Sunday, January 30, 2011

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!

Wednesday, January 26, 2011

Time to Count

Clare had her visit with the pediatric nephrologist last week. And it was so-so news. The good news is that her kidney scan did not show a significant increase in the amount of calcified tissue in her kidneys compared to her scan six months ago and there was no evidence of kidney stones. The bad news is that the damage that has been done is permanent and that tissue will never function again. The good news is that Clare is still young and her kidneys have lots more growing to do. If we can halt the calcification process now, when she is an adult, a scan will barely show the calcified tissue. The bad news is that if we can't, Clare could face renal failure in the future. It was a lot to take in after a long day at the hospital.

The plan right now is to alter Clare's diet. Not what I wanted to hear from a selfish standpoint! She is on a restricted calcium and low sodium diet now. The sodium is not really a big deal since we are low sodium in our house to begin with. The calcium is another matter. She is not supposed to have more than 800 mg of calcium per day. Which is very tough considering that she used to get about 900-1200 mg from her milk intake alone! Never mind the yogurt, cream cheese, macaroni and cheese, cheese quesadillas, the list goes on and on and on. And now that I am scouring labels, I am finding that so many foods are fortified. For example, the pancakes Clare loves have 200 mg of calcium in them. She has her pancakes and a cup of milk for breakfast, and we are already at over 400 mg. So it's going to be tricky. It's going to take some more planning and figuring on my part. (Such as finding different pancakes for Clare - she eats them daily, so I buy frozen ones because I don't have time every morning to make them from scratch. Now I will find a way to make them where they are lower in calcium and sodium, make a whole batch on the weekend, and freeze them for the week.) It's going to take more forethought in meal planning than I give on most days. I plan my dinners out 1-2 weeks in advance, but breakfast and lunch are almost never planned. Yesterday, I had already planned on trying out a new Tex-Mex recipe for dinner and making cheese quesadillas for those who turned their nose up at my new food (which usually includes four little ones around the table). However, I did not think of that when I fed Clare her pancakes for breakfast, then after a tough day at school (she had been out of school for over two weeks due to doctor's appointments and snow days and is having some readjustment), I promised her macaroni and cheese and chocolate milk for lunch. Dinner comes along, and Clare is already over her calcium and sodium limit. Grrrr... I am sure eventually I won't even have to think twice about the combination of foods in a day, but for now, it's taking a lot to get there!

Clare will see the nephrologist again in March to test her urine and blood calcium again and see how the diet is working. If there is no improvement, then medication is the next option. However, medication for this in children with Williams syndrome is tricky in another way. They do not always absorb calcium properly in their bodies. By Clare's kidneys absorbing the calcium, it is keeping the calcium from being absorbed into her bloodstream and causing hypercalcemia (which can have its own list of symptoms). If the medication keeps the kidneys from absorbing the calcium, then she will have to be monitored to be sure that it does not cause hypercalcemia. It's a balancing act. So, as hard as it will be, I am focusing 100% on keeping Clare's diet in the limits we've been given. (As a medical note of interest, calcium likes to follow sodium around, so the theory with the low sodium diet is that if the amount of sodium going through the kidneys is lowered, then the amount of calcium following that sodium will be restricted, too.)

Also in March, Clare is going to have a vascular scan done of her renal arteries. Based on the renal ultrasound (which is not as good at looking at the renal arteries) and her blood pressure, the nephrologist feels she may have some stenosis in her renal arteries. If the vascular scan does show stenosis, then Clare will undergo a sedated MRA to determine how much stenosis. The vascular scan cannot do this and the MRA would be a one-shot deal, but we are choosing to go with the test that does not require sedation first. We don't put Clare under unless we know we have to! And, if there is stenosis, depending on what is seen on the MRA, we will discuss treatment options from there. Similar to her pulmonary arteries, she may need balloon dilations or stents to open up her renal arteries. For now, we continue praying that all this will work itself out and are grateful that Clare is as healthy as she is.

Friday, January 21, 2011

Happy 2nd Birthday to my Baby!

Happy Birthday to my sweet TWO-YEAR OLD, Violet Grace!!

This is always the year when you stop being my baby and start becoming a big girl. You have changed so much over the past year. You love baby dolls and purses. We often see you pushing your baby dolls around in the stroller with a purse over your arm full of all the essentials a mommy needs – phone, chap stick, bracelets, Lego men. You want to be helpful and your two chores are dust busting under the dining room table and throwing any and all garbage away. You can be the best at picking up toys, but only when you want to and if you consider it fun.

In the morning when I bring you downstairs, you have three questions for me - "Where's Dada?" (sleeping), "Where's mmm mmm?" (your milk which we promptly get from the fridge), and "Where's kitties?" (it's become your job to open the kitty door and call them upstairs). I am continually amazed at how different each child can be, and your favorite foods include bananas, fruit snacks, cheese quesadillas, and hummus with pita chips.

You love your older brothers and sister and want to be involved in all that they do (unfortunately for them sometimes!). However, you also enjoy the mornings when they are all at school. You play by yourself for at least an hour and love having the run of the house. You are still my Mama's girl, though, and most times, you are right by my side.

I love you so much, sweet girl, and a big HAPPY BIRTHDAY to you!

Monday, January 17, 2011

What Has Clare Been Up To??

This is a VERY common question in our house these days! Clare is going through a... shall we say... challenging phase right now. If she is quiet for more than five minutes and we cannot physically see her at that moment, chances are, she's into something she's not supposed to be. (Like I just stopped her from squeezing all the gogurts out onto the kitchen table.) We talk a lot about impulse control, ask first, don't touch, quiet hands, blah, blah, blah. She can parrot everything back to us, but actually controlling herself is another matter. On the plus side, I have ample opportunity to practice the virtue of patience.

We were in our medical lull for a few months, but now it's been back-to-back doctor's appointments. Clare has been seeing the pediatric dentist at Children's Hospital Boston. Shortly before Christmas, her x-rays showed that, with her special toothpaste, her cavities have sealed themselves and were not near the nerves, and we have successfully avoided the OR to have the cavities filled (at least for right now). She can now follow up with our local pediatric dentist. As blessed as we are to be so close to Boston, no trip to Children's Hospital is short or easy, and the pediatric dental office has been the most grueling process so far when it comes to logistics. I am glad these monthly visits are over!

Almost five and a half years after her diagnosis, Clare finally went through the Williams Syndrome Clinic out of Children's Hospital Boston for the first time. We heard varying reports about the clinic and never felt particularly compelled one way or the other to take her. The one thing everyone agreed on was that it was a long, exhausting three-day process. However, after attending the WS convention this past summer and then Clare starting kindergarten, we agreed that it was now the time to bring Clare to the clinic. Due to the weather, Shawn ended up staying with Clare in a hotel in Boston for two nights. They were able to make it home the third night and ventured back out early the next morning. I am glad we waited a few years before doing the clinic because I doubt Clare's stamina could have lasted for the L-O-N-G three days (actually four total since she had the speech evaluation the Friday prior). Since Clare's medical care is very well-supervised, the clinic for her was primarily an evaluation of how she is doing in other areas. She was evaluated and tested with speech therapy, occupational therapy, physical therapy, audiology, behavioral psychology, and neuropsychology. Preliminary reports are that Clare is doing well as a whole (and tested well compared to other children with Williams syndrome). We have to wait a few more weeks for the full reports, which will then give us a chance to see what changes, if any, need to be made at school.

Clare also had her cardiology appointment and echocardiogram while at the WS Clinic. It has been nine months since her last echo (the longest stretch ever!), so we are anxiously awaiting the results. Due to the structure of the clinic, Clare's cardiologist did not review the echo prior to meeting with Clare and Shawn, so she could not relay the results immediately. Now, a week later, we still have not heard back from the cardiologist. (And, yes, we have called, e-mailed, and Shawn stopped in on their last day of clinic.) Part of my brain believes that Clare's heart remains stable and we can keep chugging along. She shows no symptoms at home of having any trouble and her blood pressure has been relatively under control (without any meds). However, the other part of me keeps saying that it has been over three years since Clare had a cath done, so our time has to be up soon. At some point in the future, Clare will need another open heart surgery to remove the existing stents in her pulmonary arteries and insert bigger ones. When the initial stents were inserted at five months old, the cardiologist predicted then that Clare could possibly get to the age of 10 before that would need to be done. It's hard to believe we are already over halfway to that point. So I will breathe much easier once we hear the echo results.

In new developments, I am taking Clare up to Children's Hospital at Dartmouth (about an hour north of us) to meet with her new doctor, a pediatric nephrologist. Clare had a renal scan performed last summer in Boston which showed calcium deposits in her kidneys. After that finding, Clare underwent multiple rounds of blood work and urine tests to monitor the calcium in her body. Her blood calcium levels have been slightly above the normal range, so she is considered to be borderline hypercalcemic. Her urine tests showed that she is excreting calcium in her urine as well,. Many children with WS have problems with hypercalcemia (for some reason, individuals with WS have trouble absorbing calcium properly). Clare was borderline hypercalcemic when she was a toddler, but was always asymptomatic, so we never did anything about it. Now, however, since the calcium is showing up in her blood, urine, and kidneys, it's time to do something. Clare's endocrinologist did another round of blood work and urine tests a couple weeks ago (since he had to test her thyroid levels, do it all with one stick!), and I have a CD of Clare's renal scan from last summer to bring with us. Clare will have another scan (for comparison) tomorrow, then we will meet a few hours later with the nephrologist to discuss the results and what treatment, if any, is necessary. I am just praying that we do not have to alter Clare's diet too much. Being a limited food eater, dairy is a huge component of Clare's diet - she gets the majority of her calories from milk, macaroni and cheese, cream cheese, and yogurt!

I will be glad to get all these appointments behind us and return to our schedule. Due to the clinic, snow days, and holidays, Clare will miss almost two weeks of school. We are all craving our routine!

Wednesday, January 12, 2011

My Little Friend

No matter what I am doing in the kitchen, Violet is always right there with me. Right now I am obviously on the laptop, and she immediately pushed a chair right next to mine. She is standing on her chair scribbling on a scrap paper next to me as I type. (And proclaiming "Ta da!" after everything she scribbles so I can properly admire it.) When I am cooking, a chair gets pushed over to the counter or stove so Violet can see what I am doing. This often involves looking at all the utensils in the drawer or reorganizing my Keurig caddy. Sometimes it means going through the spices or examining Clare's bag of bite blocks and mouth exercise toys or rearranging the vitamins and prescription bottles. Whatever it is, it ALWAYS involves a mess, makes my chore or project even longer, and answering over and over, "What's this, Mama? What's this, Mama?" It also is one of the sweetest parts of my day.

Each of my babies seem clingier than the last. I don't know if that is really true or just my perception because my days are busier and there are many times I would love them to be less clingy! Violet has been very mommy-attached since day one (as daddy, aunts, and grandparents can attest to!). When I had kidney surgery over a year ago, we weren't sure if Violet would survive unscathed. Leaving her in the childcare room at the gym was a nightmare for months. Looking back, Violet has come a long way in being more independent. On those two mornings a week when the three older kids are in school, Violet actually enjoys her independence from me and her older siblings. We have about an hour to ourselves between drop-offs and pick-ups, and Violet loves to go off and play by herself. I can hear her singing to herself and talking to her baby dolls. As clingy as she seems to be sometimes, I do believe that she is a child secure in the love and presence of her mommy which enables her to play independently for longer periods of time than her siblings were at almost two years old.

Whatever the psychology behind it, my little friend and I are going to have our worlds re-adjusted in about five months when the baby comes, so we are enjoying these days together.

Thursday, January 06, 2011


Last week, I was surrounded by children, toys, presents, candy, boxes, bags, and garbage, garbage, and more garbage. We were unexpectedly snowed in down in RI at the beginning of the week and missed garbage day. After Christmas is not a good time to miss garbage day! Between regular household trash and all the wrappings and boxes from Christmas, it started to line the garage walls, coming up into the mudroom, and paper and recyclable refuse had its own little corner in the kitchen. By the end of the week, Shawn started parking in the driveway so the trash could pile in his spot in the garage. We truly were overwhelmed with abundance!

In my wildest imaginings, I never pictured myself as a stay-at-home mom of four (soon to be five) children. Growing up, babysitting was a necessary evil to earn some money. I entered college as a double science major/pre-med and still entertained my fantasy of becoming a forensic pathologist. Even after I realized during my sophomore year that science was not my true love and switched majors, I still yearned for academia and a career. I loved history and starting dreaming about higher education, scholarly theses, and college professorships. I started dating Shawn in my sophomore year. No lightning bolt struck me, no voice of God in my head telling me he was the one, but everything did change. A few months after I graduated with my history degree, we were married.

Looking back at my life, it amazes me to see the pieces fall into place. (Some of them at least!) Switching majors, graduating with a degree that I was questioned about again and again, "What are you going to do with a history degree??", accepting a job at a local insurance company which then relocated me to New Hampshire. There were times when I did wonder what I was doing and what path was I on. But Shawn and I were in this together, and that's all that really mattered to me. Now I know why I only had a job and not a career. Shortly before Jamie was born, I quit working completely. I enjoyed my job, but I did not think twice about leaving it. I have never missed working one day since I had my children. I am glad I did not spend all that time and money pursuing degrees and careers that might cause an internal struggle of career versus motherhood. I have never felt shortchanged or that I gave anything up when I chose to become a stay-at-home mom. I know now that THIS is what I am supposed to do, where I am supposed to be, who I am.

So, on this celebration of the birthday of my dear husband, I want to wish Shawn a very happy birthday. I cannot imagine my life now without you and this abundance of life, joy, and love that surrounds us. I love you! Our quiver is indeed full!

“Behold, children are a gift of the Lord; the fruit of the womb is a reward. Like arrows in the hand of a warrior, so are the children on one’s youth. How blessed is the man whose quiver is full of them; they shall not be ashamed, when they speak with their enemies in the gate.”
--Psalm 127:3-5

Tuesday, January 04, 2011


With his allowance, Jamie purchased a booklight for himself at the dollar store a few weeks before Christmas. Since the boys share a room, on nights when Simon lost the privilege of having reading time in bed (which actually happens quite frequently!), Jamie was allowed to use his booklight to read in bed when all the room lights were shut off.

Simon coveted that booklight. Jamie is very possessive of his little light and kept it in a safe place so his younger siblings could not touch it or, more aptly, break it. Simon worked diligently for weeks on filling up his sticker chart solely for the purpose of possessing a booklight. (Simon and Clare earn a selection from the dollar store once their sticker chart is complete in lieu of getting an allowance.)

Yesterday was the big day in which Simon became the proud owner of his own booklight. And his older brother obviously inducted him into the Secret Society of Booklight Owners. Today in the car, I overheard Simon telling Clare: "You know what Jamie told me? Jamie told me that when Mom comes in the room and says 'lights out,' when she leaves, that's when we can turn on our booklights and continue reading with our booklights!"