invaded our house. Happy Birthday to the sweetest 3-year old around!

Chance Encounter

Today was allergy clinic day, one of my least favorite activities in the world. Not only because my son has to receive two allergy shots and he usually has a pretty substantial reaction to the serum injected (the arm that receives the tree serum usually becomes red and swollen in a 2" diameter around the injection site), but because the medical receptionists are less than friendly to my large, often loud, brood. They obviously never had to wait in an unfriendly waiting room for at least 30 minutes post-allergy shots with four children. No amount of toys, books, snacks, or admonishments can keep four children from wanting to play, laugh, and possibly even run around for that amount of time. And today was no exception.

After staking our claim to a circle of chairs and cornering the only wooden beads toy in the waiting room, we began to wait out our 30 minutes post-injections. The kids scored about 10 stickers from various receptionists (they have learned to bypass the Allergy counter and scope out the counters at the other end of the waiting room, hitting up the sweeter women who work at Internal Medicine and Family Practice). Clare went to the bathroom twice. The most sour-faced receptionist spoke to me once. ("I just wanted to let you know that the doors open out, so I don't want your children playing in front of them in case they get hit." Which they weren't, and which we know since we've been in the clinic about a thousand times.) I had to bring Clare back to our area twice after she stared down two adults (both texting on their phones, which fascinates her).

After bringing Clare back the second time, we saw them walk in. Another mom with her four kids in tow - two girls, two boys. And I knew instantly that there was something "up" with her youngest daughter. (No, I am not politically correct.) They sat in the next group of chairs. This mom's three oldest (all probably older than my kids) sat dutifully on their chairs while waiting for their appointment to be called. But the little girl made a beeline for us. Specifically for me and Violet, who was clutching one of her baby dolls. She was fascinated with Violet's baby doll. I helped her and Violet work out an arrangement over who got to hold the baby doll when. That's when I realized that Clare was standing in front of the other mom, giving her that big wide-eyed stare. I called Clare back, and the other mom came over, too. I simply stated, "Clare has Williams syndrome." Now I am not one to make those pronouncements to random strangers. I have never felt the need to broadcast that information. Even when I know people are wondering what's up with my child or ask questions, I rarely bring it up. It's not that I am embarrassed or I feel like we have something to hide. I just don't feel like it's relevant or makes a difference sometimes. Clare is who she is. But with this mom, I sensed a kindred spirit instantly. And I was right. Her reply was, "Bridgette has Noonan syndrome."

You see these other kids and their families sometimes. On the playground. At the mall. In the grocery store. And I always wonder. I wonder what syndrome has affected their family. I wonder what their journey has been like to get to where they are. I wonder if they sometimes feel all alone in this world. I wonder if they look at my child and wonder the same things about us. I am glad I said something today because it gave me the chance to talk with another parent. To exchange some details about our daughters' syndromes (Noonan syndrome is also characterized by pulmonary stenosis) and even gain some new insight into other forms of therapy (she told me about pet therapy). Just to have the reassurance that we are not alone in this journey, and there are others out there who understand.

Beginnings

The addition project has begun. It is moving V-E-R-Y S-L-O-W-L-Y in my opinion, but we've had some rain, and now I think they are waiting for the building inspector to approve the footings before the excavator returns to backfill. Right now, our front yard is half-covered with lots and lots of dirt. But I can look out my kitchen door (which remains securely locked for the time being since it drops into a big hole) and kind of visualize what it's going to look like. I can't wait for the framing stage to see the addition take shape.

Spring is here to stay in NH, and our wall garden is growing. (Although we did have snow one morning last week!) All the bushes from last year survived the winter and are coming back up and the new tiger lilies that Shawn planted at the end of summer are flourishing. We had gorgeous hostas in the front yard that were in danger of being excavated, but Shawn was able to get those unearthed and transplanted to around our deck. I hope they survive their move and bloom this summer.

Jamie's travel soccer began two weeks ago, and I am already exhausted. Two evening practices and one weekend game per week is a bit much, in my opinion, but I have to admit that his soccer skills are taking off. Jamie loves it - soccer is definitely his sport. He played two seasons of baseball and did not want to do it this year. Too much standing around and waiting! He is a kid on the move. We are going to try to catch a Revolutions game this summer (New England's professional soccer team). I never thought I would be a soccer mom, but here I am. Shawn and I ruled that the two older children are allowed a maximum of two activities or we would go crazy. So Jamie is doing soccer and his school's play, and Clare is doing ballet and the Special Olympics Youth Athletic Program has started up for its spring session.

We are at that time of year when everyone has their doctor's appointments. Jamie and Clare both have follow-ups with the endocrinologist in the near future (Jamie's is tomorrow with blood work... yuck), all four kids have their pediatric visits (annual physicals for the older three and Violet's 15 months well-baby visit), and Clare had her work-up with the new cardiologist a couple weeks ago (more about that in a moment). Other than Violet (who is healthy, walking, babbling, doing everything she should be doing and nothing she shouldn't!), I have a list for each child of what I want to discuss. Jamie's headaches have gotten out-of-control again. He has had a headache or migraine every day for almost a week now. His migraine medication does not always work, and I feel like every morning he needs Tylenol to even get out of bed. His allergies seem to be under control now that he is on allergy shots, so I can't blame it on that. Sometimes I feel that his week is too stressful between school all day, homework, school projects, and soccer, but it is still not normal for a 7-year old to complain of a headache on a daily basis and end up vomiting fairly frequently. I am ready to sit down with the pediatrician next week and figure out where to go from here. I think that Simon is starting to develop allergies as well. He had eczema as a baby like Jamie did, and there is a link between having eczema and developing seasonal allergies. (Shawn, too, has battled eczema and has allergies.) Neither Clare nor I have ever had eczema and we are not affected by allergies. Thankfully, Violet has never had eczema either, so hopefully the girls are out of the woods when it comes to seasonal allergies! Ever since the tree allergens have started full-force (and where we live is on a high level right now), Simon has started with the runny nose, congestion, and shiner eyes. I am giving him a small daily dose of Zyrtec, but can't help but wonder if we're just going down the same road as we did with Jamie. Jamie did not have his allergy testing until age 5, and I don't know if they can test Simon sooner.

I took Clare down to Boston Children's Hospital two weeks ago for another echo, EKG, and to meet the new cardiologist. It was a 9-hour trip (3 hours of lovely Boston traffic and 6 hours of hospital time), but worth every minute for the hour we spent with Dr. S. Dr. S is a highly-recommended pediatric cardiologist who specializes in cardiac defects associated with genetic disorders and Williams syndrome in particular. The excellent news is that Clare's echo and EKG confirmed what her NH cardiologist had told us. Her main pulmonary arteries have grown a tiny bit and her gradient measurements where her stents are placed are minimal, between 10-18 mmHg. (To compare, when Clare was very sick as a baby, her PA gradients were in the 60s). Clare's aorta still looks fabulous with a pressure gradient of almost zero (pre-surgery, Clare's aortic gradient was 125 mmHg - this means that if Clare's systolic blood pressure reading was 100, the actual systolic pressure going across her aorta would have been 225 - you do the math, not so good!). This just illustrates how "healthy" Clare's heart is now compared to where we were five years ago. Clare's only real problem right now is that her distal pulmonary arteries are hard to see on an echo and measure, and those little arteries are still small and narrow. The only way (other than a cath) for the cardiologist to get an idea of how those pulmonary branches are doing is through a lung scan and measuring her right ventricular pressures. Her last lung scan in October was excellent (which means the blood flow to each lung is fairly even) and, at this appointment, her RV pressures were less than 2/3 systemic. They are creeping up again, since in April 2009, the pressures were less than 1/2 systemic, but for now, they are still at an acceptable level. So, in regards to Clare's pulmonary stenosis, we are going to follow up with Dr. S in nine months for another echo, EKG and lung scan. In the meantime, Clare is still off her blood pressure medication and her readings remain borderline. Dr. S went into a very long, very thorough explanation of why sometimes a person may need a high blood pressure to ensure proper blood circulation throughout their body (an explanation which made a lot of sense to me and one that I had never heard before - this is why we switched cardiologists!). There is a slight possibility that Clare could have renal stenosis (narrowing in the arteries leading into her kidneys), so the next step is to have a renal ultrasound in a couple months. In the meantime, we will continue her off her blood pressure medication and continue to have the school nurse take measurements once a week and then fax the measurements to Dr. S. So there is your medical lesson for the day. Whew!

Fresh Air

We are stagnant during the winter - maintaining some semblance of preserving our sanity while surviving the cold, snow, wind, flu, colds, and stomach viruses. But now that spring is around the corner, there is lots of change in store for us.

When we bought our house four years ago, Shawn and I discussed adding a double-car garage. We have the space for it, but always envisioned this as a project down the road. When we were pregnant with Violet, we dreamed about how awesome it would be to, not only have the garage, but add a master bedroom and bathroom on top of it. Once Violet was here, in her own room, and Simon moved into the bedroom with Jamie and Clare, we thought wouldn't it be wonderful to cut our existing master bedroom into two bedrooms. Then we could have a boys' room, girls' room, nursery (you never know!), and a guest room. As the kids get older, they could eventually have their own rooms. Dreams, dreams, and more dreams. Some dreams do come true! Any day now, they will be breaking ground for the addition. It's going to have everything we wanted - two-car garage, master bedroom, walk-in closet, master bath with a jacuzzi tub (that's mine!), mudroom, and our old bedroom will be converted into two rooms. We are blessed in so many ways, but we also have so many challenges in our life and have been thrown so many unexpected curve balls, that I am still in some disbelief that this is actually going to happen just like we dreamed it would.

We will be registering Clare for kindergarten next week for next fall. There is still so much uncertainty about exactly how this is all going to go. Clare's preschool teacher has been awesome discussing it with me as things come up, but I am such a planner and organizer that I hate the unknown part of it all. We, as parents, have definitely decided we want Clare to go to our district school, which is one of the best in the district. The only reason why I was not sold on this idea is because the kindergarten program is only a little over two hours a day. Right now, the special education team is planning on including Clare in a typical kindergarten classroom, so I was concerned about her being pulled out for services three hours a week. That's almost a third of her time in class. We could fight to have her placed in a full-day program at a different school, but I don't want to take her out of our district school and then transition her again in first grade. It's so confusing sometimes! You want to make the right decision for your child, but I honestly don't know what the right decision is. I want Clare to be included in a regular classroom, to be with the children she will be in school with for years, to have the chance to make friends. She needs all her special education services, but she also needs to be in her kindergarten class. She can spell her name now (drilled into her! C-L-A-R-E!), but has difficulty forming letters (part of that difficulty with fine motor skills), so she cannot write her name yet. She knows all her colors after months of working on it, but is still sketchy on shapes, numbers, and letters. She has made tremendous progress this year, but I think of where Jamie was when he was going to kindergarten, and Clare has a long way to go. I don't expect her to be where Jamie was at that age, but she is going to be with other children who are, and I just want her to be able to keep up. Clare has loved her preschool and has done so well in her self-contained classroom. I am scared of the unknown of placing her in a regular classroom. This is where the Mommy-protectiveness is kicking in.

Jamie was invited to join a travel soccer team this year. He was asked to play last year and we said no, feeling that six was too young to be on a travel team. After playing a season of outdoor soccer this past fall and currently wrapping up four months of indoor soccer, Jamie has demonstrated both that he loves soccer and that he has soccer skills. When his coach brought up the travel team again, at first we said no. After some thought, though, we decided to give Jamie the choice between baseball or soccer (he has played t-ball the past two springs). Jamie immediately chose soccer. It's a bigger time commitment than we've been used to, but I know it's going to be a great experience for Jamie. He has a terrific soccer coach and will be playing with many of the same players on his indoor soccer team. Plus it forces us to not plead tiredness and get some fresh air two nights a week after dinner and run around!

After watching Jamie play sports for two years, Clare is excited that it's finally her turn to have an activity just for her. She started taking official ballet classes two weeks ago and loves it. To test the waters, I signed her up for a little "Creative Movement" class at the YMCA over the winter. The girls do a little bit of ballet, then basically get to free-dance. She did this class for a few months. She paid attention, took it seriously (for the most part!), and loved every minute of it. Those were my three conditions she had to meet before I signed her up with a ballet studio. I know Clare will not be a ballerina. I know she will not be able to do everything at first, but I was more concerned that she would not be a distraction in the class. Clare did awesome, and I am so proud of her! (Not to mention that she looks so stinking cute in her leotard!) So we signed her up with a local ballet studio for a weekly class. She is in a petite ballet class with other 3-5 year olds and will even be in a show in June. Her class are playing the part of fish in The Little Mermaid. I was able to watch her class perform their little solo (it's literally about two minutes long!) last week, and thank goodness I had a squirmy Violet to also occupy my attention or I would have started crying. Clare was grinning away, doing her moves (don't ask me what anything is called), and so precious! She truly loves her dance.

And thankfully Simon and Violet still go with the flow! (Although Simon has stopped napping, which really ruins my quiet afternoons!) Some days are spent running around like crazy with the older kids' activities, that I cherish the calmer times I have with my little two. They are so sweet and their needs are so simple! I know our calm days are numbered in the near future once the addition gets under way!

My Girl is Five Fingers!

Happy 5th Birthday, Clare! It is unbelievable how much your life can change in an instant, and ours surely did five years ago today at 8:52pm! You have brought us so much joy, happiness, and love these past five years. All our challenges, struggles, bad days, and rocky roads have been worth every second of having this sweet, often silly, person in our lives. We love you, Clare Bear!

Dress-Up Diva

Clare loves to ham it up for the camera and has certain poses that she strikes. Auntie Erin gave her this beautiful dress for Christmas (with a matching baby doll dress), and Clare had fun prancing around in it.

Leprechaun Traps

Even though we don't really celebrate St. Patrick's Day in our house, Jamie and Clare came home from school on Monday and Tuesday with ideas of setting "leprechaun traps" throughout the house. Jamie hoped that he would be able to catch a "real live leprechaun" (reporting that one of his classmates claimed he has a friend who caught one), and Clare sincerely hoped that, if they did not catch a leprechaun, they might at least catch some chocolate coins.

Jamie set about last night with his traps. His most elaborate trap involved placing a fake coin in the bottom of a tall cup. He then leaned a ladder against the cup and placed a sign on the outside that read: "Gold inside!" The sign would entice the leprechaun to climb the ladder, then he would fall into the cup attempting to reach the coin. Another piece of paper acted as a cover so the leprechaun could not escape. Genius! As Jamie set his traps, he worried in all seriousness that he "hoped the leprechauns knew English." I assured him that, to the best of my knowledge, leprechauns were typically Irish folk and did indeed know English.

Alas, that tricky leprechaun (or "Lucky the Crafty Leprechaun" as his mocking return note read) got the best of the kids. He not only took Jamie's coin, but was able to escape the trap and vanish again. He was kind enough, however, to leave some chocolate coins around the house, which did appease the leprechaun-hunters.

My Old Friend Spring

Spring is coming. The birds tweet loudly in the morning, the temperatures are rising into the 50's some days, and there are shoots in my garden starting to break through the dirt and rocks. We've had some pleasant afternoons playing in our yard and street. Everyone is breathing in the fresh air, and I am hoping that winter is truly over and that the fresh breath of spring air will push the rest of the nasty germs away.

I am looking forward to spring, but there is always some illness that strikes our family at the end of March/beginning of April every year without fail. 2007 and 2008 both brought stomach bugs that hit everyone and landed Clare in the hospital for a couple days. In 2009, we were hit by a stomach virus again, but Clare thankfully avoided the hospital for that one. Instead, she was having numbness and tingling in her arm and her A-V fistula and aneurysm were diagnosed, which resulted in her summer surgery. 2010 is going down the same path unfortunately. Our house has once again been hit by some nasty stomach bug (why do we seem to avoid it all winter and then get hit right when the sunny days are beckoning us?). So far, Violet had it fairly easy, I had a severe case (with a few hours in the hospital for dehydration and severe abdominal pain - nothing that a little IV fluids, morphine, toradol, and zofran couldn't cure!), and now Simon has it (he's sleeping it off as I type). I am praying that Clare, Jamie, and Shawn escape unscathed, but I just don't think that's going to happen. Thankfully, it's a short stint (about 12 hours), but it's rough. I am praying that if Clare does come down with it, she can get over it quickly and without becoming dehydrated.

Tomorrow is Clare's six-month cardiology appointment. I have been so busy being sick and taking care of sick kids that the butterflies have not set in yet. I know they will be there at 8am (the time of her echo). I wonder what tomorrow will bring. The school nurse has been monitoring her blood pressure twice a week and her numbers have been slowly creeping up. Add that to the fact that at Clare's last appointment, the cardiologist talked about possibly doing a cath in the near future just to see what was going on. Her last lung scan was good, so a decision has been held off until tomorrow's appointment. I always count my blessings, and the fact that it has been 2 years, 7 months since Clare's last cath is a HUGE blessing. I never thought we would get to this point, but here we are! So those little butterflies tomorrow better be good spring butterflies!

My Guardian Angel

Shawn is usually out-of-state two days a week. On those days, it is up to me to get all four kids out the door at 7:15am to drop Jamie off at school. These mornings are typically somewhat chaotic - the only one who is consistently dressed and breakfast-fed with teeth-brushed is Jamie. The remaining four of us are usually in various stages of pajamas and I have doled out easy-to-grab morning snacks and sippy cups to tide the younger children over until we return home.

This morning was no different. I woke to my alarm and checked out the window to see what the weather looked like. We had been forewarned of a snowstorm, but no snow had come overnight. The driveway and street were clear and, equally clearly, no snow had fallen on our brown grass. I jumped into the shower and then began the wake-up-children-and-out-the-door shuffle. When I arrived at Jamie's school, I pulled up a little past the front door, which is the polite protocol at Jamie's school, so other parents can pull up behind you to drop off as well. We were running later this morning and at the school at 7:39am (they are supposed to be in by 7:40), so I was not surprised I was alone in front of the school. But I pulled up farther anyway in case another car came after me or the school bus was later as well. Jamie scrambled out of the car. I watched him go up the steep steps to the front doors, then lost sight of him as he entered the building. I rounded the corner taking my normal driving route back home.

As I neared the next intersection, though, I had an uneasy feeling. Something just crept into my mind and unsettled my stomach that something was not right. I could not pinpoint what it was, but I just didn't feel right. I have dropped Jamie off at school about twice a week for six months now, and this is the first time I have ever felt like this. As I turned right at the next set of lights to head home, I thought about driving around the block back to the front of school. I argued with myself that I was being neurotic, but I couldn't shake that "not-right" feeling. So despite feeling somewhat idiotic, I looped onto the alley-street right along Jamie's school. This street runs past the rear parking lot of the school. As I drove past, I saw that the parking lot was deserted, which is unusual. I turned in front of Jamie's school again and as I pulled in front of the building, that's when I saw him in the corner of the stairs. Not inside the building as I had thought, but tucked into a corner where I could not see him from my drop-off spot on the street, vainly ringing the school's doorbell over and over. When Jamie looked up and saw me coming out of the van, he ran down the stairs. With tears in his eyes, he said that the school was locked and no one was answering the bell. I frantically tried to figure out what I had missed. Our city was having a State Senate election that day, but I didn't remember the Monday notice saying anything about school being cancelled. Jamie's teacher's father had passed away the previous week and his funeral Mass was being held today, but I doubted the entire school would be closed for that. Another mother pulled up behind me with her two girls, but she didn't know why the school was closed either. Since there was nothing to do but go back home, I called a friend on the way home whose children also attend the school. She explained that it had been on the news that morning that most of the towns in our area had closed schools because of the impending snowstorm.

In the three years my children have been in school, never have the schools closed in case we get snow. There have been many mornings with snow on the ground where not even a delay has been called. So I did not feel silly about assuming there was school when there was no snow overnight and it was not snowing in the morning (and incidentally, it did not really start snowing until close to 2pm anyway today and didn't start to accumulate until closer to 3pm, when school would have been done, but I digress). But I still feel sick to my stomach when I think about what if I had just driven home. At drop-off, I usually see Jamie enter the building (there is always an older student on the inside who has door duty in the winter to open the door). When Jamie disappeared from my view, I assumed he had gone into the school. All I know is that our guardian angels were looking out for us today. I feel sick when I think what would Jamie have done if I truly did just leave him outside a locked building in the city? Where would he have gone? The central fire station and police department are right down the street from his school. Would a 7-year old have the wisdom to walk down there? Would he have waited on the steps in agony - scared that the door was locked and his mom had driven away - until that other mother arrived? It makes me want to throw up. I have thanked God so many times today for giving me that unease, that certainty that something wasn't right, even though I didn't know what it was. That I trusted my gut and not my brain telling me I was being stupid and turned around. That I learned an essential lesson today to be absolutely 100% positive that Jamie has walked into his school and who cares about polite protocol and pulling up to the corner and other parents being ticked off that I was parked right smack in front of the doors. I thank God that He watched over us today and kept us safe. It turned out to be a fabulous day. Not a very good beginning, but it turned out to be one of the best days we've had in a long time.

Penguin Plunge

Thank you to all who generously donated or came to witness Shawn and his dad Mike participate in the Penguin Plunge for Special Olympics. Together, they raised over $2,000! It was a chilly day (25 degrees, and that is NOT counting the wind, which there was plenty of), but no complaints from Shawn and Mike as they ran into the Atlantic Ocean. We are so proud of them and what they were able to accomplish to help thousands of kids, like our Clare. Thank you all! (Shawn is in the black shirt and Mike is wearing the sweatpants with suspenders - don't ask!! There were all kinds of creative costumes that day!)