Toddler Quirks

Violet is an enigma. Although she babbles all the time, she is only now starting to put complete sentences together at 28 months old, and those are fairly limited in terms of vocabulary. So when she plays by herself and babbles, I have no clue what's going on in that little head of hers.

Two mornings a week, when Simon is at preschool, Violet has the house to herself. I usually employ this window of time to get some chores done since Violet (generally) loves having the run of the house and the toys. I love to hear her "talking" to herself while I clean or fold laundry. This morning of the photos (before the week of rain hit us), she was going back and forth between the four open windows in the living room and dining room. I am not sure what exactly she was doing, but after about 20 minutes, she moved on to another activity. Then I saw all the open windows and the creatures she had left there. I think they were guarding the house for me. I left them there all day because they were so cute and it reminds me of the little unknown joys that children bring.

Violet also has a fondness for having a container of "stuff." Usually little baby dolls from the dollhouse, Littlest Pet Shop animals (her favorite being the tiny birds, which she calls "tweet tweet"), and other sundry odds and ends. Usually, she steals Clare's ballet purse or some other purse to carry her loot in. But on this day, I found her walking around with her prized possessions in a cage. Slightly odd, but very endearing. Sometimes I share the sentiment that life would be easier if I could just put all my little darlings in a cage!

Boys V. Girls

Since we do not know the sex of this baby, we have had many queries about if we "think" we know what we're having. And, of course, the answer is NO! How could we possibly predict that?? But the debate rages on.

Last week, one of the neighborhood boys was playing on our swing set. He is 5 years old with an older brother. He asked me what the baby's name was, and I told him I did not know because we didn't know if we were having a boy or girl. His response was: "Oh, you're having a boy. You have a lot of girls already!" I thought it was cute that to him (only having a brother), two girls was "a lot of girls." I didn't point out that we also had two boys since apparently this was not a lot of boys to him! Then this morning, Simon told me the baby was a boy because "we already have a girl baby... Violet! We don't want two girl babies!" So maybe the baby is a boy??

Weirdly enough, I do not have pregnancy dreams. I have not dreamt of labor, delivery, or whether the baby is a boy or girl. These days (or nights rather), I don't think I am asleep for long enough stretches to even have dreams! And just when I thought we were settled on names, it turns out we are not. Our boy's name is decided (right, Shawn?) but we're still throwing out girl potentials. Nothing has grabbed us and screamed THIS IS IT! I felt like with each of the older four children, as soon as I heard what is now their name, I knew that was the perfect name. I just don't have that feeling this time when it comes to a girl's name. So my prediction is that this baby is a girl and will not have a name until we see her!

Today marks 37 weeks, and we are all so eager for this pregnancy to end and meet Baby #5!! This is the latest in the "summer" I have been pregnant and have the cankles to prove it.

Embraceable

Embraceable

A film about Williams syndrome.... the trailer alone made me cry.

You have to check it out.

The Personality

"Cocktail Personality" - One of the first phrases we heard six years ago to describe individuals with Williams syndrome.

Even the Wikipedia definition of Williams syndrome contains this statement: "Most individuals with Williams syndrome are highly verbal and overly sociable, having what has been described as a "cocktail party" type personality, and exhibit a remarkable blend of cognitive strengths and weaknesses."

In the past few months, Clare's "cocktail personality" has really been coming out full force. She talks to EVERYONE everywhere. She loves to say "hi" to every person she encounters. But she just does not say hi. She likes to add something personal, such as "Hi, guy!" or "Hi, lady!" Recently, at Jamie's soccer practice, she passed one of Jamie's teammates - a boy who has pretty long hair for an 8-year old boy. Clare brightly chirped, "Hi, girl!" as she waved and walked by. That prompted our discussion about how saying hello is okay, but we can leave it at that. If we do not know the person or do not know their name, we can just say "hi." Nothing else needed to be added. It's weird the conversations you have with your children and the rules you have in place that you never dreamed you would need.

I love that Clare is friendly and outgoing. That she smiles at everyone and wants to brighten people's days. That she enjoys striking up conversations with just about anyone. But I admit there are many times I cringe knowing what's ahead, the scenarios I can see coming - such as standing in line behind the woman with purple spikes at the OB's office ("I like your purple hair!") or passing the overly-made up woman at the grocery store ("I love to wear make-up like that!") or her new favorite is telling the entire world that her mom is going to have a baby. (At least she doesn't try to pull up my shirt to SHOW everyone like Violet does!) These days, we are receiving ample opportunity to talk about boundaries, personal space, and appropriate conversation.

More Photos!

Clare's 6-year photos and Simon's 4-year photos. Once again, I love that the photos completely capture their individual personalities!

Clare was quite the ham for her "photo shoot," and I ended up with about 20 amazing pictures. Very hard to narrow it down! Simon was being goofy and didn't want to take any direction, but the photographer was amazingly patient and able to capture some great shots. I am very pleased with my new wall hangings!

Photos Photos

I brought Jamie and Violet to have their professional photos taken a couple months ago around their birthdays, and today I am taking Clare and Simon, so I wanted to share them. (I will share Clare's and Simon's once I have them.)

The last time I took the three older children to have photos done was two years ago. (I did do Violet's at one year old.) With the age of digital photography, we have thousands of photos - and thousands of REALLY good photos. So I let myself skip a year last year. But I still love the professional shots to decorate our walls. I love photos of my children and family and would rather see those around my house than any other decoration. I regret not taking Jamie, Clare, and Simon last year, although it gave me a chance to enjoy their beautiful 6-, 4-, and 2-year old photos for two years!

I debated attempting the group shot today, but being 34 weeks pregnant and having no clue what to put them in to coordinate, I am wimping out on that. Plus if I wait 6-7 months, I can get one with all five children (and maybe even a family portrait, since Simon was 11 months old the last time we did that!). But these are Violet's stunning 2-year photos and Jamie's awesome 8-year photos. I love that they totally capture each child's unique personality.

Choices

We recently made a decision in our life. Nothing earth-shattering or even something that in a few years we will really think about. But, in the moment, this decision was eating me up for some reason. To me, it's all about leaving the comfort and security of a place I know well, people I truly like, and a situation I am used to, familiar with. To begin again in a new place with new people, but one that will be easier for us logistically and financially and hopefully make our life slightly simpler.

There are always choices to be made as a parent. And I struggle constantly with whether or not I am making the right choices. Some of these choices are so tiny in the grand scheme of life. I remember how much I agonized eighteen months ago about putting Clare on the bus to school. I went back and forth in my mind, with Shawn, in my mind again. We ended up letting Clare ride the bus to school because it truly was what worked out best for our family at that time, and it turned out to be a non-issue. In fact, Clare loved every minute of it. Then there are the huge decisions to be made when it comes to our children's health, particularly Clare's. In some ways, though, those decisions are easier to make because you weigh your child's life against the risk of a procedure or other medical decision. And your child's life wins every time.

When I attended my Moms' Day Away, we talked both in our large group and small group about cutting out the extras from our life. Those little things we do or traps we fall into that really make our life more complicated than it has to be. Does my child have to play two sports plus learn to play an instrument? Do I have to empty all the hampers every day or will the earth continue on its rotation if I let the laundry pile up a bit? Do I have to be president of the PTO or even attend every meeting or is it okay to simply be one of the parents who bakes for the teacher's luncheon once a year? As our family grows in size and busy-ness, I am slowly coming to peace with the fact that I cannot do all I want to do. I cannot be everything I want to be. And I think I am okay with that. Because it makes me less stressed and a happier wife and mother. Which makes my husband and kids happier. Which makes life so much sweeter!

Happy 4th Birthday, Simon!

Happy Birthday to our spunky, goofy, cuddly, new four-year old Simon Joseph! It has been an awesome year watching you grow in leaps and bounds. You have become a great playmate to all your siblings. You love playing with Violet in the mornings, and I often find myself with two crazy kids concocting all kinds of interesting schemes! You enjoy the afternoons with Clare, playing computer or board games. Once Jamie comes home from school, the two of you will hole up in your bedroom with Legos or Bionicles. But your favorite activity is snuggling with me on the couch reading I-Spy books. You cannot get enough of them and can find the hidden items quicker than Mom can. I love that I have a buddy to eat carrots and hummus with, since none of the other kids will touch them! Your love of learning, activity books, mazes, and games is insatiable, and I hope you always have that love of using your mind like that. You are such a joy to us, Simon, and we love you so much! Happy Birthday!

The Kiddos, Part 2

Simon has one month left of his first year of preschool. On the whole, it has been a good year, and he has enjoyed going to school. After much deliberation, we made the difficult choice to not reutrn to the same preschool next year. The beloved 4-year old teacher is leaving after so many years at the school, and she was really the incentive behind my willingness to stick it out for another year (it's a bit of a drive). We toured a Christian preschool closer to home that some of our friends' children attend and have decided to make the switch. Simon seems to accept this decision without any complaint. Although he likes preschool, he has not made any "best" friends there and does not seem particularly attached to the school. I am sad to say goodbye forever to the school becasue Jamie did have such a great experience at this school, yet at the same time, I am not sad to say goodbye to the drive and the craziness it adds to our schedule. I am all about simplicity (especially with a new baby on the way!).

Violet has had a rough six weeks with illness. We were all sick with a cold at the end of February. However, Simon, Violet, and I could not shake the cough and congestion. Both Simon and Violet ended up with ear infections, and I came down with bronchitis. By the time I brought Violet in, her ears were so infected (as in pus bubbles ready to pop! ewwww... gross!), that the goop was coming out of her eyes because there was nowhere else to go. So the doctor started Violet on a course of augmentum before things got worse. Unfortunately, we now know that Violet shares her dad's and older brother's amoxicillin allergy. She ended up in hives from head to toe. As soon as I saw them, I knew instantly what they were from (having dealt with the same thing with Jamie when he was two). Since Violet was on day eight of the antibiotic when she broke out in hives, the doctor felt it was okay to not prescribe a different antibiotic, but absolutely stop the augmentum. Two days later, Violet's hives became worse, her breathing was slightly labored, and her face was starting to swell, so it was off to ER. She still had a double ear infection, so after some monitoring and oral steroids in the ER, we were sent home with prescriptions for more steroids, bendaryl, pepcid (apparently an antihistamine as well) and zithromax (another antibiotic). A week later, we followed up with the pediatrician again. Violet STILL had a double ear infection. And she still had the horrible rash from the allergic reaction. I think she was more miserable from the rash than the ear infection. She needed benadryl at night to go to sleep because she was scratching herself until she bled. Not to mention that antibiotics cause diarrhea, so now I was pumping her full of probiotics as well, and we had to add a medicated diaper cream to the mix. So now Violet was put on omnicef, a third antibiotic. Unfortunately for Violet once again, there is some cross-sensitivity and 10% of people allergic to amoxicillin/penicillin are also allergic to the class of drugs that omnicef is in. Violet's reaction was not as severe to the omnicef, but her rash worsened. She completed her course of medication, suffered through the rash, slept on lots of benadryl, and I think we're in the clear now! Everyone has been healthy for a couple weeks now. (Oh, I better not have just ruined anything!)

We are all looking forward to spring, Easter, Simon's birthday, and Jamie's First Communion!

The Kiddos, Part 1

There are times when I feel guilty about just updating about Clare. Yes, the title of the blog is Clare's Journey and the ups and downs associated with Williams syndrome is a big part of our life, but the blog is really more about our family and whatever else is on my mind, so I always feel the mom-pressure of dividing the blog attention evenly. So here goes!

Winter indoor soccer is a wrap, and now we have moved on to spring travel soccer. I love that Jamie has found a sport he truly loves and is skilled at, yet it is always an adjustment to everyone's schedule to have soccer three times a week. His first practice was last night, and, since Shawn is away this week, it was a late night getting everyone into bed, so we all paid for it today! (Extra grumpies all around.) In school, Jamie is busy doing the school play again this year. I am not sure how thrilled Jamie is that they are performing Cinderella this year (he is one of the mice), but he enjoys doing the play, and I hope he continues loving the theater like his parents do. Shawn and I talk hopefully that, in the future, we can be involved in a community theatre together. It definitely brings back memories of our college days!

Spring allergies are having an impact on Jamie and his migraines. Even though he still receives monthly allergy shots, when the allergens start to emerge full-force, Jamie still reacts to it. Last weekend, we knew allergy season had officially started because Jamie fell asleep before dinner on Saturday evening, and, on Sunday, I went into his bedroom in the mid-afternoon to find him sound asleep on his floor! So I knew his allergies were knocking him out. We added a daily dose of Zyrtec to his schedule to get him through the next couple of weeks. I hate seeing him suffer like this. I never feel like it's "fair" that an eight-year old struggles to just get out of bed some mornings. In my mind, he should bounce out of bed full of energy every day. Save the struggle for when he's old like his mom!

Clare is done with all her educational testing between the Boston WS Clinic, visit with Dr. Mervis, and her three-year evaluation in the school district. We have a meeting with her school next week to discuss the results, amend her IEP a bit, and maybe chat about next year. Clare will have her official IEP meeting in June where we will formalize the plans for next year. She continues to love kindergarten and is making progress. Recognizing letters, counting, the concept of rhyme, letter sounds, and forming letters and shape is still slow, but I don't want to inundate her with constantly making her "work" on her letters. There was a period a couple months ago when Clare did not want to go to school. She would cry when we worked on the alphabet and even referred to herself as "stupid." The psychologist in Boston picked up on her frustration in this area as well, so we have backed off at home. Dr. Mervis recommended the Handwriting Without Tears program, which we have not started yet, but I also wanted to explore options for Clare that were fun. Not just sitting at the table and drilling it into her. Which led us to hippotherapy, another suggestion from Dr. Mervis and one we have considered on and off over the past few years.

Clare started hippotherapy three weeks ago and is using it as a form of occupational therapy. Stating that Clare loves riding the horse is a huge understatement. She tells me often that she misses Nori (the horse she rides), and I have to wait until lunchtime the day of hippotherapy to let her know that we are going or it's nonstop asking when are we leaving. While riding, Clare works on skills such as dressing, hand-eye coordination, drawing and writing, some vision therapy, and general core stability and trunk strengthening. It is a workout for Clare. I don't think she could ride for longer than the 30-minute session, but she loves every second of it and is always sad to say goodbye to Nori. The OT has recommended we also take Clare to see an opthamologist who runs a vision therapy specialty practice (coincidentally the same opthamologist that Clare's early intervention OT recommended when she was about a year old). Clare does have some tracking and visual scanning issues, which the OT has really been able to see when Clare is riding (her eyes lose focus when the horse turns a corner - almost like the eye muscles cannot keep up). The OT warned that this can lead to some problems with scanning when Clare learns how to read. I feel that just as we are starting to get something under control, something else pops up! But, then again, this is also a problem we have heard about throughout the years, so perhaps we should have done something earlier about it.

Sometimes I get caught up in the frustration of the educational process and forget to take note of what Clare is doing in her everyday life. When I think about it, she really has accomplished so much over the past few months. She rides her tricycle nonstop now without any help. She is like a little speed demon on it. She does not seem to mind that other kids her age are riding bikes. She enjoys the freedom and independence of being able to get on and off the trike by herself and go. Another small victory (but also huge) is that she is independent 95% of the time in the bathroom now. This is such a success because, again, it is another assertion of her independence and self-help skills. She no longer regularly announces that she has to go - she just goes. Shawn installed a bar on the wall for her so she can get on and off the toilet by herself. The only thing I help her with is buttoning her button if she is wearing jeans! She can undress herself now. She still needs help getting dressed (it's hard to maintain balance while pulling pants on - I have trouble with it!), but can pull her socks on now and often can put her shoes on, too. When I get discouraged, I remember where Clare was six months ago and can definitely see the progress!

Hello, Spring!

I think spring is here. I know the rain is here. And travel soccer, growing tulips, window washing, ballet recitals, play practices, and I am in my third trimester!

I hit the 30-week mark last week in my pregnancy. Shawn and I decided not to find out the sex of the baby for the first time. We figured Baby #5 was a good time to do something different! With two boys and two girls already, we refer to this baby as our "tiebreaker." We have finally settled on our names (I think?). I really should not complain about my pregnancy because I am a low-risk preggo mama to begin with, but I have definitely entered the stage of infinite heartburn, back pain, swollen ankles (thank goodness flip-flop weather is around the corner), and insomnia. I am pretty sure the remaining 10-12 weeks will fly by, though, since the long drag of winter is over.

Two weeks ago, I attended a Moms' Day Away hosted by Faith and Family, a magazine and blog dedicated to Catholic living. I have been a fan and subscriber of the magazine for years and reader of some of the blogger moms for just as long. It was such a treat to not only get ten continuous hours away from the nitty-gritty of being the mom but to spend the time with two friends, meet some of the women who have inspired and strengthened my vocation as a mother over the years, and enjoy a day of prayer, reflection, laughter, and food I did not prepare or cook. That one day focused on my motherhood reinforced for me that this is where I belong. Even on these nights when I am exhausted from three days of solo parenting, battled three of my four children to get into bed (who are more exhausted than I am, and I realize this is the source of their turning into little hellions), and feel like my chest is on fire from heartburn and my back hurts so bad I wish a pregnant woman could take ibuprofen or vicodin, I am still exactly where God wants me to be. I hold onto those thoughts, feelings, and reflections and thank God that I am so blessed to know where I am supposed to be in life. That I am not "lost" or "searching." I still have lots of work to do on my vocation as a Catholic wife and mother, but I know I am going in the right direction.

So I wanted to update on all the children, but it's time to end.... the heartburn sends me over the edge most nights. I never get heartburn in every day life, just in my third-trimester pregnancy life. Nothing soothes it really. The only "cure" is to go to bed and, when I awake, enjoy my six heartburn-free hours before it rears its fiery head again after lunch. Although a bowl of cereal does take some of the sting away. Which is where I am headed.

Happy 6th Birthday, Clare!

Six years ago today, we were waiting and waiting for our first baby girl to arrive. You were already nine days overdue. The Easter outfit I purchased for you sat waiting in the nursery (and was now deemed your Baptism outfit instead) since you did not arrive by Easter (which was five days past your due date). I was big, tired, cranky, and all done wiith being pregnant. We scheduled an induction with my OB for this date, but I just knew you would arrive before then. Well... you did not.

As we checked into labor and delivery at 7:30am, the nurse informed us that we should have received a phone call postponing the induction since the L&D floor was full. I almost lost it then. There was no way I was going back home. My baby was coming out TODAY! Once the nurse realized I was nine days overdue, they set me up in a teensy curtained area in pre-op. There was barely any room for Shawn to sit never mind the four anxious grandparents milling around. I refused to let my OB break my water in that little space, but the Pitocin was started, and the induction officially began. What a crazy day! (As if any labor and delivery is not crazy!) Things went slowly, I finally was transferred to a real room with a real door that closes and a real bed. I kept making progress, but slowly. I was at 7cm for what seemed like days and days and days. But I kept telling everyone that she was coming. I knew she was coming. At 8:30pm, my dad had to leave to catch a plane for a business trip, and both the nurse and OB told him this baby was not coming before midnight. So he left. But I knew she was coming. They kept checking me and telling me I was only at 7cm and not to push. I was on no pain medication, and I just knew she was coming. Those were the words I kept saying over and over. "She's coming, she's coming, she's coming!" The last time, those words were screamed at the top of my lungs. My OB was down the hall, and (she tells me after the fact), she said, "That's my patient!" and ran in. Sure enough, you were coming. When you were ready to come, you didn't care that I was not fully dilated, that no one else was prepared for you to be delivered (except your mother!). 8:52pm and Clare Therese was born!

I fell in love that day with my first baby girl. The nurses could not get your temperature up even under warmer lights, so I begged to hold you skin-to-skin and nurse you. We cuddled under the blankets, you latched on as if you had been nursing forever, and your temperature shot right up. The world was a perfect place, and we were on Cloud Nine. For about 16 hours.

When I think back, I wish I could hold on to those 16 hours of ignorant bliss forever. When our two-year old son came to the hospital the following morning to meet his baby sister. When I thought over and over what a perfect little family of four we had become. When I could not believe I had been so blessed with a gorgeous son and daughter. When all was right in my little world, and I felt so much at peace.

Then we heard the words "she has a heart murmur." And bigger, scarier words were thrown around - pediatric cardiologist, echocardiogram, pulmonary valve stenosis, congestive heart failure, sudden death. Over the next few days, then weeks, our entire world was turned upside down by what is now an everyday part of our life - Williams syndrome and congenital heart defects.

But there is a happy ending. Because we have you, Clare Bear. We have had your beautiful, loving, joyful person in our lives for six years now. I would walk this road all over again. How could I wish it otherwise when it would mean I would not have you? I love you so much, my sweet girl. Happy Birthday!

Hockey Girl

I love that I can walk into any room in my house at any given time, and I never know what I might find. Today I found Violet geared up playing hockey! (She did this all by herself with Jamie's pretend hockey stuff.) Priceless! This is definitely one of the joys of motherhood.

Fighting Everything

Clare is 100% recovered from her surgery and anesthesia. Well, may 95% recovered because she still has the rash from the allergic reaction, but it does not seem to be bothering her anymore, so it's hopefully on its way out. I am taking her to our NH dentist on Friday for a quick follow-up. Still waiting to hear back from the allergist about their thoughts. They were going to "round table" Clare this week, but we know how the waiting game is played.

Meanwhile, spring has been teasing us with little thaws and warm-ish days, but then we got hit with two smaller snowstorms over the weekend. I believe I can speak for almost everyone in New Hampshire that we are ready for winter to be over. This winter has been a nightmare for illnesses. I don't think one day has gone by this entire January, February, and now March when at least one person in our house has not been sick. We have battled colds, coughs, stomach bugs, infections, all kinds of yuckies. Right now, Simon and Violet both have ear infections and are on antibiotics, and I am heading down that path. They started as regular colds that are settling in for the long haul. Simon is halfway into his course, so he is feeling a lot better (and we feared he was developing pneumonia again, so we were relieved to hear it was "just" an ear infection). Violet was diagnosed with a double ear infection and conjunctivitis just last night, so she is still pretty miserable. My OB instructed me to see my PCP, so I have an appointment today. I am praying that the doctor will see the wisdom in putting me on some antibiotics as well. I very rarely take any prescription medication at all and have been running an off-and-on fever, so I am hoping that for the sake of the baby (and the miserable mom), they will prescribe something.

We are surviving with lots of rest, television, and cough drops. Blah....

Quick Update

Clare is home from the hospital. The surgery went well, and the dentists were able to save her tooth. She had a bunch of work done and is doing well mouth-wise. However, she is having a reaction to the anesthesia (which happened after her last surgery in July 2009 as well). Nothing major, just uncomfortable. I was fortunate to get an appointment with the allergist yesterday evening, so now we are going to work on finding out what exactly sets Clare off. Since she is due for a cath within the next year, the cardiologists want us to get to the bottom of this before she goes under anesthesia again.

One more procedure behind us. Thank you for all the prayers!

Flying In, Driving Out

I am waiting for Shawn and Clare to return home from their trip to Louisville, Kentucky to see Dr. Mervis. Being that they have a layover in Philadelphia, their flight (of course) is delayed, so I am still waiting for their arrival at home! (No insult to my peeps in Philly, but the airport stinks.)

Dr. Mervis was kind enough to let me conference call in on her chat with Shawn this morning, so I got to hear firsthand the scoop on Clare. Overall, she is doing well and actually scored in the average range as compared to typical children in her verbal and nonverbal reasoning skills (which means she scored quite well as compared to other children with Williams syndrome). When it comes to her spatial skills, however, not so good. Which we expected, knowing Clare as we do. She also is having more trouble than is typical for kids with WS with some language skills. The fact that she is having trouble comes as no surprise since we, her private speech therapist, and her team at school have all noticed that there are some challenges when it comes to language development with Clare. However, it was a surprise to us that this is NOT typical in WS and that Clare is behind in these skills when compared to other children with WS. Definitely something to work on, keep an eye on, and be sure the school knows that it cannot be blown off "just because she has WS." (Not that the school is overlooking it right now, just something to keep in mind when discussing Clare's progress at our next team meeting.) The actual term for Clare's problem is "specific language impairment." Unfortunately, she is about a year too young to administer the actual test for this impairment, but it is certainly something we can work on over the next year and have Clare tested when she visits Dr. Mervis again next February. In the meantime, Dr. Mervis provided some recommendations for what Clare should be working on at home and in school and emphasized that Clare should definitely repeat kindergarten. All in all, I think the visit with Dr. Mervis was successful, but I know I am going to have two very tired people arriving home (hopefully any minute).

We leave at 5:30am tomorrow morning to bring Clare to Children's Hospital Boston for her dental surgery. If all goes as planned, Clare is going to have a tooth extraction, some fillings, x-rays, and a cleaning (what else can they squeeze in dental-wise while she's under anesthesia??). So she will be good to go for another six months. Then Clare and Shawn will stay overnight on the cardiac floor so they can keep an eye out as she recovers from anesthesia. Her surgery is scheduled for 8:30am, so prayers are appreciated!

Surgery Scheduled

Clare's dental surgery is scheduled for February 23, which is perfect. It gives me more than a week to get all my ducks in a row plus it's over school vacation week, so Clare will not miss any school. Clare is only in a half-day morning program so between the Williams syndrome clinic, snow days, and snow delays (kindergarten is cancelled completely when there is a delay), she has already missed so much school over the past few weeks. Yet the surgery is not so far out that my days of freaking out over whether the "bubble" in her tooth has popped and is releasing dangerous bacteria into her bloodstream and potentially her heart is down to only a *short* 11 days.

I will take Clare down to Boston on February 16 to do her pre-op day. This will give us the opportunity to meet with the team involved in the surgery and go over everything. I have been impressed so far with how on top of everything they are (as they should be, but you never know!). The surgical coordinator and I talked yesterday on the phone (about an hour after she called me with the surgery date), and she had already spoken with Clare's cardiologist, pediatrician, and nephrologist to get the approval from them to proceed with surgery. She only needed me to sign a release with the endocrinologist before they would release any information. (Which took me about three minutes thanks to fax machines!) Everyone has given the thumbs up and is on board, so we are ready to go. I will get to talk with cardiac anesthesia on the 16th, but we have dealt with them (too) many times over the past six years, so I know they are usually well-familiar with WS and the associated anesthesia risks.

Clare will have to stay overnight on the cardiac floor following the procedure just to be on the safe side. She has had issues with anesthesia in the past (abnormal rhythms, cardioversions, blood pressure swings), but she was undergoing a catheterization each time, so the doctors were actually in her blood vessels and heart. When she had her fistula surgery eighteen months ago, she did great during the six-hour surgery with anesthesia. She had a lot of trouble post-surgery from the effects of so much anesthesia, though - high fever, vomiting, general yuckiness. The dentist assured me that this was a straightforward procedure, however, and Clare should not be under anesthesia that long. Hopefully an hour tops. So her recovery from the anesthesia should not be as bad. But I am glad they are keeping her overnight so the cardiac nurses and cardiologists can keep an eye on Clare post-surgery. If all goes as planned, she will be discharged the next morning.

I have our childcare lined up, and we are ready to go! Thankfully Clare is only in pain when we go near the tooth, so we are avoiding brushing that part of her mouth until after the surgery. Shawn and Clare are heading down to Kentucky on the Monday and Tuesday prior to her surgery to meet with Dr. Mervis, one of the WS experts in this country. So it's going to be a busy couple of weeks for Clare. Unfortunately, school break is not going to be so relaxing for her!

The Perfect Storm

There are some days when it's just one "problem" after another, and I am on overload at the end of the day and feel like I don't even know if I am coming or going. When Clare was younger, these days happened more often since she was in a more critical condition, so I am out of practice with dealing with them now!

Over the weekend, I noticed that one of Clare's back molars looked funny. Clare has had some cavities for almost a year now that we have been monitoring with our local pediatric dentist (who specializes in children with special needs) and the pediatric dentist at Children's Hospital (who would perform any necessary procedures in an OR setting at the hospital). Since anesthesia is very risky for individuals with Williams syndrome, we have been doing all we can to avoid having any dental work done. In November, Clare had a set of x-rays taken down at Children's, and we were cleared to just continue her care with our local dentist. The cavities had sealed themselves and none of the nerves were in danger. So when I saw that her molar looked black, at first, I thought it was just chocolate (shocker!). But Clare said it hurt when we brushed it, and the "chocolate" did not come off, so I made an appointment to have our dentist take a look. Which was today. And, sure enough, the pulp of the tooth is gone. So she needs a pulpectomy (kids' version of a root canal) and crown. As in yesterday (as the dentist put it). Clare is now at a dangerous point where bacteria getting into the bloodstream is a very real risk.

In addition to our normal running around, today was also allergy clinic day for Jamie (if you're a regular blog reader, you know what hell that is for me!), and we are at the end of Shawn being away for the week at a sales meeting. So my patience is thinner, my tolerance is lower, and my legs and back are killing me from shoveling slush and ice this week. And then I added phone calls to Clare's cardiologist and Boston dentist to my to-do list. We still had not heard back about Clare's echo results, so I wasn't even sure she was cleared to undergo anesthesia right now.

Clare's cardiologist, Dr. S, (finally!) called me back tonight. Right at dinner time. On my cell phone (we get almost no service at our house). So I left four kids at the table with hamburgers and pasta and raced out to answer the call and freeze my tushie, standing on the driveway (neglected to grab a coat or gloves in my rush to pick up before it went to voicemail) while I talked to the cardiologist. But I am not complaining. Really I am not because I was so glad to hear her voice.

The good news is that Clare is cleared for her dental surgery from a cardiac standpoint. She is still clinically stable, and her heart looks good compared to what it used to look like. Dr. S feels that Clare will tolerate the anesthesia well and, as long as cardiac anesthesiology is on board, she gives the thumbs up for the dental procedure. However, the bad news is that her pressures are creeping up again. Her aorta gradient and one of her pulmonary gradients are higher as well. Not dangerously so in that she needs to have something done right away, but we are at the point where her cardiologist is talking "cath." Yuck. Dr. S consulted with the cardiologist who handled Clare's care when she was cathed as a baby, and they agree that within the next 12 months or so, Clare really should undergo a cath. Primarily to get a more exact picture of what is going on in Clare's heart, but, most likely, to do a little work while they are in there. The plan right now is to do another echo in 6-9 months and then schedule a cath from there.

So there's my perfect storm. Too many things piled on top of each other in a chaotic day after a long week for me to think about. I am still waiting to hear back from the dentist at Children's to actually schedule a date. I really do not think the procedure itself is going to be a big deal. It's just more the trepidation of putting Clare under anesthesia combined with the fear that bacteria could get into Clare's bloodstream if this is not taken care of soon. Hopefully I'll hear something before the weekend.

Feeling Sorry For Myself Never Gets Me Anywhere

Clare and I went to see Disney on Ice: Princess Wishes last week. I took Clare last year, and she loved it. Every time we pass the hockey arena, she asks if the princesses are there. So when they came around again this year, I knew we were definitely going. Clare insisted on dressing up as Cinderella that night (she remembered seeing all the other little girls in their princess dresses last year, and she was not wearing one). She was so over-the-top with excitement to go. We had seats with friends of ours, so Clare was thrilled to be with her friends as well.

For me, watching Clare during the show was better than watching the show. She gasped, exclaimed, grinned, was enthralled by the show. Until the big, evil, fire-breathing dragon from Sleeping Beauty appeared on the ice. Fireworks exploded from its mouth and a line of fire blazed on the ice (actually pretty cool from a special effects viewpoint). In one instant, the enchantment was over. It was a hundred times worse than when Cinderella's magic wore off at midnight and her gorgeous carriage was just an old pumpkin again. All of a sudden, my princess was a quivering mess. Sitting on my lap, crying, hands over her ears, which eventually erupted into a full-blown hysterical fit. The evening ended with me carrying Clare out of the arena and into the icy night while she screamed bloody murder.

Clare fell asleep in the car almost immediately, and I cried the whole way home. The horrible part is that I was not crying for Clare. I did feel bad that the dragon scared the you-know-what out of her and put a sour note on the end of our otherwise-wonderful princess-y evening. And I do hope that this does not ruin her anticipation of going again next year. But I admit I was crying for me. For me. For poor, poor me who had to have a child who could not, at the age of almost-six, understand that the dragon was not real. A child whose hyperacussis made those fireworks sound like a thousand times louder than they really were. A child whose body is programmed in such a way that the adrenaline and cortisol rush of the "fight or flight" response lasts four hours in her little body. Four hours of stress hormones racing around her bloodstream, often causing her to become aggressive, hypervigilant, and over-reactive. Sometimes paralyzing her so that she cannot move. It really was a blessing that Clare exhausted herself out and fell asleep because once she is "triggered," it can take awhile for her body to maintain stability again.

So I cried the whole way home. Shawn came out to the garage, carried Clare in, and put her in her pajamas and into bed. He asked if I wanted to talk about it, but I was still so wrapped up in my self-misery and pity-party that I just wanted to go to bed myself.

Waking up to a new day usually helps me gain perspective. And having my little curly-haired girl crawl into bed, put her arms around me, and say, "I'm so sorry, Mommy," made my heart ache. I have challenges in my life. We all do. And, yes, sometimes I think my challenges are greater than other parents because Clare does have so many medical, developmental, and emotional issues and that puts me into my "poor me" state of mind. But then I realize that feeling sorry for myself never gets me anywhere. I cannot wallow in self-pity and spend the day in bed, which would be my preference some days. Something or someone will snap me out of my funk and make me focus, not on the challenges in my life, but on all the blessings. I am not a touchy-feely, mushy kind of girl. I loathe self-help books, Dr. Phil types, and other such devices. But I am finding these days that a dose of perspective, a thought to meditate on, and prayer can get me through. And all the hugs my children will give me!

Happy 8th Birthday, Jamie!

Eight years ago, Shawn and I welcomed our first child into this world. There were many times in our early married life that I thought we would never be able to have a baby as we struggled with some infertility. Then after going six days past my due date, laboring for 24 hours, waiting another agonizing 40 minutes after delivery (Jamie swallowed meconium upon birth, so the NICU team worked on him for a bit), I was in disbelief when I finally held my baby boy in my arms.

Looking at you today, Jamie, I am in disbelief once again that you are that same sweet (BIG!) baby I held eight years ago. I cannot see any of that baby in you anymore. Now I can see glimpses of the young man you are becoming. Your current passions are soccer, reading (and I love that you are engrossed in both Charlotte's Web and The Wizard of Oz - you are so like your mother and grandmother in that you read more than one book at a time!), Manchester Monarchs hockey, and Star Wars (particularly Star Wars Legos). You thrive at school, love to be active, and are better than I am at most puzzles and games. For the most part (*grin*), you are an attentive, patient older brother to all your little siblings. You and Violet especially have a beautiful bond, and you are so sweet to your baby sister.

We are so proud of you, James Michael, and we love you so much! Happy Birthday!